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Self injecting advice

psawant profile image
26 Replies

I live in Charlotte, NC, USA. My GP asked to stop the injections after one month of loading doses when she tested for the serum b12 test which was of course above 2000. I want to know being in USA how can I order my b12 and keep self injecting myself. I am D3 deficient as well. Which form of b12 will be the best? I was being treated with cynocobalamine 1 mg thrice a week. Please help. How should I proceed with the treatment if my neurological and psychiatric symptoms are still present and GP is stopping the B12 injections.

My b12 levels were below 150 , they said they couldn’t measure below 150 level.

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psawant
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26 Replies
fbirder profile image
fbirder

You need to find a new GP. Preferably one that isn't quite as stupid.

Of course your B12 levels were high. You'd just had 14 years worth of B12 squirted into your body. The problem is that it won't stay that high (unless you were deficient because of a lack of B12 in your diet).

Would your idiot doctor suggest that a diabetic stop their insulin shots because their blood sugar was normal again?

Print this paper out - onlinelibrary.wiley.com/doi... - and highlight the bit on p. 501 that says -

No

further testing for cobalamin levels is required.

And, on the same page -

lifelong therapy with cobalamin

This was written by the biggest brains in British blood. They know what they are talking about.

As for what type of B12. Cyanocobalamin is the best option. It works just as well as any other and, in the USA, it's much easier to source.

psawant profile image
psawant in reply to fbirder

Okay fbirder, thank you for the response, is there a way i can order my own b12 shots here in USA

psawant profile image
psawant

How should be the further doses?

Same as it was before? Every other day 1 mg cynocobalamine?

psawant profile image
psawant

I will show her the documents

Gambit62 profile image
Gambit62Administrator

people do source B12 for themselves. Importing can be tricky - some source from Canada but that isn't always straightforward to do on-line.

Some use slimming clinics - ie sources that are not defined as being for medical use.

fbirder is right that your doctor is failing in their duty to provide adequate standard of care and as a consumer you are well within your rights to sack them and look for a new doctor on those grounds. it might be more practical to pointout the details in the BCSH standards. They are referenced by the AAFP

aafp.org/afp/2017/0915/p384...

I am not based in the US

psawant profile image
psawant

Ohh Okay , Thank you Gambit. I will show her those guidelines, Is there any other way I can assure that I do not have Absorption problem? Is there some medical test which can confirm the absorption problem, because if I don’t have the absorption issue I can Supplement with Higher doses maybe till the time I manage to get my jabs.

BethCam profile image
BethCam

I dont know how it compares to what is at the doctor/pharmacy, cost, safety or for self injecting, but I just came across a local groupon.com offer for $55 for 5 b12 injections at a local spa. With insurance my b12 + injections are costing me $22 to 33 depending on where i get it so i may be looking further into this.

psawant profile image
psawant

Can I buy it in other country and carry it with me with prescription?

fbirder profile image
fbirder in reply to psawant

Unfortunately not.

US drugs companies like to maintain a stranglehold on importation of drugs. Here are the rules for US citizens -

fda.gov/industry/import-bas...

psawant profile image
psawant

That will be great beginner1

BethCam profile image
BethCam

By the way, I am in South Carolina.

psawant profile image
psawant in reply to BethCam

I live in Charlotte bethcam

Sleepybunny profile image
Sleepybunny

Hi,

Just curious...do you have a confirmed diagnosis of PA (Pernicious Anaemia) or have you been diagnosed with B12 deficiency of unknown cause?

If you have a PA diagnosis or if you suspect you have PA, you may find some useful info on PAS website (Pernicious Anaemia Society).

PAS (Pernicious Anaemia Society)

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

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

There are many possible causes of B12 deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA, Coeliac disease (spelt Celiac in US), H Pylori infection, fish tapeworm infection which can all lead to B12 deficiency.

Are you eating B12 rich foods eg meat, fish, eggs, dairy , foods fortified with B12?

A vegan or vegetarian diet can be a risk factor for developing B12 deficiency.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

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

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

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

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

I am not medically trained.

psawant profile image
psawant in reply to Sleepybunny

I was told I don’t have Anemia from my GP. And deficiency may be due to vegan diet for past 7 months.

