Newbie

Hi.

After several years of struggling I finally had enough and asked my doctor for the last two blood tests before taking them to a private doctor.

Within five minutes of being in his office he announced he knew exactly what was wrong me, and that he would arrange the B12 injections to start on the 7th Feb.

I have a strong family history of B12, Folate and Iron deficiency; so much so I am one of the last female members to be diagnosed with it. My mother is still fighting, but deteriorating rapidly.

I have for about ten years struggled with exhaustion, fogs, depression, ovarian cysts,miscarriages etc and no one has said a word. Last year was the pits as I lost my job as I was not able to focus on what I was doing and inevitably made mistakes. I changed career and halved my working time (needless to say less money) only to end up collapsing three times at work and being ambulanced to hospital; still no answers.

The final straw was went I went for a blood test and a bank nurse started asking about my low B12 (170 ng/L), folate (1.5 ng/L) and Iron deficiency (2.7 ng/L)...Hhuuu. Apparently the test centre had sent a query because I had had so many blood tests recently and they themselves had noticed the results were abnormal.

My GP's answer was to say they would wait three months and then test again. Not likely, I want to get my life back. As I said I have now gone private to get the results and suddenly I don't feel like a middle aged psychotic hypochondriac.

I'm toying between fury and despair.

I know I can't change the past, but I still have the What if's?

8 Replies

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  • Hello, yours is an atrocious story, yet a saddeningly familiar one. I am glad that you are going to get the necessary injections soon, and I am sure you will soon be a different person.

    Your folate and low iron levels will be treated as folate is needed to retain the B12.

    However I am concerned about your mother and her deterioration. I am not a doctor, but I was in a similar position.. untreated despite my pleas and going downhill fast. I joined the Pernicious Anaemia Society: pernicious-anaemia-society.org and learned so much.

    I feel that her situation would be improved by taking sublingual B12 tablets of 5000mcg (5mg) per tablet, from Amazon, Health and Beauty section. There is also available a B12 spray, delivering 500mcg per spray. I used both delivery means to get 25,000 -30,000mcg daily.

    You can read my nine or so posts on how I treated myself at:

    pasoc.healthunlocked.com/bl...

    plus a link to a confirmation by a Dutch woman that such high B12 delivery is reckoned in Holland to be the equivalent of two injections per week.

    If this is undertaken then to take sublingually means exactly that, keep the tablets under the tongue as long as possible dissolving slowly, and the spray held in the mouth as long as possible. Membranes in the mouth permit absorption avoiding stomach etc route so even those with PA lucky enough to have injections can supplement by this means between injections. but bear in mind that such sublingual supplementation will, if absorbed as it is meant to be, skew blood test results.

    I hope this helps to defuse the desperation you and your mother must be feeling about her situation.

  • Thanks for the reply. I will pass the info on to my mother.

    If all goes well I should be able to bring her to the doctor I saw. The logistics need to be worked on as she is in a wheelchair, but a lot of family and friends have said they will help with transport.

  • Hi Newbie:

    Your health ordeal reminded me of mine when I was your age. I too could hardly held on to my job because of the fatigue and muscle spasms, had a large ovarian cyst, could not conceive, and no doctor could determine the cause. In 2007 my iron levels were <5 and this forced emergency blood transfusion. The lab pathologist diagnostic was microcytic hipochromic condition, consistent with iron deficiency anemia. I was not ready to but had to retire last year on account of being too weak.

    In mid December 2012 I started new tablets of hematinic (iron) and they were the first iron tablet my body was able to absorb, because they bypass the stomach and only dissolve in the intestines where they will be absorbed. Try Googling Feramax.com. It raised my iron from 7 to 18 (minimum here is 11) for the first time.

    A few weeks ago I joined this site and learned about B12 from PA members . On January 17 I crawled to the doctor's office and demanded a B12 shot and prescription. As I write this it is January 28, and I am happy to report a marked improvement in my strength. In addition I started using sublingual strips and drops, first 2,000 mcgs a day, then and yesterday to 3,000 mcgs. Believe me, it works and this is good for the next B12 shot is only a month later. My muscle spasms have subsidized, actually the muscular/skeletal issues seem to have calmed down.

    Actually it is all in your head, but in a different way. The B12 is needed for optimal brain function and it is the only vitamin our bodies do not produce. hopes also from Canada on Saturday submitted suggestion about the B12/folate trap which I researched and you should consider. You are low in those as well as iron levels. You should also consider absorption problems, the reason for my low iron levels, and from the looks of it B12 as well.

