Autoimmune Thyroid Disease

[missy]

Hi Missy,

I'm sorry I never seem to have time to get properly caught up and that you're dealing with so many different things.

Do you by any chance have the results of your latest set of thyroid tests with the reference ranges? I'm glad you've found an endo you feel ok about, but there are a couple of things I'd suggest taking a look at:

1. How long were you on the initial dose of Armour before he raised it? Mine never makes a dosage change sooner than 6-8 weeks, which is how long it takes your body to stabilise. I think 2 grains of Armour is a crazy high dose for your circumstances-- after many, many years of Hashimoto's that went untreated for far too long, I have essentially no working thyroid left and I'm on 1.5 grains plus 25 mcg of levothyroxine. I can't imagine you're not hyper or verging on hyper on such a big dose so soon.

2. Why are you taking half of it at night? Unlike levothyroxine, which is inactive T4, the active T3 in Armour will almost certainly interfere with your sleep. I take 1 grain first thing in the morning, 1/2 grain around 4 pm and the levo at bedtime.

3. DHEA essentially converts to something like testosterone in your body - I think it's fine to take if carefully monitored, but if you're sensitive to hormones, keep an eye out for that.

I also take both magnesium and Melatonin before bed. The Melatonin is prescription here, so usually that, but I like the Natrol time release too. I find 1 mg makes a difference in the quality of my sleep.

I think I asked previously, but can't remember- have you been tested for Lyme Disease?

Hi Jaaron, no worries. I appreciate your time and energy when you have it to spare here. Hope all is well by you.
I was tested for Lyme a few years ago when I started having unexplained weird symptoms. I have not been tested since but am very doubtful I have Lyme. I will ask my doctor if he feels I should be retested. Thanks.


My endocrinologist only had me on the 1 grain for 2 weeks before he insisted (and I do mean insisted) on adding another whole grain. At the time he told me when I resisted that I have to "give up control" and let him take over. I didnt care for that but since then he has been behaving and more in tune to my requests. And I took the 2 grains for about 4 weeks before the palpitations started and my pulse went crazy high for me and then I just decreased back to 1 grain where I felt better. And he said I did exactly the right thing. But now he wants me to slowly increase the dose again. See below.

I also thought 2 grains was crazy high but my endocrinologist says it is a relatively small dose and he thinks I am very hypothyroid based on a nerve test he gave me which I linked here last week. My last blood tests results on the med:

T3 total 76 normal range (conventional range) 76-181
T3 Free 2.4 normal range (conventional range) 2.3-4.2

T4 free is 1 (range is .8-1.
T4 total is 6.5 (range is 4.5 -12)

My TSH is now suppressed at .09

He wrote across the blood test T3 Very Low!!!!! Increase Thyroid med as directed!!!
LOL he loves his exclamation points.

So I am slowly increasing again from 1 grain to add another 30 mg instead of 1 grain twice a day I am taking 1 grain once and 15 mg once and then increase the 15 to 30 and see how that goes.

My D3 is 91 (high and I am going to reduce my supplementation though my endocrinologist is happy with that number I prefer it in the 70s, my ferritin is 30 (LOW and I want to get that up but not sure how short of adding iron which I don't need as my iron is normal. My total iron is 125 (45-160) and my iron binding capacity is 365 (250-450) and my % saturation is 34 (11-50). My CBC is low (3.2) but it is always low. Albumin high (dont know what that means) and Iodine low at 45 but blood serum iodine is really not an accurate measure but the only way he is doing it for me. A 24 hour urine test for iodine is way more accurate. Anyway I am going to add a drop of Iodine a day and see what happens. Going slowly just in case I am sensitive to it.

To answer your other question I started taking it when I wake up in the middle of the night so as not to interfere with my Oracea med which needs to be taken first thing in the AM with food. And it progressed to taking it late at night. Based on what you wrote which makes perfect sense I will start taking it early in the AM again when I first wake around 4AM and then go back to sleep till 5AM or so when I will take my Oracea med. An hour is sufficient time according to my endocrinologist to wait b/w meds.

I decided against taking DHEA. I don't want to add anything more to this complicated mix and I don't do well on these type of hormones generally.

Thanks for any more insight you might have @jaaron.

 

[missy]

I'm curious, why does your doctor think LDN would help with hair loss?

