Ceri's Story

Post your experiences of Pernicious Anaemia here. No two people with PA are the same, and sharing your experiences and reading others' may help you through this.

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Re: Ceri's Story

Postby Hayedwards » Mon Jun 11, 2012 1:44 pm

Thanks Andrea....

I'm in the West Midlands, so nowhere near....I could check her out though....I'm going to go back and ask to be referred to a haematologist first though as this is getting really worrying.
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Re: Ceri's Story

Postby Hayedwards » Mon Jun 11, 2012 3:00 pm

Thanks.
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Re: Ceri's Story

Postby BeeNumber12 » Mon Jun 11, 2012 4:51 pm

Ceri,
I once had very little improvement on my injections of cyanocobalamin. I kept pestering the idea of what could be different. I found that the multi-dose vial (30 mL ) was at or very near its expiration date. The use of a new bottle having an expiration of one year away improved my reaction. Maybe even call the manufacturer or email them to see if other's have had problems? Sorry, can't remember where you purchase yours.

While trying to find solutions, If it were me, I wouldn't stop the injections. Maybe it will take longer this time. :scratch:
I hate to repeat old stuff cause I'm betting you already considered whether all your cofactors or the things that help methylation are in order. Keep us posted, please.

Dorothy
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: Ceri's Story

Postby Maudy » Mon Jun 11, 2012 5:25 pm

I'm only just skimming this so forgive me if it's been made clear, but, were your loading doses hydroxo and now you are on cyano?

Just asking because when I was on methyl tabs I improved no end. I then took cyano tabs for a couple of days and I was terrible. Not only did I feel bad but the running eyes were back with a vengence. For me, they were just awful!

There is also lots of other stuff to consider but as a starting point...
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Re: Ceri's Story

Postby JDee » Mon Jun 11, 2012 5:51 pm

Hi Ceri.

Sorry that you are still not feeling any better. This is such a personal condition - the balance of all components seems to be very individual. :roll: Once you have sorted out a regime you will no doubt start to feel better but getting there is the challenge.

You are on folic acid and iron tablets? Have you had your potassium checked at all recently?

This link gives a few details (sorry if it seems a bit hard-hiting but I don't mean to say you are that deficient but just maybe enough to be feeling a little unwell).

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001510/

B12, folate, iron, potassium, thyroid etc - so so complicated!!!! :o :doh:

Jac
Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
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Re: Ceri's Story

Postby Hayedwards » Mon Jun 11, 2012 7:56 pm

Thanks....

My loading doses from my GP were hydroxycobalamin, then the injections I had off Dr Riar were methylcobalamin, which did nothing....to be honest I think I felt worse....so I switched to buying hydroxy from GoldPharma. Not sure of the expiration date. I'm also taking folic acid and iron.

Looking at it, it could be that my B12 is still not right so my symptoms are still PA....or it could be low potassium, or maybe I have something like a thyroid problem or another autoimmune condition. I think I'm going to leave things as they are for a while until I have seen the haematologist to find out what the flip is going on with me....
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Re: Ceri's Story

Postby Maudy » Mon Jun 11, 2012 9:03 pm

I think as well it may be prudent to have your iron levels checked again.
I know you said in your first postings that your iron was low but if you've been supplementing it does need to be checked.
Says she who never gets hers checked but then I only take one tablet a week.

There are quite a few similarities in our background. I had gyno pain as well. It stopped after I started self medicating. I also find it difficult to use both mobile and cordless phones. Cordless make my ear go red. Really, really, red. And mobiles make my head spin. Also they don't seem to like me back. I have to use speakerphone. If I pick them up people can't hear me.
I won't have wifi either.

Also your comments regarding body sprays etc. I splashed out the other week and bought hair spray. That won't get used. My face just, oh, I don't know. It seemed like every pore opened up. Took me a week to sort it out.

I do think a visit to the haematologist is in order here. Something seems out of kilter.

I'm always surprised when I hear of people saying methyl doesn't suit. I'm just biased cos I love the stuff!!!!
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Re: Ceri's Story

Postby Hayedwards » Tue Jun 12, 2012 8:17 pm

Yes I think I will do....I am having symptoms like chest pain and some slight breathing difficulties...I remember having this for a brief while straight after my loading doses...so it could be low potassium. It's all very worrying.

Maudy....it's amazing how similar our symptoms are especially the ones that aren't automatically associated with PA...

