Has anyone had a colonoscopy?

[mrs-b]

@AGBF good luck with your upcoming surgery. Thinking good thoughts for you and sending healing vibes your way. (((Hugs))).

@mrs-b good luck this AM and I hope your Colonoscopy goes smoothly and all is well. Hugs.

Thanks, @missy

I made it through the prep ok and head off to the hospital in about an hour and a half. I am very much looking forward to my apple pie when I'm done!!

 

[missy]

Thanks, @missy

I made it through the prep ok and head off to the hospital in about an hour and a half. I am very much looking forward to my apple pie when I'm done!!

Yasss! You made it through the toughest part and sending you more good luck for the procedure and then enjoy that well deserved apple pie @mrs-b

Here ya go...just for you.

 

[mrs-b]

Yasss! You made it through the toughest part and sending you more good luck for the procedure and then enjoy that well deserved apple pie @mrs-b

Here ya go...just for you.

Now THAT is an apple pie as apple pies are supposed to look! YUM!!

 

[Phoenix]

Thanks, @missy

I made it through the prep ok and head off to the hospital in about an hour and a half. I am very much looking forward to my apple pie when I'm done!!

Hope all goes well, @mrs-b.

 

[Phoenix]

@missy, thinking of you this morning. Hope your visit to the Dr yields some good answers.

 

[missy]

@missy, thinking of you this morning. Hope your visit to the Dr yields some good answers.

Thank you so much @Phoenix. Saw my endocrinologist early this AM and he said my thyroid is barely functioning so I have no choice but to start thyroid meds again. He is starting me at a much lower dose though and to my surprise he agreed to put me on Acella NP which is a naturally desiccated thyroid hormone. He doesn't usually Rx it but he agreed for me it might be better than the artificial T4 meds. He did say I need to be prepared that I will lose probably even more hair before it gets better because every time you start a new thyroid med hair loss is a common symptom.

Not seeing him for another 2 months Fingers crossed I don't get palpitations from this dose and that I don't get any other bad side effects.

Forgot to ask him about light therapy for my thyroid as we ordered something online I read about and have not yet started doing the light therapy.

And I wanted to mention to you that I am taking LDN (Low Dose Naltrexone 4.5 mg) because it has shown to help autoimmunity (AI conditions) with a number of people. I cannot say yet if LDN is helping me but it is not hurting me so I will keep with it and see how it goes.

How are you feeling? How is the AIP diet going?

Thanks so much for thinking of me and I am keeping you in my thoughts as well. (((Hugs)))

 

[Phoenix]

Thank you so much @Phoenix. Saw my endocrinologist early this AM and he said my thyroid is barely functioning so I have no choice but to start thyroid meds again. He is starting me at a much lower dose though and to my surprise he agreed to put me on Acella NP which is a naturally desiccated thyroid hormone. He doesn't usually Rx it but he agreed for me it might be better than the artificial T4 meds. He did say I need to be prepared that I will lose probably even more hair before it gets better because every time you start a new thyroid med hair loss is a common symptom.

Not seeing him for another 2 months Fingers crossed I don't get palpitations from this dose and that I don't get any other bad side effects.

Forgot to ask him about light therapy for my thyroid as we ordered something online I read about and have not yet started doing the light therapy.

And I wanted to mention to you that I am taking LDN (Low Dose Naltrexone 4.5 mg) because it has shown to help autoimmunity (AI conditions) with a number of people. I cannot say yet if LDN is helping me but it is not hurting me so I will keep with it and see how it goes.

How are you feeling? How is the AIP diet going?

Thanks so much for thinking of me and I am keeping you in my thoughts as well. (((Hugs)))

That was a very early appt for you, @missy. Let's hope the new med works for you and that you won't have any palpitations. It's good that it's the natural desiccated thyroid hormone and not the synthetic stuff and fingers crossed your hair loss won't worsen. I must say, with regard to the latter, that that didn't happen with me, so I am hopeful for you. I must say though I get shortness of breath - never thought it was anything to do with my thyroid med, but now I suspect it must be the cause. I am also going to see a heart specialist this week bc I have a family history of heart problems, so better rule that out.

If you develop any adverse symptoms from the med, may I suggest that you see him sooner than 2 months?

Did you mention light therapy in your other thread? I am not sure I follow.

I'll look into LDN. Thank you. How long have you been taking that?

I am struggling a little bit with the AIP diet. I tried to buy coconut butter to eat with a slice of bread (1 thin slice a day, that's all the wheat I allow myself), but couldn't stomach it. So I had to spread a little of peanut butter on it. Since I can't have eggs, cheese, cereals, I honestly don't know what else to eat for b/fast. But giving up on all nightshades, even white potatoes, and all nuts, chocolate, ice cream etc...not suffering as much as I thought I would. And I am having the occasional craving for some sauvignon blanc, but it'll pass.

Keep me posted on how you're gonna be doing with the new med.

{{HUGS}}

 

[missy]

That was a very early appt for you, @missy. Let's hope the new med works for you and that you won't have any palpitations. It's good that it's the natural desiccated thyroid hormone and not the synthetic stuff and fingers crossed your hair loss won't worsen. I must say, with regard to the latter, that that didn't happen with me, so I am hopeful for you. I must say though I get shortness of breath - never thought it was anything to do with my thyroid med, but now I suspect it must be the cause. I am also going to see a heart specialist this week bc I have a family history of heart problems, so better rule that out.

If you develop any adverse symptoms from the med, may I suggest that you see him sooner than 2 months?

Did you mention light therapy in your other thread? I am not sure I follow.

I'll look into LDN. Thank you. How long have you been taking that?

I am struggling a little bit with the AIP diet. I tried to buy coconut butter to eat with a slice of bread (1 thin slice a day, that's all the wheat I allow myself), but couldn't stomach it. So I had to spread a little of peanut butter on it. Since I can't have eggs, cheese, cereals, I honestly don't know what else to eat for b/fast.

