B12 result: Hi, I arranged (privately)an active B... - MPN Voice

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B12 result

Bobadog profile image
12 Replies

Hi,

I arranged (privately)an active B 12 test this week,which apparently shows the level of B12 which can actually be used in the body?

My result is 248 pmol/L

I was informed this level was quite high.(by a non specialist private GP)

However,I have read that the normal range is 500-1000?

I would like to re start the B12 drops(1ml daily)

Recently I’ve started taking weekly 45 mg Peg ,but still require venesections to control the haematocrit.

Any views would be appreciated ,

Bobbie

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12 Replies
hunter5582 profile image
hunter5582

I think you might want to do some fact checking re. Vit B12 and what was being measured.

"The normal range for vitamin B12 (total) is between 200 – 1100 ng/L (nanograms per liter), 200 – 1100 pg/mL (picograms per milliliter), or 148 – 811 pmol/L (picomoles per liter).

The normal range for active vitamin B12 (holoTC) is around 20 – 134 pmol/L (picomoles per liter)."

labs.selfdecode.com/blog/vi...

It sounds like the reference was to active Vit B12 rather than total B12. As you can see from this source, that would mean the active B12 levels are in fact high.

Not too surprising that you are still needing venesections if you have just started PEG. it does take time for it to take effect. Many people do need to go up to the 90mcg dose. I hope that your experience with PEG will be as positive as mine has been thus far.

All the best,

Bobadog profile image
Bobadog in reply tohunter5582

Hunter,Great article and really interesting .

My B12 level is elevated ,and yet another symptom of PV ,which I had not appreciated.

Very many thanks for posting yet another excellent article.

As we all know ,the more knowledge that we can acquire ,will hopefully ,enable us to manage our disease better,

All the very best,

Bobbie

hunter5582 profile image
hunter5582 in reply toBobadog

And thanks for posting the question. I have an ongoing Vit B/folate deficiency. Looking up the answer to your question taught me something about how Vit B levels are measured that I did not know. More knowledge is good knowledge.

All the best my friend.

Anag profile image
Anag in reply tohunter5582

B vitamins are so important! Make sure you get rid of deficiencies. I myself found a B3 deficiency which no doctor could pinpoint according to my symptoms. (Skin that was burning and felt like it was ripping). I paid for the test myself both niacinamide and nicotinic acid. Both were very far below the minimum!Often B deficiencies are caused by leaky gut, when the gut is not able to properly absorb vitamins.

Bobadog profile image
Bobadog in reply toAnag

Many thanks for the info

hunter5582 profile image
hunter5582 in reply toAnag

I expect my Vit B/Folate deficiency is related to long-term use of proton pump inhibitors to treat GERD. Nexium is notorious for this adverse effect. It works great to control the acid reflux, bit can have consequences. We did titrate the Vit B dose based on measured results on blood tests. The deficiency is no longer evident.

Anag profile image
Anag in reply tohunter5582

Dear Hunter,

My husband had horrific gastrointestinal reflux. The best doctors told him that they could only treat it with an operation. Firstly, it took forever to diagnose it. He had no esophageal burning. His terrible cough was seen as a bronchial problem. The 1,5 years inhaling cortisone brought on the cancer that was diagnosed just 2 months after our wedding. He went to an internist who also did TCM.

Just for thought: our ENT diagnosed the reflux within a minute with no tests. 🧐 my husband was angry at the specialists.

Solution:

The TCM that was given to him to help with the cancer also included something for the reflux. After the cancer was over, he concentrated only on treatment for the reflux. It was completely gone in 7 months and he had a relapse after 3 years, which was treated and healed within 2 months. That was it. He also slept with his torso a bit raised, didn’t eat late at night or between meals. He concentrated on eating foods that were alkaline (also good for cancer prevention).

Perhaps this could be something for you!?

Anag

P.s. it is better to supplement with folate instead of folic acid. 🙂

hunter5582 profile image
hunter5582 in reply toAnag

That s terrible that something as easy to diagnose as reflux was misdiagnosed and mistreated. GERD is absolutely treatable. I agree with the dietary changes, including not eating late at night. I also avoid/limit spicy and acidic foods. Also keep fizzy drinks to a minimum. The GERD has caused a hiatal hernia for me. I had one spike in the GI sx that was so bad is caused gastroparesis, and significant gastritis and esophagitis. It also cased a spike in thrombocytosis to almost 1 million. I learned to treat the GERD in a much different way at that point. Now successfully keep it under control.

Agree with taking folate. That is what is in the Methyl B complex my Integrative Med Doc has me taking. Interesting that your husband tried Traditional Chinese Medicine. I practice Qigong and use certain TCM elements, including Neigong. It can be very effective.

All the best.

Anag profile image
Anag in reply tohunter5582

I just looked up hiatal hernia, etc. So sorry about that. Thank goodness you have that under control.

You’ve mentioned QiGong before. I’ve wanted to start for 2 years and I still haven’t!! Could you send me some link(s) on Qigong that you trust. ie. A good trainer with videos? I’d really appreciate that.

All the best. Anag

hunter5582 profile image
hunter5582 in reply toAnag

Glad to hear you are interested in Qigong. It does really help promote health and manage stress. finding a knowledgeable Sifu is very important. You can only learn so much from videos. To get the full benefit, you need someone who is well versed in the practice of Qigong and its use to promote health. There is more to it than the obvious promoting of flexibility and balance.

My SIfu does offer on-line training if you are here in the States. I am afraid I do not know of any others.

There are actually quite a few different forms. The Taiji Qigong 10 forms, Six Healing Sounds are where I started. The Taiji Quan 24 forms (AKA Tai Chi) is another great thing to learn.

Here are a few videos that are good demonstrations of the some of the forms of Qigong.

youtube.com/watch?v=asJzU2K...

youtube.com/watch?v=TBvF6r6...

youtube.com/watch?v=_yMHHhx...

NewBloom profile image
NewBloom

My B12 can fluctuate. I was advised not to take any B12 supplement or it could cause my Polyctheamia to become worse.

Anag profile image
Anag

I also see what Hunter is saying.

Info:

Low.

Levels of vitamin B-12 are low if they are below 200 pg/mL. This result suggests a vitamin B-12 deficiency, pernicious anemia, or an overactive thyroid. People with low vitamin B-12 levels often experience neurological symptoms.

High.

An abnormally high vitamin B-12 status is anything over 900 pg/mL. This result may suggest liver or kidney problems, diabetes, or certain forms of leukemia.

My dad had very low B12 for many years. Because he had a leaky gut, he wasn’t able to absorb. After many years of this, it caused him low hematocrit, therefore low oxygen flow to the brain and eventually dementia. Once he started getting B12 shots, his body and brain started recovering. At the age of 86, he started regaining his brain (but not memory that was lost. He got to know me again, but as a new person. 😁

Study up on vitamins and minerals. So important!!

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