Hi, i have had Graves disease for 17 years now, and been in a cycle of long remissions and occasional relapses during that time. Until Covid I was being followed up at a hospital endocrine clinic after the most recent relapse 18 months ago. I came off carbimazole about 10 months ago. Now i am in the community (GP) for follow up with a recommendation from the hospital that i have blood test every 4 months. I have been having what i think are early symptoms of hyperthyroidism and asked the GP for a blood test but results today are for TSH only. Is this the new normal? That even for confirmed thyroid patients that T4 is not tested until an abnormal TSH result comes through?
TSH was 1.05 mIU/L [0.34 - 5.6] for interest. I know that when i am well that the concentration is usually around 2mIU/L. But since mine is, technically, a 'normal' result I suppose i wont graduate through to the next round for T4 testing. I have a phone appointment next week with a GP to ask for that test anyway. And then i will have to wait for another phlebotomy appointment etc.... I guess it will be at least another 10 days from now that i will have the T4 results, even if everything runs smoothly.
Its really frustrating because after all these years, i know when i am getting sick. I usually leave it until i feel quite unwell (because i kind of like the high of having so much energy when i am just a little bit hyper - bad I know). But last relapse i swore to myself that i would take this illness a bit more seriously.
I have seen tests to buy online where I use a finger prick to collect own blood sample. Perhaps this might be the way forward - does anyone know if GPs will prescribe carbimazole on the basis of these mail-order tests? Or would i have to wait for their own tests to come back? I sometimes think that the worst thing about having thyroid disease is not the disease itself, but the frustration of having to deal with the health care system (although of course many people who work in it are great).
Sorry, it has turned in to a bit of rant. All advice or info gratefully received.
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Belsize
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I think you can get the symptoms before your TSH reflects what is happening. My TSH is 0.38, well it was back in March and I feel ok but I know I can relapse at any moment. I have had a few episodes during the corona and I thought I was going to have a thyroid storm when I had some bad news about the death of a friend. I can usually tell when I am becoming hyper because I don't sleep and my hair starts to fall out and my nails start to lift off their beds. Also I start to have periods of sweating and heart palpitations. I wouldn't take anything until your levels are higher than they should be because it is a very powerful drug as you know and has lots of nasty side effects. My T4 was top of the range at 22 when I had my last test but my T3 was well within range. I do need a blood test but I don't want to visit a hospital to have my blood drawn while the coronavirus levels are still quite high.
Welcome to treatment for AI thyroid disease in primary care.
In my experience your doctor will only be able order a TSH blood test and if your TSH level looks suspect a T4 will be run first and then maybe a T3. irrespective of your current diagnosis.
I am with Graves post RAI thyroid ablation and only ever had a TSH run in primary care for 10 years and when " on my knees " offered anti depressants rather than a measure of T3.
I read that doctors do not accept private blood test results, but if your private result looks like something is amiss, this may force his/her hand to request a more detailed test through the NHS. and trigger treatment for you.
I read that some doctors do prescribe Carbimazole, but presume with some " direction / input " from the hospital.
If you don't know of Elaine Moore suggest you dip into her website and books on all things Graves for Graves patients worldwide. She too has Graves and finding no help with her continued symptoms after RAI treatment decided to start researching this poorly understood and badly treated AI disease herself.
There are sections on alternative and more holistic options and just wish I knew of this amazing forum and Elaine's work before I went through RAI in 2005, as I deeply regret this treatment though wasn't even given an option!!!
Some private blood tests like MMH are actually done by NHS Hospital Labs so there would be no reason why a GP would not accept that. It would certainly give them an indication of where you are and if necessary may push them to arrange another test themselves to fulfil any requirements they have on tests.
If I were in your shoes thats what I would do first.
My GP put Thyroid Storm on my blood test request last year but because the TSH was within range the lab ignored his request and then threw in liver function test instead.
Yes you're right. Ideally the whole thyroid panel should be tested.
This is the first time I am hearing of testing only TSH. That's just madness. I can't imagine how the NHS must be suffering for the doctor to test just TSH or maybe it's the doctor?
In any case, 17 years living with Graves! An amazing record. I think u could be the longest person living with Graves I've come across here.
Off topic, could I ask if you've had any major Graves symptoms along the way, and what your original trigger was?
Hi ling, I was 30 and had no obvious illness or trigger before my first graves episode. By the time i was diagnosed i had lost a lot of weight, my legs kept giving way underneath me and my heart rate was through the roof, I had not a fine tremor, but everything was shaking.
Are there not a lot of people living with long term Graves disease on this forum? I have had periods of remission in that time that last for a few years, and i stop taking medication and feel perfectly well for long stretches. Is it that most people have had their thyroid removed or irradiated by 17 years? I have moved between cities and countries a lot since first episode and the advice i have received about best treatment seems to vary so i have never really felt comfortable enough to trust somebody with a permanent move like surgery. However, the older i get, the more difficult i find it to recover from relapses so i am trying to be proactive and careful with my condition and perhaps should consider surgery or radiation treatment.
Hearing from other people with Graves is so helpful. Thank you everyone. x
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