Any B12D situations that rectify with replacement, except vegan/diet ? Also, anyone else in Gloucestershire?

[eclilley]

Hi, me again. Sorry I have not replied to some comments on previous post, I will but been struggling.

I have written to GP as knew blood tests would be ok again (apparently they are). It was not the very best letter, but it's not straightforward 'B12 treatment needed as low level just found' situation. I put forward the idea of following NICE of EOD jabs as a next step in trying to work out what's going on as I feel many symptons are same as before found etc etc. If they didnt feel they could, I felt my only option was to SI. Etc (will post letter on).

Had msg from reception to say "gp wants me to book you a routine appt, so 23rd July..."...!!! Eerrrrrmmmm. No!

So I am ringing today to ask to discuss bloods, letter, what next, what do they think it is then etc....

My question is, apart from being vegan, are there any of scenarios where you get lots of symptons of B12D/PA and then get your B12 level found to be low, (but IFNeg), where replacement treatment with B12 jabs then sorts it out & it is "better". Gone, reversed, sorted. ??

E.g.. if it's caused by Entenox in childbirth, and you tgen had jabs, would that mean it's fixed? Or any other causes/scenarios?

I think I probably know the answer, but just for when I speak to GP and she says sonething along the lines of "it does sometimes go low and its just one of those things ".....

Also - is there anyone here who is in bl$$dy Gloucestershire?! I have found a Gloucestershire B12 Patients group on FB which is primarily focused on trying to do something about the particularly poor approach in Glos, support e/other in doing that etc. Quite heartening.

If there is anyone Gloucestershire here who would like to connect and commiserate, do message. Strength in numbers!

😐

[Nackapan]

Im on in other part of the country. Essex. Treatment is poor here too.

Do cant help with the Gloucestershire area.

To answer your question.

I. Not vegan.

2.Not on any medications.

3Not had any surgery

4.The mixed diet including meat veg,fruit pulses diary gluten had kept me very healthy for 55 years then a decline.

5.wasnt given the intrinsic factor blood test.

6. Tested negative for parietal cell antibodies

I believe my trigger for b12 levels starting to drop was the menopause

The timing spot on.

With so many it confuses symtoms

.

The only thing that's confused the doctors is the succession of falls . Ladt one a very bad one hitting my head on concrete.

Then vertigo.

I now know all caused by low b12.

Si fslks vodka be in the mix but low b12 the cause.

Nothing else's found wrong with me to date

So fight on back in 2018 to get more frequent injections after booking my own loading doses that were not opposed.

So presently I have a prescription gir 2 weekly b12 injections.

Once I'd dropped to this they wouldn't budge to have more.

My daughter was low in b12 . Undiagnosed. Then found to be severely b12 folate vit d snd ferritin deficient.

Also megoblastic anaemia .

Was not tested for the intrinsic factor???? Was told same treatment b12 injections FOR LIFE

Not triggered by the menopause, entinox, diet, so I believe PA.

The point I'm trying yo make is at least 50% of thoses with PA are not diagnosed. as nothing else found and they respond to b12 injections.

It is usually 'assumed

If nothing else's found to treat and b12 injections help symptoms you shoukd get them as per all the guidelines.

The bottom line is they need to treat the symptoms.

To date nothing else has stopped me from a slow death.

It's do so hard to persevere when so ill

I bought my own, terrified treatment might be stopped. ( covid ect) we shouldn't have to live live like this.

I'm still waiting for answers to try snd function.

We shoukdnr have to beg for our doctors to work with us.

We need them.

They are the gateway to referrals.

Try and stick to the one Gp with an open mind. Also that will listen.

Once that rappor happens enough should be on your notes for continuing care by any Gp

23rd July totally unacceptable.

Phone every morning until you get put on a call back list .

Keep

the July 23rd one. If face to face as rare.

Good your letter in.

Csnt be ignored eventually.

I've always had to ring to follow up though to actually get a doctor to read it.

As admin scan it onto your notes sbd it joins a pile.

Electronic now . Not a visible sky high paper in-tray thst in my opinion is harder to ignore

Or call 111

Or as fbirder used to say :

Say you want to prevent any irreversible nerve damage

Make s them sit up.

Apart from testing b12 agsin ...

Annoying and a waste of money.

It's good bloods have shown nothing else so far.

Do it's their job to treat symptoms until reason found.

I've mishmashed this reply many times.

For anyone new I hope helpful.

Another thing I've done is to write down everything I eat and drink.

No one has ever asked me thus??

Even with a high cholesterol and being told my b1e deficiency was dietary when I asked my Gp what she thought tge causes was.

Unbelievable really. If she thought dietary why nit refer to a dietician.

My daughter wax abd is still learning from her on nutrition. She does support/ coming sand the reporting back good but nothing seemingly added. ?

Back to absorbtion issues

[eclilley in reply to Nackapan]

Thank you nackapan. All sounds quite familiar, and i agree.I am pretty sure I have ABNegPA, probably since I was young. I did have Entenox 12 years ago for childbirth. Perhaps that stripped me out and hastened more symptoms them developing & showing.