But giving up on all nightshades, even white potatoes, and all nuts, chocolate, ice cream etc...not suffering as much as I thought I would.

And I am having the occasional craving for some sauvignon blanc, but it'll pass.

Keep me posted on how you're gonna be doing with the new med.

{{HUGS}}

@Phoenix check out wild mountain paleo. They offer AIP choices. I bought this for breakfast but have not yet tried it.

https://www.wildmountainpaleo.com/viewproductdetail/2943?splash

I’ve been on LDN for about 5 months? Not completely sure how long but about that. I started slow and low at 1.5 mg and worked my way up to 4.5 mg. With Hashimoto’s it’s best to start low. I’m giving it a year unless I start having bad side effects but it’s a relatively safe med.

I haven’t discussed the light therapy here. I’ll look for the link and share it here when I find it. Might be helpful getting ones thyroid to function better. But who knows. Maybe I’m grasping at straws. But there is scientific data backing some of this up so I thought ok let me see if there’s anything to it.

Glad giving up some of those foods is proving easier than you thought and hopefully you’ll find substitutes that will allow you to continue and hopefully AIP will lower your antibodies.

I will keep you posted and please do the same. And yes if I start developing issues I’ll email him. He’s booked months ahead that’s the problem. He’s very popular.

Fingers toes and everything crossed... we will both make it through and come out A-OK. XO.

 

[missy]

FYI @Phoenix

http://www.forefronthealth.com/thyroid-light-therapy-lamp/



http://www.forefronthealth.com/light-therapy-for-hypothyroidism/

 

[mrs-b]

Sigh. So the colonoscopy came back clear (first clear one in decades) - which is great! But apparently I have gastroparesis. I need to have a test to confirm this, but it looks pretty likely.

I pulled a drowning girl out of a swimming pool when I was 14 and crushed my vagus nerve. I now have a whole host of issues caused by that nerve not working - gastroparesis being one of them; your vagus nerve informs your lungs and diaphragm, your heart, your stomach, your digestive process in general - and so on and so on.

Awesome. But I'm still here and, as someone once said to me, "You could be ugly, too!" - so things could be worse. I have no idea how they're gonna treat this, tho; there's no cure for a crushed nerve....

 

[missy]

Sigh. So the colonoscopy came back clear (first clear one in decades) - which is great! But apparently I have gastroparesis. I need to have a test to confirm this, but it looks pretty likely.

I pulled a drowning girl out of a swimming pool when I was 14 and crushed my vagus nerve. I now have a whole host of issues caused by that nerve not working - gastroparesis being one of them; your vagus nerve informs your lungs and diaphragm, your heart, your stomach, your digestive process in general - and so on and so on.

Awesome. But I'm still here and, as someone once said to me, "You could be ugly, too!" - so things could be worse. I have no idea how they're gonna treat this, tho; there's no cure for a crushed nerve....

Ughh I'm sorry @mrs-b Keeping good thoughts for you and praying you are OK.
What a wonderful thing you did by saving that girl's life but how awful that you are now suffering from the consequences of that brave action.

Here's a thread from PS on this topic.

https://www.pricescope.com/community/threads/gastroparesis-anyone-know-about-it.238668/

and some info (you are probably already well aware but just in case you might find it helpful)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3771488/

http://www.jnmjournal.org/journal/view.html?doi=10.5056/jnm.2013.19.1.18

http://gastroparesisclinic.org/treatments.php?pageId=1186&moduleId=204

https://www.healthline.com/health/gastroparesis/gastroparesis-diet

https://www.dietvsdisease.org/best-diet-gastroparesis-delayed-gastric-emptying/

Hope you don't have gastroparesis but if you do I hope your doctors can help you find relief.
And I am glad your colonoscopy was clear so that is good news indeed.

 

[Phoenix]

Sigh. So the colonoscopy came back clear (first clear one in decades) - which is great! But apparently I have gastroparesis. I need to have a test to confirm this, but it looks pretty likely.

I pulled a drowning girl out of a swimming pool when I was 14 and crushed my vagus nerve. I now have a whole host of issues caused by that nerve not working - gastroparesis being one of them; your vagus nerve informs your lungs and diaphragm, your heart, your stomach, your digestive process in general - and so on and so on.

Awesome. But I'm still here and, as someone once said to me, "You could be ugly, too!" - so things could be worse. I have no idea how they're gonna treat this, tho; there's no cure for a crushed nerve....

@mrs-b, glad your colonoscopy came back clear but sorry to hear you might have gastroparesis. Fingers and toes crossed you don't have it.

{{HUGS}} and I echo @missy that Drs can help you find relief if you do have gastroparesis. Again, here's hoping you don't.

 

[Phoenix]

@Phoenix check out wild mountain paleo. They offer AIP choices. I bought this for breakfast but have not yet tried it.

https://www.wildmountainpaleo.com/viewproductdetail/2943?splash

I’ve been on LDN for about 5 months? Not completely sure how long but about that. I started slow and low at 1.5 mg and worked my way up to 4.5 mg. With Hashimoto’s it’s best to start low. I’m giving it a year unless I start having bad side effects but it’s a relatively safe med.

I haven’t discussed the light therapy here. I’ll look for the link and share it here when I find it. Might be helpful getting ones thyroid to function better. But who knows. Maybe I’m grasping at straws. But there is scientific data backing some of this up so I thought ok let me see if there’s anything to it.

Glad giving up some of those foods is proving easier than you thought and hopefully you’ll find substitutes that will allow you to continue and hopefully AIP will lower your antibodies.

I will keep you posted and please do the same. And yes if I start developing issues I’ll email him. He’s booked months ahead that’s the problem. He’s very popular.

Fingers toes and everything crossed... we will both make it through and come out A-OK. XO.

