I am new here and to B12 deficiency. About a month ago I had a blood test that showed my B12 was 190. My doctor just started me on B12 injections 1x1ml per week.
Meanwhile, over the last 2-3 months I have gotten a fungal infection on my feet and hands, something that feels like a UTI, but has a negative culture, and my allergies in my sinuses and ears feel slightly worse than normal (plus an occasional cough). Also around 2-3 months ago I started feeling a general malaise with extra tiredness. That feeling of being sick gradually started to get worse, but lately it seems worse every day.
I have a lot of other medical conditions so anytime I don't feel well it is hard for me to pinpoint which condition/s are the culprit.
I've struggled to get treatment for a number of reasons but tomorrow I have an appointment with a Nurse Practitioner.
I live in the US.
I am wondering how bad a B12 of 190 is.
I am also wondering if anyone has any suggestions for things to ask at my appointment or tests to request.
Thanks in advance!
PS: I forgot to include that the UTI has turned into severe urinary incontinence.
PPS: Does anyone else have issues with this editor working right?
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Monellsadcas
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I just came across the thread on Nitrofurantoin. I was given this twice (a week each time) for my UTI and urinary incontinence issues. Note: I am not sure I ever had a UTI since cultures were negative.
The reason I took it the second time was that it resolved my urinary incontinence after the first dose.
I took the first week 1-2 months ago and the second week ended two days ago. Both times my symptoms got worse after finishing the antibiotics.
The blood test that showed my level was 190 was done after the first week of Nitrofurantoin.
My doctor clearly doesn't know about Nitrofurantoin causing lower B12 because those two topics are what we discussed at the appointment where she prescribed my second week of it.
OK, your B12 is just at the bottom of the range. It sounds like your doc is treating it correctly. It may take time for symptoms to get better.
My B12 count was just a few above yours—- my GP was disinterested even though I’d seen on here that I had all the B12 deficiency symptoms. I started self injecting and my symptoms disappeared fairly quickly. The tinnitus was the first to go, followed by the air hunger and then the numbness in my finer tips and toes. I tested negative for PA and I self inject about every 6 weeks. Can’t do any harm and I refuse to go back to feeling that unwell ever again. If your drs injections don’t work well enough, think of s/i —- it’s easy, cheap and puts you in control.
Just to clarify, my doctor gave me a prescription for B12 shots. I have given myself one injection and will continue to self inject at home.
My doctor has started me at 1 shot per week of 1x 1000 mcg/1ml.
Based on what I've read here, I am wondering if I should be getting an injection every 2 days until my long list of neurological symptoms go away. At the same time I have only had one shot, which was two days ago.
A couple of days before the shot, while I was waiting for my prescription to be filled, my Amazon order with B12 lozenges (5000 mcg) arrived. I tried one sublingual and I think I might have felt slightly better afterward. The next day I found out my prescription was available, and the following day I gave myself my first shot.
At the time, I didn't know if it would be ok to do the shot and the lozenge and I forgot to ask the pharmacist, but based on what I've read it sounds like it would be fine. I'm going to ask my doctor about it today and see what she says, especially given this is the first appointment with this doctor. I don't want to start too many things all at the same time and then not be able to tell what is making things better or worse. But I am fine with trying things out a few days apart.
Just finished appointment with Nurse Practitioner. Very, very good appointment. Results: (1) Get another COVID19 test (2) if negative for COVID19 more lab tests: iron panel, thyroid panel, LH, and FSH. Also add B Complex Vitamin, Coenzyme Q10 supplement, continue weekly B12 shots, increase Vitamin D3 prescription from 2000 iu per day to 4000 iu.
There are lots of possible causes eg diet, PA (Pernicious Anaemia), Coeliac disease, Crohn's disease, H Pylori infection, fish tapeworm infection, exposure to nitrous oxide, damage to terminal ileum (part of gut where B12 is absorbed), some medicines/drugs, excess alcohol intake etc.
Have you asked your doctor if any of the medicines you are on could lead to B12 deficiency?
Incontinence can be associated with B12 deficiency.
I'm in UK.
Treatment can vary between countries even the type of b12 used in injections can vary. I think in US cyanocobalamin is used most often, whereas it's hydroxycobalamin in UK.
