B12 injections after visit at GP this morning ...

[JGBH]

Hello everyone,

Just thought I'd let you know about some progress with my GP.

First of all I wish to THANK the caring people who have been most helpful in advising and guiding me/giving me ideas of how to proceed with a reluctant GP over a 2 year period.

I wrote a positive and constructive letter to GP in order to establish a framework from which we could both work in order to resolve my long standing health issues (multiple, so not easy but not impossible to resolve) and told her I was concerned she had said twice "investigations must soon come to an end" when in fact no real investigations had been initiated from her (though I requested several appointments privately for different things), therefore NO formal diagnosis = NO treatment, and that I simply could not go on as I was for much longer. In my letter I had indicated the problem areas I wish to be dealt with. I also explained why I had refused the offer of ONE B12 injection then the offer of FIVE injections proposed at beginning of this week.. Lack of clear communication. Had enclosed quite a few articles, highlighting specific areas for her to look at (NICE guidelines, Neqas, etc.)

So she agreed to 6 B12 injections over 2 weeks, starting next Monday.... then retesting for B12 and FBC in 4 weeks (tried to explain injections should not stop until neurological problems subside). She said that would establish is my problems came from B12 deficiency ... If no improvements with B12 then would need to pursue other investigations. What could I say to that???

Any opinion on what 6 B12 injections will do? Have you experienced any improvement after 2 weeks of loading doses? Does everybody having B12 injections experience "strange" symptoms (headaches, feeling sick, etc...) as I have read on several posts? A little worried about that...

She has also agreed to refer me (as requested in my letter) to a gastroenterelogist to explore malabsorption problems, internal bleeding, etc. Have long standing problems with GERD and painful stomach (have taken PPIs for decades and have autoimmune diseases... etc.).

She has agreed for me to have thyroid tests panel done but as most of you will know there is one antibody that is not tested by the NHS.... so I suggested I'd buy a testing kit and she offered for blood to be drawn by nurse at surgery free of charge since I can't do finger prick as it would not give enough blood in my case.

I asked for a copy of my latest NHS Thyroid test results ( done in May 2016: "normal" she said). Result below:

Serum TSH level : 1.19 miu/L (0.3 - 5.5)

Note from Lab: No biochemical evidence of primary disease. If on T4 the TSH suggests adequate treatment. If patient is on antithyroid drugs or their is a suspicion of pituitary disease further tests may be required.

I will post this information + other tests results done on same day on Thyroid Forum, later on.

A step forward at last after 2 years of seeing GP every months, much misery, worry and not a great quality if life.

Thanks again for much support and guidance.

[wedgewood]

I was somewhat shocked to read that you had been taking P.P.I.s for decades . These will have totally neutralised your stomach acid, which is needed to help in the absorption of Vitamin B12. and other vitamins and minerals. If you really have to have them , then injections of vitamin B12. are really necessary for you . Also the lack of stomach acid will upset your stomach flora , and be causing discomfort, bloating and nausea. I found that probiotics helped me enormously with this .

Im sure other members on this forum will add other helpful hints for you . Wishing you all the best for the future .

[JGBH in reply to wedgewood]

Unfortunately I have had a hiatus hernia for a very long time, and had to take so many nasty pills to help with much pain when I first had RA, in the late 80s... consequently had GORD, rather pronounced so had to have PPIs eventually. It's a question of knowing what to do for the best: stopping PPIs and risking the return of excrutiating GORD... which can lead to oesophageal cancer.... or carry on taking the PPIs. Is there anything else that would help with GORD without the dreadful side effects of PPIs?

What type of probiotics do you take? Was watching a programme on TV last night whereby yogurts, probiotic drinks and kefir were tested by groups of people for a period of time and kefir came up top.. .

Thanks for your good wishes.

[wedgewood in reply to JGBH]

Initially I took an excellent probiotic called Symprove for about 3 months which totally got rid of all discomfort . But , it was so very expensive . So I researched on line and decided to make organic sauerkraut , and eat a small portion raw every day . It works ! Or you can buy it in health food shops . But should be eaten raw . There are many probiotic capsules . I know that kefir is good but I really don't like it! I don't actually know what GORD IS ! I had bloating , stomach pain and nauseous reflux , not acid reflux . I never had a name for it . But it was similar in some ways to IBS .