TariTraveller profile image
TariTraveller

Hello, it is unfortunate your GP stopped your injections. I also live in the USA and a few months ago my b12 levels were high (I’ve been getting injections every 3 months for 20 years). My doctor did not stop my injections, however asked that we monitor my levels as I may need them less frequently. As some others have responded here you may want to get a new GP. I live in the Washington, D.C. area and I know that pain management/weight management clinics provide their patients with B12 injections. So, I suggest trying a local pain/weight management clinic, their pricing is reasonable and you may be able to order a 3-6 month supply.

Best wishes and hope you get some relief soon.

psawant profile image
psawant

Thank you so much TariTraveler. Your response is very helpful to me.

Themaid profile image
Themaid

I also live in the US, in California, and I also have a doctor who is quite ignorant about my P.A. I have taken my treatment into my own hands. I suggest that you find a Functional Medicine Doctor as they are much more enlightened. That’s what I did and it was such a good decision since my functional medicine doctor also helps me to manage some of the other crummy things that go along with P.A. Some of their testing, though not all, can be covered by insurance. You can find one locally by searching on their data base at ifm.org (the Institute for Functional Medicine) Also, high end pharmacies such as Pharmaca and some health food stores provide weekly B12 shots for vegans as do Naturopathic clinics. I know that this whole thing can be quite a lonely and frustrating journey especially while navigating through brain fog and fatigue. I wish you the best.

psawant profile image
psawant in reply to Themaid

Thank you very much Themaid,

I will surely do that, Thanks for the information.

How long you have been diagnosed and how do you feel now?

psawant profile image
psawant in reply to Themaid

I have found 16 functional medical practitioners in the 10 miles radius. Are they specialized in treating b12 deficiency and PA. And will they continue my treatment. What should i do next Themaid.

Themaid profile image
Themaid

Most functional med doctors offer a free consultation so I’d use that to ask them how much they know and what they plan to do as far as treatment. Do your homework. Read Martyn Hooper and Sally Pachalok’s books. Ask questions on this wonderful forum. I was diagnosed in March after YEARS of confusing and debilitating neurological symptoms. I was told that I was menopausal, had food allergies, exercised too much, exercised not enough, had vitamin deficiencies, electrolytic imbalances, social anxiety, fibromyalgia, PTSD, seasonal affective disorder, chronic fatigue syndrome, etc. I was put on anti-depressants and dismissed as a complainer. My B12 levels were never once discussed. I even saw a hypnotist because I thought that it might actually be all in my mind! Pernicious Anemia was discovered when I was diagnosed with thrombocytopenia (enlarged platelets). But even then I was only prescribed one B12 shot per month which actually made me feel worse. I started my loading doses in November and for the first time in YEARS I am actually starting to feel normal again. Stay on it. You really and truly have to be your own advocate. Good luck!!!!

psawant profile image
psawant in reply to Themaid

Thank you very much for the elaborated response Themaid. I am very thankful to all you guys helping me out in the worst time of my life. I will surely give back all the help to this forum and all the other sufferers

ndodge profile image
ndodge

Hi! I live in Portland, Oregon and go to a naturopathic doctor. I think a naturopath might be your best bet. She writes me a prescription which I fill at a compounding pharmacy. I need to get a B12 injection almost every day- 5x/week. My husband gives them to me. It costs me $55.00 for a whole months supply. I get syringes and needles from Amazon.

Hope this helps!

psawant profile image
psawant in reply to ndodge

Thank you very much for the reply ndodge, I will surely try to contact naturopath

ndodge profile image
ndodge

You are very welcome! I believe they are also called functional doctors, depending upon where one lives. I forgot to say that I am prescribed methylcobalamin.🙂

Sadie97 profile image
Sadie97

Were you diagnosed with P.A.? If so, docs in USA know your levels will be in the thousands. My doctor told me this. Mine never are for some odd reason.

psawant profile image
psawant in reply to Sadie97

I am not diagnosed with Anemia( thats what my nurse told me). But if I have PA how would my levels be in thousands?

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