Wow! G.P. Listened!

[Galadriel1]

Hi all, I just wanted to update my experiences with a more positive one! I had a visit to the Neurologist, which was exactly like all the others, he was towing the party line.... told me straight off he had spoken to his 'colleagues' about my case and had the background, went through the motions, romberg test, but with my eyes open lol! Told me nothing wrong with my memory I scored 28 out of 30 in his test.... lol. Doesn't stop me forgetting names of things or leaving oven on or not knowing why I am in a certain place or where I am going! Totally ignored pins/needles and dismissed muscle weakness as nothing out of the ordinary! Asked him if it was normal to not be able to lift a large mug of coffee at 53 yrs old! Anyway back to Dr's (last one I haven't seen) Results of new blood test show my RBC is now just in range, was low in last one and my MCV & MCH were high (but within range - just) in last results and have lowered slightly in new results, I pointed this out as showing typical PA and as he looked at both results, he visibly looked shocked, why had he not looked already! Anyway, he is referring me to an endocrinologist, (no idea what that will entail), any info gratefully recieved. He has also referred me to a gastro-enterologist. But the icing on the cake was I had to admit I had extra injections so I said I had them privately and he said if I could go private "all of this will disappear". There is hope! I told him I want to self-inject with the support of my Dr. and that I need to have every other day to heal my neurological symptoms. Pointed out I had come to the Dr's on occasions with symptoms of PA and always been poo-pooed as nothing wrong with me. Felt he listened and didn't just go through the motions. Here's hoping, I was going to change surgery but if this one Dr. is going to help.... I'll stay put. I am in Leighton Buzzard if any locals out there.

[clivealive Forum Support]

Hi Galadriel1 I'm pleased you have found someone who listens.

Have you had your Folate level checked as this works with the B12?

P.S. I'm in Aylesbury and my wife was born in Leighton Buzzard

[Galadriel1 in reply to clivealive]

Hi clivealive , Serum folate level 16.9 ng/mL [3.1 - 20.5] My folate in the previous test in Dec was 18.8ng/mL so has dropped slightly, I am prescribed 5mg folate daily now. I demanded it and got it after a bit of an argument with one of the Dr's.

Serum ferritin level 76 ng/mL [20.0 - 204.0] Dr says this is ok.

Neutrophil count 1.5 10*9/L [1.7 - 7.5] Below low reference limit. Dr said that this was not a worry and tried to explain but foggy brain here can't remember what he said.

Mean cell haemoglobin concentration 316 g/L [320.0 - 359.0]

Below low reference limit Can't remember what was said about this or if we even talked about it. And apparently my memory is fine! Lol.

If I can ever get myself together enough, I would like to start a local support group to meet up for coffee etc. and help each other more directly.

[Hillwoman in reply to Galadriel1]

Local support groups are a great idea, and we need more of them. Last year, I hoped to set one up in my area for thyroid and B12d, but my health deteriorated again so that idea's still on hold.

Hope your luck holds with your doc.

[Foggyme Administrator]

Hi Gladreil1. First, pleased that you feel your GP listened to you - that is rare indeed.

Second...it's not clear from your post but...did your GP agree to prescribe the neurological regime for you? I sincerely hope that he's not expecting you to pay privately for what should be treatment according to the guidelines - on the NHS?

The endocrinologist - not sure why he's referring your there - unless he thinks you have a problem with your thyroid...or diabetes maybe? An endocrinologist does not treat B12 deficency (or PA, for that matter). They're only interested in the endocrine system - that is, a collection of glands that produce hormones that regulate growth and development, tissue function, sexual and reproduction...in on their words, anything to do with hormones.

It's good that you've been referred to a gastroenterologist.

About your blood realist (which I've spotted in your reply to clivealive ).

MCHC below reference range - probably due to iron deficency anaemia (possibly,reflected in the low RBC - but that could be due to B12 deficency too)

Low neutrophils - only just below range - can be caused by B12 deficency

Ferritin 76 - it's in range so your GP probably thinks it's okay but...could do with being 100 - 110 (76 is low enough to make you feel unwell with the sing so and symtpoms of iron deficency anaemia). And B12 works best with optimum levels of both folate and ferritin. Suspect you'd feel a bit better if ferritin was a tadge higher.

Folate - afraid your GP was right about that. Folate needs to be in the top third of the reference range - and yours is. Taking 5mg a day will soon take you way over the top of the reference range - and too much folate can make you feel quite ill (if you get raging insomnia and nothing else has changed, it may be a sign of over supplementation with folate (see mayoclinic and search for folate more information). It's worth noting that not everybody needs to supplement heavily with folate (some need none, some 400mcg a day, some 800mcg - as maintenance dose. So, just take care with the folate.

