Stupid doctor

[mwsteele]

Having had my bloods done (following great advice on here about getting my iron levels checked) we discovered I needed vitamin b12 injections and folic acid tablets.

The injection regime was to be one a week for 3 weeks then once every 3 months. After the 3rd week I noticed I was getting these very bad hypnic jerks (see previous post by me), and one evening it was that bad I ended up ringing NHS111, went through a full telephone assessment and got told to ring my doctor the following morning.

As expected I was unable to get a doctor appointment (the NHS really is in a mess) when I rang, but was offered the Advanced Practice Nurse...I'd met her before and had been impressed by her knowledge and explanations.

I'd managed to record one of these "jerks" from the night before, and she explained that it was due to the lack of b12 (not as the quack had said...stress related) and I'd feel better after injection number 6. A quick calculation in my head took that to February next year...and I asked if there was anything that I could do over the next 8 months or so to help with these symptoms.

The puzzled look she gave me was something I'll not forget in a long time...it turned out I should have had 3 injections a week for 2 consecutive weeks!!! So guess who's rather upset with his quack?! We go to see them and put our trust in them...then they f*** up big time.

As much as I dislike injections, I've got 3 next week and something to look forward to...I'll put up with these severe "jerks" for 7 more days.

[Jose651]

Hi mwsteele,

Unfortunately a lot of GPs don't place a lot of emphasis on Vitamin B12 deficiency or Pernicious Anemia.

What you are now getting.....3 hydroxocobalamin injections per week for 2 weeks is known as a loading dose.

Most patients can feel a bit worse while the nerve endings heal but you will feel the benefit in a few weeks.

It is very important that you supplement folic acid as it is needed alongside B12.

You could join PAS within Healthunlocked where members will be able to comment on your deficiency. PAS.. is Pernicious Anemia Society.

Your GP will need to test you for PA and if that is positive you will need B12 injections for life.

Do you know what level your blood were for b12, folate, Vit D and ferritin?

J

[mwsteele in reply to Jose651]

Hi, thanks for the reply. I have been told the b12 is for life. I'm also on the highest folic acid tablets, apparently...I'm thinking in future I should see the Advanced Practice Nurse rather than the quack!!

I don't know my levels (apart from the ferritin which was 427!) but I'm having repeat bloods done so I'll make a note of them then.

Thanks for your reply and support, this group has been hugely helpful in this difficult time

[Jose651 in reply to mwsteele]

You're welcome,

Pop over to PAS and read up as much as you can about the condition. There is a list of symptoms and a lot of useful info there.

PA is an autoimmune disease.

Take care,

J😊

[mwsteele in reply to Jose651]

Thanks, I've just found the group.

[Joolsg]

There's clearly a link between PA and RLS so fingers crossed the injections will help both conditions. Yet another dozy GP. That is why we have to become experts in our own conditions- to keep the GP's up to date.

Good luck & let us know how you get on.

[Gmc54 in reply to Joolsg]

It's all very well, until you come up against a gp who's arrogant enough think you can possibly know anything he doesn't, and anything you learn from forums is useless if he hasn't heard of it! Lol!

[Joolsg in reply to Gmc54]

Indeed. Mine said "You haven't been googling this have you?" Erm, yes I have as you know sweet FA. Same woman said "what's this augmentation thing you're on about". Now, I write to my MS neurologist, set out what I want and she then writes to my GP setting out position and asking my GP to prescribe the necessary drugs. Result!