Not tolerating thyroid meds...help please - Thyroid UK

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Not tolerating thyroid meds...help please

muulaim profile image
20 Replies

Hello everybody. My name is Aimee. I am 40 years old and was diagnosed with Hashimoto's almost 1 year ago now. I have been unable in the interim to treat with any sort of medication due to the fact that I respond so sensitively to all supplements and medications. I also have a MTHFR mutation. I don't remember exactly which one at the moment but I could post if necessary. I find that levothyroxine and liothyronine cause me to have hot flashes and bad insomnia. I also get some shortness of breath when trying Leah thyronine on its own as well as dry and painful eyes. With ashwagandha selenium Etc I also feel some amount of anxiety and hotness. I've been told that I also have adrenal fatigue but all of the things I'm trying to do to help it heal or not helping much. I had iron infusions last year and my last ferritin check my level was at 100. My vitamin D is good as I have been supplementing. Does anyone know what the problem is and whether I really need to be on medication? While on cytomel, I experienced an improvement in my energy and mood. However my temperature seems to run a little high. Plus there's the issue of having a bit of shortness of breath. And a little bit of confusion and forgetfulness. I would love to know exactly what I'm supposed to be doing and what approach to use to help myself feel better I was told for years that it was all in my head. As a side note I also suffer from complex PTSD and one day I would also like to get tested for Lyme disease as I was bitten by two ticks during a camping trip in Eastern Washington. Does anyone know the possibility of lyme being a driving factor for autoimmune?

20 Replies

I can't comment on Lyme disease... but have to ask if you have investigated using NDT (natural Dessicated Thyroid) as an alternative? Many report tolerating it better than synthetic Levo.

hypothyroidmom.com

muulaim profile image
muulaim in reply to

I don't tolerate Levo or NDT. NDT gave me bad gastric distress. Thank you though.

greygoose profile image
greygoose

If your vit D was low, then other nutrients are probably low, too. Have you had your vit B12, folate and ferritin tested? If they aren't all optimal, then your body will not be able to use thyroid hormone.

Are you taking the vit D cofactors, vit K2 - MK7 and magnesium? If not, it would be a good idea to start. :)

muulaim profile image
muulaim in reply to greygoose

Vitamin D is now good. Vitamin B12 was perfect. I can't take folate, at least not as folic acid with my gen. mutation. Ferritin was stellar at 100 post iron infusions. I take magnesium yes.

greygoose profile image
greygoose in reply to muulaim

So, you're saying you are no-longer taking vit D? Do keep an eye on it, it could go down again.

If you can't take folic acid - which I wouldn't suggest you did, anyway - there's always methylfolate.

What is a 'perfect' B12?

muulaim profile image
muulaim in reply to greygoose

Hi greygoose. Thanks for your reply. I take 10,000 IU of Vitamin D once every week. My B12 was at 800 the last time it was checked. I have tried methylfolate and I have a bad reaction to it. Jittery, anxious on edge.

greygoose profile image
greygoose in reply to muulaim

OK :) That's good.

thyroidt profile image
thyroidt in reply to muulaim

were you able to find an answer. I have the same intolerance issue.

muulaim profile image
muulaim in reply to thyroidt

Unfortunately, no. I think I’m an alien.

Relentlesssearch profile image
Relentlesssearch

Hello - did you ever get anywhere with tolerating your medication? I am now in the same position

muulaim profile image
muulaim in reply to Relentlesssearch

I did not. I've just moved on from even trying given how much time and energy I was spending on it. And my thyroid levels haven't changed much which is interesting (and confusing)...I do feel better these days and I'm wondering if it was a stage of perimenopause that had me feeling so awful. I haven't had a period in nearly 2 years and things are much different for me now. Wishing you the best! ❤️

Relentlesssearch profile image
Relentlesssearch in reply to muulaim

So you have just been hypothyroid for 2 years?? 😮‍💨😮‍💨 bless you!

muulaim profile image
muulaim in reply to Relentlesssearch

My TSH sits anywhere between 2.5 and 4. It's not super high. But my TPO is crazy high. I have no idea what to think anymore. It has been years of doctor visits, frustration, trying different medications, trying different diets and now I'm just in a holding pattern until my TSH goes high enough that I'll be willing to try Levo again.

Relentlesssearch profile image
Relentlesssearch in reply to muulaim

😞 horrible place for you to be. I hope you get somewhere eventually 🙏🏻 I am trying a kinesiologist next month. Have you ever tried one?

muulaim profile image
muulaim in reply to Relentlesssearch

Thank you. I haven't, what exactly do they do? Hoping it helps 🙏

Relentlesssearch profile image
Relentlesssearch in reply to muulaim

It’s muscle testing, it’s a way of the body telling you what it needs as opposed to scouring labs and blood results

KD714 profile image
KD714 in reply to Relentlesssearch

Are you able to take your thyroid meds yet? I am having the same issue trying to find a way to take more.

Relentlesssearch profile image
Relentlesssearch in reply to KD714

Hey, yes I am tolerating far better than before. I tested my cortisol levels and they were horrendously low. I take adrenal cortex and lots of other supps to help. What dose and Med are you on?

KD714 profile image
KD714 in reply to Relentlesssearch

I take Synthroid. I should be taking 90 mcg but I can only take take 12.5 without extreme joint pain. I am trying to increase every other day by 3 mcg and doing that for a couple of weeks. But still struggling. My cortisol levels are ok. I will post my results in a few. What other supplements r u taking?

Relentlesssearch profile image
Relentlesssearch in reply to KD714

honestly, Synthroid/levo were just trash for me. Absolute trash. Ndt is the only thing that actually changes any of my symptoms, altho I still have a lot of improvements to make mentally. I think you might need to change. COVID affects adrenals - did you do a saliva adrenal test? Supps I take are all in my bio 😊

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