This is not a good week, old diagnoses new to me! and new to forum

Hello

Writing for some advice and support please.

I live with hashi, sle lupus and raynaunds, I see endo and rhmy and Gp just for blood test results, there is no care from them.

I take liothyroxine t3 only with much success, a battle in itself, I manage my life and work well (spoon theory) and just about cope full time, I own and run a public house.

To the point

I have been seeing these consultants for over two years and no one has mentioned to me that positive intrinsic factor means pernicious anemia. I thought it was a lupus test. Also the result comes back as normal B12 everytime, so they take no futher action.

I have been supplementing off my own back all the essential vitamins and got a bit slack the last month or so and have been left almost unable to function on all fronts.

I have no relationship with my own Gp and am now going to work my way through the practice to hopefully find someone to help me, with some understanding of autoimmune conditions. Every time i've been to see the Dr my symptoms have been blamed on thyroid or lupus the fact that my vit levels are all low range is ok with them.

I have appointment with a Gp tomorrow to follow up blood test they took last week. They are all within range but low so classed as normal. My Gp can't or won't order Reverse T3 test but my tsh is in range!0.11 (0.35-4.94)

I am unwell and trying to understand a new illness and butting my head once more to recieve treatment I feel is helpful to recovery not masking the symptoms.

my B12 486 (187-883)

serum folate 4.3 (3.1-20.5)

ferritin 51 (20-204)

transferrin 2.13 (2-3.2)

iron 16.5 (4.4-27.9)

transferrin saturation 30 % <50%

I need to know what to ask the Dr for. what can I expect to offer me, lol.

I take solgar b12 b complex sub lingual and gental iron but feel i should be blasting myself with much more, can anyone let me know how they treat their anemia themselves as already i feel i may not get what i want from my Gp.

thank you for taking time

4 Replies

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  • Hi weg1 I'm not medically qualified and there are others on here who will be able to give you good advice, but just looking at your serum B12 level of 486 this could be artificially high by reason of the "solgar b12 b complex sub lingual" you are taking.

    Also, your "serum folate 4.3 (3.1-20.5)" level is on the low side and this is essential to process the B12.

    I wish you well.

  • Hi weg1,

    As clivealive wrote, if you are supplementing with b12, and were doing so when blood serum was tested it will skew the results. Did you start taking B12 supplements before your serum blood test?

    If you have PA as indicated by the positive IF test, then you need to be treated accordingly. If you have any neurological symptoms, it is important to get loading injections and keep getting them until there is no more improvement and then go to injections every 2 months. This is the protocol in the U.K.

    There are pinned posts you can look at to get more info and you can check your symptoms on the pernicious anemia website.

    Your doctor needs to step up and treat you according to the guidelines!

    As far as the iron goes, I took Solgar Gentle iron for about 7 months and it brought my ferritin level from 30 to 76 in that time. Since you are at 51, I would just keep taking it- you are not terribly low and it will raise your level with time.

    I would get some folate, as clivealive pointed out, you are low. 400 mcgs of folic acid or folate should do the trick.

    I am not a medical professional, just someone who has chronic low b12 and was iron anemic.

    Good luck! :-)

  • "no one has mentioned to me that positive intrinsic factor means pernicious anemia. I thought it was a lupus test. Also the result comes back as normal B12 everytime, so they take no futher action."

    Do you have a paper copy of the results of the IFA test clearly stating that it was positive. It might be helpful to have a copy as sometimes test results can go missing.

    Have I understood you correctly that you have had no b12 treatment from NHS?

    I'd urge you to ring the PAS soon and consider joining them . PA requires treatment for life, actual B12 levels are irrelevant as far as I understand if you have a definite diagnosis of PA.

    The PAS can sometimes intervene by writing letters on behalf of members.

    pernicious-anaemia-society....

    PAS tel no 01656 769 717 Office open from 8am till 2pm every day except sundays and some holidays.

    Untreated or inadequately treated b12 deficiency can lead to permanent neurological damage. Some people develop sub acute degeneration of the spinal cord. See 5th summary point in next link.

    bmj.com/content/349/bmj.g5226

    Before next appt with GP, it might be worth reading all the pinned posts. I would recommend reading the "BCSH Cobalamin and Folate Guidelines". It has details of UK B12 treatment and there is a diagnosis flowchart that shows the process GPs should follow with people who may have b12 deficiency. This flowchart mentions IFA tests and how to act on the results. I gave a copy of this document to my GPs.

    B12 books

    "Could It Be b12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12.

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with UK guidelines. I gave a copy to my GPs.

    b12deficiency.info/

    patient.info/doctor/pernici...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thank you all for your replies, I saw a new Gp today who so far is catching up fast, PA is not on my medical records, which backs up my previous Gp is not for me. I did well only broke down once and kept anger at bay and thank you for pointing out to me I had supplemented every B12 test to date. Gp agreed that this would give false results. I find it was endo who first tested positive IF. Questioned Dr who was testing me for B12 as I have blood test sheets for next appointments with consultants and neither of them request B12. Hooray for me again! I will follow up sleepybunny 's suggestions.

    Now I am doubling up on B12 and B complex and I will get some folic too. Seems the Dr has no mind of her own and in requesting advice from said endo as per B12 treatment! Am waiting to hear back, my symptoms are never ending, I hope It's not a long wait. Will arm myself with info.

    Have added gentle iron too as I understand this is very important if on lio T3 only.

    My husband was with me at all my appointments, after being diagnosed with cancer twice it's wise to take back up and he too never heard that diagnoses.

    Take care of yourselves