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 Weena1 » Fri Aug 24, 2012 8:09 pm

Ceri,

I've just noticed you said you have a vit D deficiency. Ask for an injection. They ate available but you need to push for this. I've recently found out I've got one too. I had a bone scan which revealed this. If your slim you may want to check this out too. Vit D deficiency causes depression & fatigue (fact)


Christina
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Re: Ceri's Story

Postby Hayedwards » Fri Aug 24, 2012 9:27 pm

Hi Christina....

Thanks for the info. You sound similar to me. I was told I had a B12 deficiency 10 years ago...and I had health problems on and off with some really bad patches, but the year prior to starting injections was the worst....as was the few months after the loading doses wore off....

When you self inject, what type of B12 do you use and what type of needle? Because I tried 2 types of B12 before this one, and they did nothing, which was disheartening considering I felt great on the loading doses, but these new ones (the white packet from GoldPharma, hydroxycobalamin) have helped a lot so far (although still nowhere near completely better). Also I'm using insulin syringes when really they should be intramusclular to get into your system properly....but if you use insulin syringes go all the way in with the needle and inject more frequently. I really hope this works....I feel as though I've had what should have been the best years of my life stolen from me, and it's far from over....I almost feel like I'm greiving for those years.

I will ask my GP for a D3 injection, I'll send off my hair sample to test your intolerance (I discovered that website a while ago and meant to do it but forgot), and I'll push for another Coeliac test as well as a liver test.

I just look at other people who take their health for granted and can't help but feel envious.
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Re: Ceri's Story

Postby Weena1 » Sat Aug 25, 2012 8:21 am

Ceri,

I ordered my B12 from mycare. Hydroxy. It comes in a white box also . Pascoe I think is the brand. 100 1ml vials, 1500ug strength. Could I ask you what brand B12 you ordered from goldpharma? I'm going to play around with my next few orders and try to Suss out if some are better than others. I felt awful when I started getting my loading doses. Back pain & joint pain really flared up. I would go home to bed after each injection because I was so tired from them. Then approx a week after my last jab I started feeling a lot better. This only lasted about 3 weeks tho and I crashed again. I haven't since been able to pick up again despite injecting constantly :(. So I'm totally with you there. Desperate to see some results & feel better but I feel so upset and annoyed that I'm not just improving.

I too feel like the last 6/7 years have been a total waste. My life has been seriously ruined my my health problems and I also envy anybody else who doesn't have to go through what we do. I don't feel optimistic at all about the future because I can't bear to think I'm going to feel like this for the rest of my life.

I have had to become my own doctor, trying to link the pieces together because I have numerous health issues. I was meant to say yesterday that I've got oesteopenia too ( I was typing to fast and didn't make myself clear, apologies). I found that out on the off chance. I was meant to say that because you have B12 def and Vit D def then maybe it's worth asking for a bone scan yourself? It means you could be referred to an endocrinologist, they could do extensive bloodwork into thyroid problems and other autoimmune problems to see if theres anything there, ie hashimotos disease, graves disease etc. I had a load of tests for these done earlier in the week and I am awaiting my results.

I've also been tested twice for coeliac disease via a bloodtest though this came back negative, bu I won't know for sure unless I have an endoscopy. I am booked in to have a colonscopy in October tho to check for crohns, colitis etc.

Autoimmune diseases/disorders are usually responsible for B12 deficiency and that's why I've had/am having all this various testing done to confirm or rule out different causes.
Admittedly some people will never find out why they are B12 deficient. Though I don't have pernicious anemia.

I don't think your going to get peace of mind unless your doctors have checked you for as much as possible.

I really can sympathise with how your feeling. Having multiple problems just makes recovery that much harder.
I've had to really push for some of my tests. I get looked at like I'm being a hypochondriac, but the evidence is starting to pile up.

Have you seen a neurologist at all? If you have what have they said?


