Help please - cannot tolerate any kind of hormone in quantity - what next??

[Olsbird]

Can anyone help me please!! Other than at very low levels I cannot tolerate levo or ndt or T3. I've been in a 4 year cycle where thyroid results always out, told to take more, can't tolerate more (tight chest, weakness in arms, breathlessness, burning in chest.....) So have to drop the dose. I lose the side effects then start to feel crappy (tired, hair falling out, lethargic) to back to drs and the only thing wrong is thyroid levels so they tell me to increase and the whole circle starts again. I just cannot tolerate anything (I've tried different brands). I'm gluten free (negative for celiac). Good response on synacthen test. Gastroenterologist says it's nothing to do with my guts why I can't tolerate it. All the vits etc are fine. My liver function, kidney function, red/white blood count all good. What's wrong that I can't tolerate anything to the level I need it. I know well meaning folks are going to say post all your results but they are all within range and it cannot be that's the reason. Is anyone else like me? Has anyone got ideas who I can see for help - endorsed just tells me to take more even though I can't. Gp is amazingly helpful but admits he's struggling and why he suggested gastroenterologist. I'm feeling increasingly despondent - it's been 4 years now and I just don't know where else to turn to for help. Thanks all.

[diogenes Remembering]

Tried T4 in liquid form? Might be you are intolerant to pill additives. Liquid T4 is available for special cases.

[Olsbird in reply to diogenes]

Yes. Didn't like liquid thyroxine any more than the tablet versions. 😣

[greygoose]

How about your adrenals, have they been tested? Cortisol and DHEA? What about nutrients: vit D, vit B12, folate, ferritin?

[Olsbird in reply to greygoose]

Nutrients, vits all ok passed synacthen test. No other illnesses or medications.

[RedApple Administrator in reply to Olsbird]

I imagine you've already tried this, but in case not... antihistamines? Just thinking your tight chest, breathlessness etc could be a histamine reaction.

[Olsbird in reply to RedApple]

Yes I've tried antihistamines. The tight chest and breathlessness goes away when the dose drops so I think it's the thyroid hormone that cause it. It's all so weird. I just don't know what to do next. Grrr😥

[cazmania7]

I know next to nothing but I’m pretty sure in the book stop the thyroid madness, it says that if NDT or T3 doesn’t seem to be working for you, it’s actually revealing an issue that need addressing elsewhere ie iron or adrenals if I recall. Info will be on their website, you don’t have to get the book. Sorry if you have already explored all that

[Olsbird in reply to cazmania7]

Thanks. I'm going to get the book and see a naturopath I think. I don't have much hope staying with the mainstream is going to get me anywhere. Just sent you a pm in case you have a nearby recommendation for any miracle worker s ☺

[Meanbeannyc]

I have the same problem. Ever get it sorted?

[Olsbird in reply to Meanbeannyc]

nope. just keep going round in circles. gastroenterologist says nothing wrong with my guts, endocrinologist says im unusual and maybe something else causing me problems, go says all the blood tests are fine, immunolgist says maybe Im sensitive to something but doesnt know what so keep trying different brands. if you ever get an answer let me know as I honestly dont know what else to do. currently trying eltroxin brand but just half a 25 mcg tablet every other day made me overdose at week 3. chest goes tight, cant breathe, too hot...the more I take the worse it will get. sigh!

[Meanbeannyc in reply to Olsbird]

Have you ever tried stopping everything for a short while and titrating up slowly? And using a beta blocker for your “hyper” symptoms??

[Meanbeannyc in reply to Olsbird]

U ever think about getting intravenous synthroid?

[Meanbeannyc in reply to Olsbird]

Someone just told me on the Reddit boards they had eosinophilic esophagitis from synthroid. Tirosint worked for them. And that’s what I’m switching to next month.

[Meanbeannyc in reply to Olsbird]

If I were u I’d just keep increasing and increasing til you’re out of hypo according to labs

[Meanbeannyc in reply to Olsbird]

I’m Assuming the hyper symptoms are coming from adrenaline rather than overmedication?