Confused newbie

[woo79]

I'm so glad I've found this forum, I've feel like I've learned a lot already from all of the experience's, advice and information provided by you amazing peeps 😊

I'm hoping you may be able to point me in the right direction and help me decide my next step as everytime I interact with my doctor's surgery I'm left more confused! Also apologies in advance for the long post.

Firstly I was diagnosed with depression and anxiety when I was 18 (I'm now 44) and I've had chronic back pain for the last 12 years caused by degenerative disc disease and facet joint syndrome. I've mentioned this as I feel some of the symptoms cross over.

These are my symptoms - Loss of balance, dizzyness, trouble taking a deep breath, confusion, brain fog, memory loss, shaking, unable to get my words out, extreme tiredness, constant headaches, pain in legs and numb toes, carpal tunnel, constant anxiety. The list goes on lol

A visit to the health practitoner about my mental health resulted in blood tests and was told I'm B12 deficient and need injections. In January I had the 6 injections over 2 weeks by a nurse who is B12 deficiant and explained I will need an injection every 3 months for life. I felt better than I had in years after the 1st week and all my symptoms seemed to be decreasing. The clarity of my mind was amazing and my energy levels increased I got more done in a week than I normally do in a month... this lasted for about a week after the injections stopped.

I spoke to another health practioner, well tried to speak to her. I got to say about 2 sentences before she stopped me to say more blood tests.

I had a 3 minute phone conversation with a doctor to get my test results. I'm deficient in Vit D and Serum folate. He prescribed me Colecalciferol 800iu and Folic Acid 5mg. He told me I'm no longer B12 deficient as my results are above range. I questioned if this was a general test or active b12 test as I'm concerned I'm not asorbing the vitimins as I still have symptoms but he dismissed my query by telling me I have enough B12 for the next 4 years and won't need anymore injections and I'll be fine! At that point I decided to get a copy of my test results to see if I can make sense of it all.

Here are my blood test results

December Test Results

Vit B12 - 87 ng/l - 120-900

Haemoglobin - 136 g/L - 115-165

White cell count - 10.7 10/L - 4-11

Platelet count - 268 10/L - 150-400

HCT - 0.42 L/L - 0.37-0.46

RCC - 4 10/L - 3.8-5.8

RDW - 15.8 % - 11-14.8

MCV - 105.1 fL - 80-100

MCH - 34.1 pg - 27-32

Monocyte count - 0.81 10/L - 0.2-0.8

Serum Ferritin - 31 ng/mL - 15-300

Diabeties, Liver and Thyroid are all ok 👍

February Test Results

Vit B12 - 1399 ng/L - 120-900

Serum Folate - 2.3 ug/L - >2.5

25 Vit D - 28 nmol/L - Between 25 - 50 nmol/L: Vitamin D insufficiency.

I almost wish I hadn't had the loading dose as it seems like it was all a tease... here's the person you could be!

I'm now also confused as to what is really wrong with me, any advice would be gratefully appreciated.

[Nackapan]

There is alot of ignorance with medics and b12 .They simply are not trained beyond very basics.

Once on b12 injections your levels should be high and kept high.

Testing levels not advised and s waste of money.

You had a good reaction to b12 injections.

'Proof of the pudding '

Are following a common pattern of needing folic acid and vit D .

Some need iron too.

Every other day b12 injections shoukd continue if you have neurological symptoms un til no further improvement

Then a maintenence regime to keep you as well as possible.

The 5mg of folic acid I'd short term then 400mcg daily is often enough for maintenence.

As for b12 lasting for 4 yesrs .

It may if you were depleted from lack of it in your diet .

I.e vegan.

Then can store and process b12 .

And then keep a b12 supplement going.

If an absorbtion problem you won't be able to utilise it from the stores he / she talks about.

The 3 month regime does not meet everyone's needs .

If an Intrinsic factor antybody test done .if positive you have PA

If negative it doesn't rule it out!!

It picks up about 50% of cases.

Go through plenty of links on

Sleepybunny posts .

Tracy witty blog

PAS society fact sheets

You obviously need more injections 💉

Hope it goes well.

.