But with no investigation whatsoever, one has to try and be one's own doctor! Which the GP's don't like!!

I want to be able to speak with some degree of certainty when I say to her that just receiving some jabs for a while does not 'cure' any type of B12D and make it go away completely/not recur, unless it is purely dietary and that diet has been changed.....? I have not ever seen anything sying that if you have B12D due to X or Y, then all you need is replacement for a year for example. Only everything saying injections for life, as whatever the cause, it it effectively PA or a lifelong condition.

B12 loading doses in 2018 made a huge difference to me. Would have been even better if they had mentioned my Ferritin at 17 and folate at 9.4. So then I felt dreadful when these stopped after 5.

Another 5 months passed and I persuaded (brow-beat!) one into agreeing 8-weekly jabs. These helped me too (though could've done with more, I was trying to go along with them and be a patient patient!).

Having them stopped last year, and now getting back but 3-months & then 2 months, is causing me all my current problems, I am sure of it.

Agreeing to a 'therapeutic trial' of EOD B12 would surely seem sensible, if nothing else to stop me phoning them all the time?! I have x-rays next week, which I suspect will be pointless (my physio things so). An MRI is the only thing she has said would be helpful. But of course the GP can't refer for that, and seems to be unwilling to refer me to anyone else. I just have to live with the constant pain, apparently!

The number of appointments and calls and calls to 11 that I have had since March would see most people through half their lifetime.

I did mention permanent nerve damage in my letter. I recapped my symptoms, I enclosed copy of my 2017-18 symptoms.

I will no doubt end up having to SI, but just at the moment I have SOOOOO much other stress and big things going on that I might look for private injections just for a month or so. At least will also see if that does actually help me. Unless I do change GP surgery v soon, which is another possibility.

It makes me so very angry that this entire condition/set of conditions is so badly understood and so badly treated. That they seem to treat patients with it with a degree of resentment and incedulity for wanting to actually get better and have the peoper, known treatment. And that they act as if B12 is an horrifically addictive strong narcotic which will make you a dependent zombie.

I have no time and no energy at present, but need to get this done, letters written, complaints to CCG/PALS once i have had the conversation with GP. I think I am going to write to Dr Xand and Dr Ranj on't telly too!

Yours,

Irate of Gloucestershire

!!

[Gambit62 Administrator]

Absorption problems that can't be treated will need injections.If your absorption problem is PPI use then stopping the PPI should stop the absorption problem (caveat would be that if the PPI is treating symptoms caused by low stomach acidity then it is the low stomach acidity that is more likely to be causing the B12 absorption problem)

SIBO can be treated and corrected

h pylori infect can be treated with antibiotics and corrected

tape worm infection can be treated and corrected.

metform use should, in theory be correctable by changing to other drugs.

The only way to get B12 levels up quickly is injections.

High dose oral can be effective for maintaining levels once raised but it doesn't work for everyone - reasons why it doesn't work for everyone are unknown. Cause of absorption may affect how likely it is that you won't respond to high dose oral but from what I have seen by way of studies - admittedly small scale - it doesn't really seem to matter what the absorption problem was - there is still a good minority that don't respond to high dose oral

[wedgewood in reply to Gambit62]

Thanks Gambit62 . Excellent explanation 👍

[eclilley in reply to wedgewood]

yes it is, it is a really useful bit of info for us, esp any newbies, to have at their fingertips!thank you!

[eclilley in reply to Gambit62]

Thank you so much Gambit62.

Medications are not part of the equation for me, (though I did get put on Omeprazole a long while back but only for a bout 3 weeks as I stopped taking when it made me feel worse.)

SIBO - could be, I have not had that looked into. I will state that one.

H pylori & the Fish tapeworm - I knew they could be a cause, wasn't sure if they were permanent or could be corrected, thanks. Not been tested, will state them too.

I am fairly sure it must be ABNegPA. They have given me nothing in terms of suggestions or diagnosis so far. I am going to ask her, so what do you think it is? She was apparently writing to the haematologist to get advice on 'how often you should have B12', I have not heard of the result of that yet.

I know the IF test is not reliable. She said the lab will not do it again bc my B12 level is high.

I never had any of the other blood tests done, eg parietal cells, homocysteine etc etc.

They did not tell me my ferritin was 17 and folate was 9.4 when they found the B12 at 133 in 2018.

Now that I know, I supplement with Feroglobin or Spatone in OJ - no idea what level is now, but during later 2019 when had been on 2-monthly jabs for c. 8 months, I had got it up to 28....still not great!

I was taking a combined BVits for folic, but reading some in here, I have just got a methylfolate capsule & started taking 2mg/day.

I take magnesium (750mg/day), & have used the spray a bit recently on pains and aches.

I prob get decent potassium from diet but just trying to add in drinking coconut water too.

Been using Vit D3 spray daily for maybe 10 months.

I have a reasonable, meat-eating, varied, sometimes not from scratch enough, diet. Too much sugar probably.

I am trying bone-broth & gelatine apparoach to gut healing too, to self-help a bit.

