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Help Please!

Electra

By Electra
in Related Issues & Disorders

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Electra Enthusiast
Electra
Posted

Ok so I've been diagnosed with pernicious Anemia on top of Celiac and I am not getting the B12 that I need. I would like to have links to any articles from "reputable" sites that have factual information I can bring to my GI that will convince him that B12 shots once a month are not working for me. He never gave me the initial 3-4X's a week shots all he perscribed were once a month. I should have had that reserve and it was never perscribed and the B12 shots seem to wear off sooner and sooner each month. I see my GI specialist on Tuesday so I need to gather some info.

This is what happens. I get the shot and it takes a week to kick in, then it last for a week (maybe two weeks if I'm lucky) then it wears off so I have 3 weeks of major tingling, numbness and pain which is more then likely causing more nerve damage. I need proof to convince my GI that I am not getting enough B12 but I need to make sure he knows I've got my facts straight so I don't want to walk in with any old print out. I want facts that he can't argue with.

I am in the process of getting a new GI but Celiac knowledge is so rare in my state that the only GI that seems to know a lot about it is backed up until January already, and I can't wait that long because my leg is in a lot of pain.

I'm so sick of having to tell doctors what they are suppose to do. Isn't it their job to research it and make sure they are making the right decision. When I called up to tell them the B12 shots were wearing off they told me that the leg thing was a nerve issue and I'd need to see a neurologist. Well yah it's a nerve issue, but it wouldn't be if they'd give me enough B12 grrrrrrrrrrrrr!! I told her the standard was to give a lot more B12 in the beginning until they get my reserves up and they swear that the standard is B12 shots once a month and they never give more then that. UG!!

If I end up crippled because they didn't treat my condition aggressively enough they are getting slapped with a big time lawsuit (ok I'm just venting now, but really they need to read up on Pernicious Anemia and then treat me correctly)!!

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trents Grand Master
trents
Posted

Angie,

I have read that mega doses of oral B12 can work for pernicious anemia. Apparently there is an alternate but not very efficient uptake mechanism that doesn't depend on intrinsic factor. But we're talking about 4 grams per day or better of oral supplementation. Should be safe since B12 is water soluble. Maybe its worth a try.

Steve

georgie Enthusiast
georgie
Posted

Hi Angie, I have PA as well and cannot stress enough how important it is to get the correct LOADING DOSE followed by the correct maintenance dose. Many Drs do not understand but you risk permanent neuro damage if you allow one of these Drs to administer incorrect treatment. The loading dose is needed to build up the liver reserves again - and only after that happens can you think of the once a month treatment plan.

There is a Pernicious Anaemia Society - a registered charity so please have a look and join. With members we have strength to change the future care and understanding of PA. Open Original Shared Link

Sally Pacholok's book 'Could it Be B12' is excellent and has many references to show your Dr. I bought mine at amazon.

Open Original Shared Link

Good links...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I had pins and needles feeling in my feet for nearly 20 years ..... not one Dr thought to test my B12 level. Drs are trained that PA is rare , only happens in elderly people, and doesn't happen if you don't have enlarged red blood cells ( MCV). All false of course. It has taken me a YEAR of WEEKLY injections to feel the benefits of treatment. After 8 weeks of weekly jabs my Dr stopped me for a month - I nearly collapsed again...

Also check folate regularly - as that can alter as the B12 is administered and a folate anaemia can happen. And Iron Anaemia often happens with PA as well. It hasn't for me yet - but the Folate Anaemia did after 8 months.

Now that I am more stable I can manage on B12 jabs once every 3 weeks, and daily sublingual methyl lozenges (Jarrow brand the best).

And yes - there has been a lawsuit against a Dr for failing to medicate PA correctly. Sally talks of it in her book. The patient won the lawsuit but has a permanent neuro conditions caused by the Drs bad treatment. So - don't let that happen to you !

Hope this helps.

  • 2 weeks later...
Electra Enthusiast
Electra
Posted
  • Author

Thanks everyone. I had a blood test and it appears that my B12 number is where it is suppose to be, but if I remember correctly that doesn't necessarily mean anything. My symptoms have gotten better for the last few days, but it usually comes and goes with no pattern what so ever. I can't make a doctor give me the right dosage, and I can't continue to live with this either, so I'll probably end up with permanent nerve damage (if I don't already have that)!! Lets hope I can get this taken care of soon!!

georgie Enthusiast
georgie
Posted
I had a blood test and it appears that my B12 number is where it is suppose to be,

You need to change Drs.... Once you have been dx with PA you never need to have B12 checked again ( in theory). You don't dose to blood tests if you have PA. If its genuine PA - you need to have injections of B12 forever and regularly and not take notice of where your levels are at. Most people I know at PA do have a yearly checkup as to get Folate tested is important - so that is usually B12/Folate test. Some of us have B12 #s of 1500 or more ! But that doesn't mean we are 'cured'....

No need to get permanent nerve damage!! Just find a new Dr or learn to self inject. Do you have a friend or relative that is a RN ?

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks everyone. I had a blood test and it appears that my B12 number is where it is suppose to be, but if I remember correctly that doesn't necessarily mean anything. My symptoms have gotten better for the last few days, but it usually comes and goes with no pattern what so ever. I can't make a doctor give me the right dosage, and I can't continue to live with this either, so I'll probably end up with permanent nerve damage (if I don't already have that)!! Lets hope I can get this taken care of soon!!

I side with perhaps checking with another doctor, I wonder if your doctor tested you for the intrinsic factor? Lack of that causes true P. Anemia. As stated you should be loaded and then have maintanance injections if you don't make it. What also may have occured is that you were diagnosed based on symptoms and a dropping B12 level, if that is the case your depletion of B12 stores was cause by damage to your villi which effects the area where the intrisic factor is utilized. If that is the case then you should eventually start to utilize B12 and store it again but until that happens, and it can take quite a while, the sublingual B12 will be very important. It is absorbed through the mucous membranes into the blood stream and is second best to injections for usefullness to the body. The B12 that you would get from an oral swallow it pill will not be absorbed due to your intestinal damage.

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