I don't know what to do now?: Back in July, after... - Thyroid UK

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I don't know what to do now?

Pinkcosmo profile image
8 Replies

Back in July, after a routine blood test, my Levo was reduced from 175mg to 150mg because my T4 was too high. I had a further test 7 weeks later and my T4 had gone up slightly.

I posted my results on here and was advised to have some private blood test to check on Vits etc. My dear mum became very poorly so there has been a delay but the results have come through today and I have just been notified that my GP has now reduced my Levo again to 125mg. Apparently he tried to call me but it was the same day as my dear mum passed away.

I'm not sure what to do now. Any advice gratefully received.

I take 2 prescription Adcal - D3 daily. (each tab = 1500mg calcium carbonate and 400 I.U colecalciferol equivalent 10mg D3)

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SlowDragon profile image
SlowDragonAdministrator

Very sorry for your loss

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What brand levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking, if any

Your Ft3 is EXTREMELY LOW

Very poor conversion of Ft4 to Ft3 (active hormone)

B12 is also terrible

You need full testing for Pernicious Anaemia before starting on either daily B12 sublingual supplements or if test positive for Pernicious Anaemia will need B12 injections

Any active B12 below 70 need further investigation

See GP

Likely poor conversion is being made worse by low B12, but stress and grief might also affect this too

If levothyroxine is reduced your Ft3 will drop even further and is already far too low

Pinkcosmo profile image
Pinkcosmo in reply toSlowDragon

Thank you for your reply.

Test was done about 8.30am before eating or drinking anything and last dose levothyroxine was 24 hours before the test.

I take Almus and always get the same prescription.

I don't take anything other than the calcium +D3 prescription.

Do you think I should send these results to my GP or will that just irritate him!

SlowDragon profile image
SlowDragonAdministrator in reply toPinkcosmo

I would email copies to GP

They won’t be familiar with Active B12 test as it’s not routinely available on NHS (only offered via St Thomas’s in London)

viapath.co.uk/our-tests/act...

>70*; * between 25-70 referred for MMA

nutris.viapath.co.uk/pages/...

NHS won’t routinely do homocysteine or MMA

Likely if GP did standard serum B12 it would be low

Pinkcosmo profile image
Pinkcosmo in reply toSlowDragon

I emailed my GP the results as you suggested and he phoned me yesterday. You were right - he wasn't familiar with the active B12 test but was very interested. He is doing more blood test next week and has referred me to an endocrinologist to see about T3 treatment.

He also wants me to consider going back on HRT - I came off it several yrs ago as I'd taken it for 5 yrs to try to help my bone density (I had hysterectomy at 39 without and hormone replacement at the time. I'm 60 now!)

Thank you for your help SlowDragon - I really appreciate it.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkcosmo

HRT often results in needing higher dose levothyroxine

First step is to establish if B12 is low because your thyroid is under medicated or due to pernicious anaemia

Getting all four vitamins optimal may help improve conversion of Ft4 to Ft3 and is necessary before considering adding T3 prescribed alongside levothyroxine

Vast majority of endocrinologists are diabetes specialists and won’t prescribe T3

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 ...NHS and Private

tukadmin@thyroiduk.org

Pinkcosmo profile image
Pinkcosmo in reply toSlowDragon

That is basically what he said - he's going to do tests for B12 and some to try to find out why my ferritin is high.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkcosmo

Common for ferritin to increase after menopause

Male ferritin range in 15-400

Pinkcosmo profile image
Pinkcosmo in reply toSlowDragon

My ferritin levels have been high for 10 years! He's doing liver tests just to make sure everything is OK. I am lucky to have a GP that really seems to care.

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