    Yesterday I convinced a close friend who is 91 and in nursing home to have her daughter get her sublingual strips based on my positive experience. From her e-mails I had noticed marked deterioration in her cognitive function. I hope they followed my suggestion.

    As suggested by nostoneunturned, B12 strips/pills/liquid work better when held in mouth for as long as possible. I swish the liquid around to mix it with saliva before swallowing. Taking them will make you feel stronger but could interfere with more blood tests. Yesterday I was checking Amazon.com for B12 per nonstoneunturned suggestion, and noticed there is a amazon.uk.

    I wish you and your mother the same luck I had in the past weeks after I came across this site. You will notice the health improvement will bring about a new quality to life, that which you thought you would never be able to attain.

    mashby

  • Thank you for your reply. It gives a sense of relief and sadness to know I am not the only who has gone through the mill.

    The good news is my mother went to the GP's with all the information from the site and my results and spoke to her diabetic nurse who couldn't believe she hadn't been told she was anemic! They have now done more tests (hmmm) as she also has chrones disease, diabetes, kidney failure and rheumatoid arthritis to see if they have masked the B12 results. If all else fails I will bring her to the private doctors.

    I can't wait to get started on the injections, but am trying to boost my system with the methylcobalamin lozengers.

    In our area of England they don't normally start treatment until your levels are below 151 even if you are symptomatic. Hopefully that is being changed soon to anything below 200.

    I'm glad to hear you are symptoms are getting better, so you can at least enjoy your forced retirement.

    Sandra

  • Don't reley on the white coats most are not fit to call them selfs Doctors .

    Oysters, and Mussels

    Shellfish are a great source of vitamin B12 and can be eaten raw, baked, steamed, fried, or made into chowder. In addition to vitamin B12 shellfish are a good source of zinc, copper, and iron. Clams provide the most vitamin B-12 with 98.9µg per 100g serving, accounting for 1648% of the DV. That is 84µg (1401% DV) per 3 ounce serving, and 187.9µg (3132% DV) in 20 small clams, or 9.4µg (156.6 %DV) in one small clam. Mussels and oysters are also good sources of B12 providing 600% DV and 400% DV per 100 gram serving

    DV = DAILY VALUES

    Below is a short list of leafy greens that are high in folic acid.

    •Spinach — 1 cup = 263 mcg of folate (65% DV)

    •Collard Greens — 1 cup = 177 mcg of folate (44% DV)

    •Turnip Greens — 1 cup = 170 mcg of folate (42% DV)

    •Mustard Greens — 1 cup = 103 mcg of folate (26% DV)

    •Romaine Lettuce — 1 cup = 76 mcg of folate (19% DV)

    •Lentils — 1 cup = 358 mcg of folate (90% DV)

    •Pinto Beans — 1 cup = 294 mcg of folate (74% DV)

    •Garbanzo Beans — 1 cup = 282 mcg of folate (71% DV)

    •Black Beans — 1 cup = 256 mcg of folate (64% DV)

    •Navy Beans — 1 cup = 254 mcg of folate (64% DV)

    •Kidney Beans — 1 cup = 229 mcg of folate (57% DV)

    •Lima Beans — 1 cup = 156 mcg of folate (39% DV)

    •Split Peas — 1 cup = 127 mcg of folate (32% DV)

    •Green Peas — 1 cup = 101 mcg of folate (25% DV)

    All the best I wish you well,

  • Thanks for the input. I am not very good with fish, but I will try and eat anything if it will help. Fortunately I love green vegetables, beans, pulses etc so I am in heaven that way.

    I'm not a vegetarian which is one of the things everyone has said I must be to have these low levels. I must admit protein is not my favourite thing as I usually get terrible indigestion from eating it, same with wheat products.

    Take care and all the best

    Sandra

  • I was told that my P A was an autoimmune disease and that my antibodies were destroying the intricit factor in my stomach which carries B12 into the bloodstream, so therefore not being able to digest this, which is why I have to have the injection? Having said this I have always eaten very healthily and eat all of the above. I have found juicing fresh fruit and veg is fantastic as it is absorbed more easily than eating them!

  • Hi Sltrog:

    Take a look at this link for ordering sublingual B12: stopagingnow.com/energy38/

    Best of luck

    mashby

    PS: I too had lots of beans/lentils for their iron content but learned two months ago they all contain "lectins" that can affect digestion in certain persons. My digestive system now calmed down on the high protein diet, but most probably because blood type B carry enzime that breaks down lipids.

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