Waiting for results from a test - Pernicious Anaemi...

Pernicious Anaemia Society

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Waiting for results from a test

terrybraden profile image
5 Replies

Hi Everyone, I'm quite new to this forum and some of you have been emailing me and there has been no response on my part. I am sorry about that. I had forgotten the way to log in and I also forgot when you email me you are looking for some help from me.

I did read someone's post about the MTHFR gene. I am waiting for results from my test as the title suggests.

I will get back to you.

This is my news:.

In the past I was receiving B12 injections from my GP, but it never helped my fatigue. (They were cyanocobalamin).

I am using sublingual B12 (45,000 mcg/day) and transdermal patches (3600 mcg/day). I am feeling much better. I have lots of energy. I am going for walks. I have come from a place where I was in a wheel chair, I used a 2 wheel walker, then a 4 wheel walker (my Cadillac, someone called it) and I have been happily walking. (It's methylcobalamin). I can also sit in a car most of the time without a cushion behind me.

I have had an MRI, but don't know the results yet. I have issues with my heart, but walking should help plus magnesium and lemon juice or Happy Water which all have your electrolytes.

Take care all of you.

Terry

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clivealive profile image
clivealiveForum Support

Hi terrybraden can I assume because you were on cyanocobamalin that you are in the United States?

It's good to read that you mobility is "improving".

Do you know what your Folate level is? This and B12 work together to help your iron function properly and make red blood cells.

I'm in the UK and have been on cyano for more than 45 years because that was what was available back in 1972 when I was first diagnosed with P.A.

I wish you well.

terrybraden profile image
terrybraden in reply toclivealive

Hi clivealive,

No, I'm sorry I don't know what my Folate level is, and I live in another country altogether.

When I was receiving injections, it was quite a few years ago too, and it was only 1000 mcg/week. It was the pink stuff, correct? I could have purchased it from the pharmacy on my own, but I didn't know. This was in the 1990's. At that time I was not very informed about B12 and folate,and the relationship to iron, or the different forms of B12 (cyano, methyl, hydroxy) I didn't even know you could get a spray for in your nose!

I haven't been diagnosed with PA, exceptall I know is that people with PA can't absorb B12 from their diet because they lack intrinsic factor, correct? If I am making a wrong assumption, please feel free to tell me. I have lots to learn from this forum.

I still struggle with dizziness which could come from low B12, low blood pressure, and my medication. I have reduced sensation in various parts of my body. Have you any idea when this will abate, if ever? This really worries me.

Are you still on cyanocobalamin?

I appreciate your response. Thanks for wishing me well.

Terri

.

clivealive profile image
clivealiveForum Support in reply toterrybraden

Are you in Eire?

You are correct saying that people with P.A. cannot absorb B12 through their digestive system due to a lack of Intrinsic Factor which binds to the B12 in food, carries it down to the lowest part of the stomach (Ileum) and then into the blood.

However there are many other reasons and anyone at any age, can become Vitamin B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

The treatment for P.A. and non-dietary Vitamin B12 Deficiency is virtually the same. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

Yes, I'm still on cyano - my little shots of "RedEx" as I call them - however I am not a medically trained person.

terrybraden profile image
terrybraden in reply toclivealive

Hi Clivealive

I live in Canada. Will be away for a few days and will reply when I return

terrybraden profile image
terrybraden

Hi Clivealive,

I am a vegan, and I just found out last week that I am gluten intolerant. Plus I am on an H2 blocker because one of my medications is an acid. I am also pre-diabetic. I live in Canada as you asked before. I have been tested for H-pylori, but I can't remember the results. I had no idea that I was so B12 deficient, but it makes sense for me to be deficient because of my digestion and absorption issues. Thanks for your suggestions. Any advice I can give also comes from my own experience as I am not a medically trained person either.

Terri

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