Hypo/Goitre/B12 and M.E.

[lizsam]

Wondering if anyone can help with any info and advice?

I was diagnosed with m.e. 7 years ago, but it really started after the birth of my first child over 12 years ago.

Diagnosed with vitamin B12 deficiency Sept. 09, have one three monthly injections from doctor, but now inject myself every day with cyan...as it makes me feel better.

Diagnosed with diffuse multinodular goitre about three months ago, but have suspected it has been like this for years, and finally my TSH level has recently gone to 5.5. and doctor has diagnosed hypothyroidism last week. Doctor has given me 50mg Levothyroxine to start with. Have only been on it a week and feel dreadful, also I have started another period as my last one was only ten days ago. Can thyroxine disturb other hormones and cause this period?

Also on DHEA 10mg as I did a private test and my levels were low.

Also don't know my T3 orT4 as, although doctor ordered these tests the lab refused to do them!

Would appreciate any comments,advice etc

Thanks,Liz

[lynmynott Partner Thyroid UK]

For some people, especially if they have been undiagnosed for some time, 50mcg may be too much and gives them overactive type symptoms such as feeling too hot, racing heart, sweaty, palpitations etc. If you have these symptoms, it might be a good idea to discuss with your doctor cutting back to 25mcg for a couple of weeks.

Alternatively, you may be intolerant to something within the tablet such as lactose or one of the fillers.

Hypothyroidism causes disturbances in your periods so starting to take thyroxine may be causing another period. Best to discuss it with your GP.

You can get private testing done via Genova Diagnostics - info on Thyroid UK home page.

[lizsam in reply to lynmynott]

Thank you for getting back to me so quickly, will go back to gp.

[helvella Administrator]

Liz,

It sounds as if you are taking a very large amount of B12. I don't doubt you are honestly reporting that you feel better for doing so, but could you be overdoing it?

You may care to read the Cochrane review "Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B1+2 deficiency" - it could be a way of taking in sufficient B12 without the cost and discomfort of regular injections.

"Authors' conclusions

The evidence derived from these limited studies suggests that 2000 mcg doses of oral vitamin B12 daily and 1000 mcg doses initially daily and thereafter weekly and then monthly may be as effective as intramuscular administration in obtaining short term haematological and neurological responses in vitamin B12 deficient patients."

www2.cochrane.org/reviews/e...

When first I found that doctors were ordering tests which labs simply do not perform, I was surprised. But it got worse when it became obvious that the doctors don't know why - they simply don't get the result and don't ask why. Surely the lab should at least have to explain (e.g. "free T4 not done as TSH is in the lab's reference range and this saves money" - or whatever)? And surely the doctors' clinical independence (such as it is) is being usurped by the lab's financial strictures?

All the best

Rod

[lizsam in reply to helvella]

Thanks Rod for your comments, have gone on to alternate days for B12 injections for a while, meantime will look up Cochrane review.

Am going to phone the lab myself for explanation of tests not done, but suspect it is all financial, we will see.

Thanks, Liz

[RedApple Administrator]

I started on 50mcg too, and I felt absolutely dreadful, much worse than before. It was as if my body went into shock. My GP said maybe he should have started me on 25 mcg, but I'm not convinced that would have made things any easier. With hindsight, I think I probably suffered adrenal exhaustion, but GPs don't recognise that syndrome.

Yes, thyroxine levels in the body affect absolutely everything, including the other hormones, so it may take a while for things to settle down in that direction.

Regardless of what my GP asks for, my local lab never does T3, and only does T4 when the TSH is out of range low. It seems that lab budgets take priority over everything unfortunately!

[lizsam in reply to RedApple]

Thanks for your comments, just feel so awful today, not hyper.. just ill.

Think I might do the thyroid tests privately and send them all to Dr myhill together with my adrenal profile and see what she thinks. Meanwhile will go back to my doctor, phone the lab for an explanation, and hang in there with the thyroxine and see what happens.