TSH DEAD?

[Mandyj2]

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.

[PurpleNails Administrator]

Dosing treatment by TSH terrible idea.

Carbimazole dose should be adjusted by FT4 & FT3 levels.

TSH can stay suppressed after a period of hyper. I have nodule & early on doctor tried to increase carbimazole to shock TSH into rising into range.

This unfortunately leaves you with hypo levels, or levels so low you are unwell & often the TSH can stay suppressed.

I discussed with dr & said I’d keep my FT4 & FT3 mid range & this was agreed. Was on treatment 5 years before TSH responded.

[Mandyj2 in reply to PurpleNails]

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.

Am I right to ask for Levothyroxine please?

[PurpleNails Administrator]

Just reading your history, no diagnosis - autoimmune, nodule & Struma Ovarii ruled out?

Suppressed TSH AND FT4 but very high FT3. This is very unusual.

Drs should be looking at block & replace, high dose of carbimazole and replacing Levo. This should balance FT4:FT3.

Where can high FT3 be from if thyroid not producing (as shown by uptake scan)

You’d expect to see results like this if someone was taking high doses of synthetic T3.

Have doctors checked other pituitary hormones? And considered genetic factors?

[Mandyj2 in reply to PurpleNails]

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.

[PurpleNails Administrator in reply to Mandyj2]

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.

[Mandyj2 in reply to PurpleNails]

Endo has refused levothyroxine, says it must not be given to hyperthyroidism patients. Apparently I’m still hyperthyroid as my TSH is too low. She is now back to insisting I have thyroid removed. I’m not doing that. I don’t know if an Endo can discharge me for refusing to do as they say.

I’m not allowing thyroid removal as I’ve seen how bad folk are treated with hypothyroidism. I’m thinking of deceasing Carbimazole in order to feel better, I can’t go on like this.

[PurpleNails Administrator in reply to Mandyj2]

Levo alone is not given to hyperthyroid patients but in combination with antithyroid it is. & has been used to balance levels in many. It’s not a made up / newly invented concept. British thyroid foundation produce leaflets to give to patients by hospitals it’s clearly described in the leaflet.

btf-thyroid.org/antithyroid...

Can you see a different endocrinologist?

TSH shouldn’t be focus. Sometimes TSH remains low regardless of low FT4 & FT3.

Endo seems very certain of themselves considering they have no explanation of what’s causing isolated high FT3.

I have experienced bring discharged by specialist for not agreeing to the suggested plan. I’m my case it was amicable, for the GP to monitor, with the understanding was I could be referred back if the situation changes. Others have reported being unexpected informed they have been discharged because the aren’t agreeing to treatment & specialist team can’t offer more help.

[Mandyj2 in reply to PurpleNails]

Feels like endo wants the removal route, she must know about block and replace but isn’t offering it. She was pushing removal before offering AT drugs.

GP is doing a referral under ‘Book and Choose’ , I hope the next one is better!

Thanks for your help!

[SlowDragon Administrator]

Have you had ultrasound scan to see if have a hot nodule

You need to also test Vitamin D, folate, ferritin and B12

Hair loss suggests low iron/ferritin

Recommend you get FULL thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

what vitamin supplements are you taking

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Mandyj2 in reply to SlowDragon]

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.

Thank you for all the help.

[SlowDragon Administrator in reply to Mandyj2]

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

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

healthunlocked.com/thyroidu...

[Mandyj2 in reply to SlowDragon]

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!

Thanks for your time and help as always.