It would be good if you could come off the PPI. I think perhaps a good nutritionist might be able to advise you . Doctors know very little about nutrition . Even gastroenterologists are not well informed on nutrition, as I got useless prescriptions from mine . Yes I also have an Hiatus Hernia But it doesn't bother me.

I also have RA ( auto- immune condition, same as PA , often come in twos or threes! )

My experiences with 5 loading doses was fantastic ! All symptoms disappeared . But started to return when I was put on the bog standard 3 monthly . Was refused more regular injections so now I self-inject and keep myself well with a very good multi vitamin and mineral tablet . I hope that you can find your way to better health . With PA it is often up to oneself , as doctors have no understanding of the condition , and the tests are imperfect . BEST OF LUCK WITH YOUR QUEST !And your friends here will always try to help you !

[JGBH in reply to wedgewood]

Hi Wedgwood, and thank you for your information.

GORD is the chronic form of GERD (gasto-oesophageal reflux disease), this is why I have been taking the dreadful PPIs for so long. The hiatus hernia is really a serious problem in my case, unfortunately. I have RA and other autoimmune problems.... Plus I am on thyroid therapy replacement.

I would like to be able to stop taking them but the acid reflux is too much and long term can cause oesophageal cancer, so I understand. Will discuss possibility of stopping them (and what to do to prevent reflux... but realistically not too hopeful about that) when I see the gastro GP is referring me to. Truly don't expect much from that source... but one never knows.

You mentioned finding a good nutritionist to help me in getting rid of PPIs. I suppose this would have to be done privately. So any idea of how I can find such a nutritionist? By searching on the internet one does not know how reliable such a person is. Ideas welcome.

When you say you eat sauerkraut raw, (straight from the pot), how much do you eat, and is it on an empty stomach, before breakfast? Does sauerkraut keep in the fridge for a long time?

Thank you for your support and that of other members of this wonderful Forum.... So glad I have found out about it and only wish i had known about it before.

[Polaris in reply to JGBH]

Biona organic sauerkraut from the local health food shop works for me JGBH. Daily spoonfuls (and a g/f diet) rescued me from years of painful gastritis, IBS, H/Pylori, acid reflux, gall bladder symptoms, etc. (am also hypothyroid). Like most things, start with a small amount and build up slowly.

Vogel's Centaurium drops are also excellent for acid reflux.

organicfacts.net/health-ben...

It was such a relief not to have to reply on PPIs, antibiotics for H/Pylori, etc. I'd been prescribed over years 🤗

[Gambit62 Administrator]

I'd suggest that you make a full list of every single symptom you have and monitor any improvement. Some people do notice improvement quite quickly - I really couldn't comment as I was diagnosed by accident and had no idea what was going on - took me another 15 months to work things out and realise I was being undertreated.

Sometimes things can seem to get worse before they get better so I'd also suggest monitoring any changes both ways.

[JGBH]

Thank you Gambit for advice. Will definitely make notes before I start the 6 injections course and also during injections and once they have stopped during the 4 weeks wait before my bloods are retested.

So when you realised you were undertreated what did you do? Go back to battle it out with GP... or?

[Sleepybunny]

"So she agreed to 6 B12 injections over 2 weeks, starting next Monday.... then retesting for B12 and FBC in 4 weeks "

Hope she knows that the BSH cobalamin and Folate guidelines mention that retesting of b12 levels is irrelevant once treatment has started.

Has she seen this flowchart?

stichtingb12tekort.nl/weten...

And a copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn hooper?

[JGBH in reply to Sleepybunny]

I did add a few "supportive documents" to my letter... but can imagine she did not really look at this or ignored it since she must not really believe in B12 deficiency like the majority of GPs! She has told me during previous appointments there was NO scientific evidence for B12 deficiency.... She's sticking to what she was taught at medical school obviously, that is pretty nothing in relation to B12.

What do you think I should do now? I intent to write another letter to her including only this flow chart. However I would like for her to reply to me in writing.. which she has not done so far although I understand it is my legal right to obtain a written reply from her?

[Hillwoman in reply to JGBH]

Yes, that is your right, and you can insist on a written response to your letter. A GP like yours needs to know that you mean business.

I would make the point explicitly in another letter re. the uselessness of testing after treatment.