@missy, thank you for all your very informative posts. I will def look up LDN and light therapy. I tried to look for the tigernut product, but apparently nobody (that I've found) ships to Singapore. I will keep on searching. In the meantime, I am having my one slice of bread with a little honey in the morning.

I will def keep you posted and look forward to hearing positive news from you too. {{HUGS}}.

 

[Phoenix]

@missy, I know it's early days yet...was just wondering how you're getting on with your thyroid med?

 

[missy]

@missy, I know it's early days yet...was just wondering how you're getting on with your thyroid med?

Hi @Phoenix you are so kind to be thinking of me and thanks for checking in with me...you are right that it is too early to know anything. Please skip the following long winded answer if you aren't in the mood. It's long and the short of it is I do not know yet. Details below. (I won't be offended if you skip it I promise).

I have not yet started taking the dose the endocrinologist prescribed but half the dose which I realize is a ridiculously small dose of 15 mg or 1/4 grain. He wanted me to take 1/2 grain or 30 mg which is already a smaller than usual starting dose. A "normal" or average starting dose is 1 grain and then 2 weeks to a month later generally 2 grains. But we decided to start slow and I decided to start even lower than the 30 mg dose initially prescribed. So after a week has passed (this wednesday) if all is OK I will double the 15 mg to 30 mg and see how that goes.

When I first started an NDT (naturally desiccated thyroid hormone) last winter (February or March 201 I was prescribed (by another Endocrinologist) one grain of NDT and then 2 weeks later he asked me to increase to 2 grains and it took 2 months for the palpitations to start so it might take a long time to know either way. And my blood levels never reached optimal thyroid levels despite being on 2 grains of NDT anyway. And now somehow starting even lower (hoping I won't get the palps) we are hoping I will reach more optimal thyroid levels though I do not have a clue how. Nor did I address that concern with my current endocrinologist. The appointments go so fast and half the time even with questions written down I forget what I want to ask or don't even have the right questions written down. My brain fog is real.

But main point is over time if I am not absorbing the meds it will pool and not be absorbed by my cells and cause issues so starting lower just means it might take longer to get to the side effects. IDK and time will tell.
What happens is if one is lacking certain things (ie anemic so B12 and/or iron deficient, or cortisol out of whack to name just a few issues) one cannot absorb the thyroid med and it builds up and pools and that is what happened to me last time. And nothing is different with me in terms of iron and cortisol etc despite me working hard to try balancing these things. I am fighting genetics as it is my genetics causing me to be anemic and have adrenal issues plus being low thyroid so it's a vicious cycle). That is why I am apprehensive because I don't know how this is going to be a different outcome.

I hope I don't sound gloomy (so hard conveying online how one feels sometimes) because I am not feeling depressed or anything but more being a realist. I am hopeful that somehow I can absorb and tolerate the meds or that somehow my doctor and I can figure out how to make it work but if I am being honest I am not sure how we will get there. But I am hopeful we will get there.

Generally I feel OK though. I am used to being tired and not sleeping well and that continues but I am enjoying each day and still able to (thank goodness) workout and that is important for my mental health and I have a feeling you understand what I mean. Working out allows me to clear my mind and feel mentally strong and emotionally healthy. It allows me to work through stressful thoughts and feel better. Fingers crossed I can physically continue working out. It is an important outlet for me.

Sorry for such a long explanation to your question but I didn't just want to give you a I don't know yet answer lol.

Please tell me how are you doing? Did you find a gastroenterologist and anesthesiologist you trust to do your colonoscopy? How are you feeling? You continue to be in my thoughts. (((HUGS))).

 

[Phoenix]

@missy,

Thank you for the update. Pls do not ever apologise. I genuinely am interested in your progress and hope your health improves.

May I ask: how do you know your meds were/ are not being absorbed properly. What are the symptoms/ indicators that led you to believe this is the case? You may have said this before in your previous thread, but forgive me - I don't remember. Anyhow, I hope you will absorb this new med better than the NDT. I guess time will tell.

It's great that you are able to continue to work out on a daily basis. I sometimes can't work out due to lack of sleep/ insomnia caused by my Hashimotos...ah well...

I've found a new specialist and am schedule to have the procedure in mid-Dec though I may move it to January, as everyone seems to be not properly focused due to the holidays. I feel much more comfy with him, though when I did ask him about the risks and whether he'd perforated anyone before and he admitted that he had, but adding that it was very rare. At least he was honest. I wonder if there's anyone who's never perforated their patients at all.

Anyhow, dear @missy, I hope that your body will absorb the new med and that you will feel better. With each day come new hopes....for both you and me.

{{HUGS}}

 

[missy]

@missy,

Thank you for the update. Pls do not ever apologise. I genuinely am interested in your progress and hope your health improves.

May I ask: how do you know your meds were/ are not being absorbed properly. What are the symptoms/ indicators that led you to believe this is the case? You may have said this before in your previous thread, but forgive me - I don't remember. Anyhow, I hope you will absorb this new med better than the NDT. I guess time will tell.

It's great that you are able to continue to work out on a daily basis. I sometimes can't work out due to lack of sleep/ insomnia caused by my Hashimotos...ah well...

I've found a new specialist and am schedule to have the procedure in mid-Dec though I may move it to January, as everyone seems to be not properly focused due to the holidays. I feel much more comfy with him, though when I did ask him about the risks and whether he'd perforated anyone before and he admitted that he had, but adding that it was very rare. At least he was honest. I wonder if there's anyone who's never perforated their patients at all.

Anyhow, dear @missy, I hope that your body will absorb the new med and that you will feel better. With each day come new hopes....for both you and me.

