Can I have thyroxine for hypo phase of thyroiditis?

[Rocca]

Hi, can a person with transient/temporary thyroiditis be given thyroxine in the hypo phase? My endo says I can't have it because if my thyroiditis is only temporary I might end up on thyroxine it for life needlessly because it will stop my own thyroid working. Is this true?

[silverfox7]

Have you any thyroid results and ranges you can post?

[Rocca in reply to silverfox7]

Hi, thanks for replying, yes I do. I was hyper originally: TSH 0.02, free T4 was 41 (ref range 10-24)

I then went hypo within a month on Carbimazole (TSH around 50, free T4 was 5, T3 was 2.8 (ref range 4-8)

Was taken off Carbimazole. For the past four months I have had no meds and have stabilised at at low normal, roughly TSH 3, free T4 13, free T3 4.2.

At first I felt great but now I feel much worse and wonder if I need some thyroxine.

[greygoose in reply to Rocca]

That all sounds to me like you have Hashimoto's Thyroiditis. Has your endo tested your TPO and Tg antibodies? If not, he should.

He's talking rubbish, anyway. Your thyroid may stop producing hormone when you are on thyroid hormone replacement - if, indeed, it is capable of making hormone! - but, if you stop it, the thyroid will just take up where it left off. Starting levo doesn't mean you're on it for life if you don't need it. That's a myth (why are endos suckers for myths???). But, the odds are, you have Hashi's, and definitely do need it!

[Rocca in reply to greygoose]

Thanks greygoose. My TPO was tested and was over 800 so definitely have antibodies. I don't want to sit around for months/years feeling rubbish needlessly if thyroxine is in fact appropriate. I will discuss this with my GP next week. I know the fact that I am sitting just within in the 'normal' range right now will work against me though, as it seems to for so many people.

[greygoose in reply to Rocca]

A TSH of 3 is hypo in most countries. The ranges in the UK are rediculous. And, you need the levo to support your thyroid - because it is just going to get worse! I cannot imagine what made your endo think your thyroiditis was just temporary, there's no basis for thinking that, as far as I can see. You have high antibodies, and that's it. They don't go away until your thyroid is completely destroyed. And, the fact that you started out hyper, just confirms the Hashi's diagnosis, it doesn't change it. That's the way Hashi's starts - pretty obvious, if you think about it! But most doctors seem to be completely devoid of logic.

[Rocca in reply to greygoose]

Thank you greygoose. I will also certainly mention to the doctors that a TSH of 3 is hypo in other countries. I'm a bit upset now to think it might be Hashi's not Graves' as before I was hoping I might go into Graves' remission and stay there, whereas Hashi's is forever. But I have been having doubts myself anyway.

[greygoose in reply to Rocca]

Hashi's can go into remission for periods, too. But, Grave's often ends in a thyroidectomy, in which case you'd end up hypo just the same.

Learn all you can about your disease, understand it, so that you don't have to put up with the meanderings of the medical mind, and - if necessary - self-treat, to avoid their ignorance.

I'm sorry you're disappointed, but we all learn to live with it - and usually live quite well - in the end.

[Rocca in reply to greygoose]

Thanks for the encouraging words. I will indeed be reading up.

[SilverAvocado]

I don't know much about specifics, but if you have Graves, to switch to thyroid replacement and your thyroid 'stop working' would be an ideal result. Many people go through radioactive iodine or surgery to remove their thyroid to achieve that effect...

I think if your thyroid is going to become over active again it will do it regardless of whether you're on meds or not. And that is what the danger is - that you may start to become hyper and you'll be taking these meds that add to the problem, and it will be hard to pinpoint when you need to stop.

Hopefully someone with more knowledge will come in to advise you.

[Rocca in reply to SilverAvocado]

Thanks SilverAvocado. Yes you would think stopping the thyroid of a Graves' patient would be a good thing! I see your point about going overactive again though and being on thyroxine. I just feel so rubbish right now that I would like treatment if it is appropriate and I was assuming I could just have regular blood tests which would presumably flag up if my T levels were rising inappropriately.

The endo dept doesn't really seem to have decided what kind of thyroid problem I have. First they said most probably Graves' due to the length of time I had been hyper, the antibodies, and because (they said) temporary thyroiditis doesn't respond to Carbimazole whereas I did. Now they are saying possibly temporary because I have remained stable 'normal range' for a little while. Hashimoto's has not even been mentioned but I'm going to ask about that. I really wish they had done me an uptake scan before they put me on Carbimazole, it would have been informative.

Thanks again for the replies.

[Rocca in reply to SilverAvocado]

Hello Silver, you had a good point about going overactive again as I have hung on and my most recent blood tests have come back with a signficantly increased T4 of 19 point something (up from 13) and T3 is 5 point something (sorry no ranges to hand, I was peering at the endo's computer screen!). I think these results now reflect how I have been feeling which is actually a relief. I managed to see the endocrinologist again and she was really good: has commissioned various additional tests including a different antibody one, coeliac, 24 hour urine for adrenals and possibly some others, to cover more bases. I forgot to ask if an uptake scan would now be useful again diagnostically so I must remember to ask that next time! I'm taking a low dose of Propranolol regularly now as encouraged by the endo which is definitely helping so I am happy continuing with a 'wait and see' approach whilst in range. Bloods again in three weeks - that will be interesting...

Thanks to all on the thread who have offered support and advice to me this rotten month.