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Re: Ceri's Story

Postby Weena1 » Sat Aug 25, 2012 8:31 am

Also,

When I first started injecting I was doing subcut jabs using insulin needles. I didn't really feel any benefit from this at all so I swapped to IM. I use a 23 gauge needle, which is 1.25 inchs long. I usually get about an inch deep with these. For whatever reason I just don't seem to take very well to the subcut ones. They are easier than IM injections and most people feel te benefit from them but I just dont (and I don't know why).
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Re: Ceri's Story

Postby Hayedwards » Sun Aug 26, 2012 1:19 pm

Your situation sounds so similar to mine. It's awful that we have to suffer like this...however when I had my loading doses I was almost completely better on loading doses though so that has given me hope that maybe I just need the right combo of B12 , iron and folic acid to get better. I was progressing well on the Pascoe hydroxycobalamin, using insulin syringes up until a few days ago...then I seemed to go down hill, which is upsetting as I really thought I had found the answer. They are doing a blood test in 3 months to see if my D3 deficiency has affected my bones, at the moment I ache all over.

I am going to ask for a Coeliac test and also to get my bilirubin checked out. In the meantime I'm going to see if the bowel problems seem linked to wheat products and will cut them out of my diet if they are.

I think I either have Coeliac leading to pernicious anaemia, or pernicious anaemia leading to stomach problems, liver problems and all the rest of my symptoms.

I'm worried about this D3 thing though, I'm starting to think I have a condition that means I can't absorb any of my vitamins...is there such a condition? I read up on osteopaenia and it is linked to conditions that stop you absorbing vitamins properly....

I get really angry when I look at all those wasted years due to all of this, and then I fear that the future will be the same or worse...I really hope not, I'm trying to stay positive and do all I can to sort this out and get better.

Another symptom I get, which really gets me down, and I'm sorry if this is really personal, but it seems to be linked up with the bowel issues, I keep getting this intense soreness, stinging and burning in my vagina....and it seems to happen after going to the toilet properly, when the stomach problems are there....(as they are on and off)....does anyone else have this, I've been getting it on and off for almost 2 years, I have phases where I don't have it and phases where I do. I was diagnosed with vulvodynia, but I think it is more linked to this.
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Re: Ceri's Story

Postby Weena1 » Mon Aug 27, 2012 8:47 am

Hi Ceri.

Coeliac disease can cause B12 deficieny and vitamin D deficiency. Crohns disease and other bowel diseases can cause this too. There is a condition cause malabsorbption syndrome and again can cause various vitamin deficiencies.

Lots of people are intolerant to gluten anyway even if they don't have coeliac disease. I think it's grains in general which cause problems for certain individuals. But if u ever do end up having an endoscopy then you need to keep gluten in your diet until you've been investigated, otherwise your intestines start healing and may appear okay.

See what comes back from that and if your okay, then ask to be referred to an endocrinologist to have other tests done.
If they agree to do extensive bloodwork for you they can check for most other autoimmune problems.
Don't get me wrong you may not have any other problems (health wise) I really hope you haven't because you are having such a tough time, but I think you will feel better knowing you have explored every avenue possible.

I have definitely got an absorbption issue, I'm just trying to figure out what it is.

Could your women's issues be cystitis? I could be well off the mark there, and apologies if I am.
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Re: Ceri's Story

Postby Hayedwards » Wed Aug 29, 2012 6:35 pm

Thanks Andrea...Prior to going on B12 injections, for about a year leading up to that I found that it took me absolutely ages to go to the loo....I'd feel like my bladder was uncomfortably full, then I'd go to the loo and it would take ages for anything to happen, almost like my brain and bladder wouldn't engage. I'd then come back paranoid at work because I'd taken such a long time. However this has gone since I've been on injections...

Weena...I will definately ask for another Coeliac test when I go to the doctors tommorow and I'll ask about whether I could have a malabsorbtion problem. In the year and a half leading to me going on injections I did get recurrent cystitis...I don't seem to get it anymore....but I do still get this vaginal soreness...that seems to be linked to when I'm feeling generally ill with everything else....when my B12, iron, B6 etc is okay and I'm keeping on top of that it gets a lot better...but is always there slightly.....the conclusion the gyno came to in the end was vulvodynia....which I think is probably linked to the nerve damage from pernicious anaemia...and worsened by the other problems.