{{HUGS}}

Hi @Phoenix I think that is a good idea to postpone your procedure for after the holidays. You're right in that December is not the best time of year for anything more than a simple visit IMO. Too many distractions. I am glad you found a specialist who is competent and capable and honest too. And I think the more colonoscopies/procedures a specialist has done/is doing the more they will have complications (though as you wrote it is still a rare occurrence thankfully) but I would think that is more related to the number of procedures vs the skill of the physician though of course the skill of the physician is key.

As for how I knew I wasn't absorbing the meds...my labs always showed I remained very hypothyroid despite the thyroid hormone I was taking (up to 2 grains NDT and 15 mg T3) plus the pooling and increased RT3 (reverse T3) which manifested as heart palpitations and high blood pressure and high pulse. I didn't go into Reverse T3 here with you but that is also a factor with me. My RT3 went from an acceptable level to a too high level. When I took meds containing T4 (and that includes NDTs as they are mostly T4 with some T3 and T2 and T1) instead of being converted to Free T3 (desired result) they got converted to Reverse T3 blocking the free T3 receptor sites and thereby preventing the thyroid hormone from getting absorbed into my cells.

So it wasn't a matter of not taking enough meds though my blood results remained super low and I was exhibiting high heart rate, high pulse, high blood pressure and increased anxiety. What I was taking was not getting absorbed due to my cortisol and iron issues among other issues (probably due to high mold exposure too just another complication). Not sure if I am explaining it clearly enough because it is so complicated I cannot explain fully here. There is a very helpful site that contains all this info but it is also not 100% something I follow as it tends to generalize and be a bit OTT. I take from it what I find to be useful and leave the rest. I also like Izabella Wendtz and her books as she is more mainstream and reasonable. So while I am linking the "Stop the Thyroid Madness" site here for you and find it a helpful site I would caution you to read with a critical eye.

https://stopthethyroidmadness.com/site-map/

here's a quick summary of what I am trying to explain:

1) Having low cortisol–can cause heart palps, fast heartrate anxiety, pooling or a variety of overreactions when raising.

2) Rising RT3, the inactive hormone–we tend to feel more hypo when this is happening. Can be from inadequate levels of iron, high iron, high cortisol, inflammation, viral or bacterial infections, Lyme, mold inhalation….etc. We test to find out, then treat!!

http://stopthethyroidmadness.com/adrenal-info
http://stopthethyroidmadness.com/reverse-T3

I hate that you are having insomnia and that you are having trouble working out occasionally due to your Hashimoto's and insomnia. I don't know if you can do this but on the days I am very tired and feel like I just cannot work out I do a lighter workout. Anything that gets me moving even if it isn't getting my heart rate up as much as I would like. I find that if I can do something no matter how easy a workout I feel better mentally and physically and sometimes getting started is the hardest part. Though sometimes I am dragging myself and those aren't the best workouts but mentally I find any workout helpful.

If you read STTM links about adrenal issues you will see they advocate NOT working out if one has adrenal issues that compromise their health. I don't think everything they write is one size fits all and that is why I say take the site for what it is worth. There is info there that is helpful and info there that I find not helpful.

Please don't hesitate to ask me anything if you have any other questions. I am not an expert (and my brain fog occasionally prevents me from fully explaining things as well as I would like) but I know more than I ever wanted to on this topic lol.

Thank you for all your good wishes @Phoenix and I wish the same for us too. Keeping good thoughts for you and your upcoming procedure and that it goes smoothly and can help in your diagnosis and treatment leading to complete relief.

(((Hugs)))

 

[Phoenix]

@missy, Thank you so much. I'll respond more fully later. Trying to read the links you sent. Wow, there's a ton of very helpful infor on there.

One quick Q though: do you suffer from shortness of breath? Last few months, I seem to have suffered from this. I also try to measure my heart rate and my resting heart rate is 60 first thing in the morning; which is normal, right? But I don't know why I have shortness of breath. Not sure if the two are related. Also, I don't know if it's got anything to do with my Hashimotos or whether it's caused by Avamys (my steroidal nasal spray, used for nose & ear blockage).

ETA. I am more inclined to think Avamys is the cause. I've been on this thyroid med for 10 yrs and never had this problem before. Just thought I'd check with you though.

 

[missy]

@missy, Thank you so much. I'll respond more fully later. Trying to read the links you sent. Wow, there's a ton of very helpful infor on there.

One quick Q though: do you suffer from shortness of breath? Last few months, I seem to have suffered from this. I also try to measure my heart rate and my resting heart rate is 60 first thing in the morning; which is normal, right? But I don't know why I have shortness of breath. Not sure if the two are related. Also, I don't know if it's got anything to do with my Hashimotos or whether it's caused by Avamys (my steroidal nasal spray, used for nose & ear blockage).

ETA. I am more inclined to think Avamys is the cause. I've been on this thyroid med for 10 yrs and never had this problem before. Just thought I'd check with you though.

Hi @Phoenix I'm sorry you have this symptom too. Shortness of breath is one of my symptoms and can be an "air hunger" symptom of thyroid disease. But as I understand it shortness of breath can also be indicative of many different conditions so is not pathognomonic for thyroid disease.

https://www.nahypothyroidism.org/how-thyroid-dysfunction-can-cause-breathing-problems/

 

[Phoenix]

@missy, thank you.

Hmmm....I had suspected this but wasn't sure. It might still not be the cause. I mean, like I mentioned, I've been taking Euthyrox for 10 years now and never had shortness of breath til now. But then that doesn't mean that my body is now not reacting adversely to this T4-only med.

I've scheduled an appt with a heart specialist next week and also seeing an endocrinologist the week after. I'm also reading up on iron and cortisol problems, which I know you've mentioned - but I still don't fully understand. I will have them tested, but I seem to remember I had my iron level tested just over a year ago and that was fine. Problem with these endocrinologists here is that they refuse to prescribe meds that contain T3, and definitely not NDT.

Tell me: are you now low on B12 then? Are you taking supplements? Again, you may have mentioned previously in your other thread, but I don't remember - forgive me.

