Autoimmune Thyroid Disease

[CJ2008]

missy sorry to hear you were underwhelmed by this new Dr...

 

[jaaron]

Hi Jaaron, thank you for the added info. I am glad you found the perfect combination for you and that you are doing well. It is a process I know.

I left the new endocrinologist this afternoon feeling a bit underwhelmed with her. I chose her thinking ok young endocrinologist and hopefully will cutting edge not old and set in her ways. Well nope. She was conventional and by the mainstream medical textbook. This endocrinologist diagnosed me with Hashimotos from the blood work (just from my TPO results) and felt my thyroid (which felt normal size) but didn't think it necessary to get other blood work nor do any other tests.

She wants me to go on thyroid meds but she refused to put me on the Armour as she said it is too potent for me. Something about receptors in the heart being sensitive to T4 (I guess the Armour is T4 and the Levothyroxine/Synthroid is T3). So she put me on 25 mg of Levothyroxine to start and is seeing me back in 3 months and will repeat blood work then. She told me take it first thing in AM on an empty stomach so I have to rearrange my Oracea med schedule. I am debating what to do. I think I will try it and see how my body feels on it. She did say I could stop at any time if I am getting any side effects but that would be rare.

I asked her about supplementation and diet etc and she nixed it all saying diet has nothing to do with hashimotos. And that there was no way to reverse it. I do not agree completely with her way of thinking as diet/food is medicine in a very real way and to pooh pooh it is just not right IMO.

I did just pick up Brazil nuts on my way home. They are HUGE haha. But very tasty and I am going to start with one a day.

Hope you are having a wonderful dinner party and thank you for taking the time to share info and help me.

Hi Missy,

I'm sorry, too, that you were underwhelmed by the endo. My best advice is to go on the medication, but keep looking around for someone you click with.

OK, so the Armour vs. Levothyroxine/Synthroid, in a nutshell:

Armour and Erfa (the Canadian equivalent of Armour) are made from desiccated pig thyroid and contain roughly the same hormones in the same ratios as human thyroids are meant to make- they have both T4 and T3 (and I think, in very small amounts some other lesser thyroid hormones).

T3 is the active thyroid hormone, and the one that most conventional doctors have been taught, mainly by drug companies, to live in fear of, which is why your endo told you that thing about your heart. In addition to the NDTs, there is synthetic T3 available called Cytomel or Liothyronine. I did try those alongside Synthroid for a while and had pretty good results until there were issues with batch strength inconsistencies.

Levo/Synthroid are synthetically manufactured and contain only T4, which is the inactive hormone (actually, I think a pre-hormone). The idea behind it is that your body breaks the T4 down into the components you need, including T3. For most people this works. Synthroid does the job it's meant to. But for some people, it either doesn't work or eventually stops. Additionally, I believe people generally feel they do better in the long run on NDTs. That said, there's no reason to necessarily assume right off the bat that Synthroid won't do what it needs to do in your case, which really is mainly to provide just enough extra hormone to calm your thyroid enough that it's not in overdrive.

And one more point - I think your endo should do some reading as there's some pretty convincing thinking that Synthroid works best when taken at night, right before bed rather than first thing in the morning.

I hope you're feeling slightly less overwhelmed. Big hugs, Missy.

 

[caf]

Missy - I found the LDN pub med articles/summaries I have. Want me to copy and paste in here or email?
yes, I’m really fortunate to have doctors who think outside the box, Frankly it has taken me probably 30+ years to get a dr to really pay attention to ALL my thyroid test results and not just say synthroid should take care of them. I got a new pcp in the last year or two and she is the one who put me on cytomel (in addition to my synthroid). Unfortunately with RA, as you probably know with your mom, it’s a nasty unpredictable disease. Hashimotos can be too.
As to supplements, mine are fish oil, biotin, turmeric, vit d and folic acid.
Anyway, sorry this is happening to you. Maybe see an immunologist?
CAF

 

[caf]

Oh one other thing- my pcp was willing to put me on Armour but she had concerns about quality control. I think it had to do with pharmacies getting in Armour “similars” and substituting when Armour was on short supply ( which I understand it can be).

 

[missy]

Hi Missy,

I'm sorry, too, that you were underwhelmed by the endo. My best advice is to go on the medication, but keep looking around for someone you click with.

OK, so the Armour vs. Levothyroxine/Synthroid, in a nutshell:

Armour and Erfa (the Canadian equivalent of Armour) are made from desiccated pig thyroid and contain roughly the same hormones in the same ratios as human thyroids are meant to make- they have both T4 and T3 (and I think, in very small amounts some other lesser thyroid hormones).

T3 is the active thyroid hormone, and the one that most conventional doctors have been taught, mainly by drug companies, to live in fear of, which is why your endo told you that thing about your heart. In addition to the NDTs, there is synthetic T3 available called Cytomel or Liothyronine. I did try those alongside Synthroid for a while and had pretty good results until there were issues with batch strength inconsistencies.

Levo/Synthroid are synthetically manufactured and contain only T4, which is the inactive hormone (actually, I think a pre-hormone). The idea behind it is that your body breaks the T4 down into the components you need, including T3. For most people this works. Synthroid does the job it's meant to. But for some people, it either doesn't work or eventually stops. Additionally, I believe people generally feel they do better in the long run on NDTs. That said, there's no reason to necessarily assume right off the bat that Synthroid won't do what it needs to do in your case, which really is mainly to provide just enough extra hormone to calm your thyroid enough that it's not in overdrive.

