For those needing to convince GP ..

Discussion specifically about the diagnosis and treatment of Pernicious Anaemia

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For those needing to convince GP ..

Postby anotherwithpa » Fri Nov 20, 2009 3:10 pm

I have made a current selection of info for those needing to know where to find info to convince GP they are not abnormal because they do not seem to cope with the standard UK B12 treatment.

If you are not feeling well on standard UK B12 treatment then rest assured, you are not the only one. The funny thing is in Holland and Germany they use the same B12 (Hydroxocobalamin) as in UK, but their guidelines for maintenance is once every two months. It make you wonder why a Britt with PA has to be more chin up, than its EU neighbours.... to read some comments from same minded people see:



Try this:
This clearly states there can be a good serum B12 reading , but functional B12 may not be good still causing further damage so to speak, see:

http://www.ncbi.nlm.nih.gov/pubmed/1915 ... t=Abstract

Functional vitamin B12 deficiency.

Turner MR, Talbot K.

Department of Neurology, John Radcliffe Hospital, University of Oxford, Oxford, UK.

We describe a case of functional vitamin B12 deficiency where the repeated measurement of a serum B12 level within the normal range led to delay in the diagnosis of subacute combined degeneration of the spinal cord, and possibly permanent neurological damage as a result. Failure of intracellular transport of B12 by transcobalamin-2 can lead to functional B12 deficiency but with apparently normal serum levels, and is suggested by raised levels of either serum methylmalonic acid or homocysteine, associated with low levels of transcobalamin-2. Such patients may respond to repeated high-dose injections of B12.

Publication Types:
Case Reports
Historical Article

PMID: 19151237 [PubMed - indexed for MEDLINE]

And this:
http://www.ncbi.nlm.nih.gov/pubmed/20587489


Perhaps it is worth guiding GP's to this NHS site see:


Interpret the results of the serum vitamin B12 test taking into account clinical symptoms and the following limitations [British Columbia Medical Association, 2006]:

The test measures total, not metabolically active, vitamin B12.

The levels are not easily correlated with clinical symptoms, although people with vitamin B12 levels of less than 75 picomol/L (approximately 100 nanograms/L) usually have clinical or metabolic evidence of vitamin B12 deficiency. In most people with vitamin B12 deficiency, the serum vitamin B12 level is below 150 picomol/L (approximately 200 nanograms/L).

There is a large 'grey zone' between normal and abnormal levels.

Reference values (and units) may vary between laboratories.

Clinically significant vitamin B12 deficiency may be present even with vitamin B12 levels in the normal range, especially in elderly people.

Rare cases of false normal vitamin B12 results have been reported in the presence of high titres of anti-intrinsic factor antibody in people with megaloblastic anaemia or subacute combined degeneration of the cord. Therefore, the diagnosis of vitamin B12 deficiency should also include evaluation of the person's clinical state and other laboratory findings [Galloway and Hamilton, 2007].

Women taking oral contraceptives may show decreased blood vitamin B12 levels because of a decrease in cobalamin carrier protein, rather than a deficiency state.

Vitamin B12 levels may be falsely low in pregnant women because of the increased plasma volume of pregnancy rather than actual deficiency of vitamin B12 [Galloway and Hamilton, 2007]. This makes it practically very difficult to diagnose vitamin B12 deficiency in pregnancy.

And:



Anaemia - vitamin B12 and folate deficiency - Management
What if a person is still symptomatic despite maintenance vitamin B12 treatment?

Seek specialist advice if a person's symptoms recur before the next injection is due.
Basis for recommendation
Some experts acknowledge that there is a small group of patients who report a recurrence of their symptoms earlier than 3 monthly.
CKS could find no guidelines or evidence on the management of this group.
Feedback from expert reviewers differs with regard to whether or not more frequent intramuscular injections of hydroxocobalamin 1 mg are required, and if they are, what regimen to suggest.
In the absence of evidence and expert consensus CKS suggest seeking specialist advice in this situation.

