I was diagnosed in May '05 with B12 deficiency (pernicious anemia). At dx my level was 79. I was very ill. Lost my voice completely for several months. Muscles ached to the point I was afraid to move. Had brain fog, very dizzy. Shortness of breath, tightness in chest, fatigue so bad all I could do was move from bed to couch. Numbess in hands. Since dx my levels have been above 2000 for over a year with oral supplementation and monthly injections.

My problem is that even though I am much improved in some areas (hand numbness, dizziness) I am still having alot of issues with all the other sx. I have "good" days (which are few and far between) where I feel like I could run a marathon and "bad" days where it is a struggle to lift wet laundry from the washer to dryer. My muscles ache, I get hoarse, tight in chest, winded, very fatigued, headachey, brain fog.

Also, in January of last year I had a very early stage breast cancer with lumpectomy and 5 day targeted radiation. I was then put on Tamoxifen which is an anti-hormone since my cancer was hormone receptive. The Tamoxifen seemed to amplify my fatigue and I had a never ending hot flash that just wiped me out. I went off Tamoxifen in December and have had time for it to get outof my system and with the exception of no more hot flash, I feel about the same.

My oncologist has set me up to see a neurologist at UAB Kirklin Clinic in Birmingham next week. I have seen two neurologists locally as well as a cardiologist, pulmonologist, endocrinologist, rhuematologist, gastroenterologist, 2 ENT's (all together 13 docs and specialist) who all don't know what to do with me. I have had extensive bloodwork which was sent to Mayo clinic. I've had numerous scans and x-rays, endoscopy, colonoscopy, bone scan, heart catheter, (all showing nothing except fatty liver), ect...

Sorry for long post, but am at my wit's end. I also have hypothyroidism and high blood pressure. Have gone off all medications before to see if anything was going on there. Can't work and am awaiting on appeal with SSDI. Hard to get without a true diagnosis.

Anyone still have major issues like mine even after B12 replacement? Help!

Jackie

B12 does not act alone.

There are two other major players.

Activated folic acid, and activated pyridoxine B6...
folinic acid
P5P...

I suggest you try both of these as an add on.
The Rx vitamin Metanx has them, or you can buy them OTC at
iherb.

Have you had a Vit D serum level drawn and tested? Many people with
long term issues are being shown to be very low in serum Vit D.

These are just my ideas to help you along.... Good luck.

--you mentioned you are hypothyroid--and that alone can casue many metabolic "slowness" problems, including the slowing of the enzymatic reactions that are necessary for ful usage of vitamins and minerals.

Are you on any thyroid hormone replacement? (Some people to much better on certain types of replacement hormone than others--your dosage and/or form--T3 vs. T4--may need to be optimized.) Do you get regular TSH levesl done? (And how were you diagnosed?)

My PCP and my oncologist both keep a check on my thyroid levels. I have my TSH T3 and T4 levels checked at least every 3-6 months. Last month my thyroid levels were a bit low so PCP upped my Levothyroxin from 100 mcg to 112 mcg. I get checked again next month to see if they are in check then. In the mean time, I've not felt much of a difference.

I was diagnosed with B!2 def. by PCP after I had been through a battery of test and numerous specialists and no one was finding anything wrong with me. I had told my family I was giving up and was only going to one more appointment which was with PCP for 6 month check up. When we were going over my history again and I mentioned that my teeth had started breaking off, I guess some sort of light bulb went off because he said, "Let's run a few more blood tests." I didn't really expect him to find anything but he called me in immediately to start injections. I was 45 at the time, so he was very surprised I had a defeciency. He then ordered more bloodwork and found I had the antigen that blocks the intrinsic factor.

Mrs. D- I am not sure if I have had the test for vit. D or not. I'll have to check into that. I have had folate levels checked and they were normal, however we know normal doesn't always mean "normal". I will definately look into getting the supplements you recommend and will check with PCP about getting the RX. He is pretty good to listen to me, just doesn't know what to do with me.LOL

Thank you both for your replies.