And one more point - I think your endo should do some reading as there's some pretty convincing thinking that Synthroid works best when taken at night, right before bed rather than first thing in the morning.

I hope you're feeling slightly less overwhelmed. Big hugs, Missy.

Thanks Jaaron, I appreciate the info. I think I am discontinuing the thyroid med for now. IDK for sure if it is from the thyroid med or a coincidental symptom but I have this heavy weight feeling on my chest since starting it 2 days ago so since I am stopping it for now. When I saw the endocrinologist Tuesday I asked her if I had a bad side effect could I just stop the med and she said yes. I am going to take my time and re-evaluate my options.

I also read the best time of day could be night but that it depends. LOL just like with everything there is no straight answer. I think (just an educated guess) that this endocrinologist told me to take it in the AM due to having to take it on an empty stomach. I agree with you that this endocrinologist should have mentioned that to me as an option. She did not. What she also didn't tell me was not to take it with coffee which I just read I shouldn't do. That might seem silly to you that I didn't realize it but I thought she meant food and supplements and did not realize coffee itself can interfere with the action.

Another question if I may. Do you think (if my reaction is from the Levothyroxine) that if I ask for Synthroid I might not get that weird side effect? I know you probably don't know and I would just have to try it but now I am wary. I read that the generic might have fillers in it but I don't know about the name brand Synthroid.


Thanks again Jaaron, I so appreciate your informative posts.

 

[missy]

Missy - I found the LDN pub med articles/summaries I have. Want me to copy and paste in here or email?
yes, I’m really fortunate to have doctors who think outside the box, Frankly it has taken me probably 30+ years to get a dr to really pay attention to ALL my thyroid test results and not just say synthroid should take care of them. I got a new pcp in the last year or two and she is the one who put me on cytomel (in addition to my synthroid). Unfortunately with RA, as you probably know with your mom, it’s a nasty unpredictable disease. Hashimotos can be too.
As to supplements, mine are fish oil, biotin, turmeric, vit d and folic acid.
Anyway, sorry this is happening to you. Maybe see an immunologist?
CAF

Oh one other thing- my pcp was willing to put me on Armour but she had concerns about quality control. I think it had to do with pharmacies getting in Armour “similars” and substituting when Armour was on short supply ( which I understand it can be).

Hi caf, thanks so much for the info. I am very pleased for you that you finally found a PCP who really cares about you as the whole person and not just a bunch of "numbers".

You can contact me here:

https://loupetroop.com/listings/other/for-any-of-the-nirdis-its-missy

Or you could share it here if it could help others too. Whichever you prefer. Thank you very much.

Thanks for sharing the supplements you are taking and that is a good idea about perhaps I should see an immunologist.

Now that is a concern about the quality control of Armour. What should I do. I was thinking I could request (from another endocrinologist when I find one) the NDT but is that still a concern about the quality control? Do you live in the USA caf? So you are currently taking Synthroid (brand name) and Cytomel and do not take an NDT and that is because of quality control concerns here. Just want to make sure I am understanding correctly. I also think my brain has been foggy for a while and that could be because of my thryoid issues. Doubly frustrating because I am not thinking as clearly as I need to be and I cannot unless I find the right doctor for me.

@jaaron I know you are not in the USA but can you weigh in on this issue with NDT and quality control. Is there a specific NDT you recommend that might not have these issues? Thanks again.

 

[jaaron]

Hi Missy,

What dosage did she prescribe for you?

I'm sorry the levo made you feel strange. I vaguely recall having some odd feelings the first week or so when I first started on it (thousands of years ago). I would tend to suspect that your body is having a slight reset from having a bit of thyroid hormone going in. If it were me, I might switch to taking it at night and give it a slightly longer trial? The issue of Synthroid vs generic, sigh- that's always the problem with this. It could well be you feel better on one than the other (which is most likely to be due to a difference in fillers or colours or some inactive ingredient), but because it's takes a while to feel changes with thyroid stuff, it's always difficult to pinpoint exactly what's causing what. Which, I suppose is why, most of us thyroid patients tend to cling tooth and nail to any combination that feels like it's working.

Case in point - I'm not in the US, but I do take Armour, which is the American brand of NDT. Last year, I tried Erfa (the Canadian one) because it was less expensive to get here, and for no discernible reason, didn't feel as good on it as on Armour.

I believe several years ago, there was an issue with the Armour quality control and at that point they changed the formulation. I have been on it for 3 or 4 years and have never run into any problems with it. In fact, in my experience, the only quality control issues I've run into have been with the lab-created T3. Of course, no one's testing and releasing information on each batch of that, but my endo says he can tell when that's happened because all his T3 patients start calling in for appointments to check their levels. Armour is now manufactured by Forest Laboratories, which is a major pharma company, so I'd guess it's subject to the same quality controls as anything else.

The real problem is that the manufacturers of Synthroid were so effective at getting their message out, most doctors don't even learn about alternatives in medical school, and have no understanding of them. Synthroid is the second most commonly prescribed drug in the US- there's no way most doctors are interested in stepping out of that comfort zone and exploring the alternatives.