The short answer is it's complicated. It may help some people and for others it won't have any benefit. The best way to know is to start taking it and see. I am running low on time but quickly will try to link some helpful info here for you but it is not complete info. If you do a search for LDN and alopecia or LDN and FFA or LDN and LPP you will find scientific data that may explain more clearly. Since these are such new diseases (LPP and FFA) there is not a lot of medical journal info on this and much of the info is anecdotal. I belong to a few groups where people with these diseases have reported some success with LDN for hair regrowth. The general consensus is that it will work for some and not for others and it depends on your physiology/genetic makeup. So really just a matter of trying it to see if it helps or hurts. Some people cannot take LDN and do well. And some do very well.

http://jddonline.com/articles/dermatology/S1545961617P1140X

https://lookaside.fbsbx.com/file/LDN 2018 Fact Sheet USA.pdf?token=AWyCnyu-SiBIJhuziYIzGkDcjcMijwghrXBVtyH2dXtgAyK6Cq0xlgylCBOry6-mb8jam47vHHrt72ot-4lJkpmNXnhBw8W-2BlD5okSj1o-6T2h1Cip1EMRkLT_ZWRZF-lfr6ifHh96ELQS6WaHScnj

https://www.ldnresearchtrust.org/conditions

 

[ksinger]

The short answer is it's complicated. It may help some people and for others it won't have any benefit. The best way to know is to start taking it and see. I am running low on time but quickly will try to link some helpful info here for you but it is not complete info. If you do a search for LDN and alopecia or LDN and FFA or LDN and LPP you will find scientific data that may explain more clearly. Since these are such new diseases (LPP and FFA) there is not a lot of medical journal info on this and much of the info is anecdotal. I belong to a few groups where people with these diseases have reported some success with LDN for hair regrowth. The general consensus is that it will work for some and not for others and it depends on your physiology/genetic makeup. So really just a matter of trying it to see if it helps or hurts. Some people cannot take LDN and do well. And some do very well.

http://jddonline.com/articles/dermatology/S1545961617P1140X

https://lookaside.fbsbx.com/file/LDN 2018 Fact Sheet USA.pdf?token=AWyCnyu-SiBIJhuziYIzGkDcjcMijwghrXBVtyH2dXtgAyK6Cq0xlgylCBOry6-mb8jam47vHHrt72ot-4lJkpmNXnhBw8W-2BlD5okSj1o-6T2h1Cip1EMRkLT_ZWRZF-lfr6ifHh96ELQS6WaHScnj

https://www.ldnresearchtrust.org/conditions

Thanks Missy! I'm checking them out now. Can't get to more than the abstract on the first one, but a bit of sleuthing shows me that it references a study with an author by the name of Jarred Younger. He's one of the researchers who was doing the LDN studies from 2009 and 2012 at the Stanford Neuroimaging and Pain Lab. Those were the studies I used to help me decide that LDN was worth a shot. As I've mentioned before, it seemed to work for a while, but then it seemed to not, so I no longer take it.

The nice thing about taking it for hair regrowth though, would be the objective measure of well, HAIR.
How a person feels is so subjective, you know? I can feel better from so many things, it's hard to attribute a feeling to a medication and not something else like placebo effect.

 

[missy]

Thanks Missy! I'm checking them out now. Can't get to more than the abstract on the first one, but a bit of sleuthing shows me that it references a study with an author by the name of Jarred Younger. He's one of the researchers who was doing the LDN studies from 2009 and 2012 at the Stanford Neuroimaging and Pain Lab. Those were the studies I used to help me decide that LDN was worth a shot. As I've mentioned before, it seemed to work for a while, but then it seemed to not, so I no longer take it.

The nice thing about taking it for hair regrowth though, would be the objective measure of well, HAIR.
How a person feels is so subjective, you know? I can feel better from so many things, it's hard to attribute a feeling to a medication and not something else like placebo effect.

Yes agree completely. Anecdotal evidence is helpful only to a degree. Just making it all so much more complicated. I don't have high hopes for hair regrowth and I am less concerned about that than I am about the pain and terrible itching and inflammation. I am no stranger to pain and discomfort but this is concerning. However as with everything that seems overwhelming I will take it one day at a time and when necessary one hour at a time. Very itchy right now but heading out soon to cycle and hopefully get my mind off the discomfort.

Hope you are doing well and thanks for weighing in. I always appreciate your input and valuable insight. Thanks.

Oh and my dermatologist is a co author on that article I linked you to. I have a copy of it back in Brooklyn.

