Hello, I have just received my results back this morning.I have graves disease and take 40mg of carbimazole and 100mcg levothyroxine per day as block and replace.My endocrinologist is happy with my levels at the moment but I am feeling shaky, my heart rate goes into the 90's with little exertion and I have had 4 migraines in 4 weeks when I had got them under control.I take my thyroxine as instructed and did my blood test early and fasting taking my levothyroxine after it.I take 20mg amitriptyline per day for migraine prevention and the supplements I take are 200ug selenium, 500mg slow release vitamin C,25ug vitamin D per day. Results are as follows:
Inflammation CRP HS 1.2mg/l (0-5)
Ferritin 87ug/L (13-150)
Folate-serum 14.1ug/l >2.9
Vitamin B12 -active >256 (25.1-165)
Vitamin D 89nmol/L (50-200)
TSH 0.68mlu/L (0.27-4.2)
Free T3 4.5pmol/L (3.1-6.8)
Free Thyroxine 20.7pmol/L(12-22)
Thyroglobuline Antibodies <10iu/mL(0-115)
Thyroid Peroxidase antibodies <9iu/mL(0-34)
I am concerned about my B12 results as I am taking no supplements. Do my low antibodies mean I could try stopping my tablets? I did stop last October for 2 weeks but my T4 went up to 69.Any advice or opinions would be appreciated.
Thank you.
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Do my low antibodies mean I could try stopping my tablets? Thyroglobuline Antibodies <10iu/mL(0-115)
Thyroid Peroxidase antibodies <9iu/mL(0-34)
If you mean stopping the Carbimazole.. no, i don't think so.
The antibodies that are directly responsible for the high thyroid levels in Graves are TRab (Thyroid stimulating hormone Receptor antibodies), and these are not the ones that you have results for on this test.
Oh I'm disappointed in that. I Thought I'd chosen the correct blood test.It said antibodies so I presumed they were the right ones.I'll have to look around but to be honest taking the test was so stressful for me I don't think I could do another one.I have no problem with needles but the pressure of getting those drops of blood out and not wasting the test was awful.Thanks for taking the time to reply.
Before my last finger prick test I was feeling cold, so I borrowed my husbands fingerless pressure gloves. It was so successful that I will wear them every time I do a test in the future.
Thankyou for that good idea.I did read the tips such as being hydrated, doing arm swings and putting hands in hot water.I got myself in such a state doing it.I was worried about wasting the test as they are expensive.Best wishes to you.
Hello, thanks for replying.I had a positive test for graves when I was first diagnosed in 2018 so know that I have it.Just disappointed that the antibodies included in my test weren't the right ones to check if they were still high.
It doesn't sound like block and replace is a good treatment strategy for u. Might be better if you try just carbimazole without the levo.
Your FT4 and FT3 are within range, but you still have the shakiness and spurts of fast heart rate.
Could you consult your doc again, and also get a TRAb (Graves antibodies) test as well. Your post from 3 years ago indicated a very high TRAb 25.7 (range 0-0.9). You should never try for remission if your TRAb is still high or out of range.
If doc is agreeable to drop the levo and just go on carbimazole, make sure to retest at short intervals initially till you get the correct level of carbimazole to be on.
Thankyou very much for replying.I did try carbimazole alone when I was first diagnosed but unfortunately my hospital appointments were just too far apart to get the right balance.I had the blood tests every 6 weeks but by the time the endo got back to me it was at least another couple of weeks.My TED really suffered as my levels were jumping around too much.I have now got the link for the antibody test so I'll look into that.My endo says I can stay on the medication for longer so I'll discuss this with him at my next appointment. Thankyou for taking the time to reply.
Based on my own experience, I suspect that while your FT4 and FT3 are in range, your TRAb remains high which is what's causing your symptoms, the shakiness, heart rate spurts.
It's the same with me, though our TRAb levels are high for different reasons.
If it's really the case that your TRAb is still high, then staying on carbimazole will help reduce it.
One last thing.
Its good that after 3 years, your FT4 FT3 have come into range, so there's a possibility that TRAb eventually might come down as well. But this could be a journey of ups and downs, so you should be mentally prepared that TRAb could rise again.
Thankyou for that and it really does make sense.A surge in anti bodies could be causing my symptoms.My consultant has recently been concerned about my white blood count and said I would have to stop the carbimazole if they didn't rise.They have gone up a bit so I have a reprieve for now.I have a actually asked him to refer me for information about a thyroidectomy if I have to stop carbimazole.I'm under no pressure at the moment it's just for another opinion but I'd rather be prepared. I wonder if I did have a thyroidectomy would my antibodies still effect me in this way? I have recently started taking slow release vitamin C as someone on here said their consultant recommended it when they started carbimazole. This may have helped my white blood count.That's what I love about this site someone is bound to have experienced it first and then you don't feel so worried.Thanks again and best wishes to you.
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