Galixie'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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Galixie's Story

Postby Galixie » Wed Dec 09, 2009 3:32 am

Galixie
 
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Location: Seattle, USA

Postby anotherwithpa » Wed Dec 09, 2009 7:50 am

anotherwithpa
 
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Postby Galixie » Wed Dec 09, 2009 6:37 pm

Galixie
 
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Postby anotherwithpa » Wed Dec 09, 2009 8:05 pm

I think best way to explain is to say you are not now B12 def; Vitamin B12: 503 [200 – 1100] is good (mine does not get that high, even with weekly B12 jabs) and therefore your homocysteine is fine (which mine are aswell).

Homocysteine is only a useful tool to show B12 def, folate and or B6 def, is how I understand it. Basically if you are on B12 treatment (and not folate def) then homocysteine should be fine, its only useful to test homocysteine before B12 treatment.

If you have clasical autoimune PA then you will have antibodies, testing is just terribly unreliable, apparently so is testing serum B12 and one should realy have 3 tests in 3 different labs and take the average of all 3 to be reasonably certain of a realistic figure...Homocysteine is not a test that tells you if you have PA only if you are B12 def; IF antibody test is a positive diagnosis if positive, but not if negative.

See:
http://www.patient.co.uk/showdoc/40001009/

Autoantibody screen Intrinsic factor (IF) antibodies, if present, are virtually diagnostic of pernicious anaemia. However, they are absent in 50% of patients with pernicious anaemia. Gastric parietal-cell antibodies are present in 85% of people with pernicious anaemia, but are also found in 3-10% of people who do not have pernicious anaemia.

No test is a 100% tool to diagnose PA at this time, unfortunatly.
There are numerous other reasons why one may be B12 def, as you can see in the above article,

I hope this helps,
Marre.
anotherwithpa
 
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Postby kimks mom » Thu Dec 10, 2009 2:28 am

Hi Galixie and welcome,

[quote]I have read that high folate can cause other blood tests to come back normal so I have to wonder if my folate level was high enough to mask the PA. The test result says it was “>24â€
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.
kimks mom
 
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Postby Galixie » Thu Dec 10, 2009 3:24 am

Galixie
 
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Location: Seattle, USA

Postby anotherwithpa » Thu Dec 10, 2009 10:15 am

Hi,

You are not the only one, re:"I would rather have the shots every three weeks ". I'm not sure which form of B12 shots you get but there are loads here that do not do well on standard treatment. possibly solutions for some are to use sublingual tablets, to learn to self inject, confince their GP they need more and or have alternative (private) treatment such as infusion etc.

I learned to self inject and now have the freedom to look after myself and decide what frequency suits me..

Kind regards,
Marre.
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Postby kimks mom » Thu Dec 10, 2009 1:17 pm

If your doctor is not willing to increase injections, then you do have several options. The first is to supplement with Jarrow methylcobalamin sublinguals 5mg, you can purchase these from iherb.com, it is a very reliable company and is used by many of our members, including myself. The second option is to ask your doctor about self-injection. If you can get a medical professional to teach you how to self-inject, then you will have more control over your treatment. I realize that cyanocobalamin is sold only by prescription in the United States but you are not very far from the Canadian border and in Canada, cyanocobalamin is sold over the counter, you have to ask the pharmacist for it but you don't need a prescription.
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.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Postby Galixie » Thu Dec 10, 2009 4:57 pm

I do self-inject. My mom is a retired nurse so she taught me how to do the injections. The thing that keeps me from simply injecting more often is that my prescription is not on an endless refill. The doctor writes a prescription for one 10 dose vial and that has to last me for 10 months.
I didn't know that it was sold over the counter in Canada. I guess that could be a good reason for me to invest in a passport! :)

As it is, I'm already injecting more frequently than once a month because I'm doing the injections every four weeks on the dot (because I felt so awful when I tried to wait for the actual end of the month that I couldn't bear it).

My energy level on this schedule was like a roller coaster. A day or so after a shot I would feel like I could conquer the world (and get every chore around the house done) and then it would gradually decline to being barely functional. And, for about a week prior to the next shot, I would feel like a very forgettful babbling idiot.

For some unexplained reason, I really struggled through all of Sep and Oct. It felt like I was getting worse. That was why I decided to see the hematologist (those earlier test results were taken on Oct 7th).

So far the daily B12 I'm taking does seem to even out my energy level. I'm not hyper, but I'm not listless either. And, thankfully, I feel like my brain is working again. Hooray for small victories!
Galixie
 
Posts: 608
Joined: Tue Dec 08, 2009 10:34 pm
Location: Seattle, USA

Postby anotherwithpa » Thu Dec 10, 2009 5:07 pm

Hi,

People can get B12 freely over the counter at pharmacy etc in a lot of countries, you can even order it by internet, its just a vitamin afterall.
For info about sites others have used see:
http://www.pernicious-anaemia-society.o ... c.php?t=20

Kind regards,
Marre.
Last edited by anotherwithpa on Fri Dec 11, 2009 4:05 pm, edited 1 time in total.
anotherwithpa
 
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Postby kimks mom » Fri Dec 11, 2009 2:12 pm

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.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Postby Jody » Fri Dec 11, 2009 2:58 pm

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Postby Galixie » Wed Dec 30, 2009 6:27 pm

Galixie
 
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Location: Seattle, USA

Postby Galixie » Mon Jan 25, 2010 7:05 pm

Galixie
 
Posts: 608
Joined: Tue Dec 08, 2009 10:34 pm
Location: Seattle, USA

Postby anotherwithpa » Mon Jan 25, 2010 7:23 pm

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