 

[Cluless]

Missy, I'm sorry to hear you're still dealing with so much and that itchiness. I don't know if I've shared this with you before,I have pretibial myxedema caused by the Grave's the itchiness was so bad I was ready to jump out a window. After years and years of searching I found this http://www.lymphedemaproducts.com/products/lymphoderm-bathing-solution.html Missy one shower is all it took the itchiness just stopped, as far as I am concerned an Angel came up with this formula. They also have the lotion which is good http://www.lymphedemaproducts.com/products/lymphoderm-lotion.html but not as great as the wash. Keeping you in my thoughts, enjoy your cycling today.

 

[missy]

Missy, I'm sorry to hear you're still dealing with so much and that itchiness. I don't know if I've shared this with you before,I have pretibial myxedema caused by the Grave's the itchiness was so bad I was ready to jump out a window. After years and years of searching I found this http://www.lymphedemaproducts.com/products/lymphoderm-bathing-solution.html Missy one shower is all it took the itchiness just stopped, as far as I am concerned an Angel came up with this formula. They also have the lotion which is good http://www.lymphedemaproducts.com/products/lymphoderm-lotion.html but not as great as the wash. Keeping you in my thoughts, enjoy your cycling today.

Thanks Cluless. I'm sorry you went through that and glad you found something that provides relief for you. Thanks for the links and I will check it out.

I just got an additional diagnosis yesterday. I now have cutaneous LP in addition to LPP. Processing it all right now. Trying not to think what's next as it feels too much to handle if I do that. One day and when necessary one hour at a time.

 

[junebug17]

Thank you Junie. I hope you experience much success with this and good sleep! I have been considering adding melatonin just hesitant because I am taking so many supplements and meds and not sure if they might interfere with each other. I have to take a second dose of thyroid med at night now so not sure how that interacts with the melatonin. And my alopecia specialist *might* be adding LDN to my regimen in 2 weeks so that also needs to be taken at bedtime so lots of things potentially interfering. It's complicated like almost everything is these days.

I have been taking 800 mg Magnesium (Doctor's Best Magnesium) for years now in the evening. I cannot say if it helps with sleep but I have heard that and I know I need it so I take it. I am very glad it is helping your brother with his insomnia. That is a wonderful update.

Thank you so much for being here Junie and comforting and supporting me along this difficult journey. (((Hugs))).

@missy, I understand being concerned about these meds and supplements interfering with each other. I hope that taking your thryroid med at a different time helps with your sleep.

And I'm sorry to hear about your latest diagnosis and I'm sending you lots of love and support. (((Hugs)))

 

[Ellen]

I wanted to post an update for anyone that might be interested regarding my iodine supplementation. I had previously posted that I had been taking iodine and eventually did an iodine loading test with the result being 100% saturated. At that time (7/31/17) I reduced my intake from 21 grams to 9 gr daily, trying to establish a maintenance dose. I recently did another iodine loading test to see if my daily dosage was sufficient. My result came back at a saturation level of 82%. So 9 grams a day is not sufficient. I want to be at 95% or better. I believe Dr. Brownstein recommends greater than 90%. So I will increase the dosage, probably to 15 gr daily. But only after upping to 21 gr again for awhile, and til I feel my memory has definitely improved.

Of note is the fact that, as I had also mentioned, my memory had begun to fail me again recently. This was one of the driving reasons for another loading test besides finding my maintenance dose. Right before I did the first test when I was at 100% iodine saturation, and my TSH level was the highest it had ever been since testing/record keeping had begun, at .90. (lowest was .30, out of range, right before initially starting iodine supplementation), and my memory was pretty good. I recently had my TSH tested, since I knew I was going to be raising my iodine and I wanted to know what it was before I did that, to see any correlation. My TSH as of 8/11/18, was back down to .40. Not good, and in direct correlation to the iodine levels.

Missy, I hope you don't mind me posting this, but it seemed to only make sense to post it with the rest of my posts which were in your thread.

 

[missy]

I wanted to post an update for anyone that might be interested regarding my iodine supplementation. I had previously posted that I had been taking iodine and eventually did an iodine loading test with the result being 100% saturated. At that time (7/31/17) I reduced my intake from 21 grams to 9 gr daily, trying to establish a maintenance dose. I recently did another iodine loading test to see if my daily dosage was sufficient. My result came back at a saturation level of 82%. So 9 grams a day is not sufficient. I want to be at 95% or better. I believe Dr. Brownstein recommends greater than 90%. So I will increase the dosage, probably to 15 gr daily. But only after upping to 21 gr again for awhile, and til I feel my memory has definitely improved.

