Sanity check please!

[Olsbird]

Hi everyone. I'm hoping someone can give me a sanity check.

The short version of what has been a very long 3 year saga... 50 mcg levo made me really ill. Eventually endo gave me ndt. Climbed slowly to 2 tablets/day and started getting ill again (burning chest, eyes on stalks, stabbing pain lower left back, too hot.....). Kept dropping the dose. Would feel better then after a few days/a week would be ill again. Drop another 1\4 then feel better then get ill again. On it went. Eventually ended up on 1\4 grain naturethroid every other day. Had swelling sensation in my neck but when I stopped eating gluten that disappeared (I'm not hashis btw). So for nearly a year I've been gluten free and on 1\4 grain and feeling better but every so often I start to feel under medicated - tired, puffy eyes, my throat feels sore (like I'm being strangled)... So I take a tiny bit more ndt (somewhere between 1/8-1/16th of one tablet and I lose the puffy eyes, throat etc. Until a few weeks later and it starts again. I take a little bit more and feel better and lose the sore throat etc. I tried and failed to do a regular increase - like 1/4 every day or week as I start to go over (too hot etc). It's just a tiny bit I seem to need every few weeks.

Gp is not interested in blood testing me other than 6 monthly and even if he were I'm concerned that my blood test results are irrelevant to how I feel (when I was on 50 mcg levo for example my bloods were suggesting I needed more but according to endo my 'side effects' were due to being over medicated). Also they only test tsh and if that's within range they refuse to test t4 or T3. What's clear to me is I'm ridiculously sensitive to any drugs and thyroid meds don't break the mould. I can't afford private blood tests every month.

Is there anyone out there like me?! And does it make sense that these issues I complain about (puffy eyes etc) must be down to being undermedicated if they disappear with extra ndt? I feel like I'm going mad and endo and gp just look at me oddly when I explain this as it's not 'normal'.

It sort of made sense to me in that if every time I take ndt it's fractionally not enough then there will be a cumulative effect.

I'm not celiac and tested negative for Addisons. Vitamins ferratin etc are all ok.

Thanks all.

[greygoose]

Oh, complicated! But, I can assure you, you're not going mad.

Your post is a bit difficult to follow, with all the ups and downs, but I think you have a really rotten endo, there, who prescribes NDT and then won't test the FT3! That's the most important number.

So, recap a bit, how much NDT are you taking at the moment? And how long have you been on it? And what was your TSH on that dose (just out of curiosity)? And, which NDT are you taking? It could be that it's not the right one for you. It could also be that NDT isn't right for you - it doesn't suit everyone - it didn't suit me. I'm only ok on synthetic T3. So, lots of things to think about, there.

Also, you say your vitamins etc. are all 'ok'. Well, 'ok' often isn't good enough. To do well on NDT, you need optimal nutrients. So, why not post your results and ranges, and let's have a look.

[Olsbird in reply to greygoose]

Thanks for replying and yes sorry it’s complcated. I’m in transit for a few days and sorry don’t have results to hand. I think my questions are (a) is it ‘ normal ‘ to need such a low amount (b) is it ‘normal’ to feel under medicated every few weeks. I take 1/4 grain Naturethroid every other day. I like it better than Levo and I struggled with T3 as it’s very potent and the tablets are really difficult to break down. As you probably know the smallest dose manufactured is 5 mcg which is just way too much for me.

To be fair my (private) endo would do blood tests if I would pay for them. And he has tried really hard to help me but I don’t think he’s encountered anyone quite like me before so it’s new ground for him.

[greygoose in reply to Olsbird]

Well, it's rather difficult to tell you anything without seeing the blood test results - full bloods. I appreciate you don't have the results with you at the moment, but have you had your nutrients tested?

Taking 1/4 grain every other day is not a great way of doing things. NDT contains T3, and if the body is going to stand any chance of recovery it needs a steady, continuous, daily dose of T3. T4 you can take as and when you feel like it, more or less, because it's a storage hormone. T3 is the active hormone needed by every single cell in your body. Imagine if you were only feed every other day, or given water every other day. You'd be pretty sick, wouldn't you.

As to whether or not that's all you need, I very much doubt it is 'normal' in any sense of the word. But, full bloods would tell you more. TSH won't tell you anything! It's not even worth testing on its own. It's a very small part of the story when taking NDT. The FT3 is the important number, and your endo should no that. There's no excuse. He is not treating you correctly if he isn't testing the FT3, and that amounts to negligence. And, you know what the weird thing is? That's what they say to all their patients! 'I've never met anyone like you', 'I've never ment anyone who didn't get better on levo' is the usual cry - I don't get on with levo, and I've heard that from every doctor I've seen. And, when you think about it, that's not possible. I can't be that unique! lol I think the problem is that they just don't listen to their patients, so they really have no idea if the patient gets on with levo, or is unique, or whatever. Sorry, it just doesn't wash with me.

Question b) is another matter entirely. And, I would have to answer 'yes'. This is the way it works: your body has been starved of hormone for a long time - hypothyroidism doesn't happen over night, it is slow and insidious, and when the production of thyroid hormones starts to slow down, the adrenals take up the slack. So, we don't notice at first that there's anything wrong. The symptoms start gradually, and we put them down to stress, getting older, etc. By the time they get bad enough to send us to the doctor, we've been without enough thyroid hormone for a long time.

So, we start thyroid hormone replacement - and we have to start low and increase slowly so as not to shock the body and make things worse. One of two things can happen when we first take that hormone - either it makes us feel worse, or it makes us feel better. If it makes us feel better, it's because our body is so relieved to finally get some hormone. But, it's only a tiny dose, so it doesn't go very far. And, after the initial relief, you realise that it's not enough, and the symptoms start creeping back in again. And, all that means is that you need a higher dose. So, you increase the dose. And, the same thing happens: relief at first, followed by the subconscious realisation that it's still not enough. And you increase again. And, this continues until you do get onto the right dose, and the symptoms don't come back.

But, what you've been doing is reducing your dose. I presume you thought your symptoms were symptoms of over-dosing. But, that's where the labs come in. Your TSH was obviously suppressed by the time you got to 2 grains. But that means nothing. It didn't mean you were over-medicated. It was suppressed because of the T3. And, that's why your FT3 should have been tested at that point. That would have told you if you needed to decrease or increase. And, that's why I think your endo was negligent.

So, that's what you need to do next to get the answers you need: full labs:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

And, when you get those results, you'll get a better picture of what's going on.

[Olsbird in reply to greygoose]

Thanks 😀

[mischa]

I have often read that when you cannot tolerate small increases of thyroid meds it can be due to low iron or low/high cortisol. Have you considered doing a 4 point cortisol saliva test? It will show you your cortisol output throughout the course of a day. Cortisol should be high in the morning and then gradually taper down towards the end of the day. Variations, such as very high cortisol or low cortisol output will affect how you metabolise thyroid medication. Cortisol is essential for thyroid medication getting into cells and doing its job.

[Olsbird in reply to mischa]

Thanks.