Hello! Another Newbie, and my story so far...

[Laverdista]

Hi all,

A brief introduction, and potted history of why I'm here! Sorry if it's a long read - I'll try to condense it! I have posted a bit of Facebook recently (so you may recognise my story), but was told that the PAS forum was the mnost reliable, and I've now joined the PAS!

Have had various diverse symptoms which I now know to be B12 deficiency, for at least 2 years - leg cramps, brain fog, unexplained surges of blood pressure (I've tried 9 different anti-hypertensive medications, after experiencing short-term improvements which then stopped working for no apparent reason).

I say 'at least 2 years' because I had a 'well man' blood test 2 years ago, which (for the first time, after countless standard blood tests from my GP over the years) showed B12, Folate and D levels. At the time, my active B12 was just in the normal range, and so was not flagged up. My folate was 5, so again was not flagged up, and my D was 56 so WAS flagged up as deficient. My other blood counts were normal apart from raised MCV. Sadly, therefore, I ignored the results until 2 months ago.

I noticed I was having severe memory problems (I joked with my wife that I felt like I had dementia, but put it down to a recent steroid injection in the ankle). I then started struggling for words. I'd get to the middle of a sentence and forget what I was talking about, or use the wrong word. I (and this was by far the most distressing symptom) found myself facing days and days of the most profound sadness - I was crying 15-20 times a day. I probably cried more in two weeks than the entire rest of my wife. I was pushed to feeling suicidal, because I just couldn't cope with the constant feeling of unease and sadness.

I flagged this with my GP, who reluctantly agreed to do some blood tests (not full) and gave me a temporary prescription of propanalol and then diazepam. I hated both of them (the diazepam most, because my head felt stoned, but I still felt the deep uneasy jittery feeling in my chest and stomach. The bloods came back normal (apart from raised MCV again), so the GP just said to monitor it, and that they could look at SSRIs in due course.

Feeling convinced it was not just depression (had depression many years ago, and this felt entirely different) I lost faith in my NHS GP, and contacted a private GP, who told me to take athyroid blood test 'just in case'. The thyroid test came back normal, but the 'extras' included in the test were B12, folate and D. The folate sample couldn't be tested, but the active B12 was the same as 2 years previously (43) so still normal, but only just about, and D was also low. The private GP told me that I didn't strijke me as someone who was depressed, nor as someone with anxiety disorder, but still wrote me a prescription for Sertraline.

I then, off my own back, decided to get a full well man test again, 3 weeks ago. The results of that were that my active B12 was even lower (33), my folate was 2.6(!), and my D still low as well. I sent the results to my GP who told me that I shouldn't take any notice of the results as they were probably low because I hadn't been eating much (loss of appetite another symptom - Have lost 10kg in weight in 8 weeks), so I should ignore them! 😡

I finally did a search for low B12 and symptoms, and voila, there were all the symptoms I'd experienced. I decided I wasn't ready (or didn't have enough confidence) to self-inject on my own, plus felt I needed to find at least one medical professional who would take me seriously (my NHS GP is still refusing to give me injections), so I went to see Dr Klein in Cambridge a week ago. I've now self-injected 3 times (he put me on EOD injections for 3 months at least, and am taking the various co-factors as well. So far there it's been a bit up and down (to say the least!), but am hoping for reassurance and guidance on here from those who've been through it before, and hopefully come out the other side. I have a lot of questions! 🙂

Thanks for reading this far!

[Laverdista]

Last blood tests

Test results

[Treesong2023]

Welcome! - there are good folks in here who can and will help as you progress back to your health - you are classic case! - in fact, we all are

A wild guess... can I kindly ask if you have you ever had lots of tummy troubles?.....Food related issues..? Acid Reflux...use of PPI's - Gastritis ? ...GERD maybe....? and what is your diet like?

I have read your symptoms and see all the clear and classic signs - of LONG TERM ...Folate..B12 ..Vit D etc - DEFICIENCIES...

We have learnt in here that these deficiencies drive major psychologiocal, neurological and physical symptoms - You did so well going to Dr Klein - well done !

Given your symptoms - i think ( like myself ) you might have to think of this a journey of improving health over many.... years. Many in here build their own regime - for dosage levels and frequency. I strongly suspect that once you engage in here and trawl around in the posts etc - you too might consider you can steer your way back to health with Dr K's help.

[Nackapan in reply to Treesong2023]

Hello .You are in the right place .

In Hindsight my first sign of a problem for me was vitamin D being low .

My 'well women 50+ check did not include B12 and folate ( ususlly done on the same assay.

I find this incredibly short sighted.

You don't mention your diet .

Glad you are taking your own health in hand.

All of your symptons sound familiar.

Get every test to rule other things out too.

It takes time to heal nerves .

I too was offered many anti depressants.

Sertraline offered 4 times.

I even paid and got it once !

Changed my mind as knew i wasn't clinically depressed.

