B12 and folate deficient but negative intrinsic factor.

[Badboybob]

Please help me. Last September bloods showed I was B12 and folate deficient and was given loading doses then every 12 weeks. I was self injecting for 6 months but still had lots of neurological symptoms. I’ve not had an injection now for a month and have felt worse. The doctor won’t increase injections and now wants to retest bloods in a month to see if B12 levels fall. Even though I mentioned it would be artificially high now and I may not be converting to active B12. Doctor now wants to check thyroid in a months time as he said symptoms suggest this could be the issue. I have lichen planus and lots of family history with autoimmune conditions. I am feeling so bad I have no energy to do anything and such brain fog and pins and needles balance issues and sore throat. Should I go back to self injecting even though this did not solve all issues after 6 months or wait a month for these blood tests hoping that my B12 will have dropped sufficiently. I have shakes and tremors and don’t think I can last another month feeling this bad. I don’t know what to do as doctor says I don’t have pernicious anaemia so 12 weekly B12 is enough. Help!!

[wedgewood]

Do read through the posting from Mannequin18 ,jheaded “Where can I get Hydroxocobalamin? “ 2 posts down . Sleepybunny. gives some useful references that you can use . Your doctor should know that testing for B12 once treatment has begun , is a waste of time ant serves no purpose.Your symptoms need treating ASAP. The test for Intrinsic Factor Antibodies is hopelessly inaccurate if it comes up negative as it has for you ( doctor should know this !) Also if you are a member of PAS , you can get help from the Society who often intervene on a patient’s behalf , when , like you, the GP is obviously ignorant about PA . Best wishes .

[Badboybob in reply to wedgewood]

Thank you for replying. I have been self injecting for 6 months but still having symptoms so thought maybe something else is going on with me. Is there any point being retested for B12 they seem to ignore what I say. I have bought an active B12 test online and the doctor said they would correlate both results if I take them at the same time. It means waiting another month as they want to see if my B12 serum drops. Would it though after 6 weeks from an injection? I don’t know what to do.

[wedgewood in reply to Badboybob]

You don’t say how often you inject . I inject once a week ,and have done so for 3 years . My symptoms have more or less disappeared , except that my feet have changed from being numb to burning like hell, which is an improvement, meaning that I can drive .

You may possibly have a problem with your thyroid. As you might have read from members comments on this site , it quite often accompanies PA . ( 2 autoimmune conditions .)

Your blood serum B12 should have started to drop after 6 weeks without an injection . But the amount will vary from person to person . Your symptoms should be treated , not the blood test results .

[Ken-ard20 in reply to Badboybob]

I get mine from Germany it such complicated address take week write it out.It part of rotexmedica same get nhsI went to st Thomas hospital I had every vitamin test going and on border of pa .i no remember name of company but find on net I may even mention on here last year.test not cheap 200quid approx.done in nhs lab.

Other wise get same stuff from eBay.look up polio syndrome not polio illness.It make doctors head spin I think low symptoms.

[Badboybob]

Thank you for replying. Did you self inject? Or just have 3 monthly? 3 years is a long time poor you. Are you symptom free now?

[Lorna12345]

Did you have fasciculations/muscle twiches?