hashimotos and b12

[Rowing2]

hi everyone,

I’m a member of thyroid uk amongst other issues I’m having trouble getting a loading dose of b12 as per nice guidelines. One of thyroids member told me to ask on this forum and id be really grateful for any help offered.

I have hashimotos disease, I take 100mcg levo and previously to that, I also took liothyronine at 12.5 mcg daily which I self sourced ( due to issues I had with consultants regarding my tsh going down to 0.05 and the fact I dare take lio without their say so, I stopped taking it even though i told them it made me feel a little more human).

My results for tsh are always fluctuating ( proof of this is in the most recent tests as I now have no t3 in my body). I have put on 3 stones in total , one being immediately after stopping my t3.

I had recently fought ( as it seems with everything) to get B12 injections. I was super happy to then get them and thought this may make me feel a little better. They had initially said no, but I explained my diet was good and I had taken oral supplements of b12 along with other supplements for over 4 years and nothing raised them. I felt an immediate benefit, but that soon disappeared . I was then asked on thyroid uk ‘did you not have a loading g dose’ I looked on the nice guidelines then rang my gp. The nurse who’d administered the first dose ( done in Feb, next one due in may), rang me and told me I was borderline anyway and really didn’t need them. I told her I totally disagreed, that with hashimotos the levels should be higher anyway and that it made me initially feel better. She said it would do that, but then just gets rid of what’s not needed and also because my intrinsic factor was negative ( I’ve looked at my notes and there’s no range, just says negative) I won’t get the lading dose and I’m lucky to have it quarterly anyway. . I’ve also asked about pernicious anemia, but I’m just told absolutely I don’t have that , but I’m not sure what’s tested for that for them to know.

My most recent results are :

Ferritin 34 ng/L (30-400) was 28 before , b12 182ng/L(190-910) , folate 4.2ng/L (3.3-99,999), t4 15m/pol (9-23), t3 4.6(3.5-6.5), TSH ( 0.29(0.35-5.5), intrinsic factor- negative , vitD 57(50-99,999), I’m also awaiting X-rays for osteoarthritis in my hands and am to go to a good allergy clinic for issues with my stomach.

any input would be greatly appreciated

[Nackapan]

The Intrinsic anrybody test if positive means you have PA

If as in your case its negative it doesn't actuslly rule out PA

50% of those with PA get a positive test.

Many have s few tests before s positive one or even get more privately .

No idea why you didn't receive loading doses.

6 over 2 weeks .

Then 2- 3 monthly is standard .

If you arn't vegan and have a b12 rich diet it obviously isn't s dietary deficiency but an

absorbtiin issue Any kind requires b12 injections at s frequency to keep you as well as possible..

Speak to a G.p.

Ask for loading doses.

For some reason nurses are not trained beyond Injecting B12 but have plenty to comment about treatment and retesting levels in my experience.

G.ps are also not educated in B12.

They should at least follow NICE guidelines and refer on.

Most need a multivitamin with iron and folic acid in as s maintenence dose.

I do.

Also a low dose iron tablet.

Initially prescribed to raise fertin level.

I was symptomatic at 28 .

I'm okay around 48- 56

You don't mention symptoms?

List and your response to the one b12 I jection you got.

Write in to the surgery

It will be scanned onto your notes .

[Rowing2 in reply to Nackapan]

Thank you so much fir your advice. The GP told the nurse to contact me. When I had the first injection I initially felt great but it only lasted about 4-5 says , the felt dreadful again. I feel dreadful generally . Tired sometimes exhausted , my body aches , eyes hurt , brain fog, lots of hot seats at night, pains f do own my legs at night. Constant pain in hip area , skin very pale. Stomach issues( awaiting appointment for food allergies) . Possible osteoarthritis ( getting X-ray next week) in hand which is now claw like and painful, other hand poss rheumatoid arthritis . Sometimes breathless due to goitre from my hashimotos . I don’t at present take iron, but have always taken b12 oral spray, vit d with k2 oral spray, selenium, magnesium . I take 200 mcg levo and up until 3 months ago 12.5 mcg lio . I was vegetarian, but introduced chicken back into my diet over a year ago , my diet is very good.

Thank you so much fir your advice I will add a multivitamin with iron and folic acid , do you recommend any brands.

[Nackapan in reply to Rowing2]

Most multi vits are fine . Chemist own supermarkets.A-z vitx and minerals

I use spartone as only 5mg Vit c helps absorb Iron from food

[topazrat]

I had a positive Intrinsic factor test with a B12 level of 250. Even then my G.P. refused loading doses because my B12 level was 'fine'. I was offered one jab (only because of the positive IF) and then one three monthly going onwards, even though I was extremely symptomatic. After banging my head against a brick wall for a few months, quoting guidelines until I was blue in the face, I decided to self inject. I know guidelines are just that, guidelines, but it seems that the days of actually listening to patients are long gone. It now boils down to results on the computer, rather than listening to symptoms and acting upon them 🙁

[Rowing2 in reply to topazrat]

Hi there, I’m at the point of giving up ( but obviously can’t) it’s all such a huge fight . I understand how you feel. The other day I had an appointment to see a physio for an initial meeting for my hand …..it was the same hospital where I’d seen an endocrinologist and then made a complaint against him as he was utterly rude , patronising and horrendous. The appointment couldn’t have been more different if it tried. Thoughtful, engaging, sympathetic, professional and incredibly efficient. He personally rang back and told me he’d skipped the waiting list and I could pop in for an X-ray as soon as I wanted as he wanted to sort it out for me. On the other hand hashimotos and anything related to it is just an absolute nightmare and I feel part of the reason we feel so flat and sometimes depressed is the way we are treated.