I did try amytripyline in s crisis of a migraine after a111 call as again had it but not taken it .

That was pushed at me by 3 different doctors snd one neurologist .

It gave a few days relief as so drugged on 20mg once a day .

The neurologist wanted me up to 50mg .

Then thd migraines broke through znd j was so drugged I weaned myself off.

Never again.

It can be useful for alot of people.

Not me.

Diazipam . I wax prescribed 2mg ×3 a day .

I actually took 1mg ( pill cutter )

About 5 seperate occasions over 3 yesrs .

I wax very pleased to havd that to go to when my nervous system was so heightened/ waking up. I was in alot of pain and couldn't calm my brain.

Do take your folic acid .

I needed 400mcg .

Starting point 5 .

This was more than enough.

I also took a multuvit still as a sensible RDA

Still need daily vitamin D gone from 19 to just in range 72 I think last blood test.

Healing is not in a linear line .

Keep having B12 injections at regular intervals .

Keep a log of symptoms..

Have follow up bloods including iron and ferritin .

Vit D

Folate normally

Done with B12 .

B12 yoh nos don't need ax meaningless on Injections.

Loads at posts to read through and many many links .

Will be overwhelming so take your time.

Tc

[Laverdista in reply to Treesong2023]

Thanks for taking the time to write such a detailed response (and thanks to Nackapan and SleepyBunny for their replies as well!). Sorry for the slight delay in replying.

Yes, I have had (and still get) stomach issues as well, mainly of a 'run to the loo when I wake up' variety (without going in to too much detail!), and a generally sensitive tummy. This seems to have got even worse in the last couple of months (along with my other symptoms).

My most distressing symptom is definitely the depression/anxiety/breathlessness, although the blurred and dimmer vision (which is intermittent) is pretty distressing too. Thankfully have not had as bad nerve pain as a lot of you, although horrible cramps for 2 years.

Having had a really bad day today (feel awful) with anxiety (constant butterflies in stomach, heavy chest, breathlessness and shakiness), I feel like I'll never get better, but I know I don't really have any other option but to carry on self-injecting and taking the folic acid. I must admit that today I actually feel like I'm going backwards. 😔

A d to answer SleepyBunny, yes, I actually did pay to join the PAS as well. 🙂

[Treesong2023 in reply to Laverdista]

Hello again.... yes...i know the morning dash! Checking your stomach for allegies / gastritis, IBS etc would be a good thing... I hope you are able to hold down a plain but good diet? Sorry to hear you feeling rough. It is early days though..There is a known condition in B12 circles that is called reversing...or "reversing out" of your symptoms..that happens when the better metabolyte / nutrient balance comes into play - i mean the B12 and Folate etc. the good stuff!

From what i understand the body starts to ping itself up...to work more...to repair..etc. This can exaxcerbate your own symptom set as the body starts to repair and get stuff going... Everyone has their own symptoms set.. they are a combination of neurological (low moods/depression) and neurological (nerves incl nerves in the eye sometimes.) and more physical like leg cramps, body ache. Having those symptoms is SCARY! So, thats a normal response.

Please do read the info shared above and below ..do your research to learn how to fix you....and maybe also the work of Dr Chandy. He had several patients with sight and major depression issues and worse. With intensive B12 and their mix of co-factors - many of them had great recoveries - most had very good recoveries over time. Reading and understanding about your condition from help in here will help reduce the fear / anxiety i hope.

[Laverdista in reply to Treesong2023]

Thank you. As mentioned, my GP had prescribed me Sertraline. My hand keeps hovering over the packet, and I may still be tempted to see if it helps, but I keep telling myself that if I do take it and feel better, I'll never know whether it was the B12 deficiency that caused the depression (although I'm pretty sure it's at least partly responsible).

[Treesong2023 in reply to Laverdista]

They gave me Sertraline...i still have the box. Opened but not used.

I fell into terrible low moods two years ago, fearful and upset...anxious about all sorts of things....no self confidence...and so so tired.. But I knew I had not tend to depression before...i had my dips like anyone else...

So, I resolved - no more drugs for the symptoms...attack the cause...

So, ....plain diet for my tummy... a whole lot of B12 SI loading, folate, Vit B1,B9, Vit D, and Betaine to aid digestion....and walking exercise for my mind.

I did my first ( quite slow) 4m walk without sore feet a few weeks ago. My mood is way better too...

[Laverdista in reply to Treesong2023]

Thanks! 🙂👍

[Sleepybunny]

Hi,

Welcome to the forum.

I have problems typing so apologies for a short reply.

"and I've now joined the PAS"

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS members can access a members support helpline.

pernicious-anaemia-society....

PAS has several support groups in UK.

They're a good place to swap info.

pernicious-anaemia-society....

PAS website has lots of useful leaflets.

pernicious-anaemia-society....

I left detailed replies on this thread with lots of useful info.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Good luck with finding some answers.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.