 

[Cluless]

Missy, sorry to hear about your thyroid troubles. I am going through my own hell with the opposite I was diagnosed with Graves 12 years ago but have all the symptoms of Hashimotos,go figure. Any ways found this blog may have some good information for you, one thing she said that I never thought about was ask your pharmacist for a list of doctors that prescribe the medications you want to try, it can be a good starting point for you, good luck my dear.

https://thyroidpharmacist.com/articles/which-thyroid-medication-is-best/

 

[cmd2014]

Missy,

It can take a while to feel better on thyroid supplementation. Heart palpitations, sweating, etc., are common until you adjust. I have Hashimotos and have done well on Synthroid for 30 years (actually I’m on generic levothyroxine). I can tell just from how I feel if I need to adjust up or down (your dose can be stable for years and then suddenly be a bit high or a bit low). Cold, dry skin, tired, no appetite but gaining weight, depressed, breaking hair = low; revved up, heart palpitations, sweating, hungry, can’t sleep = too high. The regular blood work has always been enough to confirm my clinical symptoms, if that helps. I don’t bother either with the instructions about how to take the meds (my sister who is newly diagnosed is fanatical about taking hers on an empty stomach, at the same time daily at 6am, with gallons of water, etc.) and I take mine when I get up, with my coffee and breakfast, and I figure I’ll just adjust my dose for real life conditions. So if I take .25 mg more to account for the loss in absorption because of my coffee...oh well. I know how I feel and my blood work confirms when I need to adjust, so it works out.

One caveat. I was recently convinced my thyroid was off. But my blood work was normal. I was annoyed at my doctor “for not listening to me” and refusing to adjust my meds. Turns out on a wider panel that my iron levels were way high (I apparently have a hereditary thing that makes this an occasional issue). I did a simple blood donation and I was back to normal. So it’s important to listen to your body, but sometimes the things we are convinced are happening are really something else.

Oh, and diet did *nothing* for me (not for this nor for my other auto immune issues), nor have many well designed clinical trials supported the claims of the AIP (or ther diet based) protocols for controlling inflammation. The main findings have been a placebo effect, other than for a minority of people with food allergies/sensitivities. So it may work for some, but not for others. My experience has been that most endocrinologists/rheumatologists are aware of this research, even though it may not be what the current zeitgeist is. They generally say that unless you’re on certain classes of medications that contraindicate certain diets, it won’t hurt if people want to try it. It might work for some people, but it probably won’t help a majority of others.

 

[missy]

Hi Missy,

What dosage did she prescribe for you?

I'm sorry the levo made you feel strange. I vaguely recall having some odd feelings the first week or so when I first started on it (thousands of years ago). I would tend to suspect that your body is having a slight reset from having a bit of thyroid hormone going in. If it were me, I might switch to taking it at night and give it a slightly longer trial? The issue of Synthroid vs generic, sigh- that's always the problem with this. It could well be you feel better on one than the other (which is most likely to be due to a difference in fillers or colours or some inactive ingredient), but because it's takes a while to feel changes with thyroid stuff, it's always difficult to pinpoint exactly what's causing what. Which, I suppose is why, most of us thyroid patients tend to cling tooth and nail to any combination that feels like it's working.

Case in point - I'm not in the US, but I do take Armour, which is the American brand of NDT. Last year, I tried Erfa (the Canadian one) because it was less expensive to get here, and for no discernible reason, didn't feel as good on it as on Armour.

I believe several years ago, there was an issue with the Armour quality control and at that point they changed the formulation. I have been on it for 3 or 4 years and have never run into any problems with it. In fact, in my experience, the only quality control issues I've run into have been with the lab-created T3. Of course, no one's testing and releasing information on each batch of that, but my endo says he can tell when that's happened because all his T3 patients start calling in for appointments to check their levels. Armour is now manufactured by Forest Laboratories, which is a major pharma company, so I'd guess it's subject to the same quality controls as anything else.

The real problem is that the manufacturers of Synthroid were so effective at getting their message out, most doctors don't even learn about alternatives in medical school, and have no understanding of them. Synthroid is the second most commonly prescribed drug in the US- there's no way most doctors are interested in stepping out of that comfort zone and exploring the alternatives.

Hi Jaaron, I was prescribed .25mg levothyroxine. Thank you for the detailed explanation. I still feel very uncomfortable so I’m not sure what I will do. I don’t think I want to continue with the Levo. I have this weird heavy eeling in my chest. Like a weight on it.

I saw David (my derm) this morning for an eyebrow skin follow up (no relief there yet) and told him about my endocrinologist appointment this past Tuesday. He thinks I should call the endocrinologist and ask for synthroid. He agrees the fillers in the generic might be the problem. He isn’t a fan of NDT but I didn’t expect him to be. As much as I respect his knowledge and advice he falls short on the more holistic approach and is very conservative.

So right now my thoughts are to call the new endocrinologist next week and ask for synthroid to be prescribed and try that in the evenings. My challenge will be taking it on an empty stomach. I am not sure how far from Food I’m supposed to take it and we eat dinner around 6:30 and done till after 7pm most days and I’m generally getting ready for bed around 9/9:30. So will have to figure out if I need to change anything.


I so appreciate your detailed and informative posts. Thank you!

 

[missy]

Missy, sorry to hear about your thyroid troubles. I am going through my own hell with the opposite I was diagnosed with Graves 12 years ago but have all the symptoms of Hashimotos,go figure. Any ways found this blog may have some good information for you, one thing she said that I never thought about was ask your pharmacist for a list of doctors that prescribe the medications you want to try, it can be a good starting point for you, good luck my dear.

https://thyroidpharmacist.com/articles/which-thyroid-medication-is-best/

Thank you Cluless. I’m sorry you’re going through hell too. Thank you so much for the blog link. I am going to read it. Wishing you good luck and may you find relief very soon.

