Pernicious Anaemia Society
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Exhausted With GP's

Hi all. I have been pushed to my limit this morning with ignorant Dr"s... In Sept my Dr agreed ' reluctantly " to a trial ' loading B12Injections... 6 in 2 weeks.. .. reluctant because she said bloods were " normal ".. Regardless that since 2007 my bloods showed Larger Abnormal Red Blood Cells.. Which is classic of B12.... She said that two of her Endo friends said, this didn't prove I had B12, Pernicious Anemia or Hashimotosis!!!... Anyway because I said I felt so relieved of ' livid ' syptoms: ie: pins & needles, joint/muscle pain, ... I could actually start to remember things and concentrate and have conversations with people. Nurse said she would book me in for 3 months time for follow up injection. Within days Dr had requested more bloods. They came back with slightly raised TSH... Because I felt better for : loading dose: she agreed I could have the 3 monthly one in Dec!!... I didn't feel 100% but I felt better than I did. But about 3 weeks ago I started to deteriate again. In the mean time I wanted my Thyroid checked again, due to ankles retaining fluid, knee joints are swollen and agony, muscle pain, bloated tummy.. to many to mention. Dr said T3 and one of the anti- bodies couldn't be done on NHS... So I said I would pay Privately to get the tests I needed. She asked how I felt. I said I am starting to feel really ill again, going through all my symptoms. I said I felt I needed another B12 Injection before Dec. She didn't even acknowledge me, just skirted around it. ... To try and cut this story. Over the weekend I could not get out of bed. No energy, horrendous muscle/joint pain, headache, Nausea, lower back pain, muscle weakness. So I rang Dr for a telephone chat with her. Receptionist said I had to go in to her, but she wasn't free, but she was mentoring a " trainee " Dr.... So went to this " trainee " this Morning, explained everything to her because she doesn't know me!! Then said I research a lot on line and i would like another B12 Injection because of returning symptoms. That I believe my injections should have continued until I felt practically 100% better, not make me wait for 3 months. ... She told me she didn't think I needed them!!! HELLO...My body is screaming out it needs it... I pointed out I have had x-days, MRI, Rheumatalogist ruled out arthritis and Fybremaralgia,... I said am fed Up with having to fight for help/treatment. She said she would speak to my Dr, and left me for 10 mins in an office. She came back and said ... Dr ###$ agrees with me that you have to wait until Dec for the next one, and we believe it is your Fybremaralgia.. WHAT Fybremaralgia?? I haven't got that, so she looked up on the screen and said possible Fybremaralgia.. . I am ashamed now, but I lost it.. I was so frustrated and angry. ... I told her, all I am asking us to feel better with a further top up of B12 and you are denying me this. I said how can you sit there and tell me I cannot have something which I have proved I benefit from. I just need more frequently than you are stating. She wouldn't answer me..I said you wonder why people self medicate, I walked out. Cried my eyes out in the car. Now face another 6 weeks of being ill. Before next B12. If they let me have it.

Sorry but I feel so frustrated, tired and angry..I believe I will have to resort to self administering and purchasing B12

.

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Yours is a classic case showing how drs need to be re-educated. It is happening all be it very slowy, which of course is no benefit at all to those of us already experiencing the debilitation which b12d can and does cause.

I have ended up going my own way because my practice ignores the b12 connection too. If you feel you are left with no other options then it does look like you certainly will have to as well.

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Hi Lisahelen. Why oh why cam Dr' s not listen to the patient. There is so much proof by highly qualified Consultants/Specialists/ Professors etc etc, the list is endless. Do GP' s not read Medical Journals!!??

I am having Private Blood Tests done for Thyroid towards end of the month, again as I said above, NHS APPARENTLY don't test for certain things, hence reason for paying. But I don't want to interfere with readings from this. So then I am going to start self administering B12 Injections. ... I class myself as quite an intelligent person. But this is my last resort to do this. Do you self inject? If so can you or any other lovely person on here give me guidance on where to begin 😓

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Hi maypole66 was your Folate level tested or were you supplementing with folic acid whilst having your B12 injections?

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Hi clivealive. Serum Folate Level 8 months ago was ( 42U5 ) results 12.4 ug/L [ 3.9 -26.8 ]

3 weeks ago after loading dose of B12... Folate Level..( 42U5 ) results 12.4 ug/L [ 2.1 - 26.8 ]

I have never supplemented with Folic Acid or anything else

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Hi,

So sorry to hear what you're going through.

Some forum members put their concerns in a letter to GP. I used to get emotional with GPs and struggle to express myself and found writing a letter was less confrontational.

Link about writing letters to GPs about B12 deficiency.

b12deficiency.info/b12-writ...

I was unable for many years to get NHS B12 treatment and eventually resorted to self treatment.

I am not medically trained.

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Hi I did plenty of searching on her regarding self injection, read a wiki and watched some good and bad videos on youtube. I'll post my shopping list, but there are a few other sites and I'm happy to be corrected (I'm new to this).

wikihow.com/Give-a-B12-Inje...

medisave.co.uk/bd-emerald-h...

The B12 below is in 2ml ampules so fills these, it can be a bit fiddly getting it all out of the ampule (if you suck up some air), so I might consider a 5ml syringe next time.

medisave.co.uk/medisave-pro...

medisave.co.uk/b-d-microlan...

This is for intramuscular injection. Some people like a bigger needle to extract the B12 and then swap to the finer one for injecting, but I haven't had any issues using the one.

medisave.co.uk/sharpsguard-...

You will need some small plasters too.

mycare.de/online-kaufen/vit...

I went for this as it was the natural version of B12 you could check what you were given by the doctors. Not sure how common allergic reactions are. But they sell both types.

I'm not medically trained and would say if you are uncertain in any way seek medical advice. The surgery nurse may teach you the technique.

Good luck and hope you feel better soon

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Hi tzracer. Thankyou so much for this info. I will go through all of this later when I finish work, and put my feet up.

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Dont be ashamed about losing it with your doctor. It isnt helpful but If they felt like we do for even one day they would never withhold treatment of a vitamin.

I would be looking for the "root" cause of your b12 deficiency.

I was positive for h pylori and was only tested after i "lost it" wirh my doctor and essentially demanded the test but im in the US and we can do that here as we are paying out of pocket for testing much of the time.

I would pay privately for that test because i had no symptoms such as pain from and ulcer, yet still i was positive. All i had was nausea and lack of appetite.

Hugs and best wishes

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Hi KimberinUS.... nice to hear from you...Yes totally different for you to have to pay for testing and treatment...and yes i believe in my rant yesterday, i said to Dr ... if you were feeling how i feel, you would want it resolved...admittedly i said a lot more tut tut ....Will start self injecting when i have my 3 monthly end of December. Just researching/reading up on all of this now ....Best wishes

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