[JGBH in reply to Hillwoman]

Thank you Hillwoman. So she should reply to me in writing and NOT ask me to find another surgery?... Although I'd love to leave that surgery.. but it would make my life even harder, having to drive miles away when at times am too ill to drive.

Making a point of writing another letter re: uselessness of testing after treatment. But how do I back that argument up in letter?. Have already shown her guidelines and added them to letter I wrote the day before my appointment of 2/2/17. What a shameful situation...

[Hillwoman in reply to JGBH]

Perhaps just add the one document (flow chart) to the next letter, with the relevant section highlighted to back your argument.

As I understand it, if you have remained polite and to the point, she can't ethically ask you to leave the practice. I've lost the bookmark, but somewhere on the BMA's website there is a document written by their ethics committee in which there are guidelines for GPs for these kinds of situations.

[JGBH in reply to Hillwoman]

That flow chart has never printed clearly (have done several copies and ink appears weak, yet any other document shows a strong clear print! How odd is that...).

And yes I make the huge effort of containing my anger and frustration... and remain to the point, polite and even thank her for the time she gives me in consultation (always well over the 10 minutes.... but wish she'd be more active in her role) and I did ask her to reply to me in writing regarding the programme for B12 treatment.... None of my letters got a written reply.... So HOW do I make her reply to me in writing. Have no appointment with her till beginning of March...

[helvella in reply to JGBH]

That flowchart is a fairly low resolution jpeg

540 x 752 Pixels

[JGBH in reply to helvella]

That's very technical... to me.

Is it possible to make it better,ie: more easily readable?. I can see GP saying she could read easily... Thanks.

[helvella in reply to JGBH]

Pages 29 & 30 of:

thyroiduk.org.uk/tuk/guidel...

Ironically, I found the copy on Thyroid UK before any "official" copies.

Please double-check they are the same!

[JGBH in reply to helvella]

Thank you.

[Sleepybunny]

Hi,

I don't know if a patient has a legal right to a written reply. Is there any chance that the person who runs the B12 deficiency info website might be able to offer some support?

She can be contacted by e-mail.

b12deficiency.info/b12-writ...

One thing I would warn you about is that some GPs can get upset by patients they think are challenging them.

I did challenge (politely ) my GPs and pressure was put on me to leave the practice. I resorted to self treatment when I got to the point I felt I had exhausted any chance of NHS treatment, I also changed to a different GP surgery. It is possible to end up with a reputation as a difficult patient.

"She has told me during previous appointments there was NO scientific evidence for B12 deficiency."

That seems a strange statement to make. I have found plenty of research online about b12 deficiency. I think that each chapter in the book "Could it Be B12?" by Sally Pacholok and JJ. Stuart is followed by a list of references to B12 research/articles.

[Hillwoman in reply to Sleepybunny]

Sleepybunny, you've made a comment before about being labelled as a 'difficult patient'. I understand your concern, because I've been labelled in the same way, but sometimes such a label can have a positive effect for the patient...

I spent several hours yesterday in a packed OP gastroenterology waiting room, where several of us were regaled with a long account of the woes of one of our fellow patients. Long story short - she has experienced many admissions to hospital, some as an emergency, and had awful experiences nearly every time. She now makes a point of contacting the PALS officer wherever she is the moment things start to go wrong for her. As a result, in each of several regional hospitals staff are now very, very careful to provide necessary treatment, on time, and with due respect for her difficulties and personal dignity.

[JGBH in reply to Hillwoman]

Hillwoman, that's interesting... but an added pressure on a sick patient. However... I know I am seen as a most difficult patient... So during my latest appointment i decided to say: " I am very aware I am a nightmare patient for a GP because of my very complex medical issues, but this is a nightmare to me also as I need to be helped in getting better REGARDLESS of my pre-existing conditions".... well, the GP shook her head in agreement on hearing "am a nightmare patient.... so that was rather telling!!! My friend noticed too... GPs are not interested in making a patient better.... too difficult, too much work for them! am so hardhearted and damned angry. (sorry).

[Hillwoman in reply to JGBH]

No need to apologise, and you're right that patients should not have to do all the work. I've spent a large part of the last few days just trying to get different parts of the NHS and one of its privatised arms to talk to each other, and to provide some treatment that was agreed for me months ago.