 

[missy]

Missy,

It can take a while to feel better on thyroid supplementation. Heart palpitations, sweating, etc., are common until you adjust. I have Hashimotos and have done well on Synthroid for 30 years (actually I’m on generic levothyroxine). I can tell just from how I feel if I need to adjust up or down (your dose can be stable for years and then suddenly be a bit high or a bit low). Cold, dry skin, tired, no appetite but gaining weight, depressed, breaking hair = low; revved up, heart palpitations, sweating, hungry, can’t sleep = too high. The regular blood work has always been enough to confirm my clinical symptoms, if that helps. I don’t bother either with the instructions about how to take the meds (my sister who is newly diagnosed is fanatical about taking hers on an empty stomach, at the same time daily at 6am, with gallons of water, etc.) and I take mine when I get up, with my coffee and breakfast, and I figure I’ll just adjust my dose for real life conditions. So if I take .25 mg more to account for the loss in absorption because of my coffee...oh well. I know how I feel and my blood work confirms when I need to adjust, so it works out.

One caveat. I was recently convinced my thyroid was off. But my blood work was normal. I was annoyed at my doctor “for not listening to me” and refusing to adjust my meds. Turns out on a wider panel that my iron levels were way high (I apparently have a hereditary thing that makes this an occasional issue). I did a simple blood donation and I was back to normal. So it’s important to listen to your body, but sometimes the things we are convinced are happening are really something else.

Oh, and diet did *nothing* for me (not for this nor for my other auto immune issues), nor have many well designed clinical trials supported the claims of the AIP (or ther diet based) protocols for controlling inflammation. The main findings have been a placebo effect, other than for a minority of people with food allergies/sensitivities. So it may work for some, but not for others. My experience has been that most endocrinologists/rheumatologists are aware of this research, even though it may not be what the current zeitgeist is. They generally say that unless you’re on certain classes of medications that contraindicated certain diets, it won’t hurt if people want to try it. It might work for some people, but it probably won’t help a majority of others.

Thank you for your post. Very helpful. Makes me feel better about taking it with coffee lol. I need my coffee desperately in the am and also about the diet info. It’s hard not knowing what is the right thing to do and I know everyone varies so it is so helpful to hear your perspective. The AIP diet scares me because there are some foods I cannot eat and the foods I eat may clash with the AIP Protocol. I need to do more reading. My brain is having trouble retaining info these days so I’m finding it more challenging than usual to do research.


My ferritin is low but my iron is normal and I am menopausal so I’m not sure what to do. David wants me to take centrum silver but I’m not even sure it has iron and again I don’t know enough about this. If I take iron will it raise my ferritin levels? I didn’t get an answer from David.

Thanks so much for weighing in. I appreciate your help.

@jaaron do you know anything about ferritin and how to raise it without increasing my iron?



@CJ2008 thanks so much for your good wishes!

 

[marymm]

Missy, I forget if you also take Iron supplements? which does not play friendly with thyroid medication ... the 2 should be taken at least 2 hours apart.

I've been hypothyroid since 1992. It took a good 18-24 months in the beginning to find the right dosage for me, and I was taking Levoxyl (or its name brand equivalent). I stayed at that dosage level for many many years (being tested every 2 years to ensure it was still right for me). Throughout those years, at one point I was given Synthroid, which I did not like at all. I couldn't get off Synthroid soon enough. Between insurance/co-pays/pharmacy issues, I ended up trying the generic levothyroxine, which has worked just fine for me for these last 10 years through present.

Last year, due to bloodwork results indicating a change of dosage was needed, my dosage was dropped, 3 times, over a course of 9 months. I fretted a bit about it, since I'd been at my prior dosage for so long, but it turns out my new/current dosage is really perfect for me, and I feel like me such that I know the dosage change was needed and appropriate.

Treatment is kind of by trial and error, since there's the subjective factor in addition to the bloodwork numbers ... are you sleeping/waking okay, is your weight/eating habits okay, is your skin/hair/nails okay ["okay" meaning, okay to you]. The "normal" range of TSH levels is 0.4 to 4.0, and you may feel better once you're on medication with results that fall on the lower end or the higher end.

It can take quite a while before you feel like "you" but once you get there, at least for me, I really felt like I was altogether "me" again in a way I hadn't realized I hadn't been for what likely was years.

If you have other health concerns that take priority, so be it; but I would encourage you to try to fit in addressing your TPO numbers in a way that works for you.

 

[missy]

Missy, I forget if you also take Iron supplements? which does not play friendly with thyroid medication ... the 2 should be taken at least 2 hours apart.

I've been hypothyroid since 1992. It took a good 18-24 months in the beginning to find the right dosage for me, and I was taking Levoxyl (or its name brand equivalent). I stayed at that dosage level for many many years (being tested every 2 years to ensure it was still right for me). Throughout those years, at one point I was given Synthroid, which I did not like at all. I couldn't get off Synthroid soon enough. Between insurance/co-pays/pharmacy issues, I ended up trying the generic levothyroxine, which has worked just fine for me for these last 10 years through present.

Last year, due to bloodwork results indicating a change of dosage was needed, my dosage was dropped, 3 times, over a course of 9 months. I fretted a bit about it, since I'd been at my prior dosage for so long, but it turns out my new/current dosage is really perfect for me, and I feel like me such that I know the dosage change was needed and appropriate.

