Help.........sorry it's so long

[Tor666]

Hello everyone,

I am back for some more advice but first I will give you a brief history; In march of this year I was finally diagnosed with B12 deficiency and given the recommended 6 loading doses within the 2 week period. However at no point did the doctor try to establish why I maybe B12 deficient other than running the IF test and that only happened because one of the nurses corrected him.

Unfortunately my IF test came back as negative so I was seen as cured and sent on my merry way. Three months later I was back at the doctors due to pins and needles in my hands, feet and face, my memory was starting to fail, I had the shakes and the fatigue had returned. I was sent for another B12 test but as it came back at B12 = 388ng (180-900) and my Serum folate = 3.8 (4.0-20.0). As a result I was given a prescription for folic acid for 2 months and informed my B12 was fine.

I didn’t take the folic acid due to the conclusion of a heated discussion on here. I just stuck it out for a couple more months and went back to the doctors but this time saw a different doctor in the practice. By this time my migraines, that I take the anticonvulsant- Topiramate for as a prophylactic had become unmanageable and I am now getting them every day. He re-did a full blood panel; My B12 is now 290ng folate 3 and ferritin is 38. He said I am still within range so my symptoms cannot be due to B12 deficiency. I have now had an ECG, result; fine, Cranial CT scan results; fine and I have an appointment with a neurologist on 25th February.

He too gave me a prescription for folic acid for 2 months – I haven’t taken them. I went back to see my doctor last week armed with the NICE guidelines, BNF print off and an article from the BMJ. He promised to read them and he tried to explain that he had to investigate not just B12 but other things too. I agreed that that was sensible but expressed once again that he needed to read the information I had given to him and I left.

Three days later I had a call from the receptionist at the surgery, she said that the doctor had asked her to call to book me in for a one off B12 injection. Initially I was really happy but then I thought about it and now I’m not because it means I will spend longer in this grey area suffering with all these symptoms but my test results coming out in the ‘normal’ range…………….

So my question is; what do I do now?

Sorry that’s a lot longer than I thought it would be.

Victoria x

[Jose651]

Hi Tor666

Are you sure this idiot can read.

[fbirder]

What I would do is try self-supplementing.

If you don't fancy injecting yourself then there ear eseveral alterntives - sprays or lozenges that you stick under your tongue, nasal sprays or skin patches. All of these avoid the problem of non-absorption of tablets in the stomach.

Keep a log of your symptoms and how bad they are, along with what medication you take, and when. You should be able to tell from that how often you need supplements.

You should then be able to take it to your doctor and show him that B12 supplements are fixing your symptoms - so they must be due to a B12 deficiency. Hopefully he will have read the documents you gave him and realise that he must treat the symptoms, not the numbers.

Additional: I would start off with about 1000ug of B12 in your chosen format, once a day for a week. Then I would go on to weekly supplements of B12, along with 400ug of metafolin (methyltetrahydrofolate) once a day.

[Galixie]

Since two doctors have now established that your folic acid level is low, you should really consider supplementing. In order for B12 to be effective it has to have adequate amounts of folic acid and iron. The one off injection you've been offered won't do you much good unless you improve your folic acid level also.

I've apparently missed whatever the heated discussion was about, so please keep in mind that I'm not voicing an opinion on whatever the prior thread entailed.

[Gambit62 Administrator in reply to Galixie]

Adequate levels of folate can delay the development of macrocytosis - the classic anaemia (enlarged and deformed red blood cells) that was viewed as the classic symptom of a B12 deficiency, meaning that people developed neurological symptoms and these went unrecognised as being the result of a B12 deficiency for so long that the damage became permanent. This has been made worse - particularly in the US - by routine fortification of foods - such as bread - with folic acid ... Also, the BCSH guidelines at that point were ambiguous and talked about not treating a folate deficiency if there was a B12 deficiency - I believe the current guidelines are somewhat less ambiguous making it clear that a folate deficiency should not be treated in preference to a B12 deficiency ... but if both are present then the deficiencies for both need to be treated, because, as Galaxie says, your body can't process B12 unless it has enough folate.

