Hi everyone.. I was supposed to have an appointment with the endo today but it was cancelled. They offered me an appointment in October but I explained I’m still feeling unwell with the jitters, heart palpitations, anxiety and they managed to offer me another appointment on 14th May.
I decided to get a private blood test done anyway to see what was happening. I am currently on 20mg of Carbimazole. Would like some advice prior to speaking to the endo. Is this normal to have low TSH still but FT3/4 look ok now? Do you think they may change my medication? I don’t really understand all of this.
My vitamin levels are getting better after the great advice from seaside susie so I am pleased with that.
Thanks in advance x
Jules
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Jules99929
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Your current, and previously high, TG and TPO results suggest Hashi's as was mentioned previously. It would seem that you have Hashi's not Graves and should not be on Carbimazole. It would seem that your previous high FT4 and FT3 were very likely a Hashi's hyper swing, unless of course you had positive Graves antibodies and have both Graves and Hashi's (which is possible but uncommon).
Hey, thanks for your reply. Yes I was tested for Graves. The letter says I was tested for TSH receptor antibodies and they came back positive at 4.5 U/L but no ranges given.
Thanks for your advice.. I will mention this when I (hopefully) have my appointment next week.. if that is the case, do you know how do they normally treat this?
if that is the case, do you know how do they normally treat this?
No, sorry, it's something we see occasionally here but not often. I don't know if greygoose can comment, she knows a lot more about autoimmune thyroid disease than I do.
Well, it depends which one is dominant. I think Grave's is usually dominant. But, there are not treatments for autoimmune disease themselves. It depends on your blood test results. If your Frees are very, very high, as in Grave's, then you will be given Carbimazole, which is an anti-thyroid drug, which will slow down hormone production by your thyroid, bringing down the levels of the FT4/3, which will make you feel much better.
On the other hand, if your blood test results show you do be hypo, they will give you thyroid hormone replacement. That's about all they can do.
Something to note—there’s a weird but common phenomenon with TSH and Graves. Sometimes TSH won’t come back up again. It stays suppressed, sometimes for a lengthy period, occasionally forever. So TSH shouldn’t be used as proof or not of whether you’re on the right amount of carbimazole or thyroid hormone replacement. Your FT3 has dropped nearer the bottom of the range, which suggests you might be on slightly too much carbimazole (or that you need “block and replace” which is where you continue to take carbimazole but add levothyroxine to it).
Not all doctors seem to know that this happens and occasionally, we hear here that so-called endocrinologists don’t know it either. But you do now.
Thank you Jazzw for this. I never realised that! Perhaps as I am still not feeling well i need some adjustment to my medication and will discuss with the endo.
I also have TED which is quite bad at the moment. I wake up in the night with very sore swollen eyes, I have ointment and drops and cooling gels but nothing seems to be helping much. Plus in the daytime I have to work on a monitor and I really struggle. Thank god I am working from home as I wouldn’t be able to drive. It’s really getting me down. Not much I can do about it though except continue with the meds.
You might like to dip into the Elaine Moore Graves Disease Foundation website.
Elaine has Graves Disease and went through RAI thyroid ablation back in the 1990's. and finding no help nor understanding with her continued health issues started researching herself and wrote a book to help others who might be in a similar situation.
She was, and still is a medical researcher/technician and has become a leading authority on all things Graves, TED and thyroid . There is an open forum and much like this amazing forum where you can post questions and receive answers from the community and Elaine also takes an active role in answering peoples questions.
Graves is an autoimmune disease that attacks your thyroid and it is because the thyroid is such a major gland that the symptoms experienced can be considered life threatening.
Your thyroid is the victim in all this and not the cause :
The cause is your immune system attacking your thyroid:
The NHS treat the symptoms by blocking your own thyroid hormone production with the anti thyroid medications. They generally give you around a 15 month window of out patient appointments in the hope that within that time frame your own body will have ridden out the auto immune attack and your thyroid fallen back into natural rhythm with the drastic suggestion to ultimately remove the thyroid if after this time, you are still needing treatment.
The NHS do not know how to contain or control the autoimmune component of the disease so think by removing the target of the attack, the thyroid, they have solved the problem :
I'm with Graves post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism. I became very unwell about 8 years after the RAI ingestion and it's thanks in the main part to this amazing site, the above, as mentioned, along with a couple of books I've managed to get my life back on track, but it has meant that I've needed to be proactive, read about Graves ( back to front in my case, as I knew nothing when diagnosed and treated back in 2003/5 ) and ultimately take control of my own health.
I know and understand t's a difficult time, your body clock has gone into overdrive, your exhausted but can't turn off, and feel bombarded with information overload.
Forget the TSH - you have Graves and you need to be dosed and monitored on your levels of T3 and T4 with the intention being for both these thyroid hormones be balanced and in the upper quadrants of the ranges, at whatever level you need to feel well.
P.S. Whilst your metabolism was running too fast, and possibly now, running too slow, you may not be able to utilise your nutrients from food, so it's important to maintain ferritin, folate, B12 and vitamin D at optimal levels so to support your overall body health.
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