And last...I'm a bit staggered by the comment 'all this will disappear if you go private'.... That's actually quite disgraceful. He should be prescribing your B12 (the Neuro regime) and treating you on the NHS.

So...it's good that he listened (a rare change from what we hear here)...but it'll be even better if he adds in a bit of appropriate action (and I really hope that I have this totally wrong and that he already has).

If you go down the self-injection route, lots of help here...and it's certainly cheaper than seeing a private GP 💉💉

Good luck and let us know how you get on 👍

[Galadriel1 in reply to Foggyme]

Hi Foggyme I couldn't reply last night had to go to bed. Unfortunately no he did not prescribe any more than I am presently getting, I am getting 1 injection every fortnight at the moment, this was because I was quite forceful with Haematologist that I should not be reduced anymore as he had effectively reduced me to that regime from twice weekly! He stated that no-one needs it more than once a month but he would just leave it as the two weekly like he was doing me a favour! Anyway, that was in June last year.... have been on that since. Would have been stopped I am sure if it wasn't for haematologist, my Dr's surgery has been awful. I had pretty much finished with them, hanging up on the Dr. on my last conversation when she told me it was in my head and the reason B12 seemed to help was placebo effect! That was about Sept I think. I did ask her for 5mg daily folate at that time as the B12 needed it, note that I have been self injecting since Sept. I gave myself loading doses and tried to go 2 weeks, was too long and I am back to every other day in between my 2 weekly at the surgery. The difference is immense. Anyway that's why I'm taking the high folate and my folate has dropped since the bloods in Dec. (18.8) and now 16.9 despite me taking 5mg so think I'm ok while taking so much B12 but will be keeping an eye on it.

I went to this Dr. as he is a partner in the practice before I gave up and put in complaint. I told him straight off I had been treated like a hypochondriac and bullied and abused by Dr's and nurses at the practice, I told him about the threat to withdraw treatment if I refused another B12 test after 10 loading doses and a Dr. being aggressive and bullying and in fact reducing me to an emotional wreck which took the nurse 30 minutes with me to calm me enough for my injection. Told him he was last chance saloon before I put complaint in. He looked shocked, he's very old school but first one to listen to me and show interest and discuss with me as an equal. I said he needs to read latest guidelines, he doesn't know about the every other day until no more improvement. I had to admit to having more B12 so said I had it privately as every two weeks was not enough to heal any neurological damage. I am not his patient, I am under one of the other Dr's but I have told him I won't go near her again. He raised my vit D to two a day at my Dec. visit at my request as it was flagged as low again. It seems to have worked as vit D is now in range not optimal but....

I have no idea about endocrinologist, it was he who looking at my bloods decided to refer me. I asked for the gastro referral and told him I had noticed that it was recommended on the lab report on my first bloods which showed the low B12 (155). I also have some issues with constipation and then having to run to loo. The usual sort of B12 stuff lol.

To be fair, I can afford to buy the B12 etc. but don't want to stop having them at Dr just so it stays on there that I'm having them! Also easy for me to make sure I have regular blood checks to see everything like folate, ferritin, vit D and vit C which was extremely low too are all ok.

"MCHC below reference range - probably due to iron deficency anaemia (possibly,reflected in the low RBC - but that could be due to B12 deficency too)"

Didn't know anything about the MCHC so thank you for that. Will bring it up next time. The low RBC has improved it was flagged as low in Dec. bloods but has come within range (just) in the bloods just done (2nd Feb) . In Dec. my MCV & MCH were at the high end only just within range and they have slightly improved still very much at the high end! I pointed out these two blood results from Dec and now to the Dr and said correct me if I'm wrong but that is showing classic PA. He had not noticed it and looked at it and said "oh, yes it is" so I can't help thinking he's been told by the others I don't have PA (negative IFA test) and he now realises I do! Would love to be a fly on the wall at the next team meeting to chat about patients! Anyway very keen to refer me to specialists and seems interested in results, he didn't know there was any connection with gastro. Hoping he starts researching now..... I'll keep working on him and will try to get the every other day regime recognised so the next person doesn't have the same Sh** I've had. Lol.

Sorry for long reply again.

[Foggyme Administrator]

Hi Gladriel1. Oh dear, isn't the lack of knowledge of the part of specilists and GP's just appalling and the levels of hostility display towards patients who are just looking to get well is horrific. Placebo? What nonsense!

And ha ha...I get it now 😄. Hadn't realised that you were self-injecting every other day - so yes, sounds like you need that folate.

A thought - potassium gets used up quite quickly when injecting so frequently - might be worth asking your GP to check your potassium levels.

I'm really impressed that you stood up to your doctors. Bullying patents is just not acceptable and the worst thing is that they don't seem to recognise that this is what they are doing. So well done you 😄.

Hope the 'partner' GP continues his interest and serves you well.

Good luck and let us know how it goes 👍