Doctor withdrawing treatment

[Katiea100]

I have been receiving injections for the last year after finding out i was deficient in b12. I have them every 8 weeks at the advice of a private haematologist because I struggled to function on every 12 weeks. I tested negative for crohns and caeliac disease and tested negative for the intrinsic factor antibodies. I went to the dr for my injection 4 weeks ago and he said he wasn't going to treat me anymore because my b12 levels were within range at my last blood test in June, they were at 691. I have never been given the cause of my deficiency, so put a complaint in explaining that I was worried the impact it would have on my health etc and because they didn't know what caused the deficiency in the first place but they still refused. I have just had an active b12 test done privately and my levels are within range, however my serum levels are now at 492. I also gave in and let my doctor test my levels this week, whereas I initially refused and they have dropped again to 420. Should i expect levels to go up instead of down after injections? As I had my last injection in September but levels did not rise after it. This has now happened a few times where levels have gone down after injections, although they are in range, I'm just worried about what will happen if I cannot have the injections anymore. Would this support a diagnosis of PA? Even though I am negative for the antibodies? Any advice would be gratefully received. My doctor today again refused to reinstate the injections and suggested buy some tablets over the counter instead, even though I highlighted to him that he still doesn't even know the cause of the original deficiency. I am worried about self injecting or taking any other treatments myself until I know for sure that I have exhausted all complaint avenues with my dr, as if he asked for more tests I would want the results to be accurate Thank you

[clivealive Forum Support]

Hi Katiea100 sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Can you see yourself among any of the above people?

Have you had your Folate level tested recently?

I am not a medically trained person but have had P.A. (a form of B12 deficiency) for over 46 years.

I wish you well

[Katiea100 in reply to clivealive]

Thanks for your reply, it would be no to all of the above. I am 35 and the issue came out of the blue. When it was first discovered i was also told i was deficicent in folic acid, vitamin d and iron too. But after a few months of those tablets I was back in range. I had my iron and folic acid tested this week too. My iron was at 41 and I cannot remember the folic acid, will need to check when home. They were both in range but I think the folic acid was definitely at the lower end of the scale.

[Katiea100 in reply to Katiea100]

Folate was 4.3 clivealive (range was 2.5 - 9999.0

[Gambit62 Administrator]

after an injection your B12 levels will be off the scale and they will then drop. The fact that you have an absorption problem means that the mechanism that a normal person uses to store and release B12 from their liver is also broken so all you have is the levels in your blood until they gradually drop below normal range. This can take a long time but it most definitely doesn't mean that you aren't deficient and don't need another injection until it falls into the normal range.

it isn't that your levels are rising with treatment it is that the levels are being measured at different time intervals after your treatment with the result that the amount of B12 that has been removed by your kidneys (the biggest factor in the drop) is different each time.

having injections introduces a factor that means that the normal range of serum B12 is no longer a valid way of assessing your B12 status. it measures the amount in your blood but doesn't tell you what is happening at the cell level. Some people react to high levels of B12 in their blood by trying to shut down the mechanism that allows your B12 to pass from your blood to your cells leaving you with a lot in your blood but very little in your cells - though the most effective way of treating it is to keep levels high.

In trying to get through to your GP:

how did they respond to your private haematologist - is there any mileage in seeing the haematologist again and getting them to write and explain things to your GP?

have you tried pointing your GP at the area of the PAS website aimed at helping medical professionals to improve the standards of care for patients with PA and B12 absorption problems

pernicious-anaemia-society....

have you drawn your GPs attention to the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies (which they can access through the BNF but you can also access here

onlinelibrary.wiley.com/doi...

key things would appear to be

a) the limitations of the IFA test which produces false negatives 40-60% of the time so is a long way from proving you don't have PA

b) Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response

c) continuous testing of serum B12 after treatment started isn't recommended as a method of treating B12 absorption problems

[Katiea100 in reply to Gambit62]

Thank you for your reply. I have made an appointment to go back to the haematologist next week in the hope that he can explain things to my doctor. It is money I don't really want to spend out at the moment, almost £200, but I don't see any other way to get help. When he originally wrote to my GP explaining I would need injections every 2 months because my symptoms were still so bad after a good few months of injections every 3 months, he also said that every 6 months I could have 2 weeks loading injections as a booster and my GP accepted this. But then just stopped my treatment without warning.

