Hi, I think my TSH facility has died/ vacated/ broken and my Endo is continuing to increase Carbimazole to ‘ignite it”.
I’ve had hyperthyroidism for two years, finally met Endo in April who has run a load of tests, uptakes, scans, MRI and I’m waiting for PET scan and DEXA results.
All antibody tests are negative (Graves negative too) my thyroid is unremarkable, no nodules found. I don’t supplement iodine and I’m trying to eat low iodine food. No goitre.
This year my TSH and T4 has stayed suppressed, my FT3 at highest in July was 36. Range 4.1-6.8
Started 10mg Carbimazole, T3 dropped to 8, no change in TSH or T4. Endo increased carbimazole to 15mg and FT3 increased to 10, no change in T4 or TSH.
I feel dreadful, worse than before Carbimazole. No energy, can’t sleep, taken days off work. Endo wants to increase to 30mg Carbimazole to force TSH to ignite.
I have no T4 in storage and I think a 30mg Carb dose is going to make me feel even worse.
Could this be a hypothyroid flare - for two years meaning I could recover with Levothyroxine?
Endo hasn’t mentioned hypothyroidism once, just hyperthyroidism.
If I increase to 30mg Carbimazole this will take my FT3 below range, as I have no FT4 in the tank and I think a dead TSH to stimulate, does this mean I’m not going to have any energy, lost 60% hair and stay in the house until my next Endo apt at end of January? I’ve asked the Endo this and she said we have to try this route to get your system woken up.
I had to fight to get Carbimazole by rejecting thyroid removal/RAI. Now I’m struggling with it.
I know you know far much more that I do, any ideas please?
Thanks, Mandy.
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Mandyj2
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Thanks for replying PurpleNails, 5 years? Sounds like you’ve had a rough time, are your levels managed and are you feeling good now?
My Endo is dosing by TSH readings. Her plan is to get my TSH to boot my T4 into production. This is terrifying me as the Carbimazole is rapidly squashing my FT3 and I don’t have any FT4. I feel shocking and think this is going to get a lot worse.
Thanks again, mail crossed, I’ve just replied to your first post.
Autoimmune and nodules ruled out. I’m waiting for PET scan results to rule out Struma and the oncologist gynae doesn’t think it’s ovarian cancer. The latter said a thyroid mass could be anywhere in the body so ordered the PET.
Pituitary hormones not mentioned, was told after US Scan that it’s not hypoparathyroidism (sp?) Nobody in my family has autoimmune issues. I got Vitiligo on my neck two years ago at the same time as hyper symptoms but am told that’s a coincidence.
Thanks for your help, I’m going to ask for Levothyroxine.
Edit - I think they had to give a diagnosis to prescribe Carbimazole, it is T3 Toxicosis.
yes, I’d push levo - for block & replace. It may involve carbimazole above 40mg - max is 60 daily. B&R - Is designed to stabilise more difficult unstable cases and where FT4:FT3 is disproportionate. Your balance is your main issue right now.
Also PTU is 2nd choice anti-thyroid. An Older drug & comes in smaller dose pills so drs prefer carbimazole as can prescribe less pill to make required dose, but PTU is often better at lowering T3.
Hi Slow Dragon and thanks for replying with all the links. I’ve followed your advice for getting vitamins up but am struggling with getting B12 over 432 on a range going up to 990. I even did injections every two days and am still taking a good B complex, it went up by 6 points! I think hyperthyroidism batters our vits/mins so without the supplants/injections I would’ve been in a much worse place.
Folate is optimal.
Vit D was sitting at 54mmol/L so low. I’m taking 5000 D3 + K2 and magnesium.
Ferritin in June was 76 (range 11-306), now is 126 on 2 ferrous fumate tabs every two days, taken with a tsp of vit c powder in water.
Blood sugar low in range, cholesterol all very low - think they get depleted with hyper.
I’ve had several US Scans, all normal and two Uptake scans, uptake very low so normal.
Antibody tests, I’ve had TPO, TG AB, Thyroglobulin, TRAB - all low and bottom of range.
GP is good with blood tests and does full panel. FT4 undetected since Xmas 2022. TSH 0.02 (0.34 -5.6). FT3 10 (4.3-6.8 ). FT3 was 38 before Carbimazole 6 weeks ago so there is some progress.
I test vits privately as GP’s not interested and Endo says it isn’t her job. I always test at 8am on a Monday, fasted due to instructions here.
You can add a separate daily B12 alongside B complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thanks again Slow Dragon. Interesting links, read them whilst trying to get warm in the bath. I’ve got a good few low B12 symptoms and was injecting hydroxocobalamin for two months alongside b complex supplement, I’ll try methylcobalamin now.
Two years ago Medichecks told me to stop B12 supplements as my active B12 was over range, I didn’t. What a difference a thyroid disorder makes!
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