Pernicious Anaemia Society
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Advice please....GP won't treat :(

Hi all,

I have been reading posts on this site for a while now and I think it's the only thing that's kept me sane!! Thank you all for sharing your symptoms, experiences, knowledge and advice as without your posts I would have continued to feel like an obsessed hypochondriac. I apologise for the lengthy post but would appreciate any advice as I have learnt far more from the community here than any NHS websites or GPs.

I began experiencing skin changes just under a year ago with age spots, oily skin and acne becoming progressively worse before I finally requested a blood test to check my hormones and thyroid in April this year. My B12 serum level was 166 at this point but all other results were reportedly normal. I was therefore deemed 'borderline deficient' and told the cause was dietary despite never having followed a vegan or vegetarian diet in my life. My FBC was tested and did not show any signs of anemia so I was sent away to "eat more coco pops" as my GP put it. I did my own research online and ordered the Solgar 1000mcg Methyl sublinguals and began taking around five of these each day. I also began eating fortified cereals, liver pate, eggs and chicken/beef every day. I did only take the sublinguals for a few weeks as I later decided I wanted to push for a diagnosis with my follow up blood serum test. I did continue with the dietary changes for the full three months. My follow up test in July showed a B12 serum level of 234. I had foolishly eaten breakfast on this occasion when on the previous occasion I hadn't so unsure as to whether this affected the results or the 60+ 1000mcg sublinguals I'd taken in April.

I'm now back on the sublinguals and noticing some improvements in my enegy levels. I'm still experiencing the random muscle aches, twitches, headaches, earaches, acne, diarrhea, tingly sensations in my hands, feet and predominantly my scalp/sinus area. I have also now noticed my hair is thinning and I'm feeling more depressed and deflated. I assume that B12 serum tests will now show skewed results due to the sublinguals but wondered if there were any other tests I could request from my GP that would be unaffected by the sublinguals? I have taken 2000mcg for two weeks and then around 8000mcg for the past five days after reading up some more online.

Thank you to anyone who has made it this far! Any advice greatly appreciated. I have a doctors appointment booked and feeling ready to stand my ground!

Des

9 Replies
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Hi dcs88 has your Folate level been tested - it is not always included in a FBC -but it works with B12 to help your iron function properly

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Hi clivealive,

I'm pretty sure they did test it with the FBC but will check when I'm back there next week

Des

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I had a B12 serum level of 159 which was not deemed worth treating in spite of symptoms such as dizziness , exhaustion , memory problems brain fog and numb feet( which were just deemed "idiopathic "( with no investigation as to why ). So I was on my own . I took the sublingual lozenges as you have , plastered my body with B12 patches and snorted B12 spray . To no avail ! Went to private doctor at a Nuffield Hospital - blood test which showed off the scale. B12 BUT did reveal Intrinsic Factor antibodies in spite of the very high B12 reading . . I read that one needs to have been off supplementation of B12.for some weeks before taking the IFA test . Anyhow I had to then have loading doses , which started to work . But waiting for 3 months for the next injection was terrible . And the symptoms returned . GP refused more regular treatment , suggesting hypochondria , so now I have to SI weekly . It has changed my life . So I don't know what to advise you about stopping the supplementation . Perhaps the private GP uses a different test to the NHS . I don't know . That was my experience .dcs88 . Don't know if that helps you . Best wishes .

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Thank you for sharing your experience. I'm sorry you've experienced similar. I think I will still push for the IFA test and hope it shows something as yours did but won't hold my breath!

Reply

Hi,

"My follow up test in July showed a B12 serum level of 234"

Are you in UK?

The following flowchart from BSH CObalamin and Folate Guidelines makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA test (Intrinsic Factor Antibody) and start initial B12 treatment. This applies whether B12 is low or within range.

stichtingb12tekort.nl/weten...

If in UK, I'd suggest reading whole of BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Are you symptomatic for B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Do you have any risk factors for PA or B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Letters to GP about B12 deficiency

Some people on forum have put their concerns, symptoms, blood test results, extracts from B12 documents in letters to GP

Link below is about writing to GP about B12 deficiency.

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic with normal range B12.

"I was therefore deemed 'borderline deficient' and told the cause was dietary despite never having followed a vegan or vegetarian diet in my life"

I think it's important that your GP knows what your diet is like.

Did you tell him that you were not vegan or vegetarian?

Do you eat B12 rich foods eg meat, dairy, eggs, shellfish, fish?

Dietary deficiency of B12 is often treated with B12 tablets. If you have an absorption problem then you may need B12 injections.

Too tired to add more. I have written some detailed responses within last few days. May be useful info on them if you search for my posts.

I am not medically trained.

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Thank you sleepy bunny for your response. I think I will be taking plenty of printouts from the links you've provided when I go back next week. 👍

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dcs88 there are actually two different ways of measuring B12 that have different ranges - 166 would be a little way into pmol/L range but would be off the bottom of ng/L range so important to know what the units and reference range were.

the amount of B12 you had in the breakfast cereals will not have had a significant impact on B12 levels - the levels in your blood aren't that responsive to diet because the body stores B12 in the liver and releases it for reabsorption as needed. However, the 1000mcg tablets taken in April may well have affected your result.

It is possible that your GP is saying it is dietary because an IFA test was done with the first sample and came back negative. However, IFA gives false negatives 40-60% of time depending on the assay method so a negative is a long way from proving that you don't have PA, and even if you don't have PA, that isn't the only absorption problem that will affect B12.

Your GP is unlikely to be aware of this but the fact that your diet isn't deficient in sources of B12 is proof that it can't really be down to diet.

Could you write to your GP pointing out the information above and referring them to the BCSH standards for diagnosis and treatment of cobalamin and B12 deficiencies. Your GP can access these through the BNF but you can also access them here

onlinelibrary.wiley.com/doi...

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Thank you gambit. I'm pretty sure no testing has been done for IF as the initial bloods were only for hormones and when I suggested IFA test on hearing results I was laughed at!

I'll be returning next week with BCSH standards in hand 👍

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Hi,

Good luck for next week.

More b12 info

1) Pinned posts on this forum. I found fbirder 's summary of B12 documents useful...lots of extracts from B12 documents. Link to summary in third pinned post.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises the need to treat people who are symptomatic for b12 deficiency to prevent neurological damage even if no clear B12 deficiency in blood test results.

3) Have a look at Point 5 in link about writing letters to GP in my post above.

There is a link to UK NEQAS B12 ALert which emphasises the possibility of neuro damage if treatment is delayed in symptomatic patients. Other points in this link may be of interest.

4) B12 books

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

Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this book to my GP along with BSH Cobalamin and Folate Guidelines and a copy of PAS Symptoms Checklist.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies. Made me cry as I could recognise myself in the case histories.

"Could it Be B12; An Epidemic of MIsdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Antibody Negative PA (PA where IFA test is negative)

Antibody Negative PA is mentioned in BSH Cobalamin and Folate Guidelines and on flowchart I gave a link to. My experience was that some UK GPs are unaware that Antibody Negative PA exists. Martyn Hooper , chair of PAS tesed negative on IFA test more than once before testing positive.

B12 blogs

Martyn Hooper has a blog about PA and B12 issues

pernicious-anaemia-society....

There is also an interesting blog on "B12 Deficiency Info" website.

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 71 answerphone so messages can be left

If you suspect PA is a possibility, may be worth joining PAS. They are helpful but busy and may not have resources to help non-members. There is a lot of useful information that members can access on PAS website. Some info is available to non-members.

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