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Sjogrens Topics => Living With Sjogren's => Topic started by: susanep on October 13, 2019, 07:07:23 AM

Title: Low B12
Post by: susanep on October 13, 2019, 07:07:23 AM
I had some blood test results come back that showed I had a low B12 reading. When I ask the PA about it she said well it isn't that low so just take some over the counter pills at 500mcg. Then as I got to reading about it, I read that it really influences a lot if low. I had ask her if I could have a B12 shot, and she actually made fun of me, and then that is when she made the other suggestion.

I am changing to another clinic, because this lady has really been acting different than in the past, and I don't know why. I have to look out for myself.

Thanks,
susanep
Title: Re: Low B12
Post by: Joe S. on October 13, 2019, 08:56:59 AM
I started doing better after taking inositol which is a B vitamin derivative. I am now running a test with a clinical dose of a no flush niacin to check its impact on my diabetes. The first thing that I noticed was it was raining outside and I did not want to hide.
Title: Re: Low B12
Post by: susanep on October 13, 2019, 02:21:45 PM
I take the niacin, and it with coq10 put all my cholesterol's in range.
susanep
Title: Re: Low B12
Post by: irish on October 13, 2019, 02:55:47 PM
#Everyone with low B12 has different symptoms and you did not ask a dumb question.For crying out loud yoyo have lupus and other diseases and taking a B12 shot found be given and see what happens. if after a longer period of time could always go to the pill...however, chances are you would do better on the shot. You can't fix stupid(not you...the PA) as they say. Good luck. Irish
Title: Re: Low B12
Post by: susanep on October 13, 2019, 06:00:26 PM
Thanks Joe, and I agree irish.
susanep
Title: Re: Low B12
Post by: Skylar on October 13, 2019, 06:45:36 PM
I had some blood test results come back that showed I had a low B12 reading. When I ask the PA about it she said well it isn't that low so just take some over the counter pills at 500mcg. Then as I got to reading about it, I read that it really influences a lot if low. I had ask her if I could have a B12 shot, and she actually made fun of me, and then that is when she made the other suggestion.

I am changing to another clinic, because this lady has really been acting different than in the past, and I don't know why. I have to look out for myself.

Thanks,
susanep
Wow, how unprofessional to laugh at you. Years ago my PCP retired and the new one the practice gave me told me my case was hopeless and I had to accept that I won't get better - OMG I left that appointment in tears and immediately found a new PCP who I love. I hope you find someone who behaves professionally that you're happy with.


Title: Re: Low B12
Post by: Skylar on October 13, 2019, 06:46:01 PM
There are so many misconceptions about B12 even among them medical community. For example, most people assume if you are low in B12 that you must have anemia..... however if you eat a lot of vegetables and therefore have a good intake of folate, you may not get anemia. More importantly is low B12 can have an affect on the brain so it is important to treat.

Another misconception is you must have injections of B12. Your PA was correct in telling you that you could take over the counter (OTC) pills. There is credible research showing OTC B12 is as effective as injections.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5112015/

Implications for practice

The limited evidence identified in this systematic review shows that high doses of oral vitamin B12 (2000 mcg) daily are as effective as the intramuscular administration (Kuzminski 1998) in obtaining haematological and neurological responses in patients with vitamin B12 deficiency. High doses of oral vitamin B12 (1000 mcg) initially daily and thereafter weekly and then monthly are also as effective as intramuscular vitamin B12 (Bolaman 2003). The included studies also showed limited evidence for a satisfactory haematological, biochemical and clinical short term response for oral B12 replacement in some patients with conditions associated with malabsorption.

Current clinical practice in UK and in most countries is to prescribe vitamin B12 in the intramuscular form for the treatment of vitamin B12 deficiency. This has been the norm for the last 50 years despite several non-randomised studies in the early 1950?s demonstrating satisfactory responses to oral treatment and the fact that there is considerable experience in Sweden in using oral vitamin B12. In 1998, the study by Kuzminski et al. (Kuzminski 1998) was the first randomised controlled trial to show that in achieving a satisfactory neurological, haematological and biochemical response, daily high doses of oral vitamin B12 were as effective or even more effective than intramuscular vitamin B12 when treating patients with vitamin B12 deficiency.