Treatment is kind of by trial and error, since there's the subjective factor in addition to the bloodwork numbers ... are you sleeping/waking okay, is your weight/eating habits okay, is your skin/hair/nails okay ["okay" meaning, okay to you]. The "normal" range of TSH levels is 0.4 to 4.0, and you may feel better once you're on medication with results that fall on the lower end or the higher end.

It can take quite a while before you feel like "you" but once you get there, at least for me, I really felt like I was altogether "me" again in a way I hadn't realized I hadn't been for what likely was years.

If you have other health concerns that take priority, so be it; but I would encourage you to try to fit in addressing your TPO numbers in a way that works for you.

Thank you marymm. I’m glad you found your feeling good range and really appreciate you sharing your experience with me. Yes trial and error. I just need to find doctors who will hear me and not just look at my numbers. My derm is great but he’s not an endocrinologist and I have to find a good integrative endocrinologist.

My iron is normal and I don’t take iron supplements. I’m menopausal and my iron has always been normal high. My ferritin is low (30) and my B12 is on the low side too. I just started taking B12 supplements but not sure how much gets absorbed. As for ferritin I want to increase it but not sure how. I have more research and weeding out fact from fiction to do.

David (my dermatologist) told me yes I have lots of autoimmune stuff but he feels I’m just on the cusp of things and he agrees with me I’m pretty healthy despite all my autoimmune issues. I’ve always felt healthy despite all the conditions I have and i needed that confirmation this am as I was feeling a bit down with all the latest findings.


My weight is steady at 112 lbs (I’m 5’6”) but my nails are brittle but have been for a long time and same for hair. So not sure if I’ve had this for a long time or if it’s new. I was never before tested for TPOs before a few months ago so I just don’t know.

What about synthroid did you not like? Why do you think the generic is good for you vs the brand? I know we are all different but while I read there are fillers in the generic that might not agree with some I wonder what it was about the synthroid that didn’t agree with you whereas the generic was good. Did you ever try NDT? Sorry for all the questions lol. I’m just trying to learn as much as I can and hearing real life people’s experiences is helpful for me to process things.

What you wrote makes sense and yes I have to find my way in a way that works for me. I’m just not sure what that is yet.
Thanks so much for weighing in.

 

[Sunstorm]

Hi dear,

Just want to say I am so with you. My mother had this along with other things. She had serious autoimmune disease from her early twenties. The thyroid in her mid thirties. Had it out. It may not be a bad idea to get tested for HLAB gene modification. I am also going in to get tested for this, many doctors do not know the HLAB gene modification but will start with thyroid. I think I told you that because she has several and life threatening autoimmune conditions, her prognosis was to not live beyond 40 and unable to have children. She has two and she is 64. She did everything to help herself beat the odds, holistic medicine as well.

My problems started with extreme hair loss, my dental abscesses, other weird signs were involved like severe lymph node problems, I was then cleared of lymphoma. I also started gaining weight then, I used to be very thin.

I too have allergies, very weird skin symptoms, along with the first lymph involvement I lost all my eye lashes. Later my hair came out in chunks. I was also hit with some depressive and anxiety signs. Since the symptoms are so vague, many doctors fail to find it in patients.

I need to go through serious testing as well. May not hurt if you check your temperature too though many do not get elevated temps but rather reduced body temperature. I used to. In the last couple of years especially now, started getting elevated temps.

Autoimmune diseases like to go hand in hand. I have Crohn´s as well. Just a note to make sure you get a correct diagnosis but I think since you do not feel so weak, I suspect they caught it very early. At least that is a relief. They can spare you of a lot of suffering.

I will ask my mom for advice especially since she is a doctor and a derm herself.

Cheer up, things will get better for you now!

 

[missy]

Hi dear,

Just want to say I am so with you. My mother had this along with other things. She had serious autoimmune disease from her early twenties. The thyroid in her mid thirties. Had it out. It may not be a bad idea to get tested for HLAB gene modification. I am also going in to get tested for this, many doctors do not know the HLAB gene modification but will start with thyroid. I think I told you that because she has several and life threatening autoimmune conditions, her prognosis was to not live beyond 40 and unable to have children. She has two and she is 64. She did everything to help herself beat the odds, holistic medicine as well.

My problems started with extreme hair loss, my dental abscesses, other weird signs were involved like severe lymph node problems, I was then cleared of lymphoma. I also started gaining weight then, I used to be very thin.

I too have allergies, very weird skin symptoms, along with the first lymph involvement I lost all my eye lashes. Later my hair came out in chunks. I was also hit with some depressive and anxiety signs. Since the symptoms are so vague, many doctors fail to find it in patients.

I need to go through serious testing as well. May not hurt if you check your temperature too though many do not get elevated temps but rather reduced body temperature. I used to. In the last couple of years especially now, started getting elevated temps.

Autoimmune diseases like to go hand in hand. I have Crohn´s as well. Just a note to make sure you get a correct diagnosis but I think since you do not feel so weak, I suspect they caught it very early. At least that is a relief. They can spare you of a lot of suffering.

I will ask my mom for advice especially since she is a doctor and a derm herself.

Cheer up, things will get better for you now!

Dear Sunstorm, thanks for chiming in and I am so sorry for all you and your mom have been through. And I am relieved she is doing so well. I am sorry about your Crohn's diagnosis. Is that new?

You know much of my medical history and like you I am allergic to almost everything. My body temperature was actually checked (98.2) as my oxygen (which was low on left finger and normal on the right).

