Letter to doctors no hope :( - Pernicious Anaemi...

Pernicious Anaemia Society

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Letter to doctors no hope :(

Padeficiant12 profile image
8 Replies

I wrote a letter and hand delivered on Tuesday, today i received a phone call, from the practice manager, i spoke with her and she basically said that because my levels are within range, i wont get my injections back! Shes made an appointment with the nurse practitioner tomorrow but i dont hold any hope! My levels were 1,000 when they checked my levels 1 month after last injection, so injections were stopped, 5 months ago levels were 351, then this month they are 217, they are dropping, the range they use is 120-900 so im guessing i will have to wait until my levels are that low, i will be in bed permanently by then, im so bad at the moment. No one seems to understand that your not supposed to have levels checked while on injections and that your symptoms tell you whats going on, its clearly not diet related as i stick to a healthy diet due to pre diabetes. I feel like giving up :(

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Padeficiant12 profile image
Padeficiant12
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8 Replies
Gambit62 profile image
Gambit62Administrator

Padeficiant12 - suggest that you contact the PAS directly and explain the situation to them. They may be able to contact the practice on your behalf and explain things to them.

pernicious-anaemia-society....

you may need to join

Padeficiant12 profile image
Padeficiant12 in reply toGambit62

I will have a look thankyou

boru profile image
boru

This page is to leading clinic in world for treating b12 deficiency- if it shows up in Dutch just translate. If neurological problems they recommend treatment weekly for 2 years : b12-institute.nl/behandelin...

Some people don’t put up with garbage they deal with from incompetent doctor and order b12 injections from Germany, pills or sprays that are pushed on you will not work. Mycare.de

Nurse YouTube quite good with learning how to inject. This website also good for information.

b12deficiency.info

Remember dont only focus on only b12 - there’s quite a supporting cast: folate, iron, bcomplex, copper, zinc, vitamin c, vitamin a , vitamin e......

margareta12321 profile image
margareta12321

I gave up on jobsworth GPs quite some time ago after being left upset and belittled when presenting factual evidence to them.I self inject and now feel,for the first time in years, back to normal.

Padeficiant12 profile image
Padeficiant12 in reply tomargareta12321

I am thinking about it, i cant see thats im going too get any where with my doctor.

Tldl profile image
Tldl

I am so sorry! I was just diagnosed and was told I would have injections the rest of my life regardless of lab results. They will just monitor to make sure my dosage is good. Guess I am glad my oncologist has this plan!

Padeficiant12 profile image
Padeficiant12 in reply toTldl

Your very lucky , i wish i could get my gp on side

Wowo23 profile image
Wowo23

I'm so sorry and understand your frustration. Their manner of treating you and the range they go by is ridiculous. I believe anything under 300 is deficient. I self inject now(twice weekly) but when I was in clinic, they wanted to test my levels. I told them I'd come right back after they draw blood, but she said it won't hit that fast and gave me the injection. My b12 was 1,997(my original was 93). They tried to stop my injections. I just laughed at them. I was lucky because I had 2 oncologist that were looking out for me and told my primary no way and to give me whatever I needed. If you can't get thru to your medical team, I'd change docs. Best of luck

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