A Bit of a Setback With B12 Def Blood Tests

[SweetorDry]

I have been waiting for test results, now into week three. These were Private ones, owing to obstructive attitude by GPs in local surgery. The surgery ( person on desk, maybe the cleaner?) didn`t know anything about any results, but might have had difficulty typing my name into the system. My Christian name is only very slightly unusual, but she had three goes at it and then had trouble with the Surname.

I just phoned the person I was dealing with at the hospital re. the tests, to find she is now on holiday for 3 weeks. But the nice lady I did speak to now tells me they didn`t do the Full Blood Count. She first said it wasn`t ordered, but I know it was because I double checked on the way to the hospital that it was all correct. ( I don`t trust anyone these days...)Then, when she actually looked, it turns out they didn`t take enough blood, so sent the other tests away using the blood they had. Why didn`t they contact me, or the GP who I got to authorise the tests? I could have gone back and given another armful. No one knows.

Why hasn`t the surgery acknowledged the test results which they were sent LAST WEEK ?

I actually feel that when I try any form of interaction with my surgery I enter into a Kafka type Alternate Reality. Do they say to themselves, "Oh it`s HER again.." and act deliberately obtuse?

If my husband had not been standing next to me when I was trying to get the (receptionist?) to get my name right, he would never have believed how difficult it was. I am not a mumbling wreck, either, and with most of my friends and myself being slightly deaf, I tend to speak rather loudly and (I think) articulately.

*Pardon?*

If I have the FBC done now, after taking a couple of weeks of a multivitamin, will they be all messed up (again) ? I stopped for just over 3 months to have the latest ones. Maybe I`ll just skip it, and hope the other tests come out with some kind of indicative result.

Some days I think I am going mad. This is not helped by my realisation that many people in Public Services just are not capable of doing their jobs properly or are wilfully negligent. I worked for years in Plant Sciences, although in a fairly menial post, and if I had made cock ups, the like of which I have witnessed as an NHS occasional user, I would have been sacked.

Sorry about the rant.

Feeling completely P`d off.

PS. After reading stuff on here, I decided to try some extra Vitamin D3 with K2 and I gotta say, I feel a lot better this week( although still getting the tongue problem). Could that be my trouble, after all? I didn`t realise that VitD "makes" Intrinsic Factor. That opens up another avenue of research. I could send off for a test, I suppose, If I get no joy from the others.

Thoughts, anyone?

[jade_s]

Sorry to hear about your troubles. My sister had the same - had blood taken last week and they ran everything else but forgot to run the IF test! Luckily they still had the blood and should be able to run it. I had something similar last month - I ordered the parietal Ab test and instead the lab ended up running a bunch of other Abs including some sort of liver and smooth muscle Abs - what the heck?! Neither of us are in the UK. I guess people are careless everywhere.

As for multivits interfering with test, depends on which tests and which supplements you've been taking. I'm not sure what's in a FBC in the UK (red and white blood related tests?) but normally you shouldn't have to stay off a multivitamin for months. I think iron is the main one to worry about, but staying off it for a few days prior to the test should be fine. B12 and associated tests (MMA, active B12) can be affected if you've supplemented recently.

I didn`t realise that VitD "makes" Intrinsic Factor.

Not sure where you read/heard this but VitD does not make IF (the gastric parietal cells in the stomach do, and as far as I know they're not affected by Vit D).

Many people are deficient in Vit D but I wouldn't supplement without getting tested first. High vit D levels can be harmful.

[SweetorDry in reply to jade_s]

Hello Jade,

Sorry. A bit rushed atm.

Vitamin D stuff.

I read that on Dr Gominak`s site. She appears to be a neurologist.

Quote " Vitamin B12 deficiency is a common secondary deficiency that also affects sleep. It appears that vitamin D deficiency also causes B12 deficiency. There are Vitamin D receptors in the stomach cells that make “intrinsic factor”, the chemical that binds to B12 and allows us to absorb it from the food. When the D is so low that the intrinsic factor production becomes low also we are not able to absorb B12 from our food and become B12 deficient. "

drgominak.com/vitamin-d-hor... That should be the link.

I have yet to look at other sources of that information. Seems legit. Not flogging anything. Take a look see what you make of it.

