Struggling with polyneuropathy - knowledgeable member expertise needed

[Mixteca]

Hello lovely peeps! I'm new to this forum and PA and my learning curve is akin to a mountaineous climb atm. In need of reassurance/patient 'expert' knowledge/experience. Science bods with questioning minds most welcome!

I'm in week 5 of initial loading doses (1mg hydrox, EOD), making 16 so far, but it feels like I'm getting worse not better. I'm in the UK and managed to get the standard 6 doses via my GP and they approved SI, so I've been doing that since dose 3.

I appreciate that it can be a very long recovery process as I have neurological involvement (all body systems), and the ongoing burning/cutting sensations in multiple areas is debilitating, but I hoped I'd be able to see the light at the end of the tunnel after 5 weeks.

I'm really struggling to get through this on my own without medical supervision. I get panicky when feeling at my worst - how bad does it have to get before I call 999, anxious that I'm doing the wrong thing re cofactors (those things! I was in THAT B12 support group for a while and got totally overwhelmed and confused), that my folate's too low, that the injections aren't working...I only have this forum to rely on atm.

I could write an essay regarding symptoms, it's tough when this (as yet undiagnosed) disease takes over every moment of your waking life and I know I'm not alone in that isolation.

Please have a look at my key blood results from November for some context. All 'normal' according to surgery and Medichecks. I can include others if relevant:

Serum B12 - 281 ng/L (211.00 - 911.0)

Active B12 (Medichecks) - 100.0 pmol/L (13 - 150)

Ferritin (Medichecks) - 52.9 ug/L (13 - 150)

Folate (Medichecks) - 5.85 ug/L (Range: > 3.89)

Folate (surgery, same blood sample) - 5.0 ug/L (3.0 - 14.4)

Haemoglobin concentration - 120 g/L (115.0 - 150.0)

Haemoglobin A1c level - 42 (20.0 - 41.0)

Haematocrit - 0.353 Ratio (outside ref range, been so since 2018)

Vit D - 94.1 (>50 indicates sufficiency - it's been chronically/dangerously low in past as has iron, 'diagnosed' with ID anaemia in 2008)

Hope somebody can give some guidance, not at all well and at my wit's end.

[Nackapan]

No expert.Have you had other things ruled out.

Guillain barre

Thyroid problems

Ect

Your score is just in the at risk for type 2 diabetes .

In some postcodes that woukd warrant an online NHS course or at least advice on diet.

Symptoms overlap with so many different things.

Often these autoimmune conditions csn be more than one at a time.

Were you given an IFAB test?

It's good you've managed to get NHS b12 treatment.

Some doctors do not recognise you can be deficient with 'in range ' results anc dont prescribe b12

Do you eat alot of b12 and folate and iron rich foods 🤔

My gp didn't even ask what I eat !

Some medications reduce absorbtion of vits

Have you been referred to a neurologist?

Haematologist?

I was much worse before getting better.

Nerves waking up can be painful.

There are lots of links on sleepybunny posts .

PAS

Tracey witty.

Ect.

[Star13 in reply to Nackapan]

what’s an IFAB test please?

[Nackapan in reply to Star13]

Intrinsic factor antibody test. Shows 50% of those with PA .

Most common reason for b12 deficiency.

An auto immune disease

A positive test should be kept safely .

If negative still doesn't rule out PA .

Martyn Hooper tested positive on 3rd test i believe.

The Shiling test eas more comprehensive but not used anymore

[Sleepybunny in reply to Star13]

Hi,

This link about testing for PA (Pernicious Anaemia) mentions an IFAb test (also known as IFA /Intrinsic Factor Antibody test).

pernicious-anaemia-society....

If you want to know more about PA and B12 deficiency, I suggest starting your own thread on the forum. There's a lot of info forum members can pass on to you.

[Mixteca in reply to Sleepybunny]

I've dived into hyperfocused research on all of this for months now. I have Martyn H's latest book. I loathed science at school - how ironic that I've become fascinated in biochemistry to the level of nanoscience. Very unlike me indeed. No idea how to start a new thread or whether this would overwhelm me more. What I really need is a doctor who takes an avid interest in this and is very knowledgeable. Don't know of any unfortunately. I messaged the PA society to point me towards any medics that can help.

[Sleepybunny in reply to Mixteca]

Hi,

Apologies for the confusion. The comment about starting a new thread was for Star13.

A forum member recently mentioned seeing someone who specialised in anaemia in Cambridge.

[Mixteca in reply to Sleepybunny]

Do you mean the iron clinic? Dr Klein? Way beyond my financial means, I'm not working.

[Star13 in reply to Sleepybunny]

I don’t want or need to start a new thread thank you!

