Anyone test positive for IF antibodies and still have GP who is reluctant on treatment?

[jstarkey]

Beginning of July I got a positive test. My Dr. started loading doses before the results came back and now my husband is giving me weekly injections. During my last appointment, Dr. wanted to check my levels. I have researched this enough to know that it was going to be meaningless. I requested that I stay on weekly injections, at least until my blood has a chance to FULLY cycle and regenerate new RBC (I said 120-180 days). I am also keeping a symptom log and see returning symptoms after 5 days, if not sooner. First sign is usually numb toes.

I wanted to see how many of you who have a positive result have problems getting enough B12 to treat your symptoms? Have most of you who have doctors who are not giving frequent doses gotten a (probably inaccurate) negative IF antibody result?

Just curious if I need to prepare a bit more in regards to getting what I need.

Thank you in advance,

Jen- I am in the US

[Sleepybunny]

Hi,

Thought these links may be of use

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone]

UK based but has members from around the world.

B12 Awareness (USA website)

b12awareness.org/

B12 Deficiency Info (UK website)

b12deficiency.info/

B12 books

"Could It Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies,

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Has several case studies.

[jstarkey in reply to Sleepybunny]

Thank you, I have read Martyn's book and most of what you listed is what I have used to research. I really wanted to know if people who are positive for IF antibodies are still dealing with doctors providing inadequate treatment....

[Gambit62 Administrator in reply to jstarkey]

injectable hydroxocobalamin (B12) is only licenced in the UK for use at intervals of 8 weeks (one of the vagaries of the licensing process is that it is reliant upon manufacturers to apply for licensing rather than a general review of safety etc.

Although GPs should be using professional judgement many do interpret the licensing rules as indicating that the product probably isn't safe for use more frequently which means that trying to get a GP to treat you more frequently is generally an uphill battle and there are many many people out there who end up taking treatment into their own hands as a result.

[jstarkey in reply to Gambit62]

Thank you, Gambit62. I have just been in awe of how difficult this is for people, it is extremely maddening that it all boils down to the fact that there is no money to be made on B12. Knowing this, I can see how no one is hyperactive on things like licensing, etc.

[topazrat]

Yep, I had problems. Positive I.F but 'normal' serum B12 (250). One Doc literally laughed at me and said that I didn't need ANY treatment. Another begrudgingly gave me one injection only, a third said that I could have one every three months, (still said no to loading doses) despite obvious and debilitating neuro symptoms.

I am now self injecting!

[jstarkey in reply to topazrat]

This is unbelievable. I will do the same if I encounter issues with the amount prescribed. I am convinced that this is the root of a bulk of issues I have suffered from for over 25 years...