Reading also on pooling and RT3. Will get round to reading about adrenal issues and exercise. Wow, a lot of infor to absorb. May have a ton more Q's to ask you later. RE insomnia, I've been battling this for over 10 yrs, with the worst being right now. While I hear you on light exercises, sometimes I can't even do that. I am trying sooo hard to stay away from sleeping pills (been there, done that...sooo not good). But I've been going for daily walks, so even if I don't lift weights (which I really love), I can at least put in a little bit of cardio.

Ok, chat again in a bit...

Hope today is seeing you getting some relief and tomorrow will be a better day and day after better still....(These days, I just want to take it one day at a time...hanging on to hopes...)

{{HUGS}}

 

[missy]

@missy, hmmm....I had suspected this but wasn't sure. It might still not be the cause. I mean, like I mentioned, I've been taking Euthyrox for 10 years now and never had shortness of breath til now. But then that doesn't mean that my body is now not reacting adversely to this T4-only med.

I've scheduled an appt with a heart specialist next week and also seeing an endocrinologist the week after. I'm also reading up on iron and cortisol problems, which I know you've mentioned - but I still don't fully understand. I will have them tested, but I seem to remember I had my iron level tested just over a year ago and that was fine. Problem with these endocrinologists here is that they refuse to prescribe meds that contain T3, and definitely not NDT.

Tell me: are you now low on B12 then? Are you taking supplements? Again, you may have mentioned previously in your other thread, but I don't remember - forgive me.

Reading also on pooling and RT3. Will get round to reading about adrenal issues and exercise. Wow, a lot of infor to absorb. May have a ton more Q's to ask you later. RE insomnia, I've been battling this for over 10 yrs, with the worst being right now. While I hear you on light exercises, sometimes I can't even do that. I am trying soooo hard to stay away from sleeping pills (been there, done that...sooo not good). But I've been going for daily walks, so even if I don't lift weights (which I really love), I can at least put it a little bit of cardio.

Ok, chat again in a bit...

Hope today is seeing you getting some relief and tomorrow will be a better day and day after better still....(These days, I just want to take it one day at a time...hanging on to hopes...)

{{HUGS}}

Just a few quick points. To test for cortisol you must do a 24 hour cortisol saliva test. Blood testing is inaccurate at best and very misleading so let me know and I will link you to the test and you can hopefully order it yourself or ask your physician to order it for you if need be.

As for iron you must have all 4 lab results tested...ferritin, TIBC, % saturation and total iron. Not just iron and not just ferritin. You need all 4 results.

I am taking many supplements mainly due to my MTHFR homozygous mutation which does not allow me to detoxify. I am taking methylated B vitamins including B12 and methylfolate.


Yes endocrinologists here also are reluctant to prescribe NDTS and/or T3.
The endocrinologist I am seeing now does not want to Rx T3 and I was surprised he was willing to Rx NDTs for me but I think he is also giving me some professional leeway since I am in (or was in) the medical field. So he is very respectful and when he disagrees with me he does it nicely and when he isn't sure he is honest and so I am sticking with him hopefully for a long time and hopefully he can help me. There is much he doesn't know though so it concerns me because like many physicians he is somewhat resistant to change. But I like that he is not totally close minded and he has potential.

You are right that it is so much info to absorb. I am still learning. Take your time and do not stress. It took us a long time to get to where we are and so I guess we have to be patient and do the best we can to try "fixing" what is happening to our bodies and yes our minds as that is affected to. They are linked no question.

It is good to get your heart checked out and I know I need to do that as well. I am just so sick and tired of going to the doctors. .I know you kwim. Good luck with the cardiologist

(((HUGS))).

 

[Phoenix]

Just a few quick points. To test for cortisol you must do a 24 hour cortisol saliva test. Blood testing is inaccurate at best and very misleading so let me know and I will link you to the test and you can hopefully order it yourself or ask your physician to order it for you if need be.

As for iron you must have all 4 lab results tested...ferritin, TIBC, % saturation and total iron. Not just iron and not just ferritin. You need all 4 results.

I am taking many supplements mainly due to my MTHFR homozygous mutation which does not allow me to detoxify. I am taking methylated B vitamins including B12 and methylfolate.


Yes endocrinologists here also are reluctant to prescribe NDTS and/or T3.
The endocrinologist I am seeing now does not want to Rx T3 and I was surprised he was willing to Rx NDTs for me but I think he is also giving me some professional leeway since I am in (or was in) the medical field. So he is very respectful and when he disagrees with me he does it nicely and when he isn't sure he is honest and so I am sticking with him hopefully for a long time and hopefully he can help me. There is much he doesn't know though so it concerns me because like many physicians he is somewhat resistant to change. But I like that he is not totally close minded and he has potential.

You are right that it is so much info to absorb. I am still learning. Take your time and do not stress. It took us a long time to get to where we are and so I guess we have to be patient and do the best we can to try "fixing" what is happening to our bodies and yes our minds as that is affected to. They are linked no question.

It is good to get your heart checked out and I know I need to do that as well. I am just so sick and tired of going to the doctors. .I know you kwim. Good luck with the cardiologist

(((HUGS))).

Noted the parts in bold. Thank you, @missy. I am also going to ask the endocrinologist about taking LDN. I am a bit wary about the insomnia side effect though. Also, I've been meaning to ask you: how is your cholesterol level? I believe that it's also affected by thyroid disorders.

I'm gonna read Dr Izabelle Wentz book too. She seems to be highly recommended, from the various sites I've visited.

Just saw this, you might find it interesting:
https://theheartysoul.com/checking-...nPBCgVqfdclQKR6HvcRAi_DFqPtM3uUpxereqIRvKwRAw

And @missy, shall we move our discussions to your AI thread? Others might find it helpful. I'm ok either way, will go with what you decide.