As i said to nackapan, I am almost sure I will end up self injecting as a "therapeutic trial" to see if it does help all the things I have going on now, (or just for now some private injections whilst i get through a stressful court case my ex-husband is pursuing). And as and when I do feel better, which i probably will, I shall feel smug telling my GP!

-

[Cherylclaire Forum Support in reply to eclilley]

SIBO can be detected by a breath test - involves fasting and breath tests every 20 mins or so for about 4 hours, then results charted and explained. SIBO bacteria feed off B12 and other vitamins (oil-based ones) and can raise MMA.

Raised methylmalonic acid (MMA) levels can indicate possible SIBO/ renal problems/ B12 deficiency - my MMA was found to be raised despite B12 injections, which is why I was sent for a SIBO breath test by a haematologist, renal problems having been eliminated already by blood test.

Breath test results were "inconclusive": could be either SIBO/ IBS.

Since GP had already found B12 deficiency, low ferritin and folate, and later diagnosed functional B12 deficiency by MMA test, she wanted to rule out SIBO as a cause, so gave me antibiotics just in case - which gave me a bad reaction (constant headache and vertigo) but nothing positive. At least another possibility was eliminated. She dismissed IBS as the cause- that alone would not raise MMA.

Later, a DNA test did not find a functional cause for raised MMA - but by this time, MMA was finally in range for the first time on the 6th test. It had taken three years to get there, during which time only frequent B12 injections could have made a difference.

All of these tests have been on the NHS - the only private test I have had was for a fuller thyroid picture than that offered by NHS.

[Hidden]

Hi I'm in gloucestershire not on Facebook, as I don't like a lot of things that are written. Some people are so cruel on that website! When I was on the website I recieved messages which were below the belt , lucky reading them I realised there must have been a mistake as they referred to being coloured. Obviously I shared the same name with the intend recipient ! So I haven't been on that site for over ten years and never will.... just my opinion. Anyway back to you and continuing problems with nhs.

Have you got a printout of your blood test results ?

When was the last time you had b12 injection ?

What was your Iron levels ?

Are you vegan?

I am sorry that like many other surgeries around waiting times are just awful. The one local to me have a telephone booking system that you have too wait weeks

Just for a telephone conversation!. Thank god I'm not with them anymore.

[Jennygal]

I feel quite similar to you. My levels of b12 were awful. I was put on injections but still felt I needed more. My GP refused to increase them more than every eight weeks. Even after I wrote him a letter explaining everything. He implied that it would be too much b12 and would look bad if brought before the medical board. At that point I decided to self inject. I started doing it monthly but have increased to every two weeks now. I’m going to do this for several months and see if I notice a difference. I’m fairly sure I do! My problem now is sourcing b12 - as Brexit seems to have impacted it being delivered to Northern Ireland.

[wedgewood in reply to Jennygal]

Try these pharmacies .

German online pharmacies that will ship to U.K.

Brexit has caused problems for German online pharmacies who were supplying Vitamin B-12 ampoules to U.K. They now have to register with U.K. customs and collect any VAT for them and also have extra paper work,because we are no longer in the single European market. So many of those pharmacies have given up shipping to U.K. . Some , thank goodness, still do .

bodfeld-apotheke.de. A large and reliable pharmacy But they will now only accept payment from U.K. by Bank Transfer . Simple if you have mobile or online Banking .They supply all the information that you need to make a transfer . Otherwise a trip to your bank , for which the charge is £25.00 !

Courier €9.89

apotheke-marienbrunn.de delivery -€12.95

shop.apotal.de Courier €19.90

apohealth.de Click on American flag for English

pharma24.de Courier 14.90 This pharmacy sent me 100 ampoules with a use -by date of only 12 months , where other are 2 years and more . I complained , but was told that 6 months is an acceptable use-by date, and they had sent me 12 months . So ,if you use this pharmacy , don’t order more than you would use in 1year .

Curavendi.de Courier - €19.34

Amazon.de ( German Amazon ) Obtainable in English Often have Hevert B-12 depot ampoules which are 1mg x2ml ampoules ,if they don’t have Rotexmedica 1mg x 1ml . So same strength , but double the amount of liquid .

“Depot” indicates Hydroxocobalamin, which is what the NHS uses . Amazon delivery charges are reasonable.

——————————————————————————

Search for Rotexmedica B12 depot . ( Hydroxocobalamin) These ampoules are 1mgx1ml

Ref. number to get straight to packs of 10+ -03862297

For packs of 100 ampoules (10 x 10) 03862305

This is correct for June 2021 . Can be out of stock sometimes , but back in a day or two .

If a site is only in German , use a translation app , or Google Chrome .

Bear in mind that some sites refer to the U.K. as

Vereinigtes Königreich Grossbritannien und Nord Ireland ( United Kingdom of Great Britain and Northern Ireland) on the drop-down country identification list

Also plain” Grossbritannien “ . The sites named above do all ship to U.K.

[Jennygal in reply to wedgewood]

Thank you so much for this !!! X