[wedgewood]

It sounds as though you have been diagnosed with Pernicious Anaemia , as the nurse said that you will need B12 injections for life . Pernicious Anaemia cannot be cured . Were you told that the test for the Intrinsic factor was positive ? ( IFAB test) Some P.A. patients can manage on a B12 injection every 3 months others have to have daily , every other day ,weekly fortnightly ——- and so on .

. As your symptoms started to return after a week , it’s an indication that you need weekly injections ,which your GP is most unlikely to allow . Pernicious Anaemia is so poorly understood

That your B12 readings are above range has no meaning for a P.A. patient . That does not indicate that the B12 is getting into your cells . What does indicate that is the fact that your symptoms are returning . It’s like having a bowl full of water , when it’s full you only get the benefit when it overflows .

That you have enough B12 stored in your liver” for the next 4years “ is neither here nor there. That B12 will enter your stomach in the same way that B12 from food or tablets enters it . It cannot be absorbed because of your lack of Intrinsic factor cause by the destruction of the parietal cells , which also produce stomach acid , needed to help absorb other vitamins and minerals . As a P.A. patient , you will have no or low stomach acid , causing Achlorhydria/ Hypochlorhydria. You can only properly absorb B12 which is in your blood via injections .

If your GP had reads the guide lines for treatment of P.A. he/she would know that no further test for B12 was necessary —It is totally irrelevant in Pernicious Anaemia treatment .

See where you get with your GP . Ask for more regular injections . Maybe you will have to do what most of us on this forum do —Self -inject . We can get B12 Ampoules from excellent German online pharmacies. , If you ever need help on that , get in touch again , We are always here for you .

I wish you all the best ,

I’m

[Jillymo]

They are withdrawing your injections without finding a cause for your deficiency (PA ? ) which is wrong. You are deficient in several things and they should be looking into whether you have an absorbtion issue. I would be explaining how much I felt better after the injections both mentally and phisically and request a trial to see if any further improvement.

Arm youself with knowledge and tackle them, it is you who is suffering not them. Good luck 🍀

[wedgewood in reply to Jillymo]

I think that Pernicious Anaemia as the reason for deficiency is implied as the nurse told woo79 that she was to have B12 injections FOR LIFE .

[Jillymo in reply to wedgewood]

Exactly, I can not understand why the injections have been withdarawn. I would be tackling them as to why they are not following the guidlines and their expertise for doing so. I would want to know what tests were carried out to confirm PA and get copies of the results and be poking it under their nose. To leave someone for four years without medication when diagnosed with PA is total incompetance as we both know.

It makes me wonder if some of these damned Drs we are dealing with are fully trained ? The trouble here wedgewood is that it was the nurse who told her and not the Gp which confuses the issue. If a confirmed diagnosis of PA has been made - then yes the injections are given for life as you rightly say.

[Nackapan]

Yes I was told b12 injections for life .3 monthly like you!

Only made it to 5 weeks .

Got every other day back.

Alot of opposition from medics but they need to read guidelines .

FYI 2-3 monthly is now on guidelines too.

Also everyone can be prescribed what they need.

Gp's often want their backs covered after a certain time.

Ask for a referral .

My NHS regime was 'sanctioned ' long term by 2 neurologists 3 yesrs apart .

I continue to have fights to retain this.

But nothing else found to date to treat.

On no prescribed drugs .

Gps do this all of the time with other things.

Drugs 'off licence ' ect.

[KBird01]

woo79 - I do feel for you. So many of us here have had the same poor treatment from medical professionals.

With my non-expert eye, I would concur with Nackapan that you need to get back on your B12 asap, even if you've to do it yourself. You've already proved you benefit from and need it. There's lots of support on your way on here to help if you need it.

Also, as Nackapan says, your folate is low and requires supplements.

Also Vit D and iron are low, so again, I would suggest supplements. All these things seem to go hand in hand for many of us.

You will need to be a little careful with iron supplements, so again, Id suggest getting advice on here.

Basically anything below ferritin of 30 is a first stage iron deficiency. This is something many GPs fail to grasp, including mine.

Check out this link and also google the iron clinic for more info.

ncbi.nlm.nih.gov/pmc/articl...

You're absolutely doing the right thing here and remember you know yourself best. 😊

[woo79]

Thank you everyone for your speedy responses.

It's given me the courage and confidence to go back to the gp and try to get myself heard. And hopefully convince them to do an IFAB test and to give me more injections. Unfortunately the previous interactions with them has left me feeling as if it's all in my head.

