Amazingly bad GP

[JanineRockChick]

Ok so I'm writing my second post after yet another battle with my GP. I was officially diagnosed (via a consultant Gastroenterologist) with PA some 17 years ago and for the past 3 years receive my B12 shots every 8 weeks, moved from every 12 weeks at my request due to fatigue etc. However, for some bizarre reason over the past 12 months my GP has become increasingly awkward and seems intent to push these back to 12 weeks again despite me telling him that to do so would severely impact both on my health and my job! he has just made me have yet another blood test and even threatened to withhold my injections if I didn't have the tests and hey guess what? the B12 levels are normal. I have argued constantly with him that I was told PA was a chronic condition and that I would need to have the injections for the rest of my life. However, after visiting yesterday for my latest shot he informed me that he has referred me to a hematologist. I questioned what for as I have been diagnosed with PA and my understanding was that it cannot be cured and that the B12 shots were what was used to treat the symptoms in the UK. He replied that he needed to see why I was so tired, again i reiterated that the extreme tiredness was a symptom of having PA. So maybe someone on here can tell me if there is now some other miraculous way to treat the symptoms of PA, aside from the shots as I am now at the point where I may have to switch GP's as obviously mine doesn't have a clue and seems to think he knows better than a hospital consultant grrrrrrrrrrrrrrrr

[Hidden]

Disclaimer: I am not a trained medic and this is not medical advice.

Have you considered saving yourself the stress and self-injecting?

With all the kit it works out about £1 per injection and you can inject at your leisure.

Stress depletes your B12 so it's a vicious circle.

Or you can spend your valuable time switching doctors no doubt only to have a similar experience.

[JanineRockChick in reply to Hidden]

Thanks Steve,

Yes i have considered it & agree that most probably I will have to go through the same rigmarole just with a different GP!

Can anyone recommend a website where I can buy the B12 and syringes please?

[Hidden in reply to JanineRockChick]

I was pointed on this forum to the Facebook group which has a set of files of which one is preferred suppliers list:

facebook.com/groups/PAB12DS...

On the right-hand side of the screen you'll see a list of files and there's a link "view all files", click that and you'll see the pdf listed there.

I posted a pic of my order on my recent post:

healthunlocked.com/pasoc/po...

The only thing I'd add to that is this handy guide on how to figure out what length needles you need:

unionmedico.com/expanded-ne...

Oh, and this SharpsGuard Ampoule Opener from Amazon which finally arrived and is quite handy although not totally necessary:

amazon.co.uk/gp/product/B00...

HTH

Steve

Disclaimer: I am not a trained medic

[Rheadster72 in reply to JanineRockChick]

Are you in the UK? Cheapest option for syringes is needle exchange. These types of interactions with healthcare professionals (somewhat of an oxymoron I'm discovering) are frustrating and stressful, which might play into their hands of prescribing what appears to be their favourite drugs - antidepressants. Why on earth so many are so reluctant to prescribe B12 as per guidance is just astounding - I've seen 4 GPs and not one would treat as per guidance despite a consultant haematologist suggesting a trial of B12 based on my symptoms. As you've got a diagnosis and you know that a frequency greater than once every 12 weeks helps you function, is definitely give SI serious consideration. In the end I got fed up with repeating the same story to GPs and started SI. Good luck

[JanineRockChick in reply to Rheadster72]

Perhaps they all on a bung with the anti-depressant drug companies! it's certainly very bizarre as really the implications of not giving the injections will eventually cost the NHS far more in the long term not to say the negative impact it has on the patient's health.

I shall wait with bated breath what my GP says after I've seen the consultant haemotologist!

Thanks again

[JanineRockChick]

Marvellous very helpful thanks Steve

[Hidden in reply to JanineRockChick]

No probs, hope you get things sorted!

[clivealive Forum Support]

Hi JanineRockChick try and get your Folate level checked as this and B12 help your iron to make red blood cells. A folate deficiency's symptoms are similar to those of B12.

[Gambit62 Administrator]

have you tried high dose oral/sublingual or nasal sprays or skin patches? They can work for some people, and they aren't covered by the regulations around injectable substances that makes injectable B12 prescription only.

They don't get as much into you as quickly as an injection but they can be quite effective at just giving you enough to keep your levels where they need to be for you after loading shots.

Have you tried pointing your GP at the area of the PAS website specifically geared towards medical professionals. Sounds like it probably won't make any difference but may be it would.

pernicious-anaemia-society....

[JanineRockChick in reply to Gambit62]

No i haven't thank you for the suggestion, I will give them a try as you say it might just be enough to get me through until the next shot!

Thanks for the website link I will keep that and maybe direct him to it at my next visit .

Thank you

[Sleepybunny]

Hi,

Are you a PAS (pernicious Anaemia Society) member? They can offer support and info and in some cases can intervene on behalf of patients.

pernicious-anaemia-society....

PAS tel no [phone] answerphone, may take a few days to get a response

I think the chair of PAS, Martyn Hooper would be interested in your story especially about GP threatening to withhold injections.

PAS members can print off a leaflet "Treatment is for Life"

pernicious-anaemia-society....

Useful blog post on B12 Deficiency Info website from Aug 31, 2017 about what to do if B12 injections are stopped.

b12deficiency.info/

"seems intent to push these back to 12 weeks again despite me telling him that to do so would severely impact both on my health"

My personal opinion is that sometimes it can be more effective to put things in writing as my understanding is that letters to GP are filed with medical notes. However writing letters to GPs can irritate some.

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Might be worth getting proof of your PA diagnosis. Some forum members have found that PA diagnosis was not recorded in their notes.

Access to Medical Records (UK)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

Unhappy with treatment?

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Do you have neurological symptoms?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

If yes, in UK, people with PA/B12 deficiency with neuro symptoms should have maintenance injections every 2 months.

UK B12 treatment info can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

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

cks.nice.org.uk/anaemia-b12...

GP probably has a copy of BNF on their desk.

2) BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

b-s-h.org.uk/guidelines/gui...

I'd recommend reading whole BSH Cobalamin and Folate Guidelines. I gave a copy to my GPs.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy to my GPs.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I am not medically trained just someone who has struggled to get a diagnosis.

[JanineRockChick]

Hi

This is incredibly useful information thank you! I will certainly be doing some reading up.

It's interesting you say about official diagnosis not on medical records as my current GP was not my GP at the time of diagnosis and interestingly asked me some months ago why I was having B12 injections! He got very irate when i pointed out that he had been giving me them for 10 years and that I was officially diagnosed back in 2000 and he should have the information on my records. I am going to follow the link suggested. Sounds like somehow or other this diagnosis was not transferred across when I changed my GP in 2007.

Again many thanks for the useful advice

[BethattheBeach]

My suggestion is to keep a diary of symptoms and to take someone with you to help in the discussion about your treatment. Your notes provide 'eveidence based science' which my Dr seemed thrilled to receive for my files. A B12 deficient brain is slow and two ppl are harder to bluff.

I do si every 2-3 days and it has saved my life!

Good luck.

[JanineRockChick]

Thank you - that's a really good idea as although the main symptom of PA for me is extreme tiredness I do suffer other mild ailments, such as sore tongue and pins & needles, which increase just before the next shot due ! interestingly it was the fact that I all of a sudden developed horrendous mouth ulcers at the age of 34 which kept recurring that led to the diagnosis in the first place. Took my then GP 6 months to test me for B12 deficiency and that was only cos I read something in a Sunday magazine by chance ha!

[Frodo]

Unbelievable. What on earth is happening in the medical profession?