I have been subclinical hyper on and off for about 20 years. Only now in late 40s have I suddenly have an onset of severe symptoms (sweating, anxiety, insomnia, weight loss) and so I got my bloods done in October and was started by GP on 20mg carbimazole. Never taken more than beta blockers before this. Saw endo and tested for antibodies but no follow up until late Jan 2021.
After 1 month carbimazole: T4 22 (9-22.7) T3 9 (3.5-6.5) TSH <0.05
Managed to get GP secretary to look up antibody results on hospital system and those bloods also after 1 month carb show:
Th peroxidase Ab 33iu/ml (0-60)
TSH receptor Ab: 0.3 (0-0.9)
So I assumed this is not Graves? I am due for an X ray of my thyroid gland on Tuesday. Endo said at initial consult that he thinks I have nodules.
GP is looking after my meds for now - my question is that if my T3 also comes into range on next test (4 weeks from last) would dose should I ask to be reduced to? GP is reading all from guidance/emailing endo as has no experience but is sympathetic.
I am worried about staying on too high a dose and going hypo.
Also, if it is nodules and not Graves, does this mean I should be on titration rather than block and replace or vice versa? Any difference?
Many thanks
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scarlet109
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I have a solitary hyper nodule. Treated with carbimazole.
When you say X-ray do you mean a thyroid scan which looks at the uptake of the thyroid? This will confirm if you have a hot nodule. It involves an injection or drink beforehand. The images shows distinct patterns and they will be looking for a concentration of uptake.
I am treated with tritiation. Block and replace is selected when levels fluctuate wildly, nodule/s tend to be not as high Graves and more stable.
You are right to have frequent checks to monitor your levels and ensure they don’t drop too low. Ensure you are dosed by FT3 & FT4 and not TSH alone. The TSH is unreliable and may remain under-range long after your levels drop.
For dosing this is what I suggest, If your FT4 & FT3 are still at top of range stay on same dose if they are around 50% through range asks to reduce dose to 15mg per day. If they are below range ask to half the dose. Always re test around 6 weeks later, earlier if you have symptoms suggesting either hyper or hypo. You may need to keep tweaking dose to get right.
I was offered radioactive iodine very early on as nodule/s do not go into remission as is the aim with Graves.
Also important to test folate, ferritin, b12 and vitamin D, these are metabolised quickly when hyper and need to be optional for thyroid health.
Are you also taking a beta blocker now? Propranolol is often used in conjunction carbimazole.
Hi, thanks for the reply. I am in the UK. They told me I will have a slightly radioactive injection an hour before the X ray. Really appreciate dose advice, and I think I will now ask GP to test those vitamins. I have beta blockers (propanalol 10mg) but heart rate was 82 when measured which is OK and so I was told to take as needed. I don't feel good on them and they stop me falling asleep so I take maybe twice a week when my heart races and try and always take morning. I saw endo once and he said he suspected nodules but don't have follow up until end of Jan.
Propranolol is chosen in conjunction with anti thyroid medication as its known to have a mild anti thyroid affect and can lower FT3. By reprioritising the conversion of T4 to RT3 over T3, so it helpful for hyperthyroid (not for hypothyroid)
Usually it’s intended to be temporary. As it helps the symptoms not the cause. Provided it’s very occasional use it shouldn’t impact your levels. (Which will complicate the carbimazole dosing). I was told to stop abruptly by hospital consultant which is NOT recommend. For me it triggered migraines. GP put me back on them and It has taken months to slowly reduce. In the month I was taken off them my FT3 spiked disproportionately.
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
It’s not true hyperthyroidism, but sudden release of thyroid hormones as thyroid breaks down under attack
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies .....or Graves’ disease
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
If a doctor recommends RAI treatment (Radioactive Iodine) or removing your thyroid do not agree until you have been completely convinced it is the right treatment for you. Don't let anyone bully you into getting anything permanent done that you can't undo.
I'm not saying that RAI/thyroidectomy is wrong for everyone, but doctors do have a habit of telling patients that the best treatment for them is the one that is easiest or cheapest for the doctor or the health service.
If you've examined all your options, and decided to do RAI/thyroidectomy then fine. But don't be pushed into it before you're ready.
I think it is more likely you have Hashimoto's Thyroiditis or possibly a hormone-secreting nodule, but it is too early to say with your current results and tests.
Hello. I have Graves. Have you had TSI thyroid stimulating testing done? This will help in determining Graves. Also TRAB testing. Slow dragon has wealth of knowledge. My levels are high and it’s not a competition but I’m not on medication right now for reasons I won’t go into but my T4 is 84 range 10-22 and my T3 is 48.7 range 2.0-6.0, I only say this to give a guide of high levels. I have TRAB, TSI and TPO antibodies in high levels also. I have been doing the vitamins for about 4 months and I believe it helps. Hopefully you have got some good advice here to help you with the next step. Kindest regards NIKEGIRL
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