Generalised oral vitamin B12 treatment might benefit many patients in terms of fewer visits to health carers and reduced discomfort associated with injections. Nursing time would be released for treating other patients. However, adherence and monitoring will remain important considerations, regardless of route of administration.

On a personal note, I don't absorb B12 well. I've had three health crises related to below normal B12 blood results. Ironically at the time I was eating a lot of meat and taking OTC vitamins daily with 100% recommended amount of B12 - I should have had high levels with my intake. The first two times I had to inject B12 (I did it at home) but the last time I showed my PCP the Cochrane Collaborative results and she agreed to a trial of me taking OTC medication. My results were spectacular. Because of malabsorption I do have to take a megadose. I get tested annually now, but when I first started treatment I had followup blood work I think two months later to be sure I was absorbing the B12.

When taking B12 look for Methylcobalamin and one that has been certified by an independent lab testing facility such as USP. The independent lab should be performing quality control to guarantee that level of B12 advertised on the container is what is in each pill.

I take Kirkland Signature Quick Dissolve B-12 5000 mcg which I buy at Costco (Kirkland is a Costco brand). When I needed to build up my B12 I took a pill daily, now I take one twice a week. Keep in mind I don't absorb like the average person. I'm taking megadoses. I have taken B12 from other companies but I shop at Costco so the Kirkland brand is cheap and convenient to purchase. I have used other brands with the same results.

If I were you, I would look for a Methylcobalamin B12 pill and take that for a month or two then ask to be retested. If you are still low, then you could ask for injections.
Title: Re: Low B12
Post by: Deb 27 on October 14, 2019, 06:39:37 AM
Susan, sorry you had a PA laugh at your question. Ugh! So unprofessional.

I was also low in folate and B 12. A wonderful NP tested me and she recommended the shots! However, the B12 in the shot was a different chemical formula and I didn't want to take it. It was the cyanocobalamin.

I also take the methyl form of B 12 as that's the form our bodies use. I feel better taking that and also methyl folate.

I think some of the vitamins that I take have actually made me feel better than the medicines. They got rid of a lot of my aches and pains. I was also very low in Vit. D.  I was also low in ferritin although my hemoglobin and hematocrit were normal.

I hope you feel better soon and find a new PCP.
Title: Re: Low B12
Post by: SjoGirl on October 22, 2019, 12:46:25 PM
To add a point, it is possible to take a prescription dose of B-12 by mouth. I took such when I was first ill and my B-12 was in the toilet. I took I believe maybe 5,000 mg a day for a month.

You do want to take care of going too far in the other direction. I just read a new study that says that women who get too much B-12 seem prone to falling (very large, longitudinal study). They don't know why there is a connection to falling they think it might because too much B-12 can cause neurological issues such as confusion.

I recently had my B-12 checked again and it was low. My PCP, who I have entrusted with my life for about 15 years recommended OTC, which I am taking every few days.
Title: Re: Low B12
Post by: susanep on October 22, 2019, 02:59:56 PM
SjoGirl,
Thank you for that information.
I know the gabapentin I take makes me sway, so I take it at night.
susanep
Title: Re: Low B12
Post by: irish on October 22, 2019, 10:26:47 PM
Years ago they only treated low B12 with the injections. It is not absorbed well in the intestinal tract that the shots absorbed better. I see people are taking it orally more often now. I also see they have OTC slow absorbing b12 now. Maybe they have decided that the oral works well enough at a certain dosage. Irish
Title: Re: Low B12
Post by: Skylar on October 23, 2019, 08:24:06 AM
Years ago they only treated low B12 with the injections. It is not absorbed well in the intestinal tract that the shots absorbed better. I see people are taking it orally more often now. I also see they have OTC slow absorbing b12 now. Maybe they have decided that the oral works well enough at a certain dosage. Irish
Irish, the research shows that you can absorb it orally, you just may be like me and need megadoses to absorb sufficient. It beats taking injections, especially if like most people you have to go to the doctors office regularly for injections. Pills are reasonable priced and easy to find now (when I first started switched from injections to pills it was extremely hard to find the methycobalamin form but now most stores that sell vitamins sell this form along with the more common Cyanocobalamin). The best part is you can have a follow up blood test to check that your B12 is increasing and/or within normal limits.
Title: Re: Low B12
Post by: katie1111 on October 24, 2019, 05:41:13 AM
I have autoimmune gastritis, so B12 and I have had our issues.  I took the oral for awhile, but now give myself the injection once a month.  I don't like shots, but the injection is very easy to do and it beats going to the doctor once a month.  Someone at the doctor's office should be able to show you how and their are videos on youtube you can review.

