Walking out of GP office with a referral to see a sleep specialist versus B12 levels and symptoms.

[Evan16]

Yes. It's the same questions:

Can any one explain or point to any information that would help me understand how an individual with PA but "high/normal" b12 levels has symptoms build between injections? Is there a difference between the amount of b12 in blood versus what is in your tissue?

Is it true that the official recommendation remains injections versus oral? Where can I find a legitimate source for that information?

Also are there any results from control studies done between placebo v actual treatment for PA symptoms?

My GP said that because my b12 is "fine" (~month or so after injection it was 800), I don't need injections anymore and to just take oral supplements and go see a sleep specialist. She completely ignored what I consider to be symptoms explained by PA: fatigue; chronic diarrhea; increasing food allergies/intolerance; tongue soreness; loss of sensation in finger tips.

Thanks in advance.

[wedgewood]

As you are a P.A. patient you need B12 injections FOR LIFE . Your b12 levels always need to be high . You need to have B12 injections often enough to keep symptoms at bay . The regularity of injections varies from patient to patient ( e.g I need a weekly injection). . Anything from daily to 3 monthly . it’s not known why this is so . But it’s why many P.A. patients have to resort to self-injecting to keep well . Pernicious Anaemia is very poorly researched .and understood. It’s not of great interest to doctors generally . Vitamins cannot be patented. .” Big Pharma “ is therefore not interested . No money in it …………….

I note that you are in the USA . I suggest that you include that information in the heading of your post , then fellow countrymen will notice and be able to give you better information for your particular situation in the USA

This forum is based in U.K. But i can see that your doctors have a similar degree of ignorance about P.A. as ours ,

Best wishes .( Sorry that i couldn’t answer your questions , but i didn’t want you to feel ignored )

P.S. Out founder , Martyn Hooper has written books about P,A. - ((Available on Amazon )

[Appleonceaday in reply to wedgewood]

Hi, I live in the US and have been diagnosed with CLL, and while the oncologist was checking out my blood work noticed that I had PA also (of course after the correct labs were done) I started with monthly b12 injections, my labs had been ok, however, my dr left, I had been seeing “whomever” in the cancer center in our town. I kept up with my injections , of course!! However I’ve not seen a dr since the end of last year. I want new hematologist, one because I was tired of not seeing anyone that really cared, as my CLL numbers are fine. My big problem, and it’s slightly complicated (!!) I’ve even been diagnosed with Peripheral Neuropathy from a Neurologist, but he can’t figure out what is causing it. I’m not diabetic. But the more ive read about PA, it talks about PN being one of problems. I JUST want to now why I have PN, im 68, have to use a cane or a rollator (walker with wheels). When I walk with without help of cane,I look like I have a huge loaded diaper on!! But of course I’m not incontinent. I don’t think I’ll ever be without help. It seems to be getting worse, my arms/hands/fingers are numb also. I’m so discouraged, frustrated. I was also diagnosed with COPD before they found out I had PA. I get so tired of going to so many different Drs. I truly think 95% of my issues come from PA. I’m hoping that I can find new Hematologist that will listen to my issues and understand where I’m coming from. Am I wrong? Or way off the course?!!!

[wedgewood in reply to Appleonceaday]

Just spotted your post . I had numb feet when it was discovered that i had P.A. My GP’s diagnosis was that they were “ idiopathic “and would not allow me more than one B12 injection every 3 months . I should really have been referred to a neurologist . In the end i was forced to self -inject . This improved the numbness , which eventually turned into a burning sensation , where it has stayed for the last 5 years. , so is now permanent . Could not cope with nerve pain killers as they made me hallucinate . So i’m now resigned to the burning sensation as being permanent . But it’s better than numbness . I suggest that you try self injection . it’s most fortunate that B12 is a vitamin that cannot be overdosed . You can get B12 Cynocobalamin from online Canadian pharmacies, which is the B12 of choice in USA I believe . I’m in U.K. where we use Hydroxocobalamin, which I get from German online pharmacies where it is not a prescription item . It is cheap to use . It is recommended to inject 1mg of B12 everyother day until no further improvement occurs . ( I now inject once a week )

I can send you information for self injection which i have gleaned from USA members if you so wish . Best wishes .

I did consult a Haematologist and he was hopeless -hadn’t a clue ! The most useful consultant was a gastroenterologist who told me that PA meant that i had no or low stomach acid ( Hypochlorhydria / Achlorhydria) because the Intrinsic Factor Antibodies destroy the parietal cells in the stomach which produce Stomach acid as well as the Intrinsic Factor , both of which are essential to the absorption of vitamin B12 . . This can inhibit the absorption of other vitamins and minerals which need stomach acid for absorption. So i now take a modest mineral and vitamin supplement .