 

[Phoenix]

@missy, so I looked up the results from the test I did a little over a year ago. I thought I'd misplaced the paperwork but found it, yay! So they do all 4 iron tests. But they only do Free T3 and Free T4, not Total T3 and Total T4. Does this matter? Also, a cholesterol test is included, as is testing for B12 (interestingly enough, my B12 level was a little high, increased a little bit after the test was repeated one month afterwards).

Pls see attached.


I'm gonna repeat all these tests. Plus, I'll do the cortisol saliva test and a bone density test.

 

[missy]

Noted the parts in bold. Thank you, @missy. I am also going to ask the endocrinologist about taking LDN. I am a bit wary about the insomnia side effect though. Also, I've been meaning to ask you: how is your cholesterol level? I believe that it's also affected by thyroid disorders.

I'm gonna read Dr Izabelle Wentz book too. She seems to be highly recommended, from the various sites I've visited.

Just saw this, you might find it interesting:
https://theheartysoul.com/checking-...nPBCgVqfdclQKR6HvcRAi_DFqPtM3uUpxereqIRvKwRAw

And @missy, shall we move our discussions to your AI thread? Others might find it helpful. I'm ok either way, will go with what you decide.

Yes my cholesterol has always been on the higher side of "normal" with a very high HDL and not low enough LDL but it has been creeping up since my thyroid functioning has been decreasing...low 200s with still a high HDL and the doctor(s) is not concerned but of course I am keeping an eye on it. You probably already know that the total cholesterol number is not something that is given too much weight anymore but moreso the ratio b/w HDL and LDL and also (and perhaps most improtant) the size of the cholesterol molecules. I have never had mine measured because once again mainstream medicine is still catching up to that. You are right @Phoenix that with impaired thyroid function cholesterol levels can go higher.

I loved the Izabella Wendtz book. She is very reasonable and her book is a pleasant easy to comprehend read.

LDN has not contributed to my insomnia and if anything helps me fall asleep much more quickly than before I was taking LDN. I worked my way up from 1.5 mg to 4.5 mg which is the max for AI conditions. I hope you find it helpful. As I wrote it has very few side effects and has the potential to greatly help AI conditions though it does not help everyone. And only through trial and error can we know if it will be helpful for us. Fingers crossed.

Good luck with the cortisol saliva test. It was a challenging test. No working out the day of and no coffee the day of since it is recommended to have no caffeine or work out for 2 days but I compromised and did one as I felt it was more of a true picture of my "real" life. Freeze each sample after you take each one and then ship overnight. It is worth the extra cost to ship overnight. Pick a lab that has ranges of normal and not less than or greater than because it is where your results fall within the range and not that it simply falls within the range if that makes sense.

I used the ZRT saliva testing. They offer ranges and are have much experience with this type of testing.

https://www.zrtlab.com/sample-types/saliva/


I am good with continuing the discussion on your thread. I have a feeling not many people are interested in this topic anyway so it probably doesn't matter where we have it. Since we are already discussing it here and it does tie in to the original topic I think it is fine to leave here if you are good with that. I am ambivalent and cannot make any more decisions than I absolutely have to.

 

[missy]

@missy, so I looked up the results from the test I did a little over a year ago. I thought I'd misplaced the paperwork but found it, yay! So they do all 4 iron tests. But they only do Free T3 and Free T4, not Total T3 and Total T4. Does this matter? Also, a cholesterol test is included, as is testing for B12 (interestingly enough, my B12 level was a little high, increased a little bit after the test was repeated one month afterwards).

Pls see attached.


I'm gonna repeat all these tests. Plus, I'll do the cortisol saliva test and a bone density test.

Your iron labs look good to me @Phoenix and yeah cholesterol on the higher side. Free T3 and Free T4 and Reverse T3 are the 3 most important thyroid tests and you don't need total T3 or total T4. Your B12 looks good as does your folate. You want the B12 at the top of the range.

Your TIBC is a bit high (mine is very high) and that means you are binding the iron and it is not as available for use. I don't know what to do about that and have the same issue. The iron article you linked is very interesting thank you and I carry one of those genes for iron problems yet my iron total tends to be on the low side as does my ferritin. It is such complex issue and all tied to the other health conditions. Challenging sorting it all out.

Your iron went up on the second test. As did your % saturation (and ferritin). Did you start supplements is that why?

Your free T4 is pretty good in the middle of the range. Your free T3 is a bit low (but so much better than my free T3 which is way below the lab normal low). You are (according to the "experts") supposed to fall in the top 1/4 of the free T3 "normal" range. I am below the lab normal but while you are not in the top 25% you are still on your way there and well within the lab normal range...not too bad. The question I have for you is how do you feel?

And yeah the TPO antibodies and thyroglobulin antibodies are high. I am hoping that now that you are gluten and dairy and soy free those numbers will drop for you.

And your liver function is good! Mine has been creeping up and I am concerned about that but the doctors are ignoring it for now...only so much they can deal with cause I am sort of a challenge and a mess. LOL. At least I am maintaining my sense of humor right?

I would ask (sorry I don't remember if they refuse to do this test) for a reverse T3 test.

 

[Phoenix]

Yes my cholesterol has always been on the higher side of "normal" with a very high HDL and not low enough LDL but it has been creeping up since my thyroid functioning has been decreasing...low 200s with still a high HDL and the doctor(s) is not concerned but of course I am keeping an eye on it. You probably already know that the total cholesterol number is not something that is given too much weight anymore but moreso the ratio b/w HDL and LDL and also (and perhaps most improtant) the size of the cholesterol molecules. I have never had mine measured because once again mainstream medicine is still catching up to that. You are right @Phoenix that with impaired thyroid function cholesterol levels can go higher.

I loved the Izabella Wendtz book. She is very reasonable and her book is a pleasant easy to comprehend read.