Methylcobalamin and adenosylcobalamin are other forms of B12.
I don't know why I have a B12 deficiency and the doctors haven't told me a reason.
Although the provider I had an appointment with on Friday said that since my B12 is low my other B vitamins and CoQ10 are probably low. She seemed to relate this to taking metformin, but I don't remember how she put it exactly. So she told me to start taking B Complex and CoQ10 supplements.
Here's what I know that might have caused or contributed to the problem (and/or things that can be ruled out):
I took a week of Nitrofurantoin at the end of October and a second week ended last Tuesday.
Medications:
I have taken all of the following since at least 2014:
Metformin
Omeprazole (PPI)
Famotidine (H2 blocker - when I run out of Omeprazole)
Birth Control Pills
Medical Conditions:
Ulcerative Colitis
Things that don't apply:
I don't drink.
I have only used nitrous oxide at the dentist, but I can't remember the last time. Probably over 10 years ago.
Diet: I eat meat and dairy.
No Crohn's
Negative tests for Coeliac
Things that need further testing and/or research:
PA
H Pylori infection
fish tapeworm infection (seems unlikely since I am not around any live fish or their habitat, and I rarely eat fish and never "raw".)
damage to terminal ileum
I think that covers what I have figured out so far.
When you say you had negative tests for coeliac disease (spelt celiac in US), which tests did you have?
In UK, guidelines suggest that patients should have two first line tests.
Did you have both of these?
1) TTG IgA test which checks for a particular antibody to gluten.
2) Total IgA test which checks for IgA deficiency.
Patients with IgA deficiency will need alternative tests for coeliac because their bodies do not make the antibodies that TTG IgA test looks for. See link below to Coeliac UK website.
In UK, GPs usually ask patients with suspected coeliac disease to eat plenty of gluten in more than one meal per day for several weeks before blood is taken for coeliac tests. This is to ensure there are plenty of antibodies to gluten circulating in the blood therefore increasing the chance of a positive result .
If you weren't eating much gluten before the tests it's possible to test negative even if you are coeliac.
UK guidelines suggest that anyone with symptoms consistent with coeliac whose tests are negative should be referred to a gastro enterologist.
I have read of cases of fish tapeworm infection from eating smoked salmon and pickled/marinated fish.
There are other parasites that can lead to B12 deficiency eg Giardia Lamblia. Have you ever lived or stayed somewhere where internal parasites are common?
Search online for "parasites B12 deficiency" for more info. Some of the stories are quite unpleasant to read.
"damage to terminal ileum"
Have you had any surgery to your gut?
Link about "What to do next" if B12 deficiency suspected
I don't know what celiac test I had. I'm pretty sure it was a blood test. I had it around 10 years ago and I was eating gluten as a regular part of my diet. A few times in my life I tried to be gluten free, but I was never successful in removing all of the gluten from my diet. As far as I know I don't have any symptoms of celiac disease.
In general, I don't like seafood. The only seafood I eat are cooked shrimp/prawns, tuna from cans, and salmon that I buy frozen.
I don't think internal parasites are common in my area.
I have not had any surgery anywhere in my abdomen.
My doctor ran a thyroid panel and it came back low (I don't have access to the exact values yet). So she started me on 25 mcg of levothyroxine.
Same doc also ran an iron panel and it came back low. So she told me to increase my iron supplement (ferrous sulfate 325mg) from once a day to twice a day and start taking 500 mg of vitamin C at the same time.
The doc also tested my FSH and LH and those were pretty low. No treatment suggested at this time. I already take BCPs.
My urine has turned bright yellow since starting the B Complex supplement. I understand that means my body is getting more than enough B2 each day, but I still need to keep taking the supplement because it doesn't tell me anything about the levels of my other B vitamins.
So, to summarize:
-> I am doing B12 injections once a week
-> I have increased my Vit D to 4000 IU per day.
-> I have started taking 25 mcg of levothyroxine
-> I have increased my iron from 325 mg per day with 500 mg Vit C to twice that
-> I am taking a B Complex vitamin
-> I am supposed to start taking CoQ10, but I haven't gotten a supplement yet. (Anyone have any suggestions for a good one?)
That's all for now. I'm too tired to write any more.
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