Year 2 into PA Diagnosis Please Help ... - Pernicious Anaemi...

Pernicious Anaemia Society

23,360 members16,455 posts

Year 2 into PA Diagnosis Please Help ! My Husband said he feels like he is slowly dying 😪

Suchadrain
Suchadrain

My husband is in year two of his diagnosis, positive IF test Vit D deficiency and folic acid, he has completed the courses 3 weeks ago of tablets and SI twice weekly B12. He said he feels absolutely terrible pins and needles, hip pain and said he can feel his heart beating throughout his body head and ears. I feel so desperate as he said he feels like he is slowly dying we have had to fight for years to get the diagnosis, been treated like he was work shy, depressed, all other manners of things suggested but he is “ill” and no one is listening. Sorry for the waffle but I am desperate and he is slipping backwards his cognition is impaired and he makes no sense again as well as looking shocking

21 Replies
oldestnewest

I'm sorry your husband is suffering.

I'm in the same time frame.

Going by alot of posts it can take si much longer to improve the I eas expecting or indeed told.

I've recently increase my injections to try and get improvements.

Tablets wint help him as he will not be able to absorb them . Its suggested 1000mcg csn possibly be passively absorbed. So stick to that dise and see.

Has he had recent bloods done to see if iron folate and everything okay?

Does he read posts on here to know he is not alone.

I've had another rough day today unable to move from my bed.

Yesterday had bloods done a a food shop as I'm the only driver.

Snakes and ladders.

I get hip pain and really have to make myself move and do a little pysio.

Ha s he spoken to his doctor or is that getting him nowhere ?

Mood swings and irritability par for the course.

Is he in 'the system and under a neurologist ?

The cognitive issues sound bad.

Has he considered doing every other day b12 injections for a while again?

Is he depressed?

Just ideas . I know how hard it is .

I'm sure others will come along

Very sorry to hear that - I know how frustrating it is to fight for correct diagnosis. The only thing I want to say is keep fighting and looking for a “right” doctor who will be able to help.

Suchadrain
Suchadrain in reply to Tuscansun

Thanks for the support, I really am so thankful for this site and we will keep fighting

So sorry you are in such a hard situation. Sending good thoughts!

Suchadrain
Suchadrain in reply to Emmers5

Thanks Emmer5 , I feel ready to keep battling after off loading on here and speaking to people who totally understand and I am just a bystander so can’t imagine what it feels like but if my husband is a glimpse of you guys on here then it’s torture! Not just the condition but trying to get the right treatment and self management.

Hi maybe he needs SI every other day to reverse the long term damage suffered

Suchadrain
Suchadrain in reply to CarlaEP

He’s agreed to go with the every other day SI !!

CarlaEP
CarlaEP in reply to Suchadrain

Bless👍well I hope this helps your husband and then you may feel less stressed and upset too. Good luck

Hidden
Hidden

Low potassium could be a possibility. The folate and B12 get blood cell production going faster and use up a lot of potassium. I would get him on a good B complex with a good dose of thiamine (B1) - 100mg if you can - and some potassium pills at 99mg. Running out of potassium is well known when you start taking B12. you need the thiamine to hang on to the potassium in your body. Iron and zinc are other essential co factors for this treatment to work.

fbirder
fbirder in reply to Hidden

People should never take potassium supplements without a doctor's advice. Too much potassium can be worse than too little. KCl is used as part of the mix in the injections they use to execute people in the USA.

Nobody should need to take 10,000% of the RDA of thiamin.

Litatamon
Litatamon in reply to Hidden

One should never take potassium unless a doctor has advised one should take it, and even then it is closely monitored.

I know fbirder has already noted this issue. Simply want to make sure it is not overlooked by anyone reading.

Suchadrain
Suchadrain in reply to Litatamon

Thank you , he’s decided to stop all supplements and stuck with the SI every other day and see how things go, funnily enough he’s having a good day today after no supplements since Wednesday- he’s cutting the grass !!!! Coincidence? Well I’m just grateful for whatever it is even for just one day🙏🏼

Litatamon
Litatamon in reply to Suchadrain

So relieved for you both that he is having a good day.

--------

From reading Could It Be b12? I have confidently come to the conclusion that people can and shouldn't hesitate to a do a restart. Meaning going back to loading and starting on a better schedule for their symptoms. Of course, I am not medically trained but it still is what I believe.

There is a case study in there of a man named David. He went through hell for years. Got help but then "You're fine now", back and forth nonsense.

This man literally went back to loading and either did every day injections or every other day injections for an extended period of time. A year or two? And changed his life.

If I didn't have a b12 issue I could remember the details more clearly for you, smiling. But his name was definitely David!

Also, if your husband does go back and do a restart, or anyone else reading, I strongly believe that the refiring of nerves can be a very painful experience for some. What seems like a setback can be healing.

--------

Listen Suchadrain, the man is blessed to have you! Go, go tell him! Remind of his daily gift!

All the best to you both.

Hi,

I've assumed you're in UK but surprised he had a course of oral tablets from GP.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF

bnf.nice.org.uk/drug/hydrox...

Please think about joining and speaking to PAS who can offer support and info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic but it may be possible to speak to speak informally to group co-ordinators.

B12d.org is holding some online meetings during pandemic.

b12d.org/event

Lots of useful info on B12 Deficiency Info website.

b12deficiency.info/

I wrote very detailed replies on another forum thread with a lot more B12 info eg symptoms lists, causes of B12 deficiency, PA tests, UK B12 guidelines/articles, letters to GPs etc which I think you will find interesting.

healthunlocked.com/pasoc/po...

