When a Lie pays off !

About a month ago daughter in law came over, asked how she was, she broke down crying. She said she felt awful in so much pain, sat her down and asked about symptoms, I already knew she had many red flags, pins and needles,fibroids awaiting hysterectomy etc, she said she felt like a hypochondriac. Well I gave her a little talking to and told her to get a blood test, but tell them your mum has P.A. (that's the lie). She has just rang and thanked me her level 122 (180 to what ever). The BAD news ( Gloucestershire) she does not qualify for injections !!!!!

Put on high strength B12 tablets for three months, then she has to buy her own.

It took her one month before she could get a blood test !!

We will see how she goes, if not I will have to show her how to inject!

[Nackapan]

What level with symptoms do you have to have to qualify for b12 injections? Mine were 106( 180-900)

Had to book them myself but loading doses I got but then supposed to wait 3 months .

Never did find the 'cut off'

Surely a 'out of range' with symptoms An IFA test and injections.

Did they ask what shd eats??

( I didn't get one' )

But surely if only offered tablets it should be done.??

I was told treatment the same so IFA test nog done.

Parietal cell antibody test was

Also told dietary!!

In 3 generations of my

family

Not taken on board

[Hidden in reply to Nackapan]

I don't understand it, it's not dietary, she has just turned 40 years of age. She did say she was getting heart palpitations, I am not surprised the amount of different anti inflammatories she is on and other medication.BUT the one thing she needs is injections....

It just paid off that she told a porky Pie, otherwise I doubt they would of tested B12 Levels...... Folic is fine.

[Nackapan in reply to Hidden]

Yes it shoukd be tested routinely shouldn't it. At least folate on thd same assay.

Good folate okay.

Hopefully she csn push for injections if tablets make no difference.

Hope she's on a very high dose. !

Good she's got you.

[Hidden in reply to Nackapan]

At the moment I don't know what dose she has been given, but I've got loads of different ones, and plenty of ampoules, so will take each day as it comes. She is self employed, so I would prefer to leave until weekends before trying injection as everybody knows you never know how she will react....could be bouncing off the wall or sleeping all day. Might be a good idea too see how she reacts to tablets first !

[Nackapan in reply to Hidden]

Yrs give them a chance .

We are all different.

My sisters level dropped to 113 . She responded well to high dose oral b12.

And stays on it . .

Preferably first injection shoukd be in a medical setting .

[Hidden in reply to Nackapan]

"Preferably first injection should be in a medical setting". Yes ! That's is why I am reluctant to give her injection. I did manage to get my hubby one after confronting his doctor, so after that I was more confident in injecting him, which I still do!

Also re the tablets, Slow at first, but her body might just react better and not go into shock and cause even more pain. We are all different, but at least we know what we are up against having had the result. I have warned her that the next three months might be a roller coaster, but she can ring me anytime if she has problems!

Thanks nackapan, hope all well with you !

[Hidden in reply to Nackapan]

I was told (recently) that the cut off used to be 500 'whatevers'. Now it's been dropped to 200 'whatevers', so if you're over 200 you don't get any B12. I've been using an oral spray that I got in the chemist. It's helping, but not much

[Hidden]

Well done Sallyanni x

[Beginner2]

Glos. is notorious for its antique ideas of treatment for B12D/PA.

From another Glos. resident who had the same problem, message me if you would like to know how I solved it.

[Dee011960]

Well done getting her to tell a little lie to get the test. I also told a lie when the stopped my injections, I told them I didn't want to live anymore as tablets didn't work on me, all they do is increase my bowel movements. The mention of 'live anymore' and hey presto gave me my injections back and have put it on my records not to stop them! Loads of people in the Pandemic were switched to tablets, I knew they wouldn't work for me, I do hope they work for your daughter in law.

[Cherylclaire Forum Support]

Let us know how she does.Not surprising that is has been hard to order B12 lately.

All those poor Gloucestershire folk !

[Hidden in reply to Cherylclaire]

Had to laugh at the phone call she received from the Doctor ... "I think we have resolved your problem, and don't think we need to do further tests"

[Cherylclaire Forum Support in reply to Hidden]

"Don't break your arm, patting yourself on the back ! "

[Hidden in reply to Cherylclaire]

Sorry cherylclaire, I would of preferred the opposite, what I dislike is that you have to lie just to get tested and then refused B12 Injections not in line with NICE guidelines.You might as well do away with NICE !

[Cherylclaire Forum Support in reply to Hidden]

Well, let's hope not, just as they are reviewing their guidelines with Martyn Hooper and others from B12 deficiency support groups on the review committee. Yes, also NHS and medical professional groups involved too - but well worth a read. Even just to be aware of what is being questioned and by which group.

I remain hopeful. And truthful. But probably would not feel the same if I was you.

I recognise that I was lucky, that I have a proactive GP and that I have had access to a lot of consultants purely because of her persistance.

There really is no point in getting tested for B12 in Gloucestershire if they are then going to decide for themselves at what level they are prepared to treat you.

I was originally given injections with a level of 196ng/L in early 2016 - because the local range of what was considered "normal" started at 197 ng/L. Nothing else having been found, it is just frequent self injection that stops me regressing back to what I can only describe as living in a nightmare. I found nothing remotely resembling normal in that situation.

Here you are, still helping others to get where they need to be to survive. I wish you the best of luck - and hope that a NICE review will get through to GPs.

Starting with education. Always.