LDN has not contributed to my insomnia and if anything helps me fall asleep much more quickly than before I was taking LDN. I worked my way up from 1.5 mg to 4.5 mg which is the max for AI conditions. I hope you find it helpful. As I wrote it has very few side effects and has the potential to greatly help AI conditions though it does not help everyone. And only through trial and error can we know if it will be helpful for us. Fingers crossed.

Good luck with the cortisol saliva test. It was a challenging test. No working out the day of and no coffee the day of since it is recommended to have no caffeine or work out for 2 days but I compromised and did one as I felt it was more of a true picture of my "real" life. Freeze each sample after you take each one and then ship overnight. It is worth the extra cost to ship overnight. Pick a lab that has ranges of normal and not less than or greater than because it is where your results fall within the range and not that it simply falls within the range if that makes sense.

I used the ZRT saliva testing. They offer ranges and are have much experience with this type of testing.

https://www.zrtlab.com/sample-types/saliva/


I am good with continuing the discussion on your thread. I have a feeling not many people are interested in this topic anyway so it probably doesn't matter where we have it. Since we are already discussing it here and it does tie in to the original topic I think it is fine to leave here if you are good with that. I am ambivalent and cannot make any more decisions than I absolutely have to.

Hmm, first time I heard about the ratio (colour me ignorant, lol). So in Sept last year, my readings were:
Total cholesterol: 7.03 *38.6 = 271
HDL: 74
LDL: 4.6 * 8.6 = 178

Wow, if I read just the numbers alone, my numbers are super high. I'd previously thought I was borderline high. But then, my total cholesterol/ DHL ratio is 3.6, which is just a little higher than the desired 3.50 ratio.

Mind you, at the time these tests were taken, I was training rigorously 4-6 times a week and eating super healthy. My body fat was around 20%. Since I became ill, I've been exercising a lot less and not eating so healthy. I used to eat a lot less carbs and have never been much of a dairy kind of person anyway. I expect my body fat is in the mid-20's now, if not worse. So I expect the results from my tests tomorrow will be worse than last year's. Plus, I have a family history of high cholesterol and my mum in fact died of a heart attack. So, I am feeling a little apprehensive, TBH.

How does one measure the size of the cholesterol molecules? Again, first time I am hearing this. I am so glad to be talking to you, @missy.

Low 200s for total cholesterol with high HDL is great!! It's always a good idea to keep an eye on it, bc of our impaired thyroid function.

What brand LDN are you taking? Can the endocrinologist prescribe one for me? Glad to hear it's not causing you any insomnia issue. I remember reading from your AI thread that this was a problem for you, glad it's got better.

Re the cortisol saliva test, I didn't know about not working out. I did in fact have an excellent workout today. Noted no caffeine tomorrow. I will ask about the ZRT testing but not sure that they offer that. All I was told is to come in, do a swab, got some instruction about not brushing teeth and not drinking anything for 15 mins prior to the test. I understand they send off the sample overnight. Are you recommending that the swabs be done more than once?

Understood what you said about the results ranges, though I am not sure what this lab offers. I guess I will find out, and will report back.

Ok, then we shall continue our convos here.

Thank you, @missy. x

 

[missy]

@Phoenix sorry if I am being dense (I am still groggy from waking up and tired) but the saliva test you are doing is samples throughout the day right? Critical for that to happen as cortisol needs to be measured throughout the day to get a proper cortisol profile.

Your HDL cholesterol is good so I don't think you need to be concerned at this time about your levels. It is tricky for me reading your results since the labs are so different re values and lab normals and I am interpreting it the best way I can but please do not take what I am writing as gospel. Just sharing with you what I know. I think your cholesterol numbers are good despite your LDL being high. Your HDL is high which is *good* and your total cholesterol is within the lab normal range so you are not even above it as I am so I think you are OK. And the focus is less on the number anyway these days. We need cholesterol and do not want it too low and IMO yours is not in the too high range either...though the size of the molecules do matter. More on that below.


As for the measuring of the chol molecule size I haven't had that done myself as my internist points out (rightly so) what would I do if the molecules prove to be small (that is bad) because I am not going to go on cholesterol lowering meds so there is no point (at this time) to do the costly test to measure the size of the molecules and my guess is the same applies to you. So unless you are willing to go on meds (and they have a whole host of negative side effects so I caution against that based on your findings which are not bad at all IMO) there is no point to measure the size of the cholesterol molecules at least for now. Also important is the ratio of triglycerides to HDL. HTH.

Another viewpoint.

https://www.mayoclinic.org/diseases...expert-answers/cholesterol-ratio/faq-20058006

and some quick info re size

https://heartmdinstitute.com/heart-health/vap-test-cholesterol-particle-size/

http://www.berkeleywellness.com/healthy-eating/diet-weight-loss/article/cholesterol-size-matters

 

[Phoenix]

@missy, you're not being dense at all! You're helping me more than you know. I spoke to the receptionist today and she only mentioned doing it once. Mind you, I've been frustrated talking to her bc...hmmm...at the risk of sounding horrible, she's not the most switched on. She gets a lot of things wrong/ is terribly misinformed etc...So I wouldn't be surprised if she got that wrong too. I shall ask tomorrow. Appreciate your letting me know.

Chat tomorrow re other things?

Hope you have a good day, @missy. x

 

[missy]

@Phoenix check out the ZRT link I shared with you and please read this link too. It contains more details about what you need to do to take this test properly for most accurate results.

http://www.tawki.info/AdrenalTesting.html



You need to get different saliva samples throughout the day. First thing in the AM, early afternoon, late afternoon/early evening and right before bed. You are looking at falling within a specific point in each range depending on the time of day. First thing in the AM your reading should be at the very top of the range as an example and right before bed it should be at the very bottom of the range.

Chat tomorrow and have a good day/night. (((Hugs))).