Thank you again

[Jillymo in reply to woo79]

Tests have been proven not to be accurate and I can assure you your symptoms are not in youur head. I know it is hard many of us have been where you are but you need to be heard. I like many others on here now self inject. If you have a diagnosis of PA they can not and should not withdraw your injections and any short falls in your health will be down to your surgery. If you get no joy try to get hold of the surgery manager.

[charks]

I don't want to put you off but, judging from what you've said, I think you stand very little chance of even getting a PA test. And even if you do they aren't very accurate giving lots of false negatives. I found trying to deal with my GP so frustrating and stressful. I found him very patronising. It is so annoying to be treated like that by someone who hasn't got a clue. I can feel my blood pressure rising everytime I have to see him. So I don't. I self medicate.

[wedgewood in reply to charks]

Yes , charks that’s the best thkng to do . It’s too distressing to go to a GP , who is totally ignorant about P.A. I self medicate also, to keep myself well . Have done so for 9 years now . A weekly B12 injection.

Of course , not treating or under treating P.A. patients , costs the NHS millions , because those patients are so susceptible to illness when they are below par . And any other auto-immune condition that they acquire affects them more seriously ( and they will already have one or will get one or more!)

So it is a really ridiculous situation . P.A. patients suffering physically , mentality and financially and the NHS suffering too . For the lack of a cheap vitamin .

[Midnight_Voice]

My wife was diagnosed with PA, given loading doses, and then left swinging in the wind without any further treatment, as you have been.

At worst, I was pushing her round the supermarket in a wheelchair, when we both thought ‘enough is enough’ and were introduced to self-injecting by a wonderful local support group.

And started following the NICE guidelines, a bit, with monthly injections, though even that is still twice or three times as frequent as NICE recommend.

We have settled, by trial and error, on a weekly regime now. And not much bothered with the NHS for this since.

Though recently, we have tried again; the doctor chuckled at our SI regime (though at least he wasn’t aghast) and murmured ‘placebo effect’, and queried if it was even PA. We said we didn’t know what else might be causing her gait ataxia (avoiding the medical term so we didn’t sound like barrack-room lawyers).

So we invited him to tell us, if it wasn’t PA, then what it was. So he ordered a panel of bloods (we warned him that the B12 would be sky-high).

We’ve had the results back, so he has them now. We are patiently awaiting his call to come in for an appointment so he can tell us what she has got. Time is passing….

So we aren’t disengaging from the NHS, giving them their fair chance to deal with this. But we continue to act for ourselves, as if we were on our own. More effective, quicker, and calmer.

[Nackapan in reply to Midnight_Voice]

Yrs.It's the reassurance of having your own supplies.

I'm still trying to kerp the awareness up with gps .

I also asked

" what is causing these severe symptoms then"

To date 4 yrsrs on .

Nothing else found.

At present have my 2 weekly b12 NHS prescription.

Challenged many times

Also my own supplies.

[Wwwdot]

Hi Woo

Lots of great and knowledgeable advice here and Wedgewood summed up B12 treatment beautifully:

 It’s like having a bowl full of water , when it’s full you only get the benefit when it overflows .🛁🫧

And even better no harm done when your B12 bath does overflow as you cannot overdose on B12!

It is a possibility that some long term medication may have caused the B11 deficiency however that doesn’t account for your folic, iron and vitamin D deficiency.

To improve you need B12 AND sufficient minerals and vitamins to make good blood cells.

Keep a journal of treatment, symptoms and activity etc it is invaluable to support requests for help (which generally fall on deaf ears) and more importantly for you to learn how to regulate and even better ANTICIPATE what you’re going to need. I recently had a little win 🏆 when I went away for a few days and on my B12 day I was full of “B12 beans” and overdid it. So I knew I needed another B12 the next day and enjoyed my trip. Had it not been for my journal I would not have learned the benefit of that additional injection to me.🦉

The biggest win for you is that you have a solution which works and it’s cheap, has only positive side effects and needs you now to be brave and start self injecting. You can do it, if I can!😁

I am needle phobic (still) and have been self injecting every other day for 3 months now. You will look back in a month and be amazed … please come back and share your success! 🍀🥂

Welcome to the world of overflowing baths! 🛁😁

[wedgewood]

Well put woo79 !