[Hidden in reply to Cherylclaire]

All I know is that NHS Gloucestershire were 30 million in debt, they have made drastic cut backs to the detriment of patients. I also Know one person locally that was head hunted from another trust to try and transform and update the system, but has met with resistance. They dont like change, both hospitals are quite antiquated.My brother also work for two doctors and said if given the option they would avoid both.

As for b12 deficiency it's a disgrace... not alot more you can say. You are very lucky in the gp you got and I hope for your sake he/she is around for along time.

The last year has been very traumatic and one that doesn't make sense when the cost of b12 injections compared to the trauma and suffering of the three people I know. How many more are there suffering needlessly !

Rant over.

[Cherylclaire Forum Support in reply to Hidden]

Feel free to get it out of your system. Here at least you can find people who know exactly how you are feeling. You can't stay as strong as you are if you can't let off steam now and then.Gloucestershire are piling up a heap of trouble for their own future. Worse, they are not treating people who quite clearly have gone beyond the help that a tablet can offer. Whether judged by numbers - or observation.

The new NICE guidelines, when they arrive, will anyway probably be ignored by them, just as the current ones are.

How can this situation be changed, do you think- MPs ? Press ?

[Hidden in reply to Cherylclaire]

I don't really know, My M.P. was not interested at all ! And Tracey Witty has been doing her utmost, along with Martin, it's been going on for years and now taken a step backward because of Doctors experiment with tablets and not knowing enough about the subject.

[Cherylclaire Forum Support in reply to Hidden]

A shame that all medical professionals do not have to read posts on this forum, the PAS website, Tracey Witty's blogs as part of their training - so that they can get a clearer picture for themselves of what it really is to be B12 deficicient.

[Christine48]

I was put on tablets for three months but my levels didn’t improve at all so they had to start with injections. Good luck x

[Tanyanarialucia1965]

I would go straight to injections, google and you can now get them at beauty salons ect… we pay 35 quid a shot here for my son, I’m luckily prescribed and self inject .

[EllaNore]

How fortunate she had you. I see people walking painfully at doc offices and I think to myself, B12 deficiency. I wonder if anyone has helped them. How many poor unfortunate people are walking around in terrible pain when all they need is a simple blood test. I'm sorry your daughter in law has such medical problems that she has to have a hysterectomy. Good luck to her.

[Hidden in reply to EllaNore]

She has fibromyalgia , endometriosis fibroids and needsA hysterectomy. So is suffering been waiting for over a year now. So she has my sympathy, but knowing how many people experience more pain after injections I really wouldn't know what would be the right approach.

She has to make that decision.

I joined the fibromyalgia site here and if you read some of the comments it is truly heart breaking. I want to leave replies could it be B12. I know what you mean when you say I see people walking painfully, but how many people would believe it could be b12 ?

[EllaNore in reply to Hidden]

I can very much empathize with your daughter-in-law. I've had endometriosis, Interstitial cystitis and adhesions for 37 years. I've been diagnosed with fibromyalgia but I truly don't think it is. I've had four abdominal surgeries to remove endo/adhesions from just about every organ in my body and I've lived in pain since I was 23 years old and I'm now 60. I've always excused all of my abdominal pain for adhesions and I've learned to live with it. Until one day after starting cancer treatment hormone therapy, about 3 weeks into it, my entire body started to hurt incredibly bad and the depression was unreal!!! Everything that hurt me in the past was magnified like crazy and that's when I told my doctor we need to do something different and he did a B12 test and found my deficiency. Since I started my B12 the pain in my feet has gotten better and the pain in my hands is good, but my legs hurt and are weak and clumsy but my abdominal pain is really very very painful right now! Bending over is quite painful. Hence the gastro doc.

So the doctors don't think this is correct but I do. I think that having fresh new blood cells coming into all of these depleted organs and tissues has woken everything up and everything is just going crazy right now. So unfortunately I don't know for sure but I would suspect that it could be painful for your daughter-in-law as well. But it's painful without it too and without having the surgery, so what do you do? If she hasn't had the surgery yet maybe she should start on B12 and that way she can see if it helps her symptoms and maybe she can or not to do surgery. (Unlikely) If she does have the surgery, I think it's at least on her side that she's taking B12. Hopefully it helps her heal better. And without adhesions forming. Those are the big problem. You think doctors don't know a lot about B12? They know next to nothing about endometriosis and adhesions. Especially 37 years ago. I hope she starts the B12 now. Maybe the B12 will help the nerve endings in her abdomen not be so inflamed with the endometriosis. I wish I had better experiences and more promising info for your daughter inlaw. My best to her.

[EllaNore in reply to Hidden]

By the way, I didn't know there were other forums here. I will have to look for adhesions forums. But I was wondering, did they put your DIL on Lupron injections to put her into menopause? That stood for periods and is supposed to shrink the endometriosis growths. It didn't help me. I developed Interstitial cystitis. So. I'm wondering if they dud Lupron, because I think that is what killed my Intrinsic factor. I'm not for sure but that is one of 4 things that could be the culprit. If she took Lupron and developed a deficiency, it would strengthen my theory.

[Hidden in reply to EllaNore]

Yes she has had the lupron injections, only one or two to go. We can never know what drugs and medical procedures do to us long term, most things that are not natural always have a negative impact on the body.

I hope you find relief soon and I am sure she will have a better outcome being on b12.

Thankyou

[EllaNore in reply to Hidden]

Thank you, that's interesting info for me. My best to you both.