 

[missy]

Adrenal / Saliva Cortisol Testing

Testing times:

• Within a half hour of your normal waking time
• 4-5 hours later
• 4-5 hours later
• Your normal bedtime

The following information is CRITICAL information that we have learned about testing your adrenals with a saliva test and is based on patient experience.


READ THE LIST OF PRESCRIPTIONS AND SUPPLEMENTS TO AVOID BELOW


SHIP TEST OVERNIGHT IN HOT WEATHER. Freeze the samples as well, even in cooler weather. Overnight shipping no matter what country it's shipped from: : Do NOT believe that you can get away with NOT doing overnight. We saw a lot of WEIRD results when saliva results took a week, years ago. Not saying they would all end up that way, but enough did that we started saying to overnight it.



UPS/Canary Club/Canada: ZRT website indicates customers do not receive a shipping label with orders outside the US when ordering directly from them. Canary Club doesn't send a pre-approved label for Canada but they do recommend UPS (special instructions from ZRT: If UPS or any other courier requires extra documentation you could give them these 2 documents and it would probably solve the problem. All you have to do is ask Canary for them when you order the test kit) Invoice sample if you need it:



Please do not rinse before spitting, we do suggest that you put nothing in your mouth at all a half hour before testing.

Things to avoid the day before and day of the test:

• No lip products on the day of the test.
• Caffeine- has disruptive effect on adrenals.
  
• Exercise- can lower or raise cortisol
  
• Alcohol
  
• Use ZRT or one of the other labs with ranges. If we get labs done using less than signs we cannot do the math to figure out the top 1/4 and mid range.
  
• Try magnesium to get to sleep the night before the test.
  
  

Supplements and medications to avoid when testing cortisol

Patient experience has shown that thyroid patients with suspected adrenal issues learned that if they continue to take certain supplements and medications right up until doing their saliva cortisol test, they don’t see what their adrenals are doing without an influence on them by those medications and supplements”.



When possible, we have found that we want to treat the “natural state” of our adrenal function, not the “influenced state”, whenever possible. There are things that are simply just not safe to stop, antidepressants for example, in these cases, we would need to test while still on them. Always work with your Dr before stopping anything.


Below is a list of more common medications and that may be influencing adrenals in their cortisol production. Many patients state they stop taking as many of these over-the-counter supplements they can for two weeks before testing. Some may not be able to go that long without them.



Caffeine is mostly out of the system in about 24 hours, to be safe, we suggest no caffeine the day before or day of saliva cortisol testing. Many find they need to wean back gradually to not have withdrawal symptoms while testing, which also may cause an influence on the cortisol results.



SUPPLEMENTS THAT COULD POTENTIALLY AFFECT ADRENAL FUNCTION (giving a false result of what your adrenals are doing naturally–you want to know what they are doing on their own). These need to be off of 2 weeks when possible, unless noted otherwise:
• Adrenal glandulars (We actually never take these, they contain Adrenaline, that we make too much of with adrenal issues!)
• 5-HTP (serotonin precursor)
• Adrenal Cortex
• Astragalus
• Ashwagandha
• Caffeine (from chocolate, coffee, tea or caffinated sodas, for example)
• CBD Products
• CORDYCEPS
• DHEA in higher amounts (it’s recommended to be off all DHEA for at least 72 hours)
• FLONASE
• GABA
• Holy Basil
• Jujube
• Kava kava
• Licorice Root
• Magnolia root extract
• Melatonin
• Over-the-counter asthma supplements
• Over-the-counter cold supplements (with ephedrine and pseudoephedrine)
• Paba
• Pantothenic Acid -Vitamin B5
• P5P–the active form of B6 (could lower cortisol in some)
• Phosphatidyl serine (PS)
• Pregnenolone
• Progesterone
• Relora
• Rhodiola
• Schizandra Berry
• Siberian Ginseng (Eleuthero)
• Theanine
• Valerian
• Zinc


PRESCRIPTION MEDICATIONS WHICH DO OR COULD AFFECT ADRENAL FUNCTION (you may or may not be able to safely get off these! Please work with your doctor):

• ADHD meds (Adderall for example)
• Anti-depressants (whether Tricyclic or SSRI)
• Anti-anxiety meds, such as Benzodiazepines or Benzos (Xanax is an example)
• Asthma prescription medications or sprays
• Beta Blockers (Lopressor or Toprol XL, Atenolol or Tenormin, Labetalol like Normodyne and Trandate)
• Blood Pressure medications
• Compounded Progesterone
• Florinef
• HC (Hydrocortisone like Cortef and other brands)
• Lyrica/Gabapentin
• Medrol (aka Methylprednisone)
• Pain killers for arthritis
• Pain killers for Migraines (aka Imitrex)
• Prednisone or Prednisolone
• Sleeping Pills (such as Lunesta, Ambien)


And here’s a medical article about it all:

https://www.researchgate.net/publication
26695903_Medication_effects_on_saliva_cortisol_Tactics_and_strategy_to_minimize_
impact_in_behavioral_and_developmental_science

How caffeine affects Cortisol:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2257922/


WHERE TO ORDER A SALIVA TEST KIT:

In the U.S.:

https://www.canaryclub.org/index.ph...iles/focused-tests/cortisol-4x-stress-profile

In Canada:

http://rmalab.com/

In Europe:

http://www.regeneruslabs.com/shop/p...-hor05-606?attrib=&attrib=1-4&attrib=&attrib=

In Australia:

http://nutripath.com.au/product/adr...asic-or-extensive-saliva-test-code-1001-1002/
Ask for a 'self-referred patients disclaimer agreement' waiver form to be emailed/sent to enable you to order your own kit and results without needing to go through a doctor. Phone: 1300 688 522 Address: NutriPATH PO Box 442 ASHBURTON, VIC, 3147 Australia