If you are experiencing neurological problems I’d recommend you see a haematologist and or neurologist.
See:
Clinically and MRI documented funicular myelosis in a patient with metabolical vitamin B12 deficiency but normal vitamin B12 serum level

http://www.dach-liga-homocystein.org/EN ... renzl1.pdf

This case demonstrates that metabolic vitamin B12 deficiency should also be considered in patients with normal serum vitamin B12 levels and lesions of the spinal cord,which are not associated with infection. In such cases, the determination of methylmalonyl acid and homocysteine is a valuable diagnostic tool that can be used to follow-up patients with effectively treated vitamin B12 deficiency.

To view detailed info on research articles showing no harm from to much B12, see:
http://www.pernicious-anaemia-society.o ... hp?t=10590
Articles that imply possible harm see:
http://www.pernicious-anaemia-society.o ... hp?t=11493

If you want to understand more about active B12 have a read in this topic, see:
http://www.pernicious-anaemia-society.o ... hp?t=11132
and:
http://www.pernicious-anaemia-society.o ... hp?t=10060

Doctors practicing in the Private Sector, or those who also practice Homeopathic Medicine, offer an alternative treatment regime using Methylcobalamin Infusions and providing Methylcobalamin that is self-injected sub-cutaneously whenever the patient feels the need for it.

Fight for your health, its only you who will benifit and only you who knows when the B12 has finnished working, no GP knows or feels that. One size just does not fit all.

Kind regards,
Marre.

Added: I personally believe it is more natural to have regular top ups of B12 etc, but I will allways make sure I stay in the ref range of "normal", same counts for folate or any other vitamin, less is more is my motto, but one needs enough to feel well, this seems to be very different per person...
Last edited by anotherwithpa on Tue Aug 10, 2010 8:16 am, edited 3 times in total.
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Postby olgawarren » Fri Nov 20, 2009 6:31 pm

We describe a case of functional vitamin B12 deficiency where the repeated measurement of a serum B12 level within the normal range led to delay in the diagnosis of subacute combined degeneration of the spinal cord, and possibly permanent neurological damage as a result. Failure of intracellular transport of B12 by transcobalamin-2 can lead to functional B12 deficiency but with apparently normal serum levels, and is suggested by raised levels of either serum methylmalonic acid or homocysteine, associated with low levels of transcobalamin-2. Such patients may respond to repeated high-dose injections of B12.
]
Hello Andria,
I have got subacute combined degeneration of the spinal cord and didn’t respond to standard treatment of 1mg hydroxocobalamin every 3 days since May 2009. After reading a lot, I still can’t establish what is the right level of repeated high dose injections of B12. After consultation with the doctor I have been prescribed 5mg of Methylcobalamin subcutaneously daily for a month with the review and an option of IV if the treatment fails plus 4mg folinic acid (active form of folic acid). I have tried 1mg of Methyl and I can say that 5mg is more beneficial. Is anybody got cured with subacute combined degeneration of the spinal cord? What are the options at hand if this fails? I can’t find anything except it might be irreversibleï
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Postby anotherwithpa » Fri Nov 20, 2009 6:49 pm

Hi Olga,

There is hope...but time is involved, more years than months to be able to say that's all that will recover, it depends on how long you have been B12 def and how much damage you have. Each is different, we all have such different symptoms , so what counts for one may not count for the other.

Kind regards,
Narre
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Postby olgawarren » Sat Nov 21, 2009 5:49 pm

Hi all,
Thank you for your replies and support. I am panicking because after 6 months (1mg hydroxy every three days) I got very slow improvement in my symptoms and I’ve read somewhere (don’t remember where now) that after 6 months that’s all that can recover. Being a mother of two young children (21 months and 4 years) I am willing to try anything there is on a market to try to improve/speed up recovery (private/abroad/anything). It is encouraging to read your posts that recovery is still possible after 6 months. My private doctor seems to be of opinion to try first high loading dosage of Methyl (5mg) daily plus folinic acid and only then go for IV. Like Andrea, I’ve read somewhere that dosage of 7mg daily is recommended, however, I’ll try 5mg subc first. Has anyone tried this protocol?
A bit of my history:
I have been misdiagnosed since 19 years old, after epidural in 2005 I’ve lost feeling in thoracic area of my spine, stabbing pain in the rest of my spine, difficulty walking and lots of neurological symptoms. In February this year I developed permanent raised temperature and couldn’t get up out of bed, so that’s when the doctors started suspecting I might have bone marrow cancer. In May this year I have diagnosed myself using the Internet and insisted on specific tests which showed I had PA all along.
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Postby anotherwithpa » Sat Nov 21, 2009 6:37 pm

