Pernicious Anaemia Society

Dr wants me to return to 3 monthly injections 🙈

I have been on 6 weekly hydro injections for about 3 years from Dr. Just received a letter telling me dr wants me to go back to 3 monthly and to come in for review. The truth is 6 weekly is still not sufficient and for about 1 year I have SI at least once a week and never felt better as I control when I need it. So do i tell dr everything I'm doing.. ..including SI....also have patches, sprays and solubles too and argue to keep me on 6 weekly ... or maybe not mention SI... just the other supplements. Or just accept to go to 3 monthly without question and carry on what I'm doing anyway? It just annoys me so much that dr can just reduce your medication for no reason! Has anyone else faced this dilemma? Advice welcome please. Thank you

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The one thing I think you must do is find out your doctor's reason for wanting to make that change.

A doctor is supposed to help us to become (or remain) healthy. I'd be very interested if he can claim that the change would be to your benefit. Whether or not you believe any reason given, I think he'd be struggling to come up with any plausible basis. After all, most of us probably suspect the rationale is based on saving money rather than bettering your health.

I'd love to see everyone tell their doctors what they have to do. Trouble is, I do recognise that this might not always be to the benefit of the individual patients.

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Also - isn't it rather arse about face to make the decision to reduce before the review?

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yes, my tongue is bitten down to the 'quick'.............lol? yes, you're right to try and stay on the 'right' side of the GP. I didn't and i PAID A very high price.

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If you want to stay with the Dr probably best to disclose your exact treatment regime. The Nhs Gp's seem to be clearing the decks for privatisation. All indicators I have seen confirm that. You can try a brief written presentation posted to your records as well as the following consultation hoping to get the treatment regime which would be best for the NHS system and your prospective health benefits. At least you know the most suitable treatment. Good luck.

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Dulaigh. it's frightening to have one's own thoughts echoed back to them on here?????

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i saw a GP in November and requested a blood test because I suspected I was suffering from PA, she agreed.

I saw another the following week who prescribed the six loading doses of hydro and Vit D. (B12 138, Vit D 46) I have self injected from the onset.

Ten days after the sixth injection I saw a third GP begging to return to the x3 weekly regime. I have neuro symptoms. I was eventually prescribed 10 more ampoules after much debate. I also requested a letter to carry some when I travel to India later this week. I was told that I would not need to. (I'm on holiday for over 3 weeks)

Thankfully through this forum I have learned that I need a good multivitamin & folic acid supplements to maximise the benefit from the injections & I have sourced my own supply of hydro etc to continue self injecting while I'm away.

I have made an appointment early in Feb. To see the GP I originally saw, she as known me for years although has barely had cause to see me. I intend to tell her my treatment plan. I know I will be taking the smallest possible dose I can manage, but I might still need to inject x3 per week!

I'm an intelligent & responsible woman (for most part) Doctors need to know how to treat B12 deficiency from patients, since the third one a saw was reluctant to even abide by the BNF recommendations. I'll accept the consequences of my honesty. Fingers crossed.

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My last discussion with my GP was over a response from the Hematologist who wanted me to stop any B1 injections for 6 months so a new set to tests could be done to prove I actually have a B12 deficiency. Not wishing to go back to the status quo ante I disagreed violently. But I doubt he passed on my comments and recommendations to the consultant.

I am due to see the GP this Thursday afternoon for a review of a recent 'Annual' blood letting debacle - it took 3 of them and 5 punctures to get a sample.

I don't have a sore tongue anymore, nor mouth sores, my taste is returning, no electric shock pains in hands and feet, toes no longer feel like felt stumps, better walking and fingers much more supple and responsive. But I am injecting weekly and taking a daily folic acid dose. It would be good to be able to discuss all this with the GP but it probably wouldn't do much good as he has already admitted he doesn't know much about B12 deficiency other than he now knows the license terms for hydroxocobalamin and the constraints on prescribing.

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