Low b12 advice please

[Aloneonprecipice]

Hi all.

Desperately need advice. I have a very long history of various health conditions, like extreme tiredness, hair loss, odd headaches, confusion episodes, low mood etc. I have always been low on iron. Always on prescription iron med of some kind. Nothing helped or diagnosed. I am 39 now.

About a year ago I was diagnosed with hypothyroidism. But nothing improved. Finally diagnosed with very low b12. Level 104. Had loading doses about a month ago and again didnt feel better. I feel worse since yesterday. I was also very deficient in vid.

I read that b12 deficiency have neuro symptoms too. Like tingling and tinnitus. And I have them for years. My doctor never asked and I always thought it was because of iron deficiency.

I want to use my private health insurance but my GP won't refer and keep saying I need to find where the problem is to refer to right doctor.

I tested negative for intrinsic factor and coeliac disease.

I don't know what to do. I can't have another blood test before 6 weeks but as I am feeling rubbish I am sure nothing has improved.

Now I am deficient in iron, b12 and vid d. I have hypothyroidism.

I am seriously worried why I can't keep any levels up. Should I just self refer somehow.

Anyone with any experience.wise words. What should I do?

Have you seen an endocrinologist?

Have you talked to your private health provider about self referring?

2hen you've been deficient for along time and end up as poorly as you,it can take 2, or 3, or even more loading dose before your body stabilises and you can start going for a few weeks without feeling ill.

It took me 3 loading doses and a number of monthly injections before I finally started to really feel better.

@AcornAutumn wouldn't I need hematologist as my GP mentioned. Endocrinologist is for hormones related stuff? I cud be completely wrong.

I have a digital gp service which can be used to get a referral. But I was a bit confused about where to go and thinking that until my next blood test I won't know if my b12 have fallen again. Or if my vid d has risen and what my iron is. I am taking vid d and iron religiously.

@dontdisturbmenow I understand and I thought the same that it might take some time to recover. But there is no plans for monthly injections. Only a blood test in 6 weeks time.

Sadly that's a common issue. Join the Facebook page, plenty of advice on how to approach your GP to raise awareness and understanding of appropriate regimes.

I’d say endocrinology. Our endo dept wrote our local vit D guidelines, and you have a thyroid disorder which is clearly their thing. They will also be well versed in B12 deficiency, as many diabetics will have it. They will also know who to advise your gp to refer on to if they feel another speciality would be advisable.

Endocrinology definitely.
Do you know what your latest TSH & T4 levels are ? Even though, you've tested negative for coeliacs disease, it may be worth following a gluten free diet.
Reading healthunlocked, a lot of people suffer with hypothyroidism and B12 deficiency. There are definitely lots of people who self-medicate from reading posts on that website.

Thanks everyone. Very enlightening. That's exactly kind of help I was looking for.

@l2b2
T4 was 10.4 and TSH was 3.67.

I am seriously thinking of going private. Endocrinology is the way forward.

Has your TSH ever been lower than 3.67?
I ask because, although 3.67 is in range, many replaced patients only feel well when their TSH is around 1.

Are you taking Thyroxine?

A lot of your symptoms may resolve with a slight increase of thyroxine.
Are you prescribed Vit D and Iron supplements by your GP?

@l2b2
Thank you for reply.

Yes I am taking 50mcg levo thyroxine.

I am taking prescription iron and vid D as well.

50 mcg is a starting dose.

GP should be aiming for TSH under 1 and FT4 and FT3 in upper parts of ranges.

Don't join any FB groups. Very poor quality advice imo.

I'd go onto the Thyroid U.K. forums and Pernicious Anaemia forums on Health Unlocked and post what you have posted there.

Hypothyroidism can cause low vitamin levels as it can affect your ability to absorb vitamins from food due to lowered stomach acid. However hypothyroidism is usually caused by an autoimmune disease called hashimoto's so your low B12 could be another autoimmune condition called pernicious anaemia.

Go to the forums I'be suggested above you'll get loads of great advice.

Also check out the Thyroid U.K. website and PA Society website.

Best of luck.

@ravingAnnie thanks. Yes I have heard of pernicious anemia and my GP said no, cause of negative intrinsic factor antibodies.

I will join the website u asked. I have heard good things about it.

You are right about thyroid levels. But each test result shows that j have touched the bottom line of a range, iron or thyroid, gp just halts the treatment because the. I am supposed to me in normal range.

I started off with 25mcg levothyroxine. After 3 month blood test she upped it to 50.

I think the amount of blood test I have had, I would need a transfusion

Thank you all again. I wasn't expecting such positive help.