[Evan16 in reply to wedgewood]

Really appreciative of your response, Wedgwood.... I was told when first diagnosed 9years ago it would be a life-long thing. Then I had to change physicians due to a move and she was fine with refilling my Rx based on the first doctor's recommendation. She then retired and I got another. I have never been particularly satisfied with our encounters and she has never even asked about the pernicious anemia; just lab tests that seem to dictate her decision making. I may not be good at self advocacy, but US doctors really take issue with patients who question their "authority". To get my Rx reinstated, I know I will need to be armed with scholarly information and not just complaints or anecdotes... I will be changing physicians in Jan as well.

Thanks for your insights!

[wedgewood in reply to Evan16]

If it proves impossible to get your injections re-instated , you may need to do what i was forced to , namely self-inject . It’s benefited my life no end . One cannot allow medical ignorance to prevent life-improving cheap injections . I can send you information if you like .

[Evan16 in reply to wedgewood]

I am in the US so it requires an Rx. I looked at some Canadian websites and the ones that seem legitimate also say by prescription...?? Is it possible to get the B12 anyway? My husband gives me injections so that part is not an issue.Right now I have 8 injections left of compounded methylcobalamin (this version was recommended by an integrative medical doctor when a couple months after my load injections, I was suffering from fatigue again. She said do them weekly!) That was 8 years ago now everything got changed by new doctors. Really happy to have come across this forum.

[wedgewood in reply to Evan16]

i know from US members of this forum that you can get B12 Cynocobalamin from legitimate Canadian online pharmacies without prescription . There are at least 2 German online pharmacies that will ship B12 (no prescription required in Germany) Hydroxocobalamin to the US . There is also a US. company that sells Cynocobalamin, Hydroxocobalamin and Methylcobalamin in single use ampoules .

I have tried all 3 types and found Hydroxocobalamin to be ideal both medically and financially .

[Sleepybunny]

Hi,

A few links that may be of interest....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I am not medically trained.

[Evan16 in reply to Sleepybunny]

THANK YOU!

[waveylines]

Your doctor should not be basing whether you need b12 jabs on the level of B12 blood test once diagnosed with PA the frequency of jabs is done on symptoms. I need to do mine twice daily! What your doctor has said shows sheer ignorance. Please do not stop your injections. You need them for life! Id change doctors if it were me. Dr Chandy also wrote a great book that is available for free from b12d.org or you can purchase it off Amazon. Knowledge is power!

[FlipperTD in reply to waveylines]

Scientist, not medic.

Once more, with feeling, 'Treat the patient, not the numbers!' It's far too easy to simply do another test and then slavishly misinterpret the result. Or as one of my old consultant surgeon colleagues would say, 'Listen to the patient telling you the diagnosis!' That's not always the answer but it's a good starting point.

There's still a lot we don't understand about PA. Anyone who doesn't believe that needs to stop and think...

[waveylines in reply to FlipperTD]

Thanks FlipperTD. Refreshing. 😊 Never mind that the cut off point on the blood test is far far to low. I had symptoms when my b12 was in the low 400s by the time I was in the low 200s could barely walk, incontinence blurred vision, postural tremors all over my body extreme fatigue etc BUT my B12 was still "in range" Never mind there was another big red flag, that I have extensive vitiligo (strong b12 deficiency link) but the GP despite it being there on the screen still was totally thrown when I mentioned the link....then local protocol wouldn't let her treat until seen by neurologist. Another 6 months wait. However I self treated & didnt wait for the NHS to get its act together. GP knew I was & looked very relieved. Its all bonkers & frankly a disgrace to have a system that waits until there is extensive damage which may never fully repair. And there appears to be no consequence for such poor treatment for the NHS -so no incentive to improve! Sorry rant over!! Am very grateful to this site who did help me!

[Evan16 in reply to waveylines]

Thank you for seeing things from my perspective. I felt so foolish leaving the office but knowing it wasn't right. This forum has really help me understand.

[waveylines]

Dont feel foolish its not your fault so dont blame yourself!. The medic you have is an ignorant idiot who will cause harm tbh so Id find someone else who does understand it. Here in the uk it isnt any better and many are having to buy and self administer their own treatment. Its a disgrace. I had to argue my case and I know the GP was totally astonished at my improvement on my b12 regime and then having seen it for herself backed me totally.....she has now retired so dont have her anymore.