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Pernicious Anaemia Society
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Doctor has advised I stop self injecting

I have been diagnosed with PA, and found that the only thing that helped my energy levels has been self injecting every few days. When I told the doctor, he ordered a blood test and has since told me to stop self-injecting as my levels were 2000. Has anyone has this sort of experience? My symptoms are the same as before and I still feel a benefit from self-injecting.

19 Replies
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If it works for you why stop.

The NHS guidelines say no more testing after treatment has started, so why was he testing.

And you probably know more about B12 deficiency and treatment than he does.

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Thanks so much for your reply. That’s helpful!😊

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Hi Shazzarooni the article below shows there is no danger having high levels of B12.

stichtingb12tekort.nl/weten...

Do you know what your Folate level is?

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Thank you so much! I don’t know what my folate level is, but I have started taking folic acid regularly, so I’m assuming that’s related? On a steep learning curve with all this! Thanks again.

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Yes B12 and Folic acid work together to make red blood cells.

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I inject weekly ( 1mg ) it’s the only way can I keep well. I’m never tested , but my blood serum levels of B12 would certainly be off the scale . Keep injecting . You are feeling the benefits . You cannot overdose . Best wishes .

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Oh that’s good to know! Thanks so much for taking the time to tell me that. All the best!

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I am injecting daily.....have been doing so for two months. My tremors have greatly reduced since doing this & everybody around me, including my GzP has noticed a massive difference in me & my well being. My B12 blood test was technically in range at 285. You excrete out what your body doesnt need. Also the b12 blood test is notoriously unreliable!

If daily injections are helping you then no harm in it......

I do take a basic B complex with folate though. And eat bananas fairly regularly as theyre full of potassium. Just as a back up as am injecting daily. Am hoping that once my healing has progressed I will be able to reduce the frequency.

There is no scientific evidence to say that we should only have b12 injection 4 times a year....no one knows the rational behind this guideline (if there is one!) .

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Thanks so much for all that info! I’ve been eating bananas every day recently and was wondering why I was craving them! Appreciate your reply.

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Even 1 B12 injection will stay in your system at a high level for several days... so any high count after an injection should not be considered vaild. Per my dr ... after having read blood work done the day after an injection ...

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At least per THAT doctor... lol. Makes sense thought. Body hasn’t yet processed it he says. Not indication treatment should be stopped. False reading

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Ah ok! That makes sense. Thanks so much.

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Hi,

I've assumed you're in UK. If you're elsewhere some info below may not apply.

What level of B12 treatment are you getting from NHS?

Links below mention UK B12 treatment.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

People in UK with B12 deficiency with neuro symptoms are supposed to get B12 jabs every 2 months. If they don't have neuro symptoms, it's every 3 months.

When first diagnosed did you get loading injections from the GP? This is a series of B12 jabs close together to raise B12 levels quickly. If you didn't get loading jabs at start of treatment, perhaps GP would consider giving them now?

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). Book is up to date with UK b12 guidelines.

"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.

"Have been diagnosed with PA"

Have you considered joining and talking to PAS? Basic membership costs £20 for a year.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members in other countries.

Offers support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Health professionals can join PAS for free, perhaps your GP would be interested?

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

"When I told the doctor, he ordered a blood test and has since told me to stop self-injecting as my levels were 2000."

Did the GP explain why he thought having a B12 level of 2000 was a matter of concern?

Misconceptions about B12 deficiency

stichtingb12tekort.nl/weten... See Point 6.

Have you asked the GP what you should do if you if your symptoms return before your next NHS jab is due?

Symptoms Diary

Probably a good idea to keep a symptoms diary as evidence of when symptoms return/deteriorate in relation to date of jabs.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I am not medically trained.

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Thank you so much for all that. Yes I’m in the UK, and am prescribed injections every 10 weeks. I got loading injections to start with too. The GP didn’t explain why he thought the level of 2000 was a matter of concern. And also seemed to imply that any fatigue symptoms I had were not to do with PA as my reading is so high. He suggested that I should try and get more exercise to increase my stamina. This didn’t make sense to me as I was very active until exercise started making me very fatigued, which is why I went to the doctor in the first place and got my PA diagnosis quite a while ago. I think the symptoms diary is an excellent idea, and I will do that. Thank you for taking all that time to help me!

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Hi,

"When I told the doctor, he ordered a blood test "

BSH Cobalamin and Folate Guidelines (link in above post) mentions that retesting b12 levels is irrelevant after B12 treatment has started.

There is a useful summary of mainly UK b12 documents in third pinned post which I think is worth reading.

"He suggested that I should try and get more exercise to increase my stamina."

Might be worth talking to PAS about what GP said about exercise if you join.

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I have been SI daily for well over three years and have been improving throughout that time.

I know some people have successfully and safely been on daily jabs for decades.

By blood testing you once you are injecting your Dr is showing a lack of knowledge.

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Hi do try to increase your exercise, it does sound daft if ur fatigued, I have learned not to give into fatigue, it does increase your stamina at the same time as taking yr mind off ur symptoms.

It took me a long time to accept this, my pain can be horrendous, I can read, do exercise, games on my phone etc it’s unreal how u then stop feeling the pain as much, it is a long journey and a even bigger learning curve. You know more about your condition than any1 else ever will. Keep injecting B12, keep an eye on folate, ferritin, vit d. Don’t give up...

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My levels are always around 2000 and I self inject every month, still get some symptoms but feel better than I did when having it every 2 mths from my GP.

Best wishes

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My daughter's serum B12 levels were normal, but, when we had a Spectracell test, it showed that she was deficient. Spectracell tests whether B12 crosses the cell wall and it wasn't. All the Dr told me was that she needed to take methylated B12. So, I looked it up and found that it could be a methylation defect. An article recommended to run a 23andme DNA test (because it was the cheapest at the time) and upload the raw data to Genetic Genie to find out. Turned out that she does have the MTHFR defect, but also one that makes her sensitive to methyl groups. So, she takes a combo of methyl, adenosyl and hydroxy B12 in addition to methylated folate (don't take folic acid, it's not the same and high levels are toxic). She has other defects that depletes B12. We recently found a place that she can get a hydroxy B12 shot because the Dr dropped any further investigation into her condition. Despite all of that, she still has energy problems. I identified another defect called the TCN2. It codes for an enzyme that shuttles the B12 through the body. A defect can cause transcobalamin deficiency. This could be her problem. The only treatment is hydroxy B12 shots. It would be good to have your DNA tested to see if there are additional reasons for your B12 deficiency.

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