Of note is the fact that, as I had also mentioned, my memory had begun to fail me again recently. This was one of the driving reasons for another loading test besides finding my maintenance dose. Right before I did the first test when I was at 100% iodine saturation, and my TSH level was the highest it had ever been since testing/record keeping had begun, at .90. (lowest was .30, out of range, right before initially starting iodine supplementation), and my memory was pretty good. I recently had my TSH tested, since I knew I was going to be raising my iodine and I wanted to know what it was before I did that, to see any correlation. My TSH as of 8/11/18, was back down to .40. Not good, and in direct correlation to the iodine levels.

Missy, I hope you don't mind me posting this, but it seemed to only make sense to post it with the rest of my posts which were in your thread.

@Ellen, please post as much as you like. We can all learn from your experience and appreciate you sharing.

 

[Sunstorm]

Hi Missy dear! Just checking on your results, tests and updates on your health.

I really need to get into reading up on this thread and other infos but I guess for the moment I have been sticking my head in the sand intentionally, just waiting out what will happen once I am completely weaned off of prednisone. Not taking any hormones.

Now that after two months of steroids I have drastically reduced the dose I am losing hair again. The whole steroid story was ok, much better than expected, well, except for horrible stomach burning in the beginning and experimenting with meds to reduce that.

Upon admittance to the hospital my free 3 was 10.3
Free T4 52.4
TSH 0.019.

Also a very supressed TSH which ok you have it too but how could I have such extremely high values otherwise?

I guess no one really knows when all other tests including the biopsy showed Hashi and my symptoms corresponded to that.

But I guess since I am was in the meantime also diagnosed with Bechterev perhaps a very strong inflammatory reaction sent my thyroid into overdrive? Has anyone else had this happen? No toxic adenoma, some cysts on ultrasound but probably those not causing the overdrive.

After 3 days of pred I was released with fT3 5.2
fT4 32.8
somewhat better

TSH fell further to 0.003.

I will get a recheck next week. Honestly I feel a hundred times better now, we have to see what happens when I am off the pred. I am just so happy that I had a good, relatively normal feeling summer, hey we have to appreciate the good times we have. The only downside has been the horrendous Bechterev pain guess going along with reducing the pred. Kind of scared of the future TBH.

Sorry I hope I did not threadjack too much, just finally was able to share and it is nice to share with others who may have gone through something similar!

 

[Arcadian]

Following this thread with a lot of interest. As some of you know, I have an undiagnosed Autoimmune disease which does not follow the normal protocols. The last few mornings I wake up and my left eye is still dark, like I'm wearing a patch over it. can take several hours for it to come back to normal. Then my face went numb. Usually the sign of a migraine and look out for pain in 30minutes to an hour. Nothing. just straight numbness and tingling.

And, the really bad part is over the last 3 days I saw an increase in eye floaters. Like to the point of where its scary. Made an appointment, something is happening but I don't know what it is.

The thyroid (naturethroid) is helping some with tireness and my hair (which is not falling out anymore).
Strangly enough my blood numbers are very good. Blood sugar levels (for me) are actually high.

Last few weeks I've had some really seriously bad Senior moments too!! Fasting has been 80 the last 10 days. For most thats normal and expected but for me, thats considered high. I've never fasted that high before.

 

[missy]

@Sunstorm please feel welcome to post and share here...there is no such thing as a thread jack and you know I love you. Keeping you in my thoughts and sending healing hugs your way. XO.

@Arcadian ugh I am sorry to hear your latest update and I hope you get answers soon. Totally scary especially when vision is concerned. I am guessing you have seen/are seeing an eye specialist? Retinal specialist and neuro-ophthalmologist are where I would start if you aren't already under the care of an eye specialist.

Fasting of 80 seems OK but I hear you that it isn't your "normal" and as for senior moments it is distressing. We should start a senior moments club. LOL I have to laugh or I would cry.

Latest update: My Comprehensive Stool Analysis from Doctors Data shows I am overrun with pseudomonas and that is a very tough bacteria to get rid of in one's body. I don't want to take Cipro if at all possible (terrifying possible side effects as in tendon rupture even years later) so my PA is starting me on Grapefruit Seed Extract (not without its side effects too and can kill off all the good bacteria with the bad) and LactoPrime Plus (probiotic) and Interfase Plus (biofilm buster) each twice a day. I am literally taking meds/supplements every single waking hour and if I need to add back thyroid meds I am in big trouble as I have no more hours in the day. And I have very little good bacteria in my gut. This is despite eating fermented veggies for years. My body is a mess. And the kicker is I do not think the pseudomonas infestation has anything to do with my other symptoms (ie hair loss, poor sleep etc) so just another (bad) incidental finding.