[Mixteca in reply to Nackapan]

Thank you Nackapan. I've pretty much ruled most things out - my symptoms fit more to the profile for PA than anything else. I got treated purely because I'd pushed for it for months. Now joined the 'buy it from Germany' Pascoe gang.

I've also been requesting the second line tests since November and gotten nowhere. I'm not that bothered about this testing now - window of opportunity, i.e. before treatment started, long closed in my view.

[DiNL]

Hi Mixteca,

I’ve also been diagnosed with PA and also have Hashimoto. I am still on loading doses and have been since the week before Christmas.

I felt pretty horrendous the first 3 weeks and only noticed myself improving in week 4/5. I was so out of it! Just so weak and had so many strange symptoms.

I kept a symptom diary and that helped to see improvement like all of a sudden I noticed my blurry vision was getting better. My pins and needles started getting better but have been quite peristent. In the beginning I had them all the time and now they have mostly gone.

Currently I am left with weird tremors and shakes in my legs. Sometimes abdomen. My sleeping is still pretty bad but it’s improved somewhat. I’m slowly getting more energy. My concentration is not super yet but a lot better than it was. I am struggling to keep my iron up.

The reason i am telling u this is to try and let u know that things do get better and if u continue EOD injections then your body will recover. But it takes time. It really does.

Hang in there, my anxiety was through the roof and it has also got better. when u are feeling low its hard to stay positive. i know.

Take care,

[Mixteca in reply to DiNL]

Thank you so much! It is hard to feel positive when you're scared and at your lowest. It's been tough self-injecting but I seem to have finally cracked it! Less of a faff and a big build up beforehand. Not yet managed to draw up all of the B12 in one go (I do warm it up). Have no issue when I practice with water. Guess it's to do with viscosity? At least my hands aren't shaking as much as they did in the first few weeks.

[Gen89]

would be a good idea to ask your GP to refer you to a neurologist. There can be many causes of peripheral neuropathy. They can do nerve function tests to find out which size nerves are damaged eg long nerves in arms and legs or short fibre nerves. Also you might need mri scans of brain and spinal cord to find out if any problems there.

[Sleepybunny in reply to Gen89]

Good point Gen89.

For Mixteca

These links are aimed at health professionals.

It's possible that there may be some details in them that could be upsetting.

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro enterologist

cks.nice.org.uk/topics/anae...

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

Your ICB (Integrated care Board) or Health board may have local guidelines on referral to neurology for your area so may be worth trying to find these online.

If you can't find them then you could try submitting a FOI (Freedom of Information) request to ICB or Health Board asking which guidelines for neurological referrals are used locally and for a link to or copy of them.

[Mixteca in reply to Sleepybunny]

Thank you. I've been pushing my surgery to follow NICE guidelines/BMJ best practice from the very beginning with no success. They have failed me. I've been doing their job for them and the stress this has caused has really impacted on my physical and mental health, which have both deteriorated in the months I've been talking to them. Too much of a trigger dealing with or talking about them.

[Mixteca in reply to Sleepybunny]

Thank you also for that 2nd link. I have all of the guidelines bookmarked but hadn't searched for that one yet x

[Mixteca in reply to Gen89]

Yep, I asked for this, as well as other tests. Pretty sure I have nerve damage, hence the neuropathy. Been building for a while I'd say before symptoms exploded. Waiting lists for referral in my region is 44 weeks in 9/10 cases - horrific.

[Gen89 in reply to Mixteca]

The waiting lists are awful. Hope you get an appointment soon.

[Mixteca in reply to Gen89]

I'm actually seeing my GP in person tomorrow, let's see...I've not actually been blatantly refused anything, the problem is the surgery's healthcare isn't fit for purpose, they're in dire straits, a lack of GPs and have 18,000 patients to deal with (it feels like all at the same time to me!).

[charks]

Maybe you need more B12. From what you say you are injecting roughly every three days. A lot of people on this forum inject every day or every other day.

[Mixteca in reply to charks]

I am injecting every other day perhaps I should inject every day?

[Litatamon]

I found during my loading period that taking magnesium helped settle things down a bit.

All the best to you.

[Mixteca in reply to Litatamon]

Yep, I take the glycinate before bed

[Sleepybunny]

Hi,

I was left untreated for years although I had many typical symptoms (over 50 symptoms) with neurological problems including some that affected my spine and I was in a very bad way, mentally and physically.

This was due to my serum B12 levels being within range apart from one well below range result in past and to GPs and specialists' ignorance about B12 deficiency.

I did at one point after the below range result get one set of 5 or 6 loading injections but then nothing else despite me putting a tremendous effort into getting treatment. In the end I had no other choice but to treat myself.

It took weeks even months of very regular injections to start to see improvement and I suspect this was due to the length of time I had been left untreated.