[HLAB35]

Short answer, if it's Hashi's, then yes, you should. If it wasn't Graves that triggered the hyper- phase then they really shouldn't have treated it as such and been so heavy-handed with the carbimazole (TSH of 50 is way too high). It usually takes considerably longer than a month for carbimazole to raise the TSH of a Graves' patient. Even then, they should have been going for a cautious approach. It sounds like it was a plain and simple Hashi's flare.

Alternatively there's Epstein Barr or other infections that can cause inflammation of the gland that leads to an over secretion of hormone and subsequent heart tremors - but again, no need for heavy-duty carbimazole to knock the gland out of action as the symptoms can be managed with other heart meds. If you're being refused thyroid hormone, then ask them why they were so liberal with the carbimazole - you're hypo now, they need to fix it!

[Rocca in reply to HLAB35]

Thank you, that is a very good suggestion of how I could argue for treament. They were heavy handed with the Carbimazole but now won't treat the result of that! I am interested that it could have been a Hashi's flare.

I am positive for Epstein Barr but that pre-dates (possibly by years) the hyper episode I had. I was, however, ill with a respiratory virus right before I went hyper hence maybe why the endo is keeping a temporary diagnosis in mind. But I do have the high TPO result so am not getting my hopes up too much.

[HLAB35 in reply to Rocca]

Then it's almost certainly a Hashi's flare (I assume you mean TPO antibodies) especially if there are no TSI Abs. The 'response' to treatment was your gland struggling to produce hormone after it had hit the self-destruct button.

Heloise has given you a useful link. Going gluten free (almost always helps - it did for me), dairy free (sometimes helps) and taking selenium (I can vouch for this too) can help reduce antibodies that are destroying your gland. In the meantime, you need hormone replacement!

[Rocca in reply to HLAB35]

Thanks HLAB. I don't think I had TSI Abs done, I haven't heard anything about it anyway. Is that a more specific test? Wondering why I haven't had it done. Perhaps I should ask? Yes I did mean TPO antibodies. Luckily I have already gone gluten free (glad it helped you) as I read something about it back when I was feeling very ill with the hyper and was desperate to do something to help myself. I think I need to be 100% though, haven't always done that. Were you absolutely strict about it for it to work?

[HLAB35 in reply to Rocca]

Yes, eventually!! I did try wheat-free to begin with, but oats and spelt caused bloating and general inflammation. Regular soy sauce caused issues, so did yeast extract and beer.

It's gluten-free all the way now.

The TSI Abs are usually only found in Graves patients.... so they really should have run these tests, rather than come to the unscientific conclusion that it was Graves and to start you on the carbimazole treatment protocol.

Extract below taken from stopthethyroidmadness.com/g... :-

"What tests can I do to confirm Graves?

Sometimes, your first clue is having excessively high levels of free T4 and free T3, patients have noticed, in addition to a very suppressed, below-range TSH. But to confirm it, there are two tests which are commonly used; the TSI and the TrAb.

The TSI (thyroid stimulating immunoglobulin) is going to measure the amount of thyroid stimulating immunoglobulin in your blood, i.e. the IgG antibodies. In addition to a high TSI, some patients will also have a high TPO (Thyroid Peroxide) antibody), called the anti-TPO. Patients with Hashimotos can also have the anti-TPO antibodies but not the TSI.

TrAb stands for thyrotropin receptor autoantibodies and some doctors consider this the primary test for Graves since you won’t usually see this with Hashimotos or Hashitoxicosis."

[Heloise]

I think this explains thyroiditis as an inflammation of the gland. This is destroying your gland so something should be done to stop it. There are so many underlying causes like gluten sensitivity or leaky gut infections. Selenium can help. stopthethyroidmadness.com/t...

[HLAB35 in reply to Heloise]

I agree Heloise. This advice will help a lot.

[Rocca in reply to Heloise]

Thank you for the link. I've just read through it.

I didn't know about selenium, thank you. I had read some stuff about gluten though, and actually did go gluten free back in April as I was so frightened by how I had been feeling (I did fall off the wagon occasionally though when I was feeling well again and I suspect that is a no-no!).

I think I want to say to the GP/endo that the only way to 'prove' it's a permanent rather then temporary problem is for me to sit about feeling awful for unspecified months or years. When surely a doctor's job is to try and make me feel better here and now? Thanks to everyone for helping me start working out what I need to say to keep a discussion about thyroxine going with the doctors.

[Heloise in reply to Rocca]

Hi Rocca, that website can tell you a lot about this very complicated condition. I've read about it for years and years and it is still difficult to know what is going on. Izabella Wentz has excellent information and held a summit call The thyroid Secret. One of the root causes is definitely Epstein Barre. You can learn a lot from you tube videos by John Bergman, Eric Berg, David Clark and others. There are so many implications of low thyroid from your brain to your toes. Conventional doctors are not that helpful but you can do much on your own starting with nutrition. Your stomach lining may also be part of the autoimmune condition so recommending Betaine and digestive enzymes but not at the same time I've just heard. I like apple cider vinegar with meals also helps. The STTM site has valuable information to search as well. A little sampling of a functional medicine doctor:

youtube.com/watch?v=nZ_CP7l...(Not working as expected?)

[Rocca in reply to Heloise]

Thanks Heloise. Wow, there is a lot of information I need to absorb about the hypo side of things on top of what I previously read about hyper. It really does seem like a complicated condition. I guess all these hormones and vitamins and so on are in very complicated and inter related feedback loops and doctors don't know the half of it.

[Heloise in reply to Rocca]

As long as you understand what they don't know, you will be better off. Are you in the U.S.? It's just as bad there I found.

If you get the STTM book or Izabella's Hashimoto Protocol, they cover almost everything. Since you are new, you possibly may turn this around. Keep asking here for good information as well.