Hi everyone, I have had subclinical hyperthyroidism for a few years with my TSH results going in and out for a while. The last couple of years they have been just out of range consistently so my NHS endocrinologist put me on carbimazole 5mg but it didn’t suit me. I’ve now been on Propylthiouracil 50mg for about 7 weeks and feel ok on them. Had my blood result yesterday and my TSH is ‘just in’ normal range again and T4 and T3 moved down a bit so all looking good so far. Wondering how long I can stay on this medication for? I’m also very interested in having RFA so any info on that please. Have found quite a bit on here already though. Not so easy to get it on NHS. Endocrinologist said it doesn’t exist in England! I know it does though. My GP won’t refer me as said she doent know if this is the right treatment for me. Thinking of going to Italy for it after chatting to Levi on here and his good experience.
Any tips or info please
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Sufisinder
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What is your definition - or, more importantly, your endo's definition, of 'subclinical hyperthyroidism'? What were your results that lead to that 'diagnosis'? Were Graves' antibodies ever tested: TRAB and TSI?
TSH is the least important of the three results, with FT3 being the most important. Right now, your thyroid hormones are on the low side, what were they before?
I got given that definition as my TSH was just out of range at 0.14
I had a graves test and don’t have that. Have goitre with hot nodules. My first test for T3 years ago was very low.. below range. Can’t remember the number sorry.
My test in July 2023 by NSH: On no thyroid medication.
Yes had an ultrasound and there were nodules a few years ago. Had fine needle biopsy.. no cancer. I did ask my endocrinologist last month if I had hot nodules and he didn’t answer. He said he would like to do a take up scan next year. Would that be a good idea?
Low TSH, on its own, doesn't mean you're subclinical hyperthyroid, now. And as your FT4 was lowish, you definitely don't have hyperthyroidism. But doctors just do not understand how the TSH works or what it does, and go into a flat spin when they see a low one.
With that low FT4, I really doubt that your nodules are 'hot' - i.e. secreting their own thyroid hormone. But, you would need an FT3 test to know more. I don't know anything about up-take scans, so can't comment on that. I think your endo is floundering round in the mire, totally lost!
So, I would go back to what I said before, and suspect a pituitary problem - i.e. the pituitary not secreting an adequate amount of TSH. And to investigate that, the first step would be to get a cortisol test. Have you ever had one of those?
greygoose sorry my T3 in January was 5.45 (3.1 - 6.8)
And now is 4.6 (3.1 - 6.8) on the meds for 7 weeks.
I’ve got a thyroid test coming up in a couple of weeks on the NHS at 8.50am is that early enough for a cortisol test? If so I can try and add it then. Thank you!
OK, so your FT3 was high-ish in-range, but not high enough to constitute hyperthyroidism. Now, it's too low and you're heading for hypothyroidism.
Ideally, a serum cortisol test would be done at 8 am, but I know that's difficult in the UK. So, 8.50 would probably be the next best thing, if you can get it.
I would agree with greygoose - as getting your TSH in range should not be at the expense of your thyroid hormone levels. 🤔
One thing that struck me about your post - you make no mention of how you are and have been feeling. Symptoms are the most important diagnostic. Don’t fall into the trap of being told by the DOCTOR how you feel based on lab work. This happens frequently and is so wrong. They end up trying to calibrate the patient to the lab work, rather than listening to the patient and symptoms and using the tests as an aide to treatment.
As greygoose says you should have had a test for the SPECIFIC antibodies related to hyperthyroidism at some point in your journey by now. It would be really beneficial to summarise your medical history in your bio. So many people just leave it with a ‘Hi’ 😱. Click on my face and have a look at mine and you could look at greygoose profile too. It’s a great way of keeping all the relevant information in one place.
What would you say are the associated symptoms are - over time and presently?
I have now read both bios. Very helpful. I will write mine asap!. Used to feel a bit hyper in mind and body and over do myself. Couldn’t sleep. Very stressed. Learnt to do relaxation techniques and how to sleep better which has helped enormously. Also feeling very tired with no energy sometimes. Started this last year to get ectopic heartbeats. GP said it was mild after I wore an heart monitor. Also diagnosed with osteoporosis.
In my early days I always had surplus energy - bit hyper- I guess the early stages of Hashimoto’s. I was utterly clapped by the time I was as finally diagnosed.
Symptoms are key to a meaningful discussion with your doctor. If you don’t talk about it, they generally won’t, especially if they have a blood test to pour over. Doctors are not routinely taught stats and ironically, when looking at blood tests, it is really important to understand the underlying stats. Scientific methodology requires it, seemingly medicine does not . The poor doctors are kept ignorant. That way they are less likely to deviate away from guidelines and use their initiative. The more I dig the more sorry for them I become.
That said go back over your records and make sure the antibodies specifically associated with hyperthyroidism were checked. Let us know how you get on. 🤗 Oh and you can tag people into posts by using an ‘@‘ in front of their name with no spaces. 😊👍
Keep a diet diary, seriously and note changes in products you bring into your home and diet. Make a note of nutrients which impact the thyroid and the signs of too much and too little and reference the list when your symptoms change. Also get Soy out of your diet. It is in so many foods using names other than soy. Check a site agutsygirl.com extremely helpful reference. It won't be long before you will become THE EXPERT ! I do wish you well and know these changes you are experiencing are not just happening something is triggering them. Your life doesn't need to be a health roller coaster!
OK, I see there's now a photo of your results, but no information. When was this test done? What were you taking at the time? And, very important, what time of day was the blood draw?
OK. I really wouldn't have thought that was the best treatment for you, because whilst your FT4 is quite high, your FT3 is quite low, and an anti-thyroid drug will just make it lower, which will make you hypo. And, aparently without having any effect on the TSH! Myself, I would really suspect a pituitary problem, here, and be wanting other pituitary hormones tested.
greygoose my TSH has gone up just into normal range since starting the meds. and T3 has gone down from when I had it tested in January. T4 is down also. I don’t want to go hypo! So I can go hypo with a lowish TSH? I’ll try and get a pituitary hormone test. Thank you.
I’m not as knowledgeable as many people on here, but remember that TSH is what your body sends out to request T4 when it senses you need more (which is then converts into usable T3).
So a low TSH sometimes means your body is saying it has enough T4. That’s why those of us on T4 replacement have very low TSH… because we have enough T4.
TSH, FT4,FT3 TESTED TOGETHER AND AT THE SAME TIME are needed for a complete picture.
I won’t attempt to paraphrase responses above - but clearly there’s something atypical in your numbers (what a typical hypo would expect to see go up n down or vice versa) so once you get the tests suggested you can come back and write a new post with all that new info, you’ll be bound to get the helpful intelligence from the board.
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