Jackie

Hello Jackie,

Your symptoms are very familiar to me; I also discovered my B12 deficiency in 2005, and did not fully respond to treatment. Some members of this forum have reported immediate benefits from treatment while others, like us, have a much slower response. It can take many months, and sometimes years, for damaged peripheral nerves to recover.

Since late 2005, I have been investigating vitamin B12 deficiency by searching the Internet, and by using myself as a guinea pig for my own original research. My main focus has been on misdiagnosis of B12 deficiency, although the current, and planned next series of tests, are also investigating effectiveness of treatment. I have published a web site to expose the problem of misdiagnosis, to provide a resource of information to patients and to share the findings of my own research. You are invited to visit my web site; the URL and link are at the end of this message.

I have some suggestions about how you can test the effectiveness of your treatment for B12 deficiency. I should point out that I do not expect to see any problem, because what you are doing should normally be very effective for PA. In your case, the tests that I am suggesting are intended to give you some certainty, and peace of mind, that the treatment is working; this is done by using objective biochemical measurements.

Just one point; you have given us figures for your result but no units; this can be a problem with interpretation. For example, some labs in USA still use ng/L (= pg/mL) for serum B12, while most others in Europe and Australia use pmol/L. I assume that your serum B12 of 2000 is in ng/L because that is the limit of most lab analysers; it is equal to 1476 pmol/L.

Your current B12 level of 2000 ng/L could be misleading. The serum B12 test only tells you how much B12 is in your blood; this will be affected by recent injections or supplements so will not indicate your true body storage level. You could allow the serum B12 level to reach equilibrium with body storage level, and truly represent body storage level, by ceasing treatment for a few weeks. Even after reaching this equilibrium with body storage, serum B12 does not show whether or not your cells are actually receiving the B12 or are able to utilize it.

You could use the new “active B12” (holotranscobalamin) test, after two weeks without any treatment, as this is claimed to more accurately indicate the level of B12 available to the cells. I am currently investigating the effectiveness of this test, and will soon publish my results. The “active B12” still does not tell you about how well your cells are able to actually utilize the B12 delivered to them.

The best way to test for actual effectiveness of treatment is to measure the two metabolites of B12, methylmalonic acid (MMA) and total homocysteine (tHcy). These tests are normally used for diagnosis of vitamin B12 deficiency, by comparing the results before treatment with those after treatment. In your case, as you already have a diagnosis and have been receiving treatment, you would only be using the “after” results.

Both MMA and tHcy are sensitive indicators of any deficiency of B12 available to cells for production of chemicals required by the body. They are toxins that are left over when there is insufficient vitamin B12, so will increase when there is a B12 deficiency, indicating a true cellular deficiency. MMA is specific to B12 deficiency, whereas tHcy is also sensitive to folate deficiency. Neither test is perfect, with some false positive and false negative results, but are the best available and are very useful if correctly interpreted. I suggest using both for maximum certainty.

I suggest that ask your doctor to request that fresh blood samples to be sent to Mayo Medical Laboratories for testing for both methylmalonic acid (MMA) and total homocysteine (tHcy). Your local lab could test for homocysteine, but I do not recommend it in this case. Mayo uses the reference method, unlike most other labs, and should be more reliable. These tests will not be cheap, but should help to rule out any problem with your treatment. I would be happy to assist you with interpreting the results.

You are welcome to ask me any questions here on your thread. If you prefer, you may contact me for a private discussion by sending an Email from the Contact page of my web site.

Paul

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For the benefit of anyone else reading this, please note that you cannot use either MMA or tHcy for diagnosis of B12 deficiency after receiving any form of B12 treatment, because it is then not possible to obtain a valid “before” result. My suggestion for Jackie is specifically for testing effectiveness of treatment only. The following explanation is copied from the General Advice page on my web site:

If anyone wishes to discuss my advice about testing first, then I suggest starting a new thread, perhaps called "why test first?", rather than using this one which is about effectiveness of Jackie's treatment.