Maybe pernicious anemia

[Janeylou69]

Hi I've been having lots of health problems, low b12, they think I have pernicious anemia but it was never confirmed, I had colonscopy and gastrocopy, but they didn't find anything really wrong, I have low iron stores, I've lost just under 3 stone since march /April 2018 unintentionally, I've not been well since then, I've had loads of different tests but nothing has been found, but I'm having other weird symptoms like my muscles itch and are very weak, I'm very drained all the time, very tired even just doing very little, my body feels very tender all over, I'm thinking the worst that it's something nasty but doctors are saying that they haven't found anything like that, I had two upper abdominal ultrasound scans and on the second time they found very small gallstones, fatty pancreas and a slightly swollen spleen, I have seen so many doctors on my surgery but no one knows what's wrong with me, the last doctor I saw has referred me to rheumatology but not one doctor has offered me a body scan, I have 3 children and I'm scared Coz I don't know what to do x

[clivealive Forum Support]

Hi Janeylou69

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the B.N.F. guidelines below depending on which category your doctor thinks you fall in with your "low B12".

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

Indications and dose

For HYDROXOCOBALAMIN

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

Do you know whether your Folate level was ever tested?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Janeylou69 in reply to clivealive]

Hi Clivealive thanks for your response, I had loading doses back in June and I'm now on 1 injection every 3 months which hasnt really made any difference, I mentioned this to my doctors about me needing more injections but they say that what I'm getting is adequate enough for me which I don't think it is enough, I'm really thinking about changing doctors coz no one is listening to me at all, I'm the one feeling all these symptoms but my doctor makes out that I'm fine, that it's physchological which I'm really depressed about thanks x

[Hanneke12 in reply to Janeylou69]

Hearing you, been there for many years. Hang in there!

I hope you found a way to get B12-treatment?

[Janeylou69 in reply to Hanneke12]

Hi hanneke12 no still 3 monthly they won't change it and now I've seen rheumatology and they think I have fibromalgia, I just can't get a proper diagnosis, I've had so many tests done, my symptoms have got worse, headaches are worse, I'm really depressed because I feel really ill thanks for your reply and hope you get there as well x

[Hanneke12 in reply to Janeylou69]

I've read that fibromyalgia can actually be a symptom of B12D...

Did you try high dose sublinguals? If they don't work, please consider self-injecting.

[Janeylou69 in reply to Hanneke12]

Thanks that's very helpful because I never knew that, the 3 monthly injections don't do anything for me, how do I go about self injecting x

[Hanneke12 in reply to Janeylou69]

Read through these posts: healthunlocked.com/search/p.... This is a particularly good one: healthunlocked.com/pasoc/po...

(You can buy the ampoules online, e.g. through Amazon. I get the needles at my local pharmacy.) Good luck!

[Janeylou69 in reply to Hanneke12]

Thanks very much I will look into that x