I can't believe that for so long I believed I was just suffering from depression when the whole time my body was falling apart. At the moment I barely have the energy to function, I am so dizzy and disorientated and the angiodema and chest pain are so bad that it is dangerous for me to go anywhere. I go to work, (I work in a hospital and have dropped back to being part time) and occasionally I leave the house, but don't feel safe without a family member who is "in the know". I've been this debilitated for months now and it's hard to imagine I'll ever have the indepdenace and the safety in my own body to live a normal life ever again....I feel so low about it at the moment....I don't know how I'm coping with it at all....I know it sounds negative but it really has ruined my life.
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Re: Ceri's Story

Postby Maudy » Tue Jun 12, 2012 8:39 pm

It's this sicky thing that bothers me.

I've tried to go back over your story to save you repeating yourself but I only got about 3 pages...

Why were you taking the magnesium?

Have you had d3 levels checked?

Are you on any d3 supplement?

Are you taking any other b vitamins?

I'm not one of the 'typical' 5mg folate people. My levels were just out of deficient and I find it I take one a week, I seem to do all right.
I haven't got a clue what my levels are though.

The only time I ever felt sick in all of this, was when I took the calcium/vit d supplement. And at the time I hadn't got a clue I'd got the b12 deficiency.
Back end of last year I discovered why I was ill on the calcium/vit d (although I'd been treating myself for it from earlier in the year) and I still maintain, that even if my b12 level had been treated but my vit d problem hadn't, I would be very ill.

Then again, you may have something completely different.
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Re: Ceri's Story

Postby Maudy » Wed Jun 13, 2012 5:21 am

Another thing I thought to ask last night was, can you tolerate soluble tablets - the big fizzy jobs?

I've not been able to tolerate them for years. Remember being ill back in 1995 when I took one at work.
They contain bicarb. Which is back to the alkaline problem.
So, if they give you an upset stomach, it's another indicator that this could be part of the problem.
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Re: Ceri's Story

Postby Hayedwards » Wed Jun 13, 2012 2:47 pm

I was on magnesium just after I went to Bridgend....it was one of the things that was put into the infusion and Dr Riar suggested taking Iron, Folic acid, Magnesium, Vitamin C, Omega 3 and a probiotic....I felt sick for about a month until I decided to stop taking the extras....I now only take folic acid and iron tablets. Since then I still occasionally feel sick but it tends to be on the days I have remembered to take my iron tablet (honestly my PA is so bad that I even forget to take tablets)....but I will only be on them for another couple of weeks......I'm not sure if the injections have had a part in making me feel sick....but....I've given myself the same as when I had the loading doses, so I'm going to give it a few days to kick in and my next step now is to see a haematologist.....
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Re: Ceri's Story

Postby Maudy » Wed Jun 13, 2012 3:01 pm

Yep, I would think a haemo (can't spell today) would be a good idea.

You could also ask if they would check your vit d3 levels?
The results of this particular test usually takes longer - however if you wanted to have it done privately it costs about £25 and is a spot test that someone is mentioning on here. Somewhere.

Hint. At this precise moment in time try not to waste your energy (or b12) in getting angry, focus on trying to get well. I'm not saying your not right, and I'm not saying you shouldn't rant, but give your health the priority. You can get angry later.
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Re: Ceri's Story

Postby Hayedwards » Wed Jun 13, 2012 8:19 pm

Thanks Maudy...you're right....I'm on a bit of an emotional rollercoaster at the moment, swinging from just peacefully wanting to get well, to accepting the status quo and being hopeful things will improve somehow, to being positive, to being extremely worried, scared, angry, frustrated, depressed....all over the place really. But yeh, I think I need to channel my energy and everything I have into getting well....completely....in a real holistic sense. We learn something from every experience we go through and everything happens for a reason, I've had so much support on here.
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Re: Ceri's Story

Postby kimks mom » Thu Jun 14, 2012 1:12 am

It very well could be the iron tablets that are making you sick as Iron supplements are prone to causing nausea and stomach upset, except for Spatone.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: Ceri's Story

Postby Hayedwards » Thu Jun 14, 2012 7:08 am

Thanks...I'll bear that in mind....however I won't be on them for very long now....

I still don't understand why I don't feel any better being as I've given myself loading doses though? It's really strange....however last time if I remember right I didn't feel that brilliant straight after, and then about a week later I was bouncing off the walls, so maybe that will happen this time....I'll give it a week to see what happens.
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