Personally I think everything is down to PA...and I hope that is all that is wrong, because once I'm on top of that I should be better!
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Re: Ceri's Story

Postby Hayedwards » Thu Aug 30, 2012 8:58 pm

Went to the doctor's today and they are going to test my liver...although she is pretty sure it's not that, they've ruled out Coeliac's disease, and they've told me my D3 deficiency is severe, so she is going to look through my history to see what I have and haven't been tested for to find out why I have had deficiencies in B12, D3 and iron. They are being thorough this time...finally!

Meanwhile I'm continuing to self inject every other day, I take an iron supplement that has extra vitamins added to it ie vitamin C, B1, B3, B6, B12, folic acid and calcium. I also take folic acid supplements and a B6 supplement. Since I've been back on the iron, I've been heaps better...all the stomach issues have settled down and I'm a lot less breathless and foggy headed. I have made drastic improvements and feel so much better than I did a month ago when I was at death's door. Everything has improved. I still have some of my symptoms though but they are a LOT milder than they were!

One more thing though....it's really important that I take these Adcal D3 tablets, but I've noticed there is a warning on them for if you have a peanut allergy....I don't have a proven allergy to anything but I do suffer from idiopathic angiodema so have been avoiding anything majorly high in histamine or salicylate...ie nuts and shellfish...so am a bit scared to risk them (always a problem I know). Should I buy calcium and D3 from Holland and Barratt instead? They have no warnings like that (and Holland and Barratt always put warnings on if it contains anything people may be allergic to). They are calcium and D3...will they be as strong etc and as high in D3 as I need them to be?
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Re: Ceri's Story

Postby kimks mom » Fri Aug 31, 2012 2:21 am

Hi Ceri,

It should list on the bottle the strength of the D3 and the calcium. I don't know if it would be comparable to what you have but if you have managed the idiopathic angiodema by avoiding those foods high in histamine or salicylate, then Holland and Barratt Calcium and D3 may be better for you. Look for comparable strengths. For example if the Adcal D3 say D3 strength is 3000 IU this is what you should look for in the Holland and Barratt and a similar amount for calcium.

Glad you are feeling better on the iron supplements. It really does make a difference if you are low in iron.

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 » Fri Aug 31, 2012 9:48 pm

Thanks Pat. I really think I'm on the right road to recovery again now.

Hmmm, can't seem to get the strength of D3 I need from Holland and Barratt, I'll ask the pharmacist. Also what strength iron and B6 should I be on?
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Re: Ceri's Story

Postby kimks mom » Sat Sep 01, 2012 3:05 am

Hi Ceri,

Quite a few of our members take Spatone because it is a natural form of iron. It is a powder and sold in packets..you can mix it with water or a juice. Boots pharmacy sells it at the best price, I think.

What ever B6 you take, don't exceed 100 mg per day. B6 is the only B vitamin that you can get too much of it. I use a B complex because it covers the rest of the B vitamins.

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 Poacher » Sat Sep 01, 2012 7:25 am

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Re: Ceri's Story

Postby BeeNumber12 » Sat Sep 01, 2012 2:23 pm

In the USA I buy it as PurAbsorb, liquid in packets.
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 Hayedwards » Sat Sep 01, 2012 7:12 pm

Thanks for this info...Ive bought a D3 spray and have some calcium tablets with a smaller amount of D3 added to it. Also taking Spatone (yes they're packets with a liquid inside), and a vitamin supplement that contains most of the B vitamins, iron, folic acid and calcium and I'm also taking folic acid and B6. Hoping it will help. Even though I'm still not well by a healthy person's standards, I have noticed dramatic improvements over the last month. I inject every other day. I just hope I don't have an absorbtion problem that means I'll have to have all of my vitamins injected!
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Re: Ceri's Story

Postby kimks mom » Sun Sep 02, 2012 3:33 pm

Ceri, make sure your B6 does not exceed 100 mg per day. There can be problems with this because too much B6 causes symptoms like B12 def. B6 is the only B vitamin that buidls up in your body and you can get too much of it.

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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