New doctor - never seen him - i only see the nurse - today was the second time of seeing her.

[xeena]

Hi there can anyone please tell me - does pernicious anemia heal itself as i have just joined a new surgery (cannot see a doctor) only the nurse and she assures me that i do not have PA - yet i was diagnosed with it in June 2015?? She gave me a script for Vitamin D3 - l,000 unit per tablet - 3 tablets a day (which she told me i must buy myself in future) and i was put on amlodipine 5mg once a day for cholesterol and they are giving me really bad headaches and making my feet and ankles swell which i told her and she said to carry on taking them - i said but i only have one kidney that is at stage 3b - she told me my one kidney is okay - they will not give me any medication for my COPD and Asthma and other medications that i have been on for a good few years - any guidance appreciated - thankyou.

[Marz]

You could ask for copies of all your blood test results with ranges - they are legally yours - so you can see the results confirming you have PA back in 2015. Always request copies of your tests so you can monitor your health and see what has been missed.

I think the Amlodopine is for blood pressure and not for cholesterol - so do you have blood pressure issues ? Swollen ankles can be a sign of lowered metabolism and/or circulation issues.

What was your VitD result ? There are important co-factors to be taken with VitD - Magnesium and VitK2-MK7 - are you taking these ?

Have you been correctly tested for your Thyroid ? Some of your issues can be connected to low thyroid hormones and sadly the testing is usually inadequate and the understanding of results even worse ... Read up on the link below and look at the symptoms of being Hypo ...

thyroiduk.org/tuk/about_the...

[xeena in reply to Marz]

Hi Marz - i have looked at thyroiduk.org/tuk/about_the symptoms and i was amazed to find that i do indeed have more than my fair share, i did have a few tests done at Genova in 2011 and Lynn Mynott interpreted the results for me - i had adrenal exhaustion but my doctors all ignored and still do - i have only one adrenal gland - i will look through my medical records to see if there is an entry from the doctor about her diagnosis of pernicious anemia. Keep well and thankyou.

[Marz in reply to xeena]

Hope all goes well for you. Maybe time for some more Thyroid checks ! -

[clivealive Forum Support]

Hi xeena can you try and get hold of your medical notes from your "old" doctor who gave you the diagnosis of P.A.

NO! - Pernicious means deadly - fatal - it doesn't heal itself and can only be treated with Vitamin B12 so that it doesn't kill you - you "new" nurse is wrong.

Are you self injecting?

I am not medically trained but have had P.A. for 46 years.

I wish you well

[xeena in reply to clivealive]

Hi Clivealive - i have just had a phone call from the doctors as i asked to see a doctor - no i cannot and they have left me out a script for my Copd and Asthma medication - i asked about co-factors and was told i did not need them and yes the nurse was the one who done the script. - I do have B12 and i will just have to brave it and inject myself - i do have subcut needles so i will watch the video on you tube and just pray. Thank you so much for the help.

[Marz in reply to xeena]

If you are referring to the co-factors for VitD - then sadly GP's know little. There are lots if things we can do to help ourselves. Taking VitD improves the uptake of calcium from foods and VitK2-MK7 ensures the calcium is directed away from the arteries and into bones and teeth. Leaving calcium in the arteries is not a good idea !

VitD needs Magnesium to work in the body. Lots of info on the websites below ...

vitamindcouncil.org

grassrootshealth.net

[Polaris]

Good advice from Marz and clivealive . Many medics do not understand PA/B12 deficiency or that it is vital for anyone diagnosed with PA to be given sufficient treatment with B12 injections for life to avoid irreversible neurological damage. Personally, I would join the PAS (if not already a member) and write to the surgery (so it is on record) insisting on the correct treatment. The PAS has information for professionals on their website.

The systems in surgeries are set up to earn more income from dispensing drugs and run clinics than to treat PA/B12 deficiency with injections and this is why they also seem reluctant to use a nurse's time for this - more lucrative to give flu jabs, etc.

I was given Amiodipine for high blood pressure many years ago even though this and high cholesterol was due to insufficient medication for Hashimoto's thyroid disease. I'm now of pension age and horrified to note that almost everyone I know in this age group has been advised to take calcium channel blockers, statins, etc. for high cholesterol, BP, etc. all of which deplete B12 😱

I now monitor my own BP - surgery know I have white coat syndrome and that BP is normal most of the time (normal BP goes up and down throughout the day anyway) but I'm still asked to attend BP clinic, which I ignore as it immediately sends BP soaring 😳

I self inject B12 and am comforted to know that, apart from healing neurological symptoms, this will keep homocysteine low, thus helping to prevent stroke, etc.

Good luck for the correct treatment xeena.

[xeena]

Hi Polaris - i will join the PA site and get the help from like minded people and yes i know what you mean about white coat syndrome - i just do not like doctors as they do not care when you get older. Thank you for your input. PS - i have not had a flu jab for years - i do not believe in them. Keep well.

[lisa209]

First what country are you in? I have PA and my little brother has PA. We have been told it is a lifetime condition. I too have CDK stage 3A. They tried that with me the D3 and it didn’t work. Totally unrelated to B12 issues. Who did the testing for the original diagnosis of PA? A gastroenterologist or a hematologist? I would have them fax your test results to your new physicians office. This would clear things up. By the way my insurance only covers for one shot of B12 every three months even for PA… So I have to buy my own supplies and inject it myself. So whether the doctor says I have it or not I still have to do all of it by myself… So I’m initially I got the dose level from my doctor and then continued it at home I have to dose twice a month not every three months that’s not enough. I would get onto this right away because they didn’t name pernicious anemia… Pernicious because it was a benign condition. You need to take care of it ASAP. Good luck fight for your right it’s your health… I wish you well

[lisa209]

First what country are you in? I have PA and my little brother has PA. We have been told it is a lifetime condition. I too have CDK stage 3A. They tried that with me the D3 and it didn’t work. Totally unrelated to B12 issues. Who did the testing for the original diagnosis of PA? A gastroenterologist or a hematologist? I would have them fax your test results to your new physicians office. This would clear things up. By the way my insurance only covers for one shot of B12 every three months even for PA… So I have to buy my own supplies and inject it myself. So whether the doctor says I have it or not I still have to do all of it by myself… So I’m initially I got the dose level from my doctor and then continued it at home I have to dose twice a month not every three months that’s not enough. I would get onto this right away because they didn’t name pernicious anemia… Pernicious because it was a benign condition. You need to take care of it ASAP. Good luck fight for your right it’s your health… I wish you well