My struggle continues - Low B12 and Hashimotos

[Sammys19]

Please can I have your advise on my first set of bloods to be taken since last January

My B12 has dropped from 179 (130-1100) to 130 (130-1100)

Still the doctors says these results are normal !!

I have told him about my memory or lack of it! Tingling in my fingers which is now constant, extreme fatigue, muscle aches, some days I don't even know where I am...

I'm currently taking 150 Levo and 20 T3 split into 2 doses 10mg about 7.30am and 10mg around 2pm (if I remember)

I'm feeling as though I can't take much more of this

Any advise would be greatly appreciated

[Hidden]

B12 needs supplementing , try 1000mcg - 5000mcg sublingual , followed by folic acid. You may need to supplement D3 plus K2 plus A . If your D is low it can interfere with the B's.

[taka Administrator]

I had a very quick look at your previous posts and see you've had a gastric band and have 3 generations of your immediate family who have PA too. I'm frankly appalled your low B12 isn't being taken seriously.

a) Anyone with those repeatedly low levels should be being treated with B12 injections unless they have diet related reasons for a deficiency (eg Vegan / eating disorder etc).

b) Bariatric surgery increases the likelyhood of malabsorbtion of things like B12. This is a known risk so you should be being treated if your B12 levels are low!

c) Close family history of PA increases your chances of getting PA yourself.

4) You have another autoimmune illness which also increases you likelihood of getting other autoimmune problems too, like PA!

I don't have long to reply but have a look here for the guidelines the GP should be following but clearly isn't. (The following presumes you are in the UK.)

pernicious-anaemia-society....

See this for some info also talking about bariatric surgery

bmj.com/content/349/bmj.g52...

I'd go back to your GP ASAP with these guidelines and ask why they are being ignored and your health being put at risk. Insist an Intrinsic factor (IF) antibody test is done (if it hasn't already) particularly in light of your family's PA history. If this is positive you almost certainly have PA but if it is negative you may still have PA as the test only is not great (the test is very specific but has low sensitivity - ie it doesn't pick up ~ half of positive samples).

Whether you have PA or a deficiency due to your stomach surgery - as you have neurological symptoms of a B12 deficiency you should be given loading doses as a matter of urgency every other day until no further improvement. At that point you should be switched to 2 monthly injections... The British National Formulary on his/her desk should confirm this is the treatment if he doesn't believe you - under Hydroxocobalamin.

Given your bariatric surgery and PA risk I think it should be injections for life.

I should just say I'm not a medic just someone with PA who trying to learn more about PA and is angry about your (mis)treatment and felt she had to respond!

[clivealive Forum Support in reply to taka]

A brilliant response taka

[Gambit62 Administrator]

Please avoid supplementing until you have exhausted everything with your doctor - and used the materials Taka has replied.

Supplementing will skew further test results and make getting a diagnosis even more difficult (if that is possible)

[Sammys19]

Thank you all for replying

Thank you so much for all your info taka

I will look and the links now

I was actually in tears in front of the doctor today when he was telling me the results are 'normal'

I tried to explain to him that although the results may be in range, I'm presenting him with my symptoms and he's still not doing anything about it, he said although it's at the low end of the range, it's still NORMAL and all my other blood tests are fine and not giving any reason as to why my B12 is low, I asked him why he thought it was low.. his answer... I don't know, come back in three months and I'll do another test

Feeling so deflated