Hashimotos and b12

[Underactiveclare]

I’ve just found out today that I have Hashimotos. A few people have mentioned the importance of b12. I had approximately 6 shots of it a couple of years ago when levels dropped and then the dr stopped them. My recent bloods were 251/ng/L. Any advice would be greatly appreciated.

[Cornwaller]

B12 and Hashimoto's are common co morbidities - I have both. To feel well I have to manage both conditions. For me b12 is the "dominant" problem and I would be pretty unwell with that blood level and no b12 shots. Once I have the b12 optimal ( by SI) I very carefully nudge the thyroid meds up to optimise my well being but not overdosing.

Do you know why your doctor stopped b12? Do you have symptoms of b12 deficiency (see B12d.org)? If so I'd tell the doctor in writing and request regular injections as detailed in the NICE protocols and elsewhere.

[Underactiveclare in reply to Cornwaller]

Thank you so much Cornwaller. I’m going to try and get an appointment with my old gp and see if she will listen. I have a lot of b12 deficiency symptoms but last gp just said levels are fine so nothing she can do. I have been feeling really ill for a little while now.

[Underactiveclare in reply to Cornwaller]

All I remember being told at the time is that my levels were now back to normal so I did not need injections any more. This is all of the information that I can find on my record:

Normal range: 150-1000

03/06/20 131ng/L

13/10/20 742ng/L

22/02/21 481ng/L

17/08/21 321ng/L

18/01/22 240ng/L

14/10/22 207ng/L

03/05/23 251ng/L

Intrinsic Factor antibody tested 19/06/20 no range or result recorded.

19/06/20 Intramuscular injection of vitamin B12

24/06/20 Intramuscular injection of vitamin B12

26/06/20 Intramuscular injection of vitamin B12

03/07/20 Intramuscular injection of vitamin B12

22/07/20 Intramuscular injection of vitamin B12

28/07/20 Intramuscular injection of vitamin B12

Current B12 deficiency symptoms; shortness of breath, blurred vision, tiredness, weakness, tremors, memory loss, coordination off, anxiety, low mood.

[Cornwaller]

So, from the above, you had b12 deficiency and they gave you the loading doses of b12.

NICE guidelines then state....

Maintenance treatment, usually with hydroxocobalamin 1 mg intramuscularly every 3 months for life — where B12 deficiency is not thought to be diet related.

I quote "for life"

The NICE guidelines weren't followed. Worse you were fobbed off with nonsense. The continued b12 blood tests were a waste of NHS money when for the same or possibly less you could gave been given the b12 shots you need. The GP should also have had your intrinsic factor checked.

The normal range you've been given is not widely accepted. More commonly, for example the BMJ best practice, has a range more like:

< 200 b12 deficiency is likely

200-350 b12 deficiency is possible - check for symptoms

>350 b12 deficiency is unlikely

In Japan the elderly are treated for b12 deficiency when their serum levels fall below 500! But what would they with their very high life expectancy know?

Their is a hypothesis that low b12 levels increase the probability autoimmune diseases developing.

I hope you can gently show your GP that appropriate treatment is needed and given that you have neurological symptoms the need for treatment is urgent. So ask for an urgent appointment as you have neurological symptoms.

You deserve to be treated quickly and competently given the mess they've made of your health care. I would ask for the loading doses to be repeated. I would be interested to hear how you get on.

Best wishes.

[Underactiveclare in reply to Cornwaller]

Thank you so much for your time, knowledge and support. I really appreciate your help. I’ve been taking the b12 drops but clearly my body will not accept it this way. I will post again as soon as I have been to gp. Have a lovely weekend.