I know too well about AI diseases traveling in groups. I think I have over 10 lol but they are not severe and I am feeling generally well. I want to keep it that way of course and there are symptoms I have been experiencing which led me to explore further and get the Hashimoto diagnosis. You are quite right. The earlier we catch these diseases more often the better the prognosis.

The good news is a friend of mine just contacted me with an Integrative holistic medicine specialist here in NYC who her friend highly recommends and in fact her friend sees him for her Hashimoto disease. While he is an internist he is well versed in diseases of the thyroid and I made an appointment to see him. My appointment is March 19th so not too far away. He accepts no insurance of course but all I care about is if he is good. Then he is worth his weight in gold...haha what is gold trading for these days?

Thanks so much for your post and sending you healing hugs and lots of good wishes. XOXO.

PS @ILikeShiny I just ordered 2 of Mary Shomon's books and downloaded them and am reading them now on my computer. She is great thank you!

I also ordered the hard copy version of Hashimoto's protocol by Izabella Wentz PharmD. It looked like a good book. Has anyone heard of her or read her books before?

Hashimoto's Protocol: A 90-Day Plan for Reversing Thyroid Symptoms and Getting Your Life Back
Izabella Wentz PharmD

 

[Sunstorm]

Thanks dear Missy! I just came across her website and started reading it, it shows how much my dental problems may have made it worse. Also, how I thought I was having heart problems where in fact it was the Hashi.

I think we should share what works for each of us. This can be really not easy to live with especially since these autoimmune conditions so like to go hand in hand.

I now also know why I could not maintain a pregnancy when I so wanted to have a child.

The Crohn´s I have had since childhood. My sister not as long as me. I learnt to live with it. I suffered with it a lot through college when I sometimes wished I would just die. You can imagine I had to pass exams while throwing up in the morning and living with fever. I was managed to be put under control in my father´s hospital and I am usually fine with it. So used to be by now.

It was so weird to me though that I felt in my mid thirties that I am becoming ugly with puffy eyes, losing my hair, eye lashes, my beautiful white teeth and on top gaining some weight. I went up from like 110 to around 135 even if I hardly ate. Today I am fine with myself but I would like to feel better and I am sure you understand all of this.

Your reaction to the meds could be the weird, vague symptoms I have had that felt heart related. I totally understand that you want to stop the med because these symptoms are scary. A great endocrinologist is crucial in my opinion. So many things can go wrong and can be right depending on the right doctors.

I hope you will keep sharing all your news about your health and you know that I am thinking of you.

 

[missy]

Thanks dear Missy! I just came across her website and started reading it, it shows how much my dental problems may have made it worse. Also, how I thought I was having heart problems where in fact it was the Hashi.

I think we should share what works for each of us. This can be really not easy to live with especially since these autoimmune conditions so like to go hand in hand.

I now also know why I could not maintain a pregnancy when I so wanted to have a child.

The Crohn´s I have had since childhood. My sister not as long as me. I learnt to live with it. I suffered with it a lot through college when I sometimes wished I would just die. You can imagine I had to pass exams while throwing up in the morning and living with fever. I was managed to be put under control in my father´s hospital and I am usually fine with it. So used to be by now.

It was so weird to me though that I felt in my mid thirties that I am becoming ugly with puffy eyes, losing my hair, eye lashes, my beautiful white teeth and on top gaining some weight. I went up from like 110 to around 135 even if I hardly ate. Today I am fine with myself but I would like to feel better and I am sure you understand all of this.

Your reaction to the meds could be the weird, vague symptoms I have had that felt heart related. I totally understand that you want to stop the med because these symptoms are scary. A great endocrinologist is crucial in my opinion. So many things can go wrong and can be right depending on the right doctors.

I hope you will keep sharing all your news about your health and you know that I am thinking of you.

I will definitely continue to share my journey because if it could help anybody it is worth it. And I will keep good thoughts for you and hope this is the beginning of your finding relief for your symptoms and hopefully remission and a return for your quality of life. You are beautiful no matter what Sunstorm because you are beautiful where it counts. Don't you ever forget that. (((HUGS))).

And yes feeling better is the driving motivation. For us all.

 

[caf]

Hi caf, thanks so much for the info. I am very pleased for you that you finally found a PCP who really cares about you as the whole person and not just a bunch of "numbers".

You can contact me here:

https://loupetroop.com/listings/other/for-any-of-the-nirdis-its-missy

Or you could share it here if it could help others too. Whichever you prefer. Thank you very much.

Thanks for sharing the supplements you are taking and that is a good idea about perhaps I should see an immunologist.

Now that is a concern about the quality control of Armour. What should I do. I was thinking I could request (from another endocrinologist when I find one) the NDT but is that still a concern about the quality control? Do you live in the USA caf? So you are currently taking Synthroid (brand name) and Cytomel and do not take an NDT and that is because of quality control concerns here. Just want to make sure I am understanding correctly. I also think my brain has been foggy for a while and that could be because of my thryoid issues. Doubly frustrating because I am not thinking as clearly as I need to be and I cannot unless I find the right doctor for me.

@jaaron I know you are not in the USA but can you weigh in on this issue with NDT and quality control. Is there a specific NDT you recommend that might not have these issues? Thanks again.

Missy - I am in Colorado, so yes, USA. I take Synthroid. I never take a generic Synthroid. I do take a generic Cytomel.

I will shoot you an off PS communication and then we can take it back on PS. You will understand when I email you.

It was an Armour generic/similar my PCP was concerned about. She was not concerned about Armour - just when Armour ran out and they substituted something for Armour at the pharmacy.