UK forum members have reported issues with getting b12 treatment during pandemic.

If you're in UK and feel pandemic has affected his treatment from GP see the following link to another forum thread where I left a reply about impact of pandemic on treatment.

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.

healthunlocked.com/pasoc/po.....

I'm not medically trained.

More B12 info in pinned posts on this forum.

So sorry to hear how ill your husband feels. I can honestly relate with him feeling he is going to die, as will many people. I for one felt so ill prior to being diagnose, I told my husband that I was going to die. Being diagnosed can be such a sense of mental relief. What I would say, it is indeed a roller coaster And that never goes away, plus it takes some time to feel well, then it's good and bad. I self inject inbetween my GP prescriptions and many people do this just to feel a bit better. I think your husband should speak with his GP, perhaps you could go with him, armed with information from this forum. Wishing your husband well, and hugs to you as this must be so hard xx

So sorry your husband is suffering, mine is too. I feel your pain. We also had problems with our GP too.. I wish GP’s were more understanding about debilitating this is!

Wishing you lots of luck 🍀

Suchadrain
Suchadrain in reply to Neddot21

And wishing you good luck too it’s horrible watching their suffering x

Cherylclaire
CherylclaireForum Support

Many of us here can remember feeling as if we were slowly (or not-so-slowly) dying from symptoms that were attacking us in an unpredictable way. These symptoms are often not recognised by GPs or indeed consultants as being related to B12 deficiency at all, many of whom seem to believe that lack of this vitamin will mean little more than tiredness.

I first went to the GP with exhaustion (far beyond tiredness), hip/lower back pain, daily diarrhoea at the beginning of 2015. A year later, I was found to have B12 deficiency. later low folate and ferritin, and later still osteoporosis of the spine so vitamin D needed too.

In spite of the treatment, everything got worse. One injection every three months after loading dose finished was not able to help me. In September 2016, I bought Martyn Hooper's book "What You need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" - and read his autobiographical chapter. I recognised myself there.

I was off sick for over a year. Physically, mentally, emotionally drained- totally unable to function. Sleeping a lot - 14/15 hrs, naps in afternoons. Waiting for a life. My MMA was tested and found to be raised: I got a diagnosis from my GP, confirmed by the lab, for functional B12 deficiency. I was put back on a loading dose: 2 injections a week.

This led to improvements and this frequency continued for a whole 6 months -and then I got worse again. My GP reduced my injections to 1 a month while sending me to various consultants. A locum haematologist advised my GP against giving me more than 1 injection every 2 months "as per guidelines".

Eventually, and rather reluctantly, I decided that only I could get myself better and back to work, and started self-injecting on a reloading frequency: every other day for over 2 years. I went back to work on a phased return and now work 2 days a week. It took a very long time before I saw improvements and they were gradual. I have now reduced the injections to every third day. It does not always do the trick: I can still overdo things. Further apart than this makes me worse - currently.

I have had thumping heartbeat keeping me awake at night - in ears, inside head, neck pounding. I have been told at a pre-op that I have sinus bradycardia (slow heartbeat). Jumping awake suddenly at night with heart thumping wildly. Then all this got very frequent (every day and night) and I had a 24 hr heart monitor: ventricular ectopics - a signal inside heart which is running too fast. No known reason, can start on it's own, stop on it's own and is not dangerous - which is why I refused betablockers, which are the suggested treatment.

It is gradually going on it's own now.

I would recommend that you read Martyn Hooper's book, that your husband has his heart checked in case this is something individually treatable whether connected to B12 deficiency or not, and to ask for a methylmalonic acid (MMA) test to see if B12 is working at cell level. Renal problems need to be ruled out as cause of raised/high MMA - can be done by blood test first.

MMA, likely to be high when deficiency discovered, but should go back to normal levels within a week of injections having started. Mine was still raised 8 months after injections started. Worth checking to see whether he is getting the full benefit of the B12 .

L/H hip pain, which was once so bad I could not stand up straight - now gone.

This has been my experience. I'm not medically trained.

It can be a frightening condition, made far more frightening by the lack of understanding within the medical profession, unfortunately to be found at all levels. An understanding partner who is looking for the answers, or even the questions, is an absolute lifeline.

Not easy to live with - for either of you. Best wishes.

So sorry for his suffering. Have other issues been ruled out: thyroid function, autoimmune disorders, food sensitivities (gluten, dairy, etc.), nutritional status as a whole....the list goes on and on. For me, PA was a big piece in the puzzle regarding my poor health but just one piece of a very complex puzzle. Sending healing thoughts and prayers.

Bless you all on this site you give me the strength to hold things together for him, sending you strength xxx

I'm so sorry; what a horrible thing to go through. B12 tablets that are swallowed will not help. But I have PA and I manage my B12 levels with sublingual (under the tongue) tablets so the B12 is absorbed into the blood vessels under the tongue. I take Jarrow 1000mcg B12 with Folic acid. every day and I have been able to stop injections. (I have no connection with Jarrow - I mention the brand because another brand I tried did not work for me.) It is worth trying a sublingual tablet!!! If it works for your husband it means you do not have to worry about injections. The dose is high but obviously not all will be absorbed. Keep the tablet under the tongue as long as possible. It can take an hour to dissolve but get on with something else and leave it to be absorbed. Good luck!!!

You may also like...