What can I do? Latest results given to me by endo who has stopped my carb and giving me no further treatment
T4 9.4 (10.5 - 26)
TSH 15 (0.35 - 4.5)
T3 3.9 (3.9)
He agrees that I am now hypo but won't treat it! Is this correct ? Will I suffer?
Hope you all had a good Christmas
GeorgieB
Did he not discuss this with you? You presumably will have a blood test in a few weeks to check thyroid levels again. How do you feel? What symptoms? I think if you feel reasonable it may be fine to wait and see how stable you are now and perhaps your T4 level will increase a little. It is all a waiting game to see what your thyroid is doing now but I assume you will still be seeing the endo and reviewing blood tests done by him or your GP? If you feel unwell, then obviously you should speak to your GP or endo. xx
Georgie,
Did he explain what he expects to happen? Certainly sounds as if he didn't.
I am guessing that with you coming of the carbimazole, he thinks your thyroid hormone levels will come up without adding any thyroid hormone medication. (And, of course, we'd expect that to be accompanied by TSH dropping.)
With that level of TSH I suggest that once the thyroid is allowed to run again (i.e. no carbimazole to stop it functioning), your thyroid hormones will bounce back. Carbimazole doesn't stay active in your system for long, but I do not know how quickly thyroid hormones levels can rise.
I am always unhappy to see hyperthyroid patients allowed to become significantly hypothyroid because of an anti-thyroid medicine. Indeed, I think that only happens because you cannot be tested every day to check on things. In an ideal world, they would be keeping such a close eye on you that you would never actually become hypothyroid, or at least no more so than a tiny dip. As soon as you get to the right level, they'd ease off on he anti-thyroid medicine. Unfortunately we see this a lot. Indeed, always looks to me that the whole "block and replace" approach is intended to avoid exactly that.
Wishing you all the best - and if you don't feel very much better, and very soon, you must both post again and get to see someone who can directly help you.
Rod
Were you still taking carbimazole when those tests were done? I'm hypo not hyper, so can't speak from experience, but I would think that maybe your TSH/T4 levels were being influenced by the carb. Did the endo suggest a timescale for when he would expect your TSH/T4 levels to change? If not, I would suggest your go to your GP in, say, 6 weeks times and ask for a retest to see what is happening.
I am hypo so don't know the procedure with the treatment of hyper but this is an extract from Dr Toft.
5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?
The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.
Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.
There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.
But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.
Can you find a qualified physician? I thought ours were frightening. Heck, ours are geniuses now. Unless you are still being titrated up and he is not ready to titrate at this time I would say hang in there but if this doc just said that is it - you really are in need of an endocrinologist. Good luck. Hang in there takes forever to find a good doc.
Oh dear I think it is all because I wrote a letter of complaint against my Endo that he is out to make me suffer. Watch this space. Thank you
Georgie: presumably you've been hyperthyroid, had that suppressed with the Carbimazole? What has changed so that your consultant thinks you don't need your thyroid function to be suppressed any more? Have you had radio-iodine treatment? Or a thyroidectomy? Theoretically your thyroid should bounce back to normal from being hypo (which you say you now are) once the suppressing drugs are witheld. That would be A Good Thing. Things are, however, rarely that straightforward. How do you feel (possibly the most important criterion)?
Certainly you need to speak to this consultant again as soon as the blighter reopens for business and make sure s/he answers all your questions (have them written down) and keep at it until you understand all the answers (not easy!).
OMG! I am at my wits end with this Endocrinologist. I feel he is making me suffer as I wrote a complaint against him. I saw his SCR who advised me that I should continue with the Carbimazole and then started on Thyroxine. This was actually written to my GP. But lo and behold after me complaining about the Endo following an awful consultation (see previous posts!!) I have now been told that all treatment is to stop. The endo asked me three times during my latest consultation if I wanted to swop endos. I said no as he wants me off, of his list I know. He is playing mind games with me......... I am speaking to my GP as soon as I can get an appointment, that in it's self is a joke. Thank you everyone for the continuing support. GeorgieB
Might it not be more productive both for you and Endo if you and he parted ways? As he's given you the opportunity. Why do you want to keep on with him? You don't need to play mind games. Your health is more important than who 'wins', yes?
So sorry, Georgie. I agree with Humphrey's post. It is time to part ways. There is obviously a wedge in your patient/doctor relationship. I know it is hard to change even when we know we need to. Change is always difficult but this is you and your health at stake here. Muster up the courage and make the change you may find the change is dramatically for the better. Good luck and good health in the new year. Without our health we really do not have anything.
Thank you. I am seeing him again on 27th January so will ask to be change them. I
endo visit
Disappointing endo visit.
NHS Endo visit