The dutch guidelines imply it can take up to 2 years..have read in other research papers that the window of repair is only 3 months....there is no guarantee..hope you will find more recovery over time. Martyn is very positive about the infusions, perhaps its worth a try for you, seems to me more logical to infuse, flood the body with methyl, then keep up levels with jabs, but that is just me thinking, I would not know . Marre.
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Postby sallyannl » Sun Nov 22, 2009 11:43 am

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Postby Carolineanne » Sun Nov 22, 2009 6:43 pm

HI Olga,

See my posting under Diagnosis and Treatment - infusion Clinic,

Caroline
:D
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frequency of B12 treatment

Postby anotherwithpa » Mon Dec 07, 2009 4:55 pm

this clearly implies its up to the GP to decide how frequent and for how long a person has their B12 injections (it also clearly states coming to the surgery though for the jab), see:

http://www.cks.nhs.uk/anaemia_b12_and_f ... #313976003

Anaemia - vitamin B12 and folate deficiency - Management
View all prescribing information

What advice should I give to people about vitamin B12?

The dosage depends on the specific illness and how much the condition improves once treatment has started. When the condition has improved sufficiently, the dose will be reduced, although some people will require regular injections for the rest of their lives.
Advise the person that:

They will need to return to their health care professional for the intramuscular injections. The frequency of this will depend on the prescribed dose.

Their blood will need to be monitored regularly.

If they have cardiovascular disease, then their blood potassium levels in particular will need to be monitored at the start of treatment.

[ABPI Medicines Compendium, 2005]
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To much B12 harmfull..

Postby anotherwithpa » Mon Dec 07, 2009 5:49 pm

Anyone who gets a GP saying to much B12 is harmfull should print this (I know its 58 pages but well worth reading), see:

http://www.food.gov.uk/multimedia/pdfs/EVM0020P.pdf

(PS if a mod could please give this topic a sticky I would be grateful!).
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Postby JDee » Mon Dec 07, 2009 6:48 pm

Hi.

Had a quick flick through and thought it was quite interesting to see reference to methyl b12 back in 2002.

Maybe they could have shortened the sentence though!!

Jac

'Some studies have suggested that large doses of vitamin B12, particularly
methyl Cbl, may influence biological rhythms by shortening the length of the sleepwake cycle and improving the entrainment of the endogenous sleep-wake cycle to the environmental 24 hour rhythm, and thereby have benefit in the treatment of sleepwake disorders (Okawa et al 1990, Takahashi et al 1999, Mayer et al 1996 and references cited therein)'
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Postby sharnie » Fri Dec 11, 2009 10:28 am

Hi everyone

My doctor has agreed to trial monthly injections, in the short-term, based on symptoms. He is unable to prescribe it indefinitely as he explained it is not standard parctise and I shall be referred to a consultant for a second opinion some time in the new year.

Like a lot of people I am a long way from achieving a solution to my problems but this is a good start. It's also something I can rule out if things don't work out. It's taken me nine months to convince someone to let me try this so fingers crossed!

I would suggest to anyone who is suffering from recurring symptoms to see the doctor when you are well - it's the best time to be logical and factual. Sometimes you also need to see a different doctor....

The PAS is a wonderful support when times get tough - a big thank you to Pat, Andrea and Marre for caring so much and sharing their knowledge and experience.

I'll keep you all posted.
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Postby anotherwithpa » Fri Dec 11, 2009 11:20 am

Nice to read..thanks! Hope you will feel a lot better with monthly B12, Marre.
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Interesting

Postby Silvergirl » Mon Jan 04, 2010 10:27 am

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Postby kimks mom » Thu Oct 21, 2010 12:14 am

I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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b12

Postby gordon » Sun Feb 27, 2011 11:28 am

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