Don't know what to do anymore

[ItsJustMee]

So I have PA and have done for the past 20+ years due to having a large portion of bowel removed which included the part which absorbs b12.

A month ago I started getting short of breath and fatigued which just so happened to occur 1 week before I get my injection which I get every 12 weeks (it used to be every 6 but they stopped it and made me go back to 12 as my b12 level was adequate apparently) incidentally I only started to get like this since switching to 12 weeks.

Went to the docs for blood tests (just after injection). Came back that I was vitamin D deficient (46nmol/l)(but prior to this test I'd taken 40000mg of D I had leftover from my last D crash) , phosphate deficient (0.4mmol/l) and my MCV was 102.5fl (up from 100fl last test 6 month ago) and my Mch was slightly raised (33.2pg). Folate 15.5ng and b12 (after injection) >2000ng

Ive been to the doctors 6 times this month and so far they have given me vitamin d to take daily (800mg) and a phosphate topup.

Im still getting breathless and no one will take the blind bit of notice of b12 because it was >2000ng all they keep saying is are you anxious, probably panic attacks.

I just don't know what to do, I've been poorly a full month and now they have me on doxycycline because I was coughing a lot this last week.

Please help or advise but be aware nothing I say to them to do with b12 will be paid the slightest bit of attention to. I even mentioned my MCV going up and all they said to me was "well I've seen it as high as 150 in some people so..."

What to do? Is it in my head? Is it b12? Something else?

Thanks for listening.

[pvanderaa]

Neurological damage is literally in your head as the nerves of the brain can be damaged just as much and even more than long peripheral nerves.

You need to get back to more frequent injections. You probably need to be on monthly injections with folic acid and a daily multivitamin supplements as well. B12 needs these supplements to process off excess homocysteine.

Type up a list of all your symptoms and assess a severity score for each symptom of your own choosing. Give this to your GP at each visit when you argue for more frequent injections. If you haven’t already, start a logbook of all your symptoms.

You could also start self injecting. Your GP was wrong to reduce your B12 once you were stable. You really do not want nerve damage to get worse as it takes very long to heal and can become permanent fairly quickly.

[ItsJustMee in reply to pvanderaa]

Ive told them my symptoms every visit I've made this month (been 6 times with short of breath) they take my temp, blood pressure and the oxygen finger clip. Everything seems fine, just anxiety, go away. So how can I get anywhere?

[pvanderaa in reply to ItsJustMee]

Some how holding a typed list in their hands works different than listening to you describe your symptoms. Ask for the list to be included in your file.

It is the evidence that they need but are too busy not listening to write down properly.

I’ve had the ask two different GPs for more frequent injections, one in the UK when I lived there and was asking for more frequent hydroxo to go from 3 months to 2 months and finally monthly between injections. And the second time in the USA when asking for cyano going from monthly to weekly.

[fbirder]

Try pointing out that the guidelines for hydroxocobalamin have changed recently. It is now licensed for injecting every 2 to 3 months (from every three months). Ask the doc to check the online BNF.

[ItsJustMee in reply to fbirder]

I did say that, they just said yes it says 2 to 3 and your blood level shows that 3 is fine.

Can't win.

[wedgewood in reply to ItsJustMee]

You certainly need more regular injections . If you are unable to get them from your GP , then I suggest self- injecting . It is easy and cheap . Those B12 readings don’t mean a thing . I have PA , and I need an injection once a week to keep well, so I have to self -inject . You are not imagining it at all . The doctors do not understand B12 deficiency . Best wishes .

[deniseinmilden]

Have you seen the replies on the subject from Foggyme and Sleepybunny?

They give you pointers to get every chance of more jabs.

Failing that it's self injecting and there's more information on that in Wedgewood's replies and others on the same threads.

To find these go to their profiles by double clicking on their names (see below and in your answers) and look under the heading "replies".

You can buy supplies perfectly safely and relatively easily and cheaply online.

Doing your own jabs is easy and much better than the thought of it. It's definitely better than slowly and painfully dying of a deficiency!

Good luck with everything and please ask again if you have any further questions.

[deniseinmilden in reply to deniseinmilden]

Foggyme

[deniseinmilden in reply to deniseinmilden]

Sleepybunny

[ItsJustMee in reply to deniseinmilden]

I have the supplies already for any "just incase" scenarios and have been giving myself a jab in between my doctors ones (starting around 4 weeks ago and most recent one yesterday) making it around every 4 weeks, but it makes me really nervous going against what the doctors say. I'm using hydroxo and I know it can't really hurt me but it still makes me nervous as I know my level is already over 2000. I'm just in a massive mess of anxiety at the moment that I dont know how to get out of.

[deniseinmilden]

Just one very simple answer...

More B12 and supporting supplements!

A lot of vitamin and mineral deficiencies manifest themselves as anxiety - I guess it's been nature's way over millenia of getting us to do something about a problem.

Generations ago we'd have noticed something was wrong and, without ill-informed Drs putting out fabricated nonsense to put us off, that anxiety would have made us try all sorts of things to try to get better, probably including eye of newt and wing of toad! 😜😁 This has been so successful that it has been inherited into our basic make up.

I have been doing daily jabs and taking supporting supplements for the past 4 years and gradually my anxiety has melted away.

So much so that I'm even OK with spiders and things like that! It's truly amazing.

It's safer for you to have as many jabs as you need than not - listen to your body as symptoms are its only way of telling you that something is wrong and needs fixing.

If you need it, you need it!

With increased jabs you are likely to benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, maybe vitamin D, ideally from your diet!

Go for it and get yourself better soon!

[MariLiz]

I would write everything down in a letter to your GP so that it has to go with your medical records. Explain to them that just because the levels floating around in your blood look good, it doesn’t mean they are reaching your cells! As I understand it, further testing of levels once you are on injections isn’t needed.

Feeling breathless was a major symptom for me, before I was diagnosed. It is quite frightening at times, and you didn’t get this until they reduced your injections!

Ask for them to be reinstated for a period of time, say six months, to see if the symptoms go away. This would be your proof they are needed. You could send a copy of your letter to the CCG in your area, and your local MP. Perhaps if the GP felt they were under scrutiny from elsewhere, they might be more helpful.

I hope this might help?

Best wishes

MariLiz

[ItsJustMee in reply to MariLiz]

I did mention the whole not reaching my cells thing but the doctor looked at me like I was speaking Chinese and just said "of course it is, it's in your blood" and "we have no such other tests, only the b12 level test and that shows all is fine" I have given up hope of the doctors listening or doing anything.

And I agree, the breathless is very scary, I've had it around 5 weeks now.

[MariLiz]

Do you belong to the Pernicious Anaemia Society? They have leaflets available to explain things to GP’s who are having difficulty understanding the whole process.

Unfortunately, most GP’s haven’t covered anything about B12 deficiency in their training. My own GP admitted to me that I probably knew more about it than she did, and she was very open to listening.

By putting it in writing it will have to go with your notes, and a leaflet from the Pernicious Anaemia Society would add weight to your argument.

I know how helpless we can feel in this situation. Have you anyone who could go with you to see your GP?

Best wishes

MariLiz