Sorry long post

[Lurcher-lady]

Saw doctor in March as very tired, wobbly, brain fog, really bad memory, blurry vision, rash on leg. He thought Lyme diseases and ordered lots of tests. Lyme disease negative, but low B12. He didn’t even want a repeat appt, just left note to buy B12 over the counter, I made an appt to see different doc who was dismissive, said it wouldn’t be cause of blurry vision (which worried me as have had retinal op for torn retina). She just called me a bit of a mystery and said she’s was too old for mysteries. I checked here on advice of daughters friend who has B12 injections. Went back to original doc with printout of nhs guidelines and my symptoms and he just glanced at paper and pushed it back to me. Retested and b12 was 400+ so he said I didn’t have B12 problem and results proved it. Said I had polymyalgia and prescribed steroids. I asked for printout of my results, which he agreed to. When I collected them from surgery he had missed out the original B12 results and used another doctors name, so I phoned reception who said she could see results on my records but was having difficulty printing them. Collected printout today and they are there with advise to treat if clinically appropriate, also with the doctors name this time. I’m fuming and not sure where to go now as this was clearly deliberate. How do I find a doctor who will treat me with injections as I feel no better and my life is affected? I’m 68 years old, so no spring chicken but not exactly at deaths door and would like my energy back. Thanks for reading, I know it’s long.

[username7]

Ugh, some doctors are really awful at this! It took me about 10 doctors to find one that takes this seriously. Can you get B12 shots at a medical spa? I'm not sure if these exist elsewhere, but that's an option in the US. I started getting shots prior to my doctor appointment... I was totally wiped out and didn't want to wait 6 weeks to see the doctor before starting treatment. They do cost $15-$25 out of pocket for each shot though. Either way, I would find (another) new doctor!

[Lurcher-lady in reply to username7]

I could prob gets shots here in uk. I suppose I just wanted a doctor to OK everything and listen to what I need. Thanks

[Hanneke12]

That sounds like a horrible experience. Please get another doctor...

I did as well. Now have one who seemed on board with biweekly injections... (though yesterday he suddenly asked for a serum B12 test: so weird! Hope he won't mess with my injections based on the new 'proof' that B12 is too high... I do wonder if this is just my B12-induced paranoia. Hope so...:-))

Anyway: hope you find a way. Keep fighting. No matter your age! You deserve quality of life.

[Lurcher-lady in reply to Hanneke12]

It is indeed scary to think they can stop treatment at any time. I’m speaking to PAS today and making an appointment to speak to the practice manager. Was your second doctor at the same practice?

[Hanneke12 in reply to Lurcher-lady]

No, different practice (didn't want to risk anything).

Best of luck to you! Hope you solve everything and get back your energy!

[Lurcher-lady in reply to Hanneke12]

Fingers crossed 😉

[Cherylclaire Forum Support]

Go to an optician who is familiar with the effects of B12 deficiency. I have a really good one who showed me what eyes look like if you have B12 deficiency, then showed me what my eyes look like so that I could see for myself the difference.

It is really useful if you tell everyone about your B12 status: dentists, opticians etc.

The one person who told me that it was obvious immediately that I had B12 deficiency was an ENT consultant in a leading London hospital he told me that I was doing the right thing by self-injecting every other day but that it would take a long time to get results.

He keeps me going, even now.

Find a better GP. This one really is not worth trying to convince. You need to know whether or not B12 deficiency is your problem and why/ if B12 deficiency is your only problem. Trust is an issue: If your GP is not concerned with improving your health, what is the point of continuing this "relationship" ?

[Lurcher-lady]

It was my optician who told me blurred vision was a symptom but didn’t say he could see anything on testing my eyes. I had a retinal tear last year, so was concerned this could be the reason. Did your eyes recover? I have a boost sublingual spray now and an appt to see the senior doctor at the practice on Thursday, after asking to see practice manager. Think they were bothered about that. She still said they follow nhs guidelines though, so I’ve printed out their latest update which says to treat neurological symptoms. I have already decided to tell them on Thursday if they still refuse to test, that I shall self inject as it’s my body. The thing that seems to make them think tablets will do is the fact that it’s not pernicious anaemia as intrinsic test is ok. I’m keeping fingers crossed. Thanks for your support. I’m interested to know if your eyes recovered.