[Sleepybunny]

"Unfortunately my IF test came back as negative"

You gave your GP BNF/NICE Guidelines/BMJ article.

Has your GP seen a copy of the "BCSH Cobalamin and folate Guidelines" These came out in 2014 and mention "anti intrinsic factor antibody negative PA" so it is possibel to have PA even if IFA test is negative.

I think this term is used on page 29 a diagnosis flowchart and elsewhere in the document. I was told that the NHS should be following the recommendations of teh BCSH Cobalamin Guidelines.

I copied the whole (long) document and gave a copy to my GP. The PAS have a summary of BCSH document in library section of their website.

pernicious-anaemia-society....

"Summary of the guidelines for the diagnosis and treatment of cobalamin & folate disorders"

Page 4 of the summary mentions "anti intrinsic factor antibody negative PA"

"He said I am still within range so my symptoms cannot be due to B12 deficiency"

Has he seen a copy of the UK NEQAS statement?

Basically it says that patients symptomatic for B12 deficiency should be treated even if B12 serum results normal range. This is also made clear in the BCSH Cobalamin Guidelines.

ukneqas-haematinics.org.uk/...

Martyn Hooper, the chair of the PAS, addressed the House of Lords earlier this year and I believe he mentioned negative antibody PA. See post on June 28 2015 on his blog.

martynhooper.com/

Have you rung the PAS? They are helpful and sympathetic.

01656 769467

"gave me a prescription for folic acid"

I have read that if someone is B12 deficient, they sometimes develop macrocytosis (enlarged red blood cells). MCV and MCH on FBC (Full Blood Count) is likely to be high if macrocytosis is present.

patient.info/doctor/macrocy...

Management section may be useful to read.

[Sleepybunny in reply to Sleepybunny]

I am not a medic, just a patient who has had difficulty getting a diagnosis and wants others to have the info they need to make informed decisions.

[Gambit62 Administrator]

I'd strongly recommend that you join the PAS and then try contacting them to see if they can help by talking to your GP. Failing that there should be a patient liaison service at your surgery and there may be someone there who can help you in trying to get through to your GPs.

It is quite obvious that your GP really isn't aware of and doesn't understand B12 and is far too simplistic in believing that test results tell the whole story - they certainly don't for B12 and it's a bit touch and go for most other conditions as people are individuals but normal ranges are based on averages ... and the statistical distributions for B12 are very wide-spread.

The onus really should be on your GP to establish that your deficiency was due to diet - which is what seems to have been assumed - rather than just assuming supplements would sort it out - iF isn't the only absorption problem - far from it - and if you have an absorption problem that means you also have a problem recycling B12 - your daily requirements are going to be much higher than RDA and your gut has become the proverbial leaky gut.

B12 serum doesn't speak to how your body is metabolising B12 injections, or how it is doing in getting the right forms of B12 to the cells that need them.

At the end of the day though - you can't overdose on B12 and there is no known downside of having high B12 levels - so treating yourself with the levels you need is a real possibility, but you really do need to start treating your folate deficiency as well if that is going to work.

[Blueby]

Hi, no advice from me I am sorry to say because I am sort of in the same boat. Your doctor does seem to be trying to find the route cause of your problems though so hopefully there will be a breakthrough. I just wanted to let you know you are not alone with this type of thing. I have learnt that the thing with medicine is that a lot is based on opinions and it is like putting a jigsaw puzzle together for a lot of people and doctors. Also doctors can be reluctant to diagnose definitely because they don't want to run the risk of being wrong and leading you up a dead end street - this is particularly true if you have complex problems. Its just all the tests and referrals seem to take so long and when they find nothing you feel like you have wasted their time. You haven't. It just means they can eliminate some things from the puzzle.

I hope it works out for you.

Best wishes. X

[sbotwright]

so sorry, fell asleep reading this, will get back to you later.