Been to my Drs this morning after she withdrew my 12 weekly injections to trial oral B12. My last injection was 13th September. I Tested positive for parietal antibodies back in February but negative for IF. At that time my B12 was 102ng/l
I suffered with hair loss, extreme tiredness, poor digestion which all have greatly improved whilst on B12 injections but only last say eight to ten weeks then I start to feel not right again. Hair is growing back and have loads of new growth, toilet I will go every day until symptoms reside and then the tiredness kicks in.
After going to my drs in early September to ask for an increase in injections to maybe 8-10 weeks rather than 12 as my symptoms would return they withdrew them to trial oral B12. Luckily had my last injection 13th September.
So go along with it and here I am again, starting to feel tired, going two to three days before toilet again so I go see the dr again in hope I get my injections reinstated as obviously taking oral B12 every day (after my last injection) doesn’t seem to be working.
Now she is saying she thinks I have CFS although everything is improving on injections it’s just not lasting the twelve weeks! Only around eight to ten. I am not vegan so it is not dietary related
Am i going mad!?! It should I just demand to see another dr in hope someone will listen
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joleen19832
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oral B12 isn't currently licensed as a treatment for PA.
If your GP is taking part in a trial then medical ethics mean that they must ensure that their patients have given informed consent before the take part in a trial. You should point this out to your GP, probably in writing and copying in the practice administrator.
You could also point out that the national guidelines were recently changed to say that B12 injections should be administered every 2-3 months in cases where there is no neurological involvement (remains 2 months for neurological involvement).
Are you close to any of the PAS support groups? They can be a useful source of info on helpful doctors
In PAS library section is a leaflet/article "An Update for Medical Professionals: Diagnosis and Treatment " which some forum members have passed on to their GPs. It outlines how PA is diagnosed in UK and recommended treatment.
Blog post about how PAS has supported people seeking PA diagnosis.
Is your GP aware that it is possible to have Antibody Negative PA?
This is where a person has a negative result in IFA test but still has PA. Might be worth passing info to GP
If you ring PAS, I'm sure they could pass on info about Antibody Negative PA. More about Antibody Negative PA in BSH Cobalamin guidelines and Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency". Might be worth passing info to GP.
My personal opinion (I am not a medic) is that ME/CFS is a real neurological illness but many people diagnosed with it actually have some other condition eg PA, with similar symptoms. I think ME/CFS is sometimes diagnosed when doctors are either unable or unwilling to carry on looking for answers.
Help for GPs
1) Section on PAS website for health professionals. Does your GP know she can join PAS for free as an associate member?
2) I believe PAS has access to a GP who understands PA. It may be possible for your GP to talk to that GP.
3) I gave my GPs a copy of "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Support
"hair loss, extreme tiredness, poor digestion which all have greatly improved whilst on B12 injections"
1) Have you considered keeping a symptoms diary which charts how symptoms improve then eventually deteriorate after an injection? This could be useful evidence.
2) Do you have anyone supportive who can go with you to next appointment and vouch for how symptoms improved while on injections and how they have deteriorated since changing to oral treatment. Even better if person has read up about B12 deficiency/PA.
GPs are sometimes kinder, in my opinion, when a witness is present.
3) Have you been referred to any of the following?
Neurologist...if you have neuro symptoms
Gastro-enterologist....for gut issues, gastro specialist may be able to pick up signs of gut damage from PA, Coeliac, H Pylori infection etc.
Haematologist
NICE CKS link at top of page recommends that GPs should contact a haematologist if a person has B12 deficiency with neuro symptoms. Did you have any neuro symptoms when first diagnosed or that have developed after diagnosis?
I used to request referrals in a brief, polite letter to GP along with evidence eg symptoms, extracts from UK b12 articles that supported request.
Sadly lack of understanding of B12 deficiency can exist amongst specialist doctors as well as GPs.
Second opinions
1) HDA Patient Care Trust use a network of UK specialist doctors who can give people second opinions about diagnosis and treatment. Appointments are free. Might be worth contacting them, they are quick to respond to enquiries. If they can help then full medical history will probably be needed.
HDA patient care trust tel 0207 935 8366
2) Are you in a position to see a private specialist eg haematologist/neurologist/gastro-enterologist for a second opinion on possibility of PA? Although going private is no guarantee of better treatment.
You had excellent advice with so many valuable links posted for you in your post of two months ago. Click onto your username and you can find the Replies to your last post 😊
Some of your symptoms could also be thyroid related - have you been correctly tested ?
That's hard for you Joleen. I initially had 12 week injections but discussed my symptoms with my Dr and she said I could inject anything from 8 to 12 weeks, so for now I opt for 10 weekly. I also buy oral VitB12 tablets and I am fully aware that I will absorb very little. Anyway I buy the tablets as one thousand and take four in the morning and four in the evening. I have this thought that the oral ones, even if I absorb a little will keep my stores up. I also take folic acid as prescribed every second day. Compared to a year ago, I feel so much better and not having to focus on PA for every symptom I have . I still have have bad days, gastric issues at times but, I am ok. For you, and everyone of course, my view is that Injections are vital....tablets are supplementary and work for me as far as I know anyway. Please let us know how you get on, best wishes x
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Newly diagnosed PA
Please can I have some advice - as I am struggling with the health professionals
Looking for some advice please