I think the majority of doctors are merely overpaid technicians. Any notion of true doctoring was discarded decades ago. I wish I had the presence of mind to make the sort of remark you made during my own consultations - I only think of these things beforehand or afterwards!

[JGBH in reply to Hillwoman]

My cousin who lives in France (retired professor of English language, and who often visits the UK) has told me the British GPs are working like Civil servants.... NOT like a doctor!! So your observation they are mere overpaid technicians is more than accurate.

Did you succeed in getting the treatment that had been agreed, eventually, and if so are you feeling better? I sincerely hope so...

Having observed the decline of care of the medical profession (especially in GPs) towards patients over many years I have made myself take notes before any appointment with GP. Also due to the fact it is easily done to be side tracked during a brief appointment I make notes which I take with me to the appointment, and look at, just saying it's more practical to make notes otherwise I would forget some points that need to be discussed... I also make notes of what GP is saying. They may not like it but tough! Naturally I am always polite and courteous... well it's always easier to catch flies with sugar than with vinegar, it is said! Anyway it is always the best option to try and keep one's calm outwardly at least, and politeness, in any occasion, should help a dialogue to take place. Perhaps it would be worth a try in making notes before any appointment and see if it helps you.

[Hillwoman in reply to JGBH]

I used to take notes into consultations with me, and I always found that doctors openly resented them. Some have even been quite aggressive. I'm normally a pretty assertive person, but when I'm facing a doctor my mind tends to go blank - not helped by chronic exhaustion and problems with concentration, word-finding, and so on. But yes, I'm always polite. I prefer to keep my dignity, even if a doctor loses theirs with a hissy fit!

My recent problem was sorted out by my gastroenterology Prof's specialist nurse, who knocked a few heads together to get the treatment equipment organised for me. It isn't hugely effective, but it's better than nothing. I was lucky to be referred to this research team - they show how good other health professionals ought to be.

[JGBH in reply to Hillwoman]

Hi, pleased your recent problem was sorted. Do hope it will help you feel better.

Regarding notes during an appointment with GP I just say I have to make notes otherwise I'd forget certain points and want to make the most of the appointment. Too many people feel intimidated by doctors.... that is a shame....

Best wishes.

[Sleepybunny in reply to Hillwoman]

Hi Hillwoman,

Glad to hear that being a "difficult patient" works for some people. For me it worked to some extent. I got tests that other people I knew didn't get but in the end I was put in a situation where I had to leave the GP practice.

[Hillwoman in reply to Sleepybunny]

You got some tests you genuinely needed, but were made to leave...deeply unethical.

A long time ago, when I lived in another part of the country, I was turfed out of a practice too. It's an awful experience and can make you feel a pariah, but I ended going to a much better GP for the next few years. Not so lucky these days though!

xx

[JGBH in reply to Sleepybunny]

Hi Sleepybunny,

The fact you were made to leave a practice is shocking. I do worry that I may be asked to do so, at one point, because I still need to explain to the GP I should not stop B12 injections after the 2 loading weeks if they follow the NICE and British Haematology Society guidelines as I still do have neurological symptoms, although there is an improvement. So can imagine she won't like my challenging her yet again. However, I always try to be positive in my letters, not rude so it would be rather unethical of her to ask me to leave.... but one never knows!

[JGBH]

Hi Sleepybunny,

There is something fundamentally wrong for so-called "educated" doctors and other health professionals in refusing to accept even the possibility that B12 deficiency is very debilitating and causes serious neurological disability. This mindset is appalling.

Of course there is the added problem of thinking themselves above others.... huge egos! so any patient who does research in order to understand what is happening in the breakdown of their health is viewed as an insult to their oh superior knowledge.... Meanwhile we all suffer.

I have noticed they are very keen to give antidepressants .... So much easier for them than actually trying to be a "good" doctor because that implies taking time to find out what the real problem is, too much for them... too complicated! Of course by dishing pills out they get bonuses from pharmaceutical companies....

I understand that every letter written to a GP must be included into the patient's records.... and I thought it would be reasonable for the doctor to give a written answer.... but not sure. If a patient writes to a GP by remaining calm, non-aggressive, polite but to the point then I can't really see how the doctor should feel entitled nor justified to ask the patient to leave their surgery, but nothing would surprised me!