Cheers.

[fbirder in reply to SweetorDry]

There are Vitamin D receptors in the stomach cells that make “intrinsic factor”

Do you have any scientific links (i.e., not a blog) to support this. Because I can't find any.

[SweetorDry in reply to fbirder]

No, fbirder, I have not heard that little gem before today and not got around to trying to verify it. Yet.

I followed a link to that site from a post on here. It just sounded interesting.

I usually feel especially rubbish all winter, with aches and pains etc. feeling flu-y without ever having the proper flu, and generally poorly. So if levels were going to be low, now is probably when they would start to dip further.

I know just because something sounds sensible, it doesn`t mean that it is right.

I think I will get my D checked anyway. It`s not that expensive, is it?

I can just imagine asking my Doctors to have a Vit D test. They will laugh me out of the surgery. They don`t believe in much other than PPIs, statins, quinine sulphate, and sleeping tablets and they are quite happy to leave you on all three... indefinitely ..whilst never ever bothering to find out what`s wrong with you. I`m talking about family members, here. I won`t play that game. I want diagnoses, not "suck it and see" with pharmaceuticals.

Edit,

Fbirder, I just had a quick peek at PubMed. If you put in "Vitamin D receptors stomach" in the Search, you will see all kinds of bits and bobs with titles suggestive of there being such things, but they have to do with gastric cancer. I expect you are much better at such searches than I. The Vitamin D Council seems to pop up a lot in searches, not sure how good they are, but I followed a link to a guy called Walter Stumpf (now deceased ) who discovered D receptors in the oesophageal sphincter for reflux. Getting warm?? Maybe I`ll have a trawl through tomorrow.

[fbirder in reply to SweetorDry]

I can just imagine asking my Doctors to have a Vit D test. They will laugh me out of the surgery. They don`t believe in much other than PPIs, statins, quinine sulphate, and sleeping tablets

What! No leeches! Anybody would think we weren't in the year of the sneezing panda.

[SweetorDry in reply to fbirder]

That Panda`s probably sneezing because it lives in a bamboo thicket and gets no Vitamin D or B12.

[Marz in reply to SweetorDry]

They also have poorly performing thyroids which could be one of the reasons reproduction is low - I have read 😊

[Frodo]

That blog is a pretty interesting read anyhow.

But it would take forever to check for sources for it all.

[JGBH]

Hi SweetorDry

First of all, sorry to hear about the problems you've encountered at your surgery. Indeed these happen all the time, it seems. However, with due respect, it is not by ranting at random that you will achieve your goal, neither is it by "having your husband at your side"... sorry, you're not a child and should be heard as an adult. So it's important to realise for anyone that problems need to be expressed (nicely but accurately and strongly) at source, ie: your surgery. Also don't waste any time explaining anything medical with receptionists... they're only there for answering phone and making appointment; medical stuff should never be discussed with a receptionist, but with Practice manager or better still your GP directly.

It is only that way you'll get through eventually.. so patience and persistence are also required, but never ever give up. Sorry this has taken a long explanation but I feel people waste a lot of energy speaking and ranting to the wrong people. A problem needs to be addressed at source.

Now, I am very interested to know how you managed to request or have your GP request all the necessary tests for B12 and Folate deficiency. My GP did not know how she would be able to request these since they're not allowed by Nice. She said she would enquire at the Haematology department of local hospital for these tests to be doe privately, but until she knows how to proceed with referral I am waiting..

Thank you if you are able to reply and wishing you better luck in sorting out your ongoing problems, and hoping you'll be feeling better soon..

[SweetorDry in reply to JGBH]

Hi JGBH,

Thanks for the advice. But a couple of points.... I only went to see if my results had come back. I would not have discussed them with the counter staff. They have enough trouble doing whatever they are paid to do. My husband was in there for quite a different matter. I usually find him a bit of a hindrance tbh, as he loves all doctors and thinks they can do no wrong. He wouldn`t stick up for me.

No point ranting or complaining, however politely at my GPs believe me. I`m probably going to get struck off as it is, or carted away by men in white coats for daring to Question Authority.