My first complaint letter to my GP was 3 pages long and included info on the NICE and other guidelines. I also quoted parts about the IF test being unreliable and also the point that once treatment had started there should not be a need to keep testing my levels.

The second letter I again asked him to confirm what had caused my deficiency and I included the 'treatment is for life' and 'update for medical professionals' factsheets from the PA society website.

I should also add that before seeing the haematologist I saw a gastroenterologist and had a colonoscopy and MRI and both results were normal.

I'm just so baffled that a doctor is unable to find the cause of an issue but will withdraw treatment anyway because he is concerned my levels will get too high. I have it in writing from a doctor I spoke to at St Thomas's to say high levels cannot cause harm but again my GP will not listen.

[Gambit62 Administrator in reply to Katiea100]

It does sound as if the private haemo is probably your best bet at the moment. May be you could ask him to also include the fact that high levels of B12 are not toxic. I wouldn't quite agree with 'cannot cause harm' as some people do respond to high levels of B12 in serum in a way that tries to stop B12 getting through to cells. Unfortunately this is inevitable if you are being treated for an absorption problem with injections and even more fortunately the most effective treatment seems to be to keep B12 levels very high so that enough trickles into the cells past the reaction.

I'd be inclined to draw this distinction as there is a quite a strong movement to recognise that high serum B12 levels can be a useful diagnostic tool for identifying some liver and kidney problems which result in raised B12 levels and can also lead to symptoms of B12 deficiency because they cause this reaction. So not quite as simple as 'won't cause any harm' but most definitely true that there is no known toxicity from B12 despite it's use for decades and its use in treatment of cyanide poisoning at much, much higher doses than those used to treat absorption problems.

The other avenue you could explore is actually speaking to (and joining) the PAS proper, though it sounds as if your GP is more likely to take note of the haemo.

pernicious-anaemia-society....

pernicious-anaemia-society....

[Katiea100]

Thank you, that is definitely helpful regarding the liver/kidney situation and I will ask if the haematologist can explain this to my GP. I did have my liver function tested when my treatment first started and all was normal.

I recently became a member of the PA society, I spoke with Martyn who was very helpful. It was him who suggested I print off the factsheets for my GP. He also mentioned the b12 spray which will be helpful. At the moment I would like to try and resolve the situation with my GP first.

I have asked for his formal final response so that I can escalate it to somewhere else

[Wowo23]

Hi Katie 100. I'm so sorry you're going thru this. It happened to me at first too. I did test positive for high instrinic factor, anemia, high MCV and MTHFR gene mutation tho. I did daily shots at first then weekly. Once my b12 leveled out, my primary wanted to change it to once a month. I didn't know anything about it at the time and didn't think much about it. Thankfully, I was also seeing an orthopaedic oncologist in SF who was also monitoring all my labs and she said No Way. She said the level now is only being maintained because of the schedule of injections. Once I told my primary this, she finally agreed. Sometimes I think if I didn't have a specialist paying attention, who knows where i'd be physcally and mentally. It's so important to find out what caused this in the first place. Like you, I'd want to know what caused it, could it drop way down again and would also want my levels monitored to make sure they don't bottom out on you. What I've read is 400 is still ok, but you really don't want to get much below 200. Good luck and I pray you find someone to get to the bottom of this.

[Katiea100 in reply to Wowo23]

Thank you for taking the time to reply! I am keeping everything crossed that the haematologist can help me because he was very helpful before. I am looking to change GP now as I think that is going to be the only way. At the start of this year my levels had dropped to under 300 and I felt so ill, I do not want to get back to that stage. So will continue to push forward for answers!