Thanks for the link you have included to your post, will email and see if I can get my question answered.

[greenbexy]

When I was a student nurse twenty years ago we were told that doctors were told (even taught) that they are 'God's', as they have someone's life in their hands! The lecture room gasped simultaneously, but after our practical placements in a hospital we all learned, it was true, unfortunately!

As for improvement, JGBH , after the loading doses, yes there definitely was, but hasn't lasted. After 5 weeks since my loading doses my gastric problems are back and the memory problems never really disappeared, but got a little better after the third injection. Gradually it seems back to how it always was! Pins and needles got a little better but not totally disappeared,again. Only got diagnosed in November, last loading dose 28th December. I've got an appointment on Tuesday, armed with lots of facts. They have been quite good, so I'm going to blame 'my over- protective mother who has discovered the Internet and sent me loads of emails concerning B12 and neurological problems she has even included the BNF guidelines, would you believe it, Doctor?' Fingers crossed I can increase the dose (4 a year? Yeah?)

[Sleepybunny in reply to greenbexy]

Hi,

Has your "over- protective mother who has discovered the Internet" sent you a copy of the BSH Cobalamin and Folate Guidelines? I take this to appts.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate deficiency" shoudl be on page 3 of listed guidelines or put "cobalamin and Folate guidelines" in search box.

Perhaps she can send you this flowchart to show to GP

stichtingb12tekort.nl/weten...

And a copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn hooper? I gave a copy to GPs...

[greenbexy in reply to Sleepybunny]

Thanks, I sure she would want me to take them with me to appt. ; )

[JGBH in reply to greenbexy]

Hi Greenberry,

I took some papers with me at an appointment in January... she glanced at them... but nothing came of it.

I was then kindly advised and encouraged to write a letter to explain my situation: symptoms, request to see consultants, etc... I added photocopies of guidelines, etc... She did not write back as politely requested but I had an appointment with her the following day. To my surprise I saw a medical student sitting on the appointment... (was not warned) I think she thought she would bully me and intimidate me... But I too had a surprise for her: a friend (who was not feeling very well but decided I needed support and a witness) came with me.

I felt the outcome of the appointment might have been different had I not had a witness with me, my friend expressed the same opinion.

Although she has agreed to my starting the loading doses for 2 weeks I sense she is going to tell me I don't really need the treatment .... Has told me I don't have anaemia... I can see the scenario.

Good luck to you.

[greenbexy in reply to JGBH]

With all the reading on this forum ( thanks everyone) I feel that I'm prepared mentally with my 'ammunition'. I'm hoping that he will listen to me, one can only hope!

[JGBH]

Hi Greenbexy

I think most of us know how doctors think of themselves as "gods of the universe" but most of us also know it's a dreadful delusion de grandeur on their part!.... However it does not help us ...

Good luck with your appointment and let's hope the ruse works in fooling your god-like GP!!!

Do let us know... Best wishes.

[specialk16]

Well done JGBH for getting this far. Keep going 😊

[JGBH]

Thank you .... but I can foresee problems ahead!

[Sleepybunny]

"I have noticed they are very keen to give antidepressants "

Think they get extra funding for patients on their list with depression. Sadly diagnosing someone with B12 deficiency does not involve extra funding as far as I know.

[Sleepybunny]

"told her I was concerned she had said twice "investigations must soon come to an end" "

I was told that I was costing too much money for being persistent in asking for tests.

You have my empathy.

[JGBH in reply to Sleepybunny]

That is so appalling SleepyBunny!

Most of the tests and consultations I had were private. Did so because GP did not once suggest any test/referral to consultant, complete INERTIA on her part. So in utter despair and fear I started to find a way forward by eliminating things in order to find out what my problems were.... But not ONCE did she help me in guiding me.... and has never ever tried to bring everything together to coordinate what had been done in order to attempt in formulating a diagnosis.... and that over 2 years!

How they call themselves doctors is a mystery to me and to many people, no doubt. As far as I am concerned I have NO respect for them and view them as "pill pushers".. always easier to mask symptoms by use of pills rather than being a "proper" and decent doctor and putting care and concern in trying to establish the root cause of a patient's problems.

Thank you for your empathy, and I return it to you wholeheartedly.