Dr agrees to test B12 but not blood test...

[auldreekie]

Hi All, on going (20 years) of discussion with GP about exhaustion. He agreed to injections for a while but that stopped during Covid. I've injected myself for a bit. Now he has agreed to do further test (as blood comes back a huge number because I am injecting!). I think the test may be homocysteine ? Can anyone enlarge on that at all? But the main question is how long should I abstain from injecting B12? I've done a week and am wrecked. Any input greatly appreciated.

[Narwhal10]

Hi auldreekie,

Please consider joining the PA Society. You will have the correct information and then you can pass on to your GP.

Unfortunately, with the pandemic lots of people had their injections stopped and just put onto tablets.

Yes, our levels should be high. Please ask the receptionist or if you get your results electronically then see which blood tests you had.

If it was homocysteine then here is some information.

medlineplus.gov/lab-tests/h...

It is from the States but regardless of where you are, we all have some homocysteine in our blood as we are Beans. Human Beans.

Now, lovely, the GP has left the building, could have had a nice slap up meal and is now putting the children to bed. Meanwhile, you are crawling around on the floor on hands and knees. So, what do you feel is the rational thing to do ? 😉

[auldreekie in reply to Narwhal10]

Hi Narwhal10, thanks so much for the reply. I have joined PA society. Been battling with the GP forever! I have deteriorated in the past 6 months and GP acknowledges it isn't psychosomatic so that is something at least. He has tested a lot of stuff! White cells are low but he said they have been lower in the past (hmm may be why I've been so knackered for so long!).

I checked GPs UK salary today - average £103K pa. Note 'average' they get so many other perks - cash for signing HLPAs being one thing only....

I've not had the homocysteine check yet. I've stayed off B12 for a week - do you think I should wait a bit longer? Half life 6 days I read - not sure how accurate that is??

PS Luckily I have no children needing me (only furry ones!) but I'd be so grumpy if I did - what a horrible parent one would be dealing with all of this nonsense!

[Narwhal10 in reply to auldreekie]

Hi auldreekie,

Unfortunately, I cannot make a decision for you or tell you what to do. It is called ‘informed consent’ for a reason. I do, however advocate that people take responsibility for their health, I signpost and empower.

If someone told you that they have not eaten for a week and they had to starve themselves - you would be rather concerned. Let food be thine medicine and if you can’t ingest and absorb it ; then find the alternate source.

There is conflicting research regarding research about the half-life and one Top Dog says a certain level of B12 can stay in your system to up to a year. Now, if you feel awful after a week of non-treatment, how are you going to be in two weeks ? Then there is the slower and lengthier recovery to live and deal with.

Even Fur Babies need parents. 🐿️

[auldreekie in reply to Narwhal10]

Hi Narwhal, believe u me I can hold my own with the medics! 20 years of thyroid disease and 6 endocrinologist dumped! I will get the homocystene test next week and prepare for further discussiond with the GP!

Yes actually my main concern are my dogs should the deterioration continue.

In the meamntime thanks much for your responses. I hope you and your are holding your own in this rather mixed up world! Best wishes..

[bookish]

Just wondered if GP might consider adding or arranging a methylmalonic acid test for you as well. Some with a B12/folate problem have raised homocysteine, some have raised MMA, some both and some neither.......Adult Inherited Metabolic Diseases referral got mine tested although they couldn't tell me what the problem is. I need methylfolate and lots of B12! Best wishes

[MoKayD]

My doctor tested my homocysteine level before starting loading doses and then again a couple of months later. It started out high (I think it was something like 17) and the second test it was down to, I think, 8. My doctor said that was proof that I was B12 deficient.

[auldreekie in reply to MoKayD]

Thanks everyone, turns out he us doing MMA! Hope to goodness I don't need to insist on Homeocysteine if MMA isn't conclusive. But at least some progress! Thank you all for your replies. Helps so much to see how others are managing to get what they need.

I'm even more motivated as I have v low bp and he wants to give me a drug (steroid related) but I saw last night B12 def has low bp as a symptom. So I am armed!

Thanks again!

[Nackapan in reply to auldreekie]

Yes undiagnosed b12 def/PA megobolastic anaemia. Caused POTS in my daughter .

( low bp to thr point of fainting/ fits)

Postural orthostatic tachycardia syndrome

Body simply under too much strain coping with the damage b12 deficiency does.

[Dancer57 in reply to auldreekie]

If you are having your MMA levels tested I would check before if you have to have it done at a hospital. My Dr done a request for MMA blood test and two blood tests later I still had no result because the blood was too old!!! When I received a third text to say I needed it tested again I went to Dr surgery and turns out via NHS it has to be tested within 30 minutes of blood draw according to my local hospital. Other Hospital Trusts might be different. I am going on Thursday to have it done, hopefully.

GP, Phlebotomist or anyone at surgery had no idea!!

I had private MMA urine test last year and it was high. Active B12 was very low. GPs just say your total B12 is fine!! I asked my GP to test Active B12 with MMA, when it got returned he kindly deleted the Active B12!!! so I am going to have to test privately again!!

It is a nightmare getting them to do work with the patient rather than against them, in my experience!!!

Good luck.

[auldreekie in reply to Dancer57]

Thank yiy Dancer 57. This is already a farce vecause the nurse couldn't draw the blood. They always strugle (clue right there!). i am going again tomorrow!! I will read up on MMA and quiz them tomorrow ..gawd this is a marathon...goos k

luck to you too🙂

[auldreekie in reply to auldreekie]

I've just re read my post - soo many typos!!

Anyway nurse got the blood okay last Wednesday but had no unusual instructions on what to do with the sample and as I said I was not told to fast. I'll be chasing up tomorrow because nearly three weeks without a B12 injection is dreadful. And I expect it will be rejected. We shall see!