My Consultant reckons that I probably have Graves disease. I am having an ecograph in 3 weeks and a gammagraphy shortly.
My latest bloods show the following:
TSH 6.56 (.4 - 5)
FT4 1.20 (.85 - 1.71)
FT3 3.93 (2.02 - 4.43)
Thyroid peroxidase antibody 197.5 (0 - 60)
Antithyroglobulin antibody 63 (0 - 80)
TSH receptor antibodies 1.93 (0 - 2)
I know that many of you are great understanding these results, Would you agree with my consultant that I probably have Graves disease.
6 months ago I had a hyper thyroid. The above is after taking carbimazol 20mg a day. Now taking tirodril 5mg a day. I reckon that I am currently going in waves from hyper to hypo but in general feeling a lot better than 6 months ago.
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There is a blood test commonly referred to as a TSI - (stimulating ) or a TR ab - ( blocking ) Graves antibody blood test which the consultant can run and then you have the medical evidence you are looking for.
Aplolgies - you have had the Graves antibody test - my fault, I didn't ' spot it ' !!!
If you don't know of Elaine Moore you might like to dip into her excellent website which is all things Graves and auto immune thyroid disease.
She was a medical technologist when diagnosed with Graves back in the 1990's and went through RAI treatment and became increasingly unwell but found no help from within the medical profession, so she started researching herself as to " what's Graves all about ? "
She went on to write a book to help others who might be in the same situation and now 20 odd years later she runs a very well researched website and has a world wide following of Graves patients.
Well, yes, exactly and by the way you wrote your post " with your consultant reckoning you may have Graves " I didn't really look any further and maybe he's not aware of this fact either !!!
I was prescribed carbimazole in a & e when I got a bad attack and they told me that I was hyper. I don't have these results but I do have results from just a few weeks before because I had a lot of symptoms and my dr sent me for a blood test:
TSH *< 0,010 (0.40 - 5.0)
FT4 *3,19 (0.85 - 1.71
)
FT3 *14,69 (2.02 - 4.43)
So these are my readings when I first started having symptoms and felt the need to go to the doctor. She sent me to an Endocrinologist who now thinks I may have graves disease.
Your recent TRAb levels were high, but within range - however, these fluctuate with the Graves’ and are likely to have come down with your treatment anyway, so it does look like Graves’.
Thank you SlowDragon, it is so complicated!! It is crazy to think that you can have both Graves & Hashmoto's at the same time, I didn't know that. This is a big learning curve and so glad that I have found this site.
Your high TSH shows you are NOT likely in need of dose reduction in Carbimazole
Actually meant you are likely to need dose reduction in Carbimazole!
If you have Graves and Hashimoto’s together, treatment is usually managed by endocrinologist......block with Carbimazole and replace with levothyroxine
My endocrinologist did reduce my dosage. I am only on 5mg since yesterday and he hasn't mentioned levothyroxine yet. Maybe he is waiting for the scans. I am seeing him again in September
You will need to give the reduced dose a chance to take effect. If you begin to feel worse before September, you can call the endo and ask if your next test can be brought forward.
There are two basic approaches to anti-thyroid (eg carbimazole) treatment, ‘titration’ which involves starting out with a relatively high dose of carbimazole and reducing it as thyroid levels come down, and ‘block and replace’ which maintains a high enough dose of anti-thyroid treatment to block natural thyroid action altogether, then replaces the body’s own hormones with levothyroxine. Your endo appears to be going down the titration route, so provided your thyroid levels are back within range by the time of your next test, it’s unlikely they will prescribe Levo.
Hi, my Endocrinologist likewise said I had Graves based on symptoms & one antibody test, but Slow Dragon & others here got me to question this. I now am confirmed Hashimotos (but with mild thyroid eye disease usually associated with Graves). Seems there are quite a few of us who began with hyper symptoms, but are actually hypo. Sending you very best wishes.
It is a mine field, I have waves of symptoms on a weekly basis. I can feel hyper and then a few days later feel hypo. Fingers crossed I will get a proper diagnosis. Amazing to hear that you have the eye disease and it wasn't Graves. The Endocrinologists have a tough job and that is for sure. Wishing you the best too.
Quite likely you have Graves'. You have positive TSH receptor antibodies after 6 months of treatment with Carbimazole although they are within range. It is possible the TSH receptor levels were higher when you first diagnosed, but I understand they were not measured then. Check this article on how the TRab levels fall during treatment:
You may also have Hashimoto as the same time. A few people have antibodies for both, but one condition is more prevalent at a given time. I have both and am still taking a low dose of carbimazole.
Thank you elderflower2016, you are saying what my Endocrinologist has said to me, he is going on the basis that my TSH receptor levels were probably higher when first diagnosed even though they were not measured.
My symptoms are generally more in line with hyper but change frequently to hypo symptoms so maybe I do have both. I will know more in September and hopefully it will be sorted by my Endcrinologist, he seems to be ordering all the right blood tests and organising scans so fingers crossed.