Synthroid takes a few weeks to kick in. I would bet no one will give you Armour until they see if the Synthroid helps. And then they will play around with the dosage on the Synthroid for awhile.

CAF

 

[missy]

Missy - I am in Colorado, so yes, USA. I take Synthroid. I never take a generic Synthroid. I do take a generic Cytomel.

I will shoot you an off PS communication and then we can take it back on PS. You will understand when I email you.

It was an Armour generic/similar my PCP was concerned about. She was not concerned about Armour - just when Armour ran out and they substituted something for Armour at the pharmacy.

Synthroid takes a few weeks to kick in. I would bet no one will give you Armour until they see if the Synthroid helps. And then they will play around with the dosage on the Synthroid for awhile.

CAF

Thank you for all the info Caf! Really appreciate it. I sent an email back to you fyi. (I found your email in my spam filter so that is why I want you to know I replied and if you don't see it check your spam).

Update: So my good friend R (another friend) actually went to this integrative medicine doctor last year and he did tell me but I am terrible with names and didn't realize it was this guy! He HATED him. He said it was a money pit. He only went twice and it cost him $2500. And that would be OK if the doctor seemed like he cared. But R said he didn't seem that way and in fact after all those tests (and OMG there were so many tests and many not covered by insurance) R paid for a follow up that lasted 5 minutes and didn't get most of the results. Ugh. And he just wanted him to come back for expensive treatments when he was feeling fine. Don't ask me why R went in the first place. Just got off a phone call with R and I think I will be canceling this appointment with the Integrative MD. So disappointed but I am resilient and will see if I can find a different way. Maybe an MD who isn't into overtesting and has a balance b/w conventional and out of the box holistic. Gotta put my thinking cap on and see what I can figure out. Too bad that thinking cap is sluggish these days.

 

[leukolenos]

Oh dear Missy!

I am so sorry to read about your troubles. I am also dealing with a spaghetti bowl of intertwined autoimmune endocrine shenanigans that is just so difficult to manage and figure out, and it is so frustrating because it takes a while to really feel and notice improvements. I am glad you started a thread on this so we can all benefit from each others' knowledge and experiences....

I wish I could give better advice but keep trying- good doctors are out there and unfortunately it just takes trial and sometimes expensive error. I only ended up finding a good doctor accidentally- I initially saw her as a reproductive specialist but she turned out to be quite the brilliant holistic thinker, so I still see her for ongoing management even though we're largely past my reproductive issues.

I did stark taking LDN about 6 months ago and can say it really has been very helpful in sometimes some strange ways. From what I understand there's very little it can hurt, so if you can find a prescribing doctor it might be worth a shot.

Hugs! We're all in this together!

 

[missy]

Oh dear Missy!

I am so sorry to read about your troubles. I am also dealing with a spaghetti bowl of intertwined autoimmune endocrine shenanigans that is just so difficult to manage and figure out, and it is so frustrating because it takes a while to really feel and notice improvements. I am glad you started a thread on this so we can all benefit from each others' knowledge and experiences....

I wish I could give better advice but keep trying- good doctors are out there and unfortunately it just takes trial and sometimes expensive error. I only ended up finding a good doctor accidentally- I initially saw her as a reproductive specialist but she turned out to be quite the brilliant holistic thinker, so I still see her for ongoing management even though we're largely past my reproductive issues.

I did stark taking LDN about 6 months ago and can say it really has been very helpful in sometimes some strange ways. From what I understand there's very little it can hurt, so if you can find a prescribing doctor it might be worth a shot.

Hugs! We're all in this together!

Thanks for sharing leukolenos! Yes it would be wonderful if we could all share and benefit from each other's experience. I would so appreciate it if people would chime in with their experiences and share with us. I am very happy you have a wonderful caring physician and that LDN is working out so well for you and that you are finding relief!

I am finding how challenging it is to find a physician who cares about our health as much as their pocketbook. I see clearly that there are some doctors taking advantage of others suffering and pain and I have to figure out the good guys from the not so good guys. I know most physicians are good and care about their patients but once we are in the more challenging disease and no insurance accepted zone it gets harder to weed out those who will make the difference to your health and those that will just make the difference to your pocketbook.

Just to be clear I am very pro physician and medical science etc. Just had some close calls with some not so well intentioned (and some not so well informed) doctors and the few bad ones can spoil it all. I am looking for a good balance b/w medical science and holistic integrative medicine. A mixing of Eastern and Western philosophy and principles.

My search continues.

 

[leukolenos]

Thanks for sharing leukolenos! Yes it would be wonderful if we could all share and benefit from each other's experience. I would so appreciate it if people would chime in with their experiences and share with us. I am very happy you have a wonderful caring physician and that LDN is working out so well for you and that you are finding relief!

I am finding how challenging it is to find a physician who cares about our health as much as their pocketbook. I see clearly that there are some doctors taking advantage of others suffering and pain and I have to figure out the good guys from the not so good guys. I know most physicians are good and care about their patients but once we are in the more challenging disease and no insurance accepted zone it gets harder to weed out those who will make the difference to your health and those that will just make the difference to your pocketbook.

Just to be clear I am very pro physician and medical science etc. Just had some close calls with some not so well intentioned (and some not so well informed) doctors and the few bad ones can spoil it all. I am looking for a good balance b/w medical science and holistic integrative medicine. A mixing of Eastern and Western philosophy and principles.

My search continues.

