need help please: Hi All well the GP... - Pernicious Anaemi...

Pernicious Anaemia Society

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need help please

mully profile image
11 Replies

Hi All

well the GP wouldn't accept the private blood results

CRP 7.4 (normal 5)

VIT D 12 ( deficient below 25)

VIT B12 134 (deficient below 140)

So He did them again

CRP 12 (no range)

VIT D 12 (no range)

B12 211 (normal range 180-866)

His advice is no treatment necessary but buy some vit D supplements

What now ?

would be grateful for any advice

Thanks Mully

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mully
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11 Replies
pvanderaa profile image
pvanderaa

Start a logbook of all your symptoms especially the neurological ones. Try to assess your own severity score.

Provide a hard copy list to your GP at each visit and ask for it to be included in your file.

Your GP needs more evidence so gather it for him on a daily basis.

Discuss this plan with your GP and ask for his input to get him to buy into the concept and to get him past the "I've got a hypochondriac on my hands" stage.

If he tries to diagnose anxiety and prescribe an antidepressant explain that these are symptoms of the deficiency.

Sometimes when a GP holds a list of symptoms in their hand, they have a change of heart and start looking closer at what you are saying to them.

Even though you may be panicking, remain calm when discussing with your GP and don't play victim.

Good luck.

mully profile image
mully in reply topvanderaa

hi thanks for the reply I am diagnosed with multiple sclerosis (from MRI and lumber punture) and also hughes syndome (sero negative diagnosis was after many thrombosis pulmonary embolism ) I have had anaemia on and off since puberty and can't help thinking what if these conditions are from a life time of deficiency

pvanderaa profile image
pvanderaa in reply tomully

I found that the logbook gave me some control back as I was also having short term memory loss.

There is a delayed reaction of 3-48 hours for some symptoms as the gut is involved. Once you recognize this delay you can correlate the symptom to the cause. Some symptoms follow each other in sequence so you can anticipate the. next one when you see the first.

New symptoms arise from the B12 jab and their severity seems to correlate to how low you were before the jab.

Pain is a counterintuitive symptom that arises from healing nerves. I find it hard to get started but once I'm moving, I can go all day , if I pace myself and don't over do things. Range of motion exercises are needed to stimulate the nerve repair.

Gambit62 profile image
Gambit62Administrator

Refer your GP back to the BCSH guidelines which are that people should be evaluated for B12 efficiency in the light of symptoms not just scores in test and the serum B12 test is not as specific as it should be for the test results to be sufficient for diagnosing. Also point out that 30% of patients present with neurological symptoms before presenting with macrocytosis so no macrocytosis doesn't rule out a B12 deficiency. Diagnosing is going to be quite difficult if you have MS ... but you could also point out that there is a strong body of evidence that MS patients benefit from treatment with B12.

Sallybones profile image
Sallybones

I know they are backwards regarding B12 but Vitamin D being so low should be on prescription by GP. The blood test report should say so too unless they are cutting back on everything and it could be cheaper to buy your own if you pay for prescriptions? It should also show the range. When my D3 was low it said Action and supplement.

I've started to look at GPs and the like as amateur professionals - I've had a bad day and a pathetic response to ongoing health situation.

Please keep on keeping on mully.

mully profile image
mully

Thank you so much for the replies My husband is going in to see the GP on my behalf and plead for help (can't do any harm) If all fails I will start supplements myself, I'm nervous about taking B12 last time it felt like it made my pain and numbness worse

Marz profile image
Marz in reply tomully

Have you read the book - Could it Be B12 ? - by Sally Pacholok ? It does cover the confusing diagnosis of MS and B12 Deficiency. Taking B12 can initially cause symptoms to flare as the nerves begin to heal. B12 as you know is involved in the protective myelin sheath that covers the nerves - the deterioration of which is part of MS.

b12deficiency.info/signs-an...

Information about Sally P is in the above link as well as a wealth of other bits and pieces. Scroll down for the neurological signs and symptoms of B12 Deficiency.

Also your VitD is VERY low. I would suggest a dose of 5000 IU's a day taken with VitK2 and MK7. The latter is vital to ensure improved levels of calcium in the blood are directed to the bones and teeth and not left circulating in the arteries. It would be advisable to re-test at the end of winter. Also magnesium is important - most people are deficient and works with the VitD.

vitamindcouncil.org

I am not a Medic - just a Hashimotos girl with a B12 issue .....

Marz profile image
Marz

vitamindcouncil.org/health-...

Sorry could not edit the above post ....

Foggyme profile image
FoggymeAdministrator

JamesStone.

Please be aware: supplementing with B12 (via any means) prior to diagnostic testing can skew blood results (B12 levels rise due to supplementation having taken place). People who do this are unable to be properly diagnosed and treated: they are left in a diagnostic wilderness. In addition, other important factors are missed (like the need for adequate folate and the importance of not taking folate if B12 levels are low).

We would therefore advise all forum members to seek medical advice and appropriate diagnostic investigations prior to taking any B12 supplements.

Whilst many members do self-inject, this is usually after taking medical advice and if GP's fall short and fail to offer treatment suitable for the particular individual.

Please take these considerations into account when posting replies and stop indiscriminately advising forum members to self-inject vitamin B12.

Clutter profile image
Clutter

Mully,

When my vitD was <10 my GP prescribed ProD3 40,000iu daily x 14 and then 2,000iu daily x 8 weeks. VitD was 107 when retested. If you can't get a prescription vitD3 is an inexpensive supplement which is available without prescription. Doctor's Best via Amazon is a softgel capsule with D3 in olive oil (the fat aids absorption).

Foggyme profile image
FoggymeAdministrator

JamesStone. The next and most appropriate action would be to advise Mully how to get her GP to treat her for her obvious B12 deficiency.

There are also diagnostic tests that have not yet been undertaken (which members would advise on)....supplementation at this stage would skew the results of those tests.

I am not going to discuss this with you further.

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