The story with the tests was...When I asked, GP1 got uppity and denied all knowledge of how I could get other blood tests done, and said I`d have to go to a (very expensive) Private Hospital miles away. Then I found out from a person (friend of a friend) who works in the Local NHS hospital (in pathology), that most tests are available through that hospital, and they send them away if they can`t do them there. I`d have to pay as it`s not on the NHS, so I checked with them what ones I wanted. HomoCysteine, MethylMalonicAcid, HoloTransCobalamine, Intrinsic Factor Antibody, and a Full Blood Count. Yes, they could do all those.

The next hurdle was that they needed a "hand written" PRIVATE request form by a Doctor. It has to say "why you want it" and that you are "willing to pay" and signed personally by the GP. (So, not a standard DART blood test form.) They said your GP will do it. However the Senior Partner GP2, the only one available at the time, point blank refused, was quite rude when he ran out of condescension and told me silly lies to put me off. So I rang back and asked for a call back from GP3 who is only there part time and he was an absolute sweetie and seemed quite happy to do it for me. He could have charged me £30 but said he`d do it for nothing. The alternative is to find a Private GP in Your Area (Google it.)

Your GP sounds slightly more amenable than mine. So good luck with that.

It`s either a well kept secret , bloody mindedness or general ignorance, why no one tells you how to get these things done.

What a shame they didn`t take enough blood for my FBC, because that was also chargeable ( for the drawing of blood) @ £30 a go. I haven`t had the bill yet. I expect it will arrive just in time for Christmas. But I`ve got to the stage of throwing money at problems which I can`t resolve any other way. It seems preferable to banging my head on the brick wall of NICE and the NHS and getting nowhere.

The test results come back to the doctor who requests them, they won`t email them to you. I asked. I suspect mine have gone down the back of the surgery drawer, but I will get there in the end.

Hope that answers your questions.

Cheers.

[JGBH in reply to SweetorDry]

Hi Sweetand Dry,

Many thanks for your kind, funny and most useful answer.... you've made me laugh and I think we'd get on very well and probably would get thrown out of the surgery together... Ahah!

Very reassured you're a "big girl"! And yes, too many people are like your sweet husband, thinking doctors are the queen's bees..... that's partly why many people get nowhere fast all too often. More people like us, who research, question, tell the doctors what is required, don't accept "NO" and demand answers and HELP are needed so that the attitude of GPs can change. We can always dream... Perhaps the next generation... meanwhile we struggle.

I will print your answer if that is alright, as a reference for private blood tests. Will contact my GP to see how she's got on with her research... and if all fails will tell her what to do. So many many thanks again for the tips.

Do hope you'll be able to get help soon, and please let us know your tests results if you feel it's appropriate.

Have a lovely weekend.

[Binky68]

Just to make you feel better, I've waited since August for my GP to write to the hospital for advice on my very high b12( for 6 years) . 2000+ Eventually heard back they wanted me to have homocysteine tests 👏and I waited two weeks to get bloods at local surgery. After taking time off work .... they call me the day after taking blood to let me know I should have had it taken at hospital as it has to be frozen and tested within 30 minutes. So I have to have it done again. But the hospital can't do this for another two weeks . So by the time I get the results it will be December and I would have waited 6 years and 4 minths and still no Mma or holotranscobalamin or active b12.

[SweetorDry in reply to Binky68]

Oh Dear, Hedgehog ! That is appalling. That doesn`t make me feel any better at all. Let`s hope we both get something sorted soon.

I wouldn`t try going for tests in the run up to Christmas. They`ll probably be 3 sheets to the wind with all the Departmental Festive Celebrations and even less efficient.

I thought if I shelled out for Private ones, all in one go, I would be leaps and bounds ahead of my GP`s "don`t care--can`t make me" attitude, but I suspect I will still be wondering into next year when I get my Neuropathy Appointment. Then months to get the result...no call back, just like my Colorectal Consultant, they drop off the edge of the Known World. You start to wonder if they`ve simply lost your notes, and moved on.

I wonder what happens when Doctors are ill and it`s Something Non-Standard... do they go on Google and try all kinds of unlikely stuff, just like the general Public are reduced to doing? Most of them seem not to have a clue, if it ain`t broken, bleeding or falling out ..... you just get sent for one lame test after another ( That`s a Neurology joke).