Not sure where I should ask this

Please forgive me if this is in the wrong place, desperate to help my son.

He has Ulcerative Co!itis and is quite unwell, myself and his brother have PA so I asked for this check.

The rezult wzs 503 ( 175--975 )

The consultant was happy with that but I feel it should be at the higher end as he is unwell . He is on 150mgs Azothyaprine and has dreadful fatigue and no life for a 37 yr old.

Any help gratefully appreciated.

Ell

14 Replies

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  • Are you UK based?

    It might be helpful to speak to PAS (Pernicious Anaemia Society). You may need to be a member.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Useful info about b12 can be found.....

    1)PAS website

    2) Pinned posts on this forum

    3)http://www.b12deficiency.info/

    4) BCSH Cobalamin and Folate Guidelines

    5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    6) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart

    7)

    bmj.com/content/349/bmj.g5226

    Causes of B12 deficiency

    b12deficiency.info/what-are...

    UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 is within normal range. See BMJ link 5th summary point. also BCSH Cobalamin and Folate guidelines page 29.

    Has your brother looked at lists of b12 symptoms?

    pernicious-anaemia-society.... Click on Symptoms Checklist. I ticked all my symptoms and gave a copy to GP.

    b12deficiency.info/signs-an...

    fbirder has a summary of quotes from mainly UK b12 documents that might also be useful. Link to summary on his profile page and also in third pinned post.

    Link about writing to GPs if unhappy with treatment. Does not seem to mention BCSH Cobalamin and Folate guideliens which I would mention if I wrote to GP about b12 issues.

    b12deficiency.info/b12-writ...

    "The rezult wzs 503 ( 175--975 )"

    I assume this was a B12 serum test. Has he had an IFA(intrinsic Factor antibody) test?

    Page 29 of the BCSh Cobalamin and Folate guidelines is a diagnosis and treatment flowchart. It makes it clear that people who are within range for serum b12 should have an Intrinsic Factor antibody test if they are symptomatic for B12 deficiency. I gave a copy of whole document to my Gps with relevant bits circled.

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

  • It is possible for people to have severe B12 deficiency with normal range B12 results. See article in next link.

    ncbi.nlm.nih.gov/pubmed/191...

    Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

    With the family history of PA I'd be surprised if his doctors are not considering that as a possibility.

    pernicious-anaemia-society.... see section on genetics

    There is a section on PAS website for medical professionals which may help his doctors.

    I sometimes wonder if some doctors are unaware that it can affect all ages. The PAS has members who range in age from toddlers to 80 plus years.

  • Hi sleepybunny,

    Want to thank you sincerely for your very much appreciated reply. You gave me lots of references and now I have notes from all the rep!ies and links we can move forward.

    Interestingly my two sons live 20 miles apart and 1 gets B12 shots every 6 wks the other with lower levels has been refused shots ( UK different counties )

    The fight continues !

    Thank you again.

    Ell

  • Hi ellj do I understand that the 503 ( 175--975 ) is your son's B12 level?

    "People at risk of B12 Deficiency are those with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders"

    People with a family history of pernicious anaemia.

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption. Azothyaprine has been reported to cause vitamin B12 deficiency.

    I am not a medically trained person but above are three pointers among many others that can lead to B12 Deficiency.

    Hopefully there are others on here who can give you some good advice.

  • I am wondering if he is on BP meds?

  • No other meds just Azothyaprine

  • I was diagnosed with Crohns some 43 years ago having also had Ileo-Caecal TB. I have never been able to cope with any Crohns treatment and endured several more surgeries with complications over the years.

    I am so pleased you have posted here - where there are so many helpful and VERY knowledgeable people. As I have Crohns - I am/was a member of the Crohns/Colitis forum - but sadly my postings were restricted as I posted a couple of times about VitD and B12 - and also the possible effects of gluten. I was then restricted - the reasons given were that I implied Gluten etc was a cause of Crohns and apparently B12 is excreted :-) If you click onto my name above you can scroll through my posts and find the relevant ones on the Crohns and Colitis forum :-) You can also read of my journey to wellness.

    May I suggest your son also has VitD checked - as it can have positive effects when optimal. It is more than a vitamin and is a steroidal pre-hormone as well as being anti-inflammatory. There are receptors for VitD in every one of the billions of cells in the body - so being low can be a problem. Low VitD seems to accompany Low B12 ....... and also low thyroid.

    I was diagnosed with Hashimotos in 2005 and have made great strides since learning so much more about the little gland in your throat and how the condition connects with so many systems within the body.

    Really happy to help - so please ask as many questions as you can think of. We sometimes have to look for the root cause rather than place sticking plasters over the symptoms. Whilst on the Crohns and Colitis forum my aim was to point people into the direction of information for people to learn new things. I notice there have been no replies to your post there :-)

    Really hope you soon find some answers :-) I too have poorly family so feel your desire to help .....

  • Vit D checked and result

    42 so now using vit d spray.

    Thank you for your thoughtful reply and help, trult appreciated.

    Ell

  • grassrootshealth.net/media/...

    The above chart indicates the dose required according to test results. Your sons results were quite possibly in pmol/L so dividing the result by 2.5 will = the above chart. I made your result around 17 - so a dose equivalent to 4000 IU's should help to improve levels. Hope so :-)

  • Thank you again Marz, I am suffering from my own fog trying to follow through with all the info as I have MS FM PA Hypothyroid and other health issues. My priority now is to help both of my sons.

    I had suggested 2000 IU,s will up it to 4000.

    Bless you

    Ell

  • Take good care 😊

  • A huge thanks to all who have replied and offered help and information.

    I need to read it all through again and start making notes.

    Interestingly I just had his vit d tested privately and he is low ( insufficient ) so started vit d spray a few days ago.

    Many many thanks once again, I will post again as soon as I get my head around all this.

    He does eat gluten free and dairy free also as we found that he had worse symptoms when eating gluten and dairy.

    At last I feel we may get some control back with information comes understanding and hopefully control .

    Ell

  • Not sure what dose of D3 your son is taking but I am wondering if you have found ...

    grassrootshealth.net

    The above website has a chart which indicates the dose required based on the test result. Last time I looked the chart was in both ng/L and nmol/L. If you are in the UK your results will be the latter. Lots of other good information there too.

    Have you considered LDN ? It seems to be gathering momentum and with success.

    Your son seems to be doing so many good things to heal his gut. It just takes a long time it seems .....

  • Tried LDN for a year with no improvement sadly.

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