A step in the right direction...

[Bowtruckle]

So I had a phone call with my doctor regarding the results of the B12 and C-reactive proteins. She said that "clinically it looks like you have enough B12", which I replied 'yes clinically'. (I had previously mentioned it was likely to be high). But I then mentioned the MMA test, which she said she would look to see where I could have this done and get back to me.

After nearly two weeks and having heard nothing, I was due to repeat the C-reactive protein test (this continues to be high and fluctuating between 24 and 32 for the last year). So I decided to print some more of the documents and give these in at the surgery for my doctor's attention. I included details of where the MMA test could be done, as well as BJH document stating that if neuro symptoms present then it should be every 8 weeks rather than 12, along with the document on sub-acute degeneration of the spinal cord.

Two days later, my doctor phoned to tell me she hadn't forgotten about me, and that she had found that I could have the Homocysteine and MMA test in Leicester which is fairly local to me, so that is being arranged for the next week or so. She has also spoken to a haematologist and decided that I can increase my injections to every 8 weeks, but said that the haematologist said he would not recommend them any more often than this.

I was in shock that I had managed to get the injections increased that I didn't ask why he would not recommend them any more often.... but I am happy at the moment with every 8 weeks. It usually hits me around week 5-6. so a bit less of a wait.

I mentioned whether I should try sublinguals or patches in between injections and she said she would not recommend this as she could not find them on the system, and did not know a lot about them (neither her nor the haematologist had heard of them).

On a plus note, she is looking to see if there are any specialists in B12 in the country (UK) that it might be worth me talking to. So if anyone knows of any, preferably around the midlands or in towns/cities easy to reach on the train from Leicester, then I would be happy to hear about them...

Thank you for all your support and links to documents. I feel like there is still a way to go, but not that I am fighting a losing battle any more. I now know why I have to wait an age to get an appointment with my doctor....

[clivealive Forum Support]

Good to read you are making progress Bowtruckle and "educating" your doctor at the same time.

Do you know if your Folate level has been tested as this is essential to process the B12 and will get used up in doing so.

[Bowtruckle in reply to clivealive]

Thanks. My folate has been tested every time I have had my b12 tested and has been 9.7ng/ml a year ago last July, then after loading dose it was 12.7ng/ml a year ago December and the most recent 8.8ng/ml last month. I did ask my doctor if they were okay as I know it is essential for absorption of b12. She said that it was fine, but I wondered whether it was worth taking a low maintaining dose. The range is 2.6-17.3.

[clivealive Forum Support in reply to Bowtruckle]

Personally and not on prescription I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember in addition to what is fortified in my breakfast cereals and green vegetables.

What I do have on prescription are a daily Iron Ferrous Fumerate 210mg tablet which again I've been having for as long as I can remember and the cyanocobamalin B12 injections since 1972.

I was told many years ago to supplement folic acid whilst I was on iron and B12 so have continued to take this "maintenance" dose ever since and I'm still "clivealive" at 75.

[Gambit62 Administrator]

most likely reason for 8 weeks is that the licence for hydroxo is only for 8 weeks in UK - a quirk of the licencing system in this country - and sublingual tabs and patches aren't licensed for use in UK - again another quirk of the licencing arrangements - though they count as vitamin supplements so don't need to be licensed. Basically neither GP or haemo doesn't seem to know how to do anything unless it is in the BNF.

Hope someone is able to help you with identifying a specialist in the Leicester area.

[Bowtruckle in reply to Gambit62]

Thanks that makes sense and I thought it would be something to do with that.

Yes I hope I find one too.

thanks again for the replies.

[Shirleysy11]

Hi like you I become very tired about the same time . When I had my jab last week nurse informed me that other patients have 8 wk jabs. What other symptons do you have

[Bowtruckle in reply to Shirleysy11]

Other symptoms I get are pins and needles come on around week 8 much more easily, I get anxiety with specific things, get irritated by the smallest things, tinnitus, the list goes on but those are the main ones off the top of my head.

I would suggest printing the symptoms docs from the pa society website and tick all the ones that apply.

I didn't realise half the symptoms I had were actually symptoms.