Remission - how does one not go crazy?!

Hi all,

I have just come off of block and replace at my Endo's instruction. I had an 18 month treatment protocol consisting of initially Carbimazole, then B&R. I was diagnosed approx 5 months after having my daughter and at that point was hyper but testing negative for Graves and positive Anti TPO.

I was wondering what helped those of you who came off medication for remission coped with the anxieties surrounding if you would or not. I am positively terrified that I will become ill again, as these past couple of months have been the best I have felt in 2 years. I am also terrified of having a thyroid storm, although I don't know if I am truly hyper or hypo at this stage.

ANY suggestions on how to cope with this warmly welcomed.

11 Replies

  • I can't give you much advise about block and replace, because I've never tried it. But, if your TPOabs are high, then you have Hashi's, and the hyper phase is only temporary. Eventually, you will go hypo. In which case, you need some sort of thyroid hormone replacement. Even when your labs are euthyroid, you should be taking Levo to support the gland during the inévitable immune system attacks. But, doctors are too dumb to understand that!

    I would suggest that you get hold of your latest lab results - if you haven't already - and post them in a new question - with the ranges - and let people see exactly what's going on. It's very had to advise without seeing them. :)

  • Thanks Greygoose!

    My latest labs were:

    TSH: 3.69 (0.3-6)

    FT4: 17.7 (9-24)

    I have only been off of medication for 3 days now, so probably far too soon to know if my symptoms will return, but I was pretty free of symptoms with the above labs for the first time in a long time!

  • Well, you may be free of symptoms, but those labs are hypo. Although the NHS will not recognise it as so until your TSH reaches 10 or your FT4 drops under-range. At the moment, that FT4 isn't too bad, but your FT3 is possibly low. The NHS doesn't test FT3, though.

    If you start getting symptoms - and they probably won't be the same symptoms because I doubt that you are going to go hyper again - then you should see your doctor at once. If he still says your TSH is 'normal' (a nonsense word!) then you should get a full thyroid panel done privately.

  • Thank you for your knowledge greygoose.

    Would you mind telling me at what level in the ranges is roughly optimal please? And also why these are more optimal than the current classification of 'normal' so I can arm myself if I do have to see the GP!

    That would be much appreciated.

    I feel like my treatment has been more similar to that of a Graves patient, and after all this time I am still confused about that!

  • Because they don't understand the difference between the hyper phase of Hashi's, and Graves which is always hyper. you have to accept that doctors know nothing about thyroid.

    However, if you were very hyper, and the symptoms were causing you distress, then something needed to be done. Although, block and replace seems a little over the top.

    Someone with no thyroid problems whatsoever, will have a TSH of between 0.8 and 1.25. But, doctors do not realise that. For them, everything in the so-called 'normal' ranges will be 'normal'. Therefore, the word is meaningless. They do not understand about optimal.

    As for the Frees, that is very much a personal thing. But, they should be at least over mid-range. But, the most important number is the FT3, which they do not test. You really cannot tell if you have good FT3 levels just from the TSH and the FT4 - although doctors think you can!

    The problem with the ranges is the way they were conceived. They took samples of blood from some of the people having blood tests in the lab - but not very many! - and took an average of those results. What they fail to realise is that not all those people would be totally euthyroid. Some were a bit hypo, some a bit hyper, so it is impossible for those wide ranges to be 'normal' for everybody all the way through. Doctors just do not understand statistics anymore than they understand thyroid, though.

  • It certainly did seem over the top to me. On Carbimazole only I was eventually overtly hypothyroid, which would not stabilise (obviously on Carb) that's when I was switched to B&R.

    I suppose it makes sense if the Endo wasn't sure of my hyper/hypo situation so thought it best to just knock my thyroid out in any case.

    Thank you for your insight, I really do appreciate having the knowledge shared!

    It's very difficult just now because I am anxious re coming off medicine, so I can't tell if my jitteriness is due to that or starting to feel rotten again.

  • Well, he gave you too much Carbimazole, didn't he. Did he test antibodies straight away? They don't always, they just guess, which seems crazy to me!

    I should think you're just anxious at the moment, that's perfectly understandable. Plus, your body must be somewhat confused! Take things easy, and try not to worry. As I said, if you start feeling any unusual symptoms, just go back to your doctor and get a blood test. That's what doctors are there for! lol

  • Thanks so much greygoose. Yes, they tested antibodies after the very first TFT that showed overt hyperthyroidism.

    I'll try to relax 😁

  • :)

  • Hi Chloececilia,

    I am a Graves patient, in remission now for more than 3 years! :)

    I remember how hard those first months were, and there's not much you can do but try to relax and distract yourself. Try to be positive, exercise and eat well, do fun things and avoid stress.

    At first I was constantly monitoring myself, checking my heart rate and other possible symptoms, but over time I managed to relax when the blood results came back fine. The first year I was still having "hyper" periods, that I felt anxious and warm, my heart wouldn't settle, etc., but I think my body had to recalibrate. Now I am completely fine :)

    All the best!! I hope you will be fine as well!

  • Misky, that is so great you have been in remission 3 years! You go!

    Thanks for your reply, it's good to hear from someone who has been through the same fear period. Checking pulse, sounds familiar! 😂

    I imagine hormones get a bit of shock once medications are taken away after such a long time taking them. Hopefully I will be fine too.

    Happy health! Long may it continue for you.

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