My gp saga (update)

[Kenbowns]

Well, I have failed to get my injections reinstated.

Following 12 months of widespread neuro symptoms, 10 loading doses in Sept, gp stopped the jabs because of dangerously high b12 levels, I have given him all the info and docs recommend in pinned posts, wrote a letter to him and the practice manager which prompted him to speak to a Haemotologist who asked for a second serum b12 and fbc....result, no more jabs, gp has referred me to a General Physician at the hospital (6 weeks ago and waiting)

I have found a private Neurologist and I am going to see him this evening, I did not ask the gp to refer me, I told him I was going and asked him to write the referral letter.

I have had a sneaky peek at this and to say I am angry would be an understatement , in spite of the 12 months and widespread neurological symptoms he says in his letter.....patient reports tingling in his hands for a couple of months, economical with the truth ?

I now have all the supplies I need to SI but will wait until after Neurologist consultation to see if I can get further testing to prove what is happening.

[clivealive Forum Support]

Hi Kenbowns what are the "dangerously high b12 levels"? Do you know your Folate level?

[Kenbowns in reply to clivealive]

Hi Clive

Originally b12 179 and folate just 2

After b12 and folic acid from gp, b12>2000 and folate 24 but now down to 12, bloods 2 weeks ago.

[Penni]

This sounds very simillar to what I've gone through. Having my injections stopped was the worse thing that ever happened to me. I almost died!! I have been left with nerve damage in my feet, lower legs and hands, a curve in my spine,unable too move a toe due too breaking it badly in a fall, most of my hair fell out and I now have too use a stick when I walk. Even though my health has inproved, I'm never going too feel my feet and lower legs again and I'll never stand up straight. Also I'm now going to be on very strong painkillers for the rest of my life just so I can walk and have been left unable to carry out even basic tasks. All because of a GP chose too stop my b12 injections.

I do not want what happened to me to happen to anyone else. At the age of 36 I've been left unable too do so much that I have too rely on my mum too do my cleaning and the only person who understands how I feel at my surgery is my councillor.

[Kenbowns in reply to Penni]

Penni

That is horrific, I am so so sorry that you have been permanently damaged and this probably brings it home to me regarding self injection.

I think I would be looking into legal action if you could prove it all.

[Penni]

The GP has since left the country and to be honest the whole process would be far too expensive and stressful. At least I'm still here too share what can happen if b12 injections are stopped with people.

[Foggyme Administrator]

Hi Kenbowns. Oh dear, this is just dreadful...just don't know what these people are thinking off.

And as you know, they're both talking utter nonsense when they talk about dangerously high B12 levels (be interested to hear what they are).

And I well understand how you feel about your GP's letter (similar things have happened to me, often. The endocrinologist I was referred to read the GP's referral letter and then, apparently very embarrassed, said that he didn't know why I was there! Goodness only know what that letter said.

Have you thought about changing GP's - though I know this is not possible for some people.

Good luck with the neurologist. If he's worth his salt, he'll transfer you to the NHS and arrange for MRI scans of your head and spine...at the very least. He should want to get to the bottom of your continued neurological symptoms.

Sounds very much like you're heading down the route many of are forced to take - self injection. So lots of people here to help if you need support with that.

Good luck and I hope you have a successful appointment...sure we'd all be interested to hear how it goes 😀.

[Kenbowns in reply to Foggyme]

Thanks for your continued support foggy

I will be changing my gp but the timing is not quite right at the moment

I really hope that the neurologist does do as you have suggested and I will certainly update you.

[Foggyme Administrator in reply to Kenbowns]

👍👍. Might help,if you take along the PAS information about sub-acute combined degeneration of the spinal cord (PAS website / library, or internet if not a member) and ask him to go through it with you. You'd think that a neurologist should have heard of this but surprisingly (horrifiyingly), many have not.

Not saying you have this but it might just move the consultation in the right direction if the neuro is 'resistant'.

Very good luck Kenbowns 😀

[fbirder]

That's terrible.

Have you asked the PAS to intervene on your behalf? Here's a recent blog post from Martyn Hooper about just this situation.

martynhooper.com/2016/09/23...

[Kenbowns in reply to fbirder]

Fbirde

I have spoken to Martyn a couple of times but he says that he is unable to intervene as I do not have a clear diagnosis of pa, I am a member too.

