Hi there, I’ve been on Carbimazole for 2.7 years. My results were in range for the last 9 months and I felt well. Came off Carbimazole in the end of May (2.5 mg daily).
13th of May, Blood test results
Free T4 11.8 (9-23)
Free T3 4.1 (2.5-5.7)
TSH 1.02 (0.3-4.2)
TSH RC AB 2.5 ( < 0.4 unit/mL)
3th of July (todays blood test)
Free T4 12.4 (9-23)
Free T3 4.5 (2.5-5.7)
TSH 0.24 (0.3-4.2)
I think my T4 is more on the lower side. I bet they will want to put me back on Carbimazole again as all they look at is TSH levels.
Another thing, since January I have problems with my left eye, but GP brushed all the symptoms on Blepharitis. All I know she has no clue about TED. I would love to see ophthalmologist.
Best of Health,
Garbbo
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Garbbo
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Vitamin D was tested 2018 October, was 129.2 nmol/L (70 - 150 nmol/L). I do supplement with Vit D lately as spent more time indoors. Folate, ferritin and B12 were also tested few years ago.
Aside from the issues with your eyes, are you having any symptoms ?
It would be interesting to see your FT3 results, as with Graves' FT3 can be the first to take off above the range and the last to return to normal - so if this is a relapse, FT3 might be at or even over the top of the range.
There is a list of TED symptoms here: btf-thyroid.org/thyroid-eye.... There is some overlap with blepharitis. I'm not sure whether high street opticians are doing the full range of usual tests at the moment, but if you could find one that is and make an appointment explaining that you have Graves', they should be able to confirm blepharitis and/or help with a referral to a specialist eye clinic.
My FT3 is 4.5 (2.5-5.7). Surprisingly, I don’t have any other symptoms, I feel quite well. I have a history of TSH being 0.01 for over a year with normal FT3 and FT4 in another hospital and my endo didn’t prescribe any meds.
I saw my GP when my eye symptoms just started in January. So mainly it was just eyelid swelling by that time. After six months I have blurred vision in left eye, upper eyelid swelling, dryness, it seems bigger than another eye and eyeball looks pushed forward a bit. So I’m 100% sure its TED. Before lockdown I complained about my eye to one of the endo’s, but he seemed to be the king of the Ignorance. I have appointment next week so will discuss it again.
And my eye problems started after I had few stressful events earlier in November and December. I do believe its all connected :/
Sorry, I missed the FT3 result. It isn’t uncommon for TSH to remain suppressed for quite a while in Graves’ patients. No reason why you should go back on carbimazole at the moment as your thyroid levels are within range, but the potential TED is more worrying.
I think you are right - you have already identified stressful events in November and December - these might well have triggered this new development.
Depending upon where you are in the country I believe there are Moorfield specialist eye clinic outposts outside of the London main hospital and also TED thyroid eye disease specialist eye units - and that you should be referred as it's important to get this checked out.
OK - good you are in Central London - my optician put me in cab to Moorfields some 30 odd years ago and if the system hasn't changed you can just ' rock up ' - and no appointment needed.
Looking back now this episode for me was probably Graves related but at the time I was diagnosed with uveitis and had laser treatment in both eyes for holes and tears.
There is a lot more information out there now, and as you already have a diagnosis of Graves I understand they are specialists in thyroid eye disease.
Please get checked out, it is most important, and don't wait to be referred, you have already been ignored and fobbed off so do it for yourself, please.
Thanks. If that's Graves antibodies, your levels have been coming down which is a good sign that the carbimazole is doing its job. However, at 2.5 with a range of less than 0.4, it is still high.
According to the 2018 European Thyroid Association
Guideline for the Management of Graves’ Hyperthyroidism, TRAb testing is a useful tool to guide the management of Graves, and it offers the following recommendations in relation to coming off carbimazole to try for remission -
7. MMI is administered for 12–18 months then discontinued if the TSH and TSH-R-Ab levels are normal.
8. Measurement of TSH-R-Ab levels prior to stopping
ATD therapy is recommended, as it aids in predicting
which patients can be weaned from the medication,
with normal levels indicating a greater chance of remission.
9. Patients with persistently high TSH-R-Ab at 12–18
months can continue MMI therapy, repeating the TSH-R-Ab measurement after an additional 12
months, or opt for RAI or thyroidectomy.
I hope this information is of help to you as u manage the Graves.
Here is the link for the 2018 European Thyroid Association
Guideline for the Management of Graves’ Hyperthyroidism, in case you want to refer to it.
Seems to me you need to stay in the driving seat - as at least you know of the relevance of the anti bodies.
I don't think the NHS take an interest because they can't and don't know how to control this aspect of the disease, and just think that by ultimately destroying the thyroid they have eradicated the auto immune disease.
They then believe you, the patient, will be better off being hypothyroid rather than hyperthyroid but the NHS do not even prescribe full spectrum thyroid hormone replacement and your symptoms are simply compounded, and in some ways worse.
If you can manage on anti thyroid medication long term this has to be the best option until such time as the vaccine that is being developed is trialled, tested and approved as a suitable treatment option for Graves patients.
Like u, my TRAb level was also very high in the beginning. It took 3 years on continuous low dose carbimazole before it started coming down, another year plus to come into range, and another 6-9 months for it to come down to almost zero. Carbimazole has an immunomodulatory effect on how it treats Graves. For some it works quite quickly, for others it needs to be given more time.
TRAb is a measure of Graves disease activity.
Getting TRAb under control, will also help with the TED, though TED once it develops, is a separate condition. However, for many, getting the Graves under control, helps a great deal with reducing the TED symptoms.
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