Katie1111
Title: Re: Low B12
Post by: susanep on October 24, 2019, 03:53:56 PM
I will have mine rechecked soon. How do you get the shots to give them too yourself? I know my parents use to, but at the time I don't remember what they did.
susanep
Title: Re: Low B12
Post by: irish on October 24, 2019, 09:14:22 PM
You need a prescription from the doctor that is filled at the pharmacy and a script for the B12 and the syringes. The syringes come in a box of 100. The pharmacy does it all.

I doubt that you can get the liquid B12 without a script so if your doc doesn't think the same as you then you may have to stick with then oral tabs. Good luck. irish
Title: Re: Low B12
Post by: susanep on October 24, 2019, 09:49:47 PM
irish Thank you,
I do doubt the lady I see would write a prescription for me, so I keep for now taking the tablets.
I will be seeing my Rheumy the 30th of this month. I am glad.
How are you irish?
Luv ya girl!
susanep  :)
Title: Re: Low B12
Post by: Linda196 on October 25, 2019, 03:02:44 AM
I haven't seen a mention in his thread of sublingual B12. For those with stomach issues, it may be preferable to injections and seems to provide the same results as oral, but slower results than injectable.

My daughter was taking the injections, not happily I might add because she has a phobia of needles, because the pills made her sick. When she relocated back home, and had to wait 3 months before her interprovincial healthcare was cleared for non-emergent things, I suggested the subling, and she started taking it, with an almost immediate response in her anxiety levels, which was her primary complaint. As it turned out, while the injections may have been helping her level, the anxiety about the injections themselves, and the added stress of moving and being without them for 2 months, were cancelling out any positive effect. 8 years down the road, she's still taking the subling, her levels are normal, and she's much happier!
Title: Re: Low B12
Post by: Skylar on October 25, 2019, 03:56:43 AM
I haven't seen a mention in his thread of sublingual B12. For those with stomach issues, it may be preferable to injections and seems to provide the same results as oral, but slower results than injectable.

My daughter was taking the injections, not happily I might add because she has a phobia of needles, because the pills made her sick. When she relocated back home, and had to wait 3 months before her interprovincial healthcare was cleared for non-emergent things, I suggested the subling, and she started taking it, with an almost immediate response in her anxiety levels, which was her primary complaint. As it turned out, while the injections may have been helping her level, the anxiety about the injections themselves, and the added stress of moving and being without them for 2 months, were cancelling out any positive effect. 8 years down the road, she's still taking the subling, her levels are normal, and she's much happier!
Linda I forgot to mention I take my Kirkland brand methycobalamine sublingually, allowing it time to slowly dissolve and get absorbed under the tongue.

When I have low B12, I develop a horrible anxiety, just out of control anxiety and as soon as I get my B12 levels back up it disappears and I return to a normal level of anxiety. Lack of B12 affects the brain. I wouldn?t be surprised if it was affecting your daughter?s anxiety level as well.
Title: Re: Low B12
Post by: susanep on October 25, 2019, 09:41:13 AM
I take my b12 using the sublingual pills. I just thought I would absorb them better.
susanep
Title: Re: Low B12
Post by: irish on October 25, 2019, 07:42:17 PM
Thanks for the interesting info on the sublingual b12. Irish
Title: Re: Low B12
Post by: Scientist8 on November 04, 2019, 08:21:39 AM
Sublingual (under the tongue) B12 liquid works well, even in those who aren't absorbing B12 well in their GI system.
When my B12 was low, I had terrible anxiety, shakiness, pounding heartbeat. It was a bad experience that was fixed very quickly with B12 liquid or liquid B vitamin complex.
Title: Re: Low B12
Post by: susanep on November 04, 2019, 12:40:30 PM
More good info.
Thank you.
susanep