[Kenbowns in reply to Kenbowns]

Neurologist consultation went well

Referred me into his own nhs clinic whereupon he says he will do mri of head and spine, cardiology stuff for my thumping heart, mma and Homocystene (so no more supplementing for me until this is done ) also electro something or other tests for Neuropathy, he intends to speak to Haemotologist and Dermatologist re my red face and chest,....pretty comprehensive really and finally it seems a way out of the never ending circle with my gp.

Consultant also intends writing to my gp to treat me as per NICE guidelines, I will believe that when I see it.

At one point he also stated that there is no danger of toxicity with b12 and I thought wow this is going so well, but later on he said I think you have got enough b12 in you at the moment, so overall I would say that I am 90% satisfied with the consultation.

[Foggyme Administrator in reply to Kenbowns]

Really pleased it went well Kenbowns. Keeping fingers crossed that the rest of the tests go well...let us know how it goes...

But how bad that you had to,pay for a private consultation to get some action...

It's such hard work, especially when feeling so ill, so very well done.

It's late now so very nice to go off to bed with good news rattling around in my brain...thank you.

😀😀

[Marymary7]

Sounds like great news.....I hope it is and you actually have some informed medical person doing the right thing. It is still sad that you have to lay of any supplements in case they skew results, hopefully they will get on with it quickly.

Very good luck for the correct treatment.

M😀

[Kenbowns in reply to Marymary7]

Thankyou M

I hope so too although I am not too sure that the Neurologist will be recommending more b12, he said that I had enough for now and that it could cause more neuropathy ? ? now that one has me baffled, I have googled it and can't find anything to substantiate this.

[fbirder in reply to Kenbowns]

I have googled it and can't find anything to substantiate this.

That's because it is unbridled shullbit.

[Marymary7 in reply to fbirder]

I just dont understand why the medical establishment is acting this way... why? It's not expensive to treat. It's not difficult to test, or to learn all about it, if I can teach myself about it why don't the medical folk! It's the same crazy attitude with my thyroid problem, nearly identical problems with the establishment.

😐m

[Kenbowns in reply to fbirder]

Just as I thought fb but I may have misunderstood him because in fairness to him he was very positive in all things b12.....he told me there is no toxicity and that any excess would be excreted and was receptive to what I was saying regarding treating the symptoms at cell level. (hope it is the same when I see him on the nhs ? )

He also had a sense of humour, it was quite obvious that I had done my homework but when it came to the end of the consultation he quizzed me about the invention of b12, who it was, where it was......whoooosh lol

He said he had read up on all of this and found it very interesting and that I should read it.

[Sleepybunny]

"Homocystene (so no more supplementing for me until this is done )"

Just a warning that results for homocysteine, MMA and active B12 may be affected if a person has been supplementing with B12. I wasted a lot of money on expensive tests a couple of years ago for results that were unlikely to be reliable because I had been supplementing heavily with b12 before tests. Not sure how long someone needs to stop taking b12 in order to get a result that is not affected.

Think people have to balance the value of getting a test result that may help with diagnosis against the potential impact of stopping B12 on their physical and mental health.

b12deficiency.info/b12-test...

I am not a medic just a person who has struggled to get a diagnosis.

"not too sure that the Neurologist will be recommending more b12, he said that I had enough for now and that it could cause more neuropathy "

Might be helpful to read the summary fbirder compiled. Link in third pinned post and on his profile page.

Good that the neuro will recommend treating according to NICE guidelines. Has neuro seen a copy of BCSH Cobalamin and Folate Guidelines?

b-s-h.org.uk/guidelines/ Click on "Diagnosis of B12 and Folate deficiency"

[Kenbowns in reply to Sleepybunny]

My last jab was 23rd September and I carried on with sublinguals afterwards but these did not suit me, also by the time I get to see the neuro in app 4 weeks I think I will have been clear of any supplements for app 8 weeks, would that be enough.

In the pinned post that you mention are you referring to the Stichting Tekort doc ? I think I have read this previously, I dont think they would have said that b12 could cause more neuropathy, is that where you are coming from sb ?

[Sleepybunny in reply to Kenbowns]

Hi,

I was referring to the document listed at bottom of third pinned post, the ninth link.

I mentioned it because it has a lot of useful quotes that I have found useful when dealing with doctors who don't have a full understanding of b12 issues...thought there might be something in it that would help refute what the neuro said.

I did wonder if the neuro was perhaps referring to the importance of checking b12 levels before treating any folate deficiency. See Management section in next link for more info.

patient.info/doctor/folate-...