I understand what you meant, I hope I didn’t come off as critical! I was just trying to be encouraging that I have hope that you will find a good practitioner, or practitioners, to help you sort all this out. I just know how hard it can be, so you have my utmost sympathies and solidarity in your issues. Even now with a great doctor it’s still a game of constant tweaking and trying new things.

Hang in there love and keep us posted! You can always email me if you need a sympathetic ear!

 

[missy]

I understand what you meant, I hope I didn’t come off as critical! I was just trying to be encouraging that I have hope that you will find a good practitioner, or practitioners, to help you sort all this out. I just know how hard it can be, so you have my utmost sympathies and solidarity in your issues. Even now with a great doctor it’s still a game of constant tweaking and trying new things.

Hang in there love and keep us posted! You can always email me if you need a sympathetic ear!

Aww no, you did not come off as critical at all! I appreciate your posting and your support and caring too. (((Hugs))). I feel like giving up honestly at this moment but hopefully that will pass. It takes so much energy and I don't have that much energy these days. So it's like an endless circle. My AI issues make me feel tired and drained and mentally foggy and yet I need a mental acuteness and energy to find the right health care professionals.

And yes I did not forget I can email you any time...and please don't hesitate to contact me either...waiting to hear of any exciting updates if you kwim.

 

[leukolenos]

Ugh I know the feeling. I had a bout like that this last month where I really just wanted to throw my hands up in the air. Insurance quit covering meds, traveling for doctors, etc etc....

Once upon a time I was in a AI thyroid yahoo group that was super active, which I subsequently unsubscribed from because I just didn’t have the mental space to filter it. Maybe hunting them down could get you some good leads on practitioners to check out, western or otherwise.

That had been one major + of the LDN- I feel so much less exhausted. For once in my life I feel like I don’t need a perpetual extra 30m in bed.

Yes I owe you an email! I am so bad!

 

[missy]

Aww @leukolenos, you don't owe me anything but I always enjoy hearing from you whenever you feel like it!

OK so I ran across this "Poem" during my reading yesterday and it moved me so I am sharing here in case it resonates with anyone else. I think this poem could apply to anyone dealing with any long term debilitating chronic illness that affects their daily quality of life. Not just Hashimoto’s.

I Am Hashimoto's

Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life.

Others around you can't see me or hear me, but YOUR body feels me.

I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.

I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.

Some of my other autoimmune disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.)

You may have a family history of me. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.

Can't get pregnant, or have had a miscarriage?
That's probably me too.

Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how sick you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.

They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

I am Hashimoto's Disease.

 

[Cluless]

aww Missy, I could have written this each and every painful word of it, sitting here tears streaming down my checks. Someone finally understands.

Went to endo on Thursday lab work came back all ''Normal'' for the first time in 12 years, why am I still feeling like crap?
Sorry hon, didn't mean to thread jack having one of those days.
Don't give up. Did you try speaking to your pharmacist to see if they have any recommendations for a good endo that listens to patients and is open to prescribing what you would want to try.

 

[missy]

aww Missy, I could have written this each and every painful word of it, sitting here tears streaming down my checks. Someone finally understands.

Went to endo on Thursday lab work came back all ''Normal'' for the first time in 12 years, why am I still feeling like crap?
Sorry hon, didn't mean to thread jack having one of those days.
Don't give up. Did you try speaking to your pharmacist to see if they have any recommendations for a good endo that listens to patients and is open to prescribing what you would want to try.

I am so sorry you are feeling awful still and that your doctor doesn’t “get it” and yes I thought this poem would ring true with many of us. When I read it I felt it was like a comforting hug and it gave me hope somehow. I know that’s sort of weird but it made me feel a bit better if that makes sense.

Cluless, please don’t hesitate to vent and share here. It’s not just “my” thread. It’s all our thread. For all of us dealing with chronic conditions that affect our quality of life. Big (((hugs))) and love to you and buckets of healing dust.

Is your endo an integrative medicine person? Or is he by the numbers?

It’s challenging finding the “right” doctors. I am still searching and if I find a good doctor I will shout it here and share it. A good doctor is more valuable than jewels when one’s health depends on it.


(((Hugs))).

 

[smitcompton]

Hi Missy,

I also take Levothyroxin and have for over 20 yrs. Your dosage of .25mcg must be the smallest dosage available. I take 150 mcg, my son takes 200mcg. Your doctor is starting at the low and will see how you do, and if necessary increase the dosage. Initially my doctors did the same. So, please, please don't take this the wrong way. I'm wondering if those symptoms you felt initially are over exaggerated in your mind. I would try again as the dosage is small.

My second comment is that while your desire to combine east and west medicines is laudable, in reality this is almost, I say almost, a pipe dream. You may be asking too much of medicine at this point, and will continually be disappointed. Yes, I tried myself with some other problems, and found I was best served by regular medicine, and listening to other people success stories.

Either go to the library or go to the internet and only ask for those who have had success with treating Hasimotos. I stress only success stories, many may be different and you can see if anything fits your situation.
I have a love-hate relationship with Drs. myself. Sometimes I am joyously surprised with them.

Annette

 

[lyra]

Sometimes it doesn't hurt to ask the appropriate specialist: What happens if I do nothing? What happens if I don't treat this symptom?

I always ask this. I would have chosen not to treat my rheumatoid auto immune issues if it weren't for the answer which was permanent damage to joints and organs. Sometimes finding the right treatment seems impossible, or unpalatable in some way or greatly lacking in the life balance vs. side effects. Hang in there.