What is the procedure to start B12 an... - Pernicious Anaemi...

Pernicious Anaemia Society

32,679 members•24,077 posts

What is the procedure to start B12 and to measure b12?

I am fairly new on this forum having signed up upon the diagnosis of pernicious anemia by my oncologist.. Hello and thank you!.

For background, I was diagnosed with Hashimoto's disease forty five years ago, with Autonomic Disease months ago and In February, I was diagnosed with pernicious anemia. That's three auto-immune diseases.

My ninth weekly B12 injection was yesterday, There has been little improvement if any and the neuropathy and internal trembling have probably got worse. Now, my GP sent word that does not want me to have any more B12 for a month. After the month's suspension, he wants my B12 level tested and then to see me to discuss the results!

There is a message on this forum that suggests that three months' suspension of B12 shots is the proper length of time in order to measure the B12. Is that correct? Further, Is there any point in measuring the B12 , anyway?

Please help!

Written by

jersey-jazz

To view profiles and participate in discussions please or .

Read more about...

14 Replies

•

fbirder4 years ago

Ask your oncologist why he wants to do this?

jersey-jazz• in reply tofbirder4 years ago

I have cancer. On a separate issue, that of internal trembling, since last April, I had been to see a neurologist in February who ordered blood tests for A, B, C, D,E, etc. I was to have blood tests done in a few days at MSKCC ordered by my oncologist. At the offie desk, on the way out, I asked if the blood test ordered by the neurologist could be done at the same time. This was done. So, the oncologist had seen the blood results ordered by a neurologist who, by the way, has never called me about the results.. I have a three month visit with him in May. when, perhaps, he will tell me that I have pernicious anemia. Interestingly, MSKCC neglected to do the blood work that day that had been ordered by my oncologist who works there but did do the blood work ordered by the neurologist. I had had a PET scan done there that day and I guess that that was the alll important thing.. My oncologist viewed the results of the PET scan and the test results ordered by the neurologist.. She called me about the results. .She, of course, had access to all blood test results for the past few years. She told me to have my G.P. start me on B12 shots the next day and to carry on indefinitely with them. In effect, she passed it on to my G.P, through me.

It is complicated and confusing and I apologise for that. It is also very distressing. Can I know the answer to my question: What is the proper length of time of abstinence from B12 shots to get a proper reading of B12 in the body? I also welcome any other piece of information that you feel would be helpful. Thank you!

fbirder• in reply tojersey-jazz4 years ago

What does he want to show with the blood tests?

If you want to show that you have a B12 deficiency without blood tests then you should, indeed, wait about 3 months. Low B12 means you do have a deficiency.

If you want to show that you are clearing the B12 from your injections unusually rapidly then a month's gap would show that if your B12 levels dropped substantially.

But you really need to ask the doc why they are doing what they are doing. Ask for an answer in writing - just a couple of paragraphs.

jersey-jazz• in reply tofbirder4 years ago

Thank you for your responses. I've made an appointment with the GP for next Wed, pm. I will be asking him that question in person as well as other questions. I may try to put the questions on the portal ahead of time. Before that I will be on a fact finding mission and will be reading many articles noted in this place.. Thank you, again.

CherylclaireForum Support• in reply tojersey-jazz4 years ago

You may want to look at links on a recent post (20 hrs ago) from Cetus : "Seek detailed B12 article to give to GP for education". It'll be on your Home page (top left).Hopefully you will find some answers -and inevitably more questions will arise.

jersey-jazz• in reply toCherylclaire4 years ago

Dear CherylclaireThe title of the post sounds as if it is the perfect post for me. Unfortunately,I cannot seem to go backwards from my post. I looked at the Home page to no avail. Can you think of another way I can access it?

jersey-jazz• in reply tojersey-jazz4 years ago

Apologies. I got it. Thank you!

MariLiz4 years ago

I can recommend the books written by Martyn Hooper, the Chairman of the Pernicious Anaemia Society. He writes from his own personal experiences.One very important thing is, if you have neurological symptoms, the injections should be continued at the loading dose frequency until there is no further improvement. It takes a while to feel the full benefit from the injections, and often the symptoms seem worse for a time. This is a sign that things are beginning to heal.

Hoping you will feel better soon.

jersey-jazz• in reply toMariLiz4 years ago

Thank you, MariLiz! I did buy a copy of Pernicious Anemia:The Forgotten Disease" and am in the process of reading it. I did not have a loading dose. I am in the USA and was getting cyanocobalimin , 1000mcg, once a week, As stated above, the G P has discontinued the injections for a month. I will be seeing him at 3pm, this afternoon. I actually want to cry right now because I want to be fighting for my health, not fighting with the doctor. I do have neurological issues and they are getting worse.

MariLiz• in reply tojersey-jazz4 years ago

I am so sorry to hear that the injections were discontinued. Did he give you a reason for that? I’m guessing the treatment is different in the USA? Over here we can buy B12 as sprays to use under the tongue. This bypasses the gastric system and can help top up our levels of B12. A lot of people on here also do their own injections if their doctors are unhelpful.

I hope you will find a way to get the treatment you need?

Very best wishes

jersey-jazz• in reply toMariLiz4 years ago

Dear MarLIz---- I am meeting with him in less than four hours and I am preparing to do battle. I have become much stronger and more assertive thanks to all of you who have bothered to respond to my plea and provided me with information. " Knowledge is power!".Thank you, again! I'll let you know if I succeed in convincing him to hold off any changes until I meet with the neurologist In two weeks.

MariLiz• in reply tojersey-jazz4 years ago

Will be thinking about you! Good luck and stay strong 💪