Does the low dose of carbimazole work for you? Are your symptoms under control?
Well with a TSH of 6.56, you would definitely have hypo symptoms and your carbimazole dose needed to be reduced as your endo has advised. That is why it is important to have regular blood tests and to adjust the medication over time.
Yes, I have been on a low dose for years now and I have no symptoms. I try and eat well and I do a lot of yoga for relaxation.
When was your dose reduced ? Was it as a result of these tests, or had it been done previously?
If the reduction was comparatively recent, the endo will want to see what happens after a few weeks on the new dose before adjusting again.
The aim will be to keep your thyroid in check with anti-thyroid treatment for 12-18 months, and then, assuming your thyroid levels have been stable and within range for a while, to take you off the anti-thyroids altogether to see whether your Graves’ is in remission.
The carbimazole/ tirodril will have suppressed your thyroid levels, so it’s a bit difficult to tell whether you are swinging naturally between hyper/ hypo, or if it’s simply the effect of the medication.
Hi Valarian, I started in December on 40mg. This was reduced after a telephone appointment during lockdown to 20mg in April and 2 days ago he reduced it again based on my blood tests to 5mg.
Tirodril is methimazole rather than carbimazole (are you in the UK ?) and eqiuvalent to a bit more than 5mg of carbimazole, but still a substantial reduction to your previous dose.
TSH acts as a signal from the pituitary to the thyroid, telling the thyroid to make more thyroid hormones when these are lower than your body wants them to be. When Graves' is active, TSH is typically suppressed (as was yours in your original test) as the antibodies effectively usurp its role, signallg the thyroid to keep producing hormones even when your body has sufficient for its needs - hence you become hyperthyroid.
Your TSH is currently a bit high, indicating that the pituitary thinks your thyroid needs to produce more hormones.; the anti-thyroids have been doing their job and keeping your thyroid suppressed, but now that your Graves' is less active, a lower dose is required. Now that you are on a much lower dose of anti-thyroids, your thyroid will produce more thyroid hormone, TSH will come down and hopefully your thyroid levels will stabilise somewhere close to their normal level. You are then likely to remain on that dose of anti-thyroids for quite a while (eg until 18 months from the date you began taking anti-thyroids), although if your thyroid levels drop again, your endo may reduce your dose again, perhaps by halving it or switching to alternate day medication. At the twelve or eighteen-month point, depending what your thyroid levels have been doing in the meantime, they are likely to try taking you off anti-thyroids altogether to see if you have achieved remission.
There is a risk with the recently-reduced dose that your Graves' may take off again, so keep an eye on your symptoms (without getting overly-stressed or obsessed by day-to-day fluctuations, because stress and Graves' don't play well together, and there may be very ordinary reasons for a short-lived return of some Graves'-type symptoms). If you think your hyper symptoms might be returning, ask for your next test to be brought forward - but don't panic over a single day or even a couple of days.
Good luck - and please feel free to ask any questions.
Thank you so much Valarian, I now understand how this progresses. I am in Spain and I am nervous with the language barrier and this complicated health problem but you have just eased my mind greatly. Many thanks, you are a trooper
The next issue will be if your thyroid levels fail to remain within range without anti-thyroid medication, or if you have a complete relapse. In theory, provided your thyroid levels can be controlled with a low dose of anti-thyroids, you could remain on these indefinitely. However, in most places, endos will guide you towards more 'radical' solutions, which involve shrinking your thyroid using radioactive iodine treatment, or perhaps having surgery to remove your thyroid altogether (thyroidectomy or TT). This could be the best solution for you, but it might not be. Unfortunately, there isn't really an ideal solution here, it's really a case of picking the least worst option for your health and circumstances. If you take one of the latter options, you are very likely to become hypothyroid at some point and need to take thyroid replacement hormones for the rest of your life. On the other hand, you won't have to worry about the (rare but potentially very serious) side-effects of anti-thyroids or thyroid storm (which you may have had when you lended up in A&E).
In the UK, we all have the option of remaining on long-term anti-thyroids because if we refuse the other options, the doctors are obliged to continue the medication, they can't just leave our thyroid levels to escalate out of control. I don't know what the position is in Spain, so it may be worth finding out about this - you could always start a new post on here asking if anyone else is resident in Spain. For now, I wouldn't worry about these options too much, you need to focus on getting as well as you can. If your endo does start to talk about alternative treatments, you can always do more research then, and come back here and ask for people's thoughts.
There is a good selection of English-language leaflets on hyperthyroid conditions and treatment here :
I would definitely read the leaflet on anti-thyroid drug treatment because it's important you understand how to spot potential side-effects - in particular, the importance of getting your white cell count tested if you gat a sore throat or mouth ulcers. There is nothing to be unduly worried about, the potentially dangerous side-effects are very rare - but you do need to be aware, and may have missed some of the nuances due to the language barrier.
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