Hang in there and I'm sure you will start to some improvements soon.

I improved for at least 8 years running after I started treatment but needed far more B12 than NHS treatment regime allows for.

I got a life back...it wasn't quite the one I expected as I have some minor neuro symptoms that are permanent and still get fatigued some days but it's a life I can enjoy and I feel incredibly grateful to the kindness and support this forum gave me.

Have you thought about keeping a symptoms diary?

It can be very hard to see day to day improvement but perhaps easier to see improvement if you compare month to month or year to year.

Some keep a daily symptoms diary. If this is too much maybe a weekly symptoms diary would be easier. Pick up to ten symptoms and score their severity each day/week.

Folate

Your folate is not that far up the normal range.

Are you eating plenty of folate rich foods?

Have you asked your GP if you would benefit from taking a folate supplement with the RDA (Recommended Daily Amount) in it? Local pharmacist may be helpful to talk to about this.

Has your GP given you a full set of iron tests or have you just had ferritin?

Link about iron tests

labtestsonline.org.uk/tests...

[Mixteca in reply to Sleepybunny]

So sorry it took you years of battling with PA. I'm usually a fit and healthy person, so this has knocked me down for six and came as a shock. I think the issue is malabsorption, it seems to run in my family - history of ID anaemia and rheumatoid arthritis, sister with hypothyroidism on top (we've both taken the SI take control option).

FYI - I've been taking L-methylfolate, B-complex, Vit D & K2, magnesium glycinate and iron as citrate. I didn't take 5mg folic acid. Being very ill last week sent me into panic mode and I was doubting my vitamin regime. All of this is bought online, nothing's from my GP - don't wanna go there, too much of a trigger and an ongoing battle. Been pushing for full iron panel/homocysteine etc. Hit a brick wall so far.

I keep a symptoms diary of sorts, what I can manage. Use that fab Visible app too, which keeps tabs on severity of symptoms. I have seen improvements then things seem to explode a bit again. Ups and downs. I was in a bleak place when I posted this and now realise how vague and not specific about the help that I needed.

Glad that you got back some semblance of a life! I've a long way to go I think.

[Sleepybunny in reply to Mixteca]

It's possible to get full iron panel and homocysteine tests etc privately in UK.

Some NHS GPs won't accept private blood test results but I think private tests that show something significant should be enough to nudge NHS GP to order the same tests.

If it's difficult to communicate with your GP, maybe you can put your queries about tests etc into a short letter to them and keep a copy for yourself.

I don't have a confirmed PA diagnosis just acceptance by my current GPs that my symptoms in past suggested B12 deficiency and B12 treatment has alleviated my symptoms.

[Sleepybunny in reply to Sleepybunny]

Maybe you could talk to your local pharmacist about folate supplements...

Thread about Patient Safety, has lots of useful links for people having difficult health experiences in UK.

healthunlocked.com/pasoc/po...

[Mixteca in reply to Sleepybunny]

Thanks. I did look into that a while ago, cannot remember what I found out thanks to brain fog. I've had 4 months of issues with the surgery and have even been considering taking legal action against them.

[Mixteca in reply to Sleepybunny]

I've now just remembered that I'd found your post and followed the links. What a star!

[Mixteca in reply to Sleepybunny]

I know, I did a few with Medichecks. It's beginning to be an expensive business and if I have to I will if they refuse. All of my communication with surgery has been either online or via letter, that's how I communicate best and I get everything in writing - I have a small library growing, including 3 complaints. Not helped me yet sadly; overworked, staff shortages/absences...I have spelt it all out to them from day 1. I need to focus on treating myself and getting some more bloods done.

[Mixteca in reply to Sleepybunny]

Do you know of a better place than Medichecks? I wasn't impressed with them at all.

[Sleepybunny in reply to Mixteca]

Sorry not sure who might be better.

Lots of choice if you search online for "private blood tests uk".

[Nackapan in reply to Mixteca]

After the wait dismissal from various gps.I totally get the stress you are under and the anxiety panic feelings.

Sounds like your automic function coukd be involved.

Avoid methylcobalabin or that fire of folate .

And high doses of b6.

Only my opinion.

As good to take some supplements out to see if any change.

It's a minefield self treating.

In Hindsight when I was initially bedbound I 'overdid ' supplements.

Nothing high dose apart from b12 .

For me discovered ferritin was low after asking it to go on my blood test.

Raising that took a while bit stopped the jitters .

It was the the neurologist that helped.

He gave me the confidence to carry on with every othef day b12 .

He said it will take time.

No quick fix .

Well I'm nearly 5 years in.

A long road.

I went to a busy supermarket yesterday.

Stood for s second as felt surreal.

Too much going on .

But I wax there and left with what j wanted.

Hang in there .

T c