I cannot remember if I posted here but I also did the 24 hour adrenal saliva test which showed I am in a stress see saw pattern with cortisol and my adrenals. How I treat this I am not sure especially because I cannot take any more supplements as I have run out of space and time but I have a call scheduled later this afternoon with my holistic NP and she wants to discuss my latest blood and adrenal results. I am apprehensive because it seems none of my results have been normal these past 8 months and I am worried about what the latest blood results will show. Fingers crossed they are not too terrible.

But I am not giving up and neither are any of you. Hang in there. Just want you all to know I am sending good thoughts and healing vibes your way and we can get through this and be OK. (((HUGS))) to everyone dealing with health challenges.

And I want to thank all of my PS friends who have stayed by me and shared (and continue to share) their love and support during these challenging months. Sending you love and hugs and a big heartfelt thank you.

 

[Ellen]

To Missy ---->

 

[Arcadian]

@missy Your struggle...my goodness. You are an inspiration of never giving up!

I was diagnosed as hypoglycemic in the late 80's, so 65-70ish is normal for me. 80'-90s is normal for most people with my normal range making them feel quite ill. This morning I was at 77 which is a step in a better direction, and I did wake up feeling a heck of a lot closer to normal. The eye thing though is still there.

I can tell you this; 2 days last week I woke up feeling like I was having a heart attack. I wasn't (never had one but I wasn't) but I was very very stressed over the last few weeks which probably brought all that one. Never negate stress, it can really kill you.

I have some vacation time coming up after having not had one since I went to Ecuador in 2015 I absolutely need it in the worst way and you all might not see me because I seriously need to remove myself from all things computers for a week. I usually manage if I'm in a foreign country doing fun stuff, but this being a staycation...it'll be harder.

The appointment is with my regular dr (Cleveland Clinic) her referrals has been really great so far so lot of trust there. Good docs there, they don't believe in one size fits all, and a hell of a lot more progressive than most of my docs were when I lived in Mass!

 

[Sunstorm]

I am not sure if someone has mentioned it here but I wanted to get the world out.

Next month if all goes well I will begin biological treatment of autoimmune disease groups.

In my case Crohn’s and Bechterew were likely the first causing Hashi and then later an overworking thyroid.

At the moment my blood work is perfect. I did not have bad side effects from taking 3 months of prednisone, well, except for the known heartburn, meds worked well for that.

We’ll see where the thyroid swings now, in which direction. Then I may need thyroid meds too but I am very curious about the biological treatment.

The down side is the cost, it is very expensive and you have to quality for it as well as, where I live, state subsidy. People who want to have children or have some conditions may not be good candidates.

Otherwise I am very excited to try it to stop the pain and prevent remaining in a hunchback position for the rest of my life. Since it is used to treat many autoimmune conditions, it may be worth consulting with a doctor. Whatever I know I am happy to share, as well as my future experiences.

 

[missy]

I am not sure if someone has mentioned it here but I wanted to get the world out.

Next month if all goes well I will begin biological treatment of autoimmune disease groups.

In my case Crohn’s and Bechterew were likely the first causing Hashi and then later an overworking thyroid.

At the moment my blood work is perfect. I did not have bad side effects from taking 3 months of prednisone, well, except for the known heartburn, meds worked well for that.

We’ll see where the thyroid swings now, in which direction. Then I may need thyroid meds too but I am very curious about the biological treatment.

The down side is the cost, it is very expensive and you have to quality for it as well as, where I live, state subsidy. People who want to have children or have some conditions may not be good candidates.

Otherwise I am very excited to try it to stop the pain and prevent remaining in a hunchback position for the rest of my life. Since it is used to treat many autoimmune conditions, it may be worth consulting with a doctor. Whatever I know I am happy to share, as well as my future experiences.

Good luck @Sunstorm! Hope treatment goes very well for you. Fingers and toes crossed and keeping good thoughts for your full recovery. Please keep us posted. XO.

 

[Austina]

I’m not posting this to frighten anyone, but I thought it might be of interest to those of you with thyroid issues.

 

[missy]

So I am bumping this thread up again. I have two questions and was wondering if anyone here could chime in.

1. Is anyone here is taking NP Acella and if so is it still working for you? There has been a change where they are manufacturing the Active Ingredient (from USA to Europe) and the med looks, smells and tastes different but more importantly, it is now not working anymore for many people who it was working for before.

2. Is anyone here taking Tirosint? And if you could share your experiences with it. Thanks.