Nascobal Nasal Spray-Any users?

[Crzygirl]

Hi, I have neuropathy and other symptoms including hair loss which has gotten better since I've had the injections. My neurologist says I'm B12 deficient, I have had 10 weekly injections of 1000mcg each. I've seen a hematologist, my intrinsic factor is fine. All vitamins have been checked etc.and thyroid checked ALL thyroid tests normal also no antibioties. I am now just starting weekly a nose spray Nascobal 500mcg a week, (prescription only here in the US and expensive) they claim will work just as well. I'm just wondering if anyone else is using this? My B12 is now 800, it was 230 before injections (range is 200-1000). I still have anxiety/depression which I think may be partially because of birth control pills. I also take magnesium, folate, iron. The hematologist doesn't think the neuropathy is from B12.......I'm only 21 and sick of the run around!

[clivealive Forum Support]

Hi Crzygirl it's hard for me to comment from here in the UK about your B12 Spray but it is not uncommon for some symptoms to appear to get worse before they get better once the B12 you've had injected starts to repair the damage done to your nervous system. A lot will depend on how long you have been deficient but at least you are on the right road now.

Did your haematologist suggest what might be the cause of your neuropathy if it isn't the B12?

Is it possible that the cause of your B12 deficiency is due to the "birth control pills" you are taking as certain contraceptives can affect absorption?

Have you or your doctor "ruled out" any other causes like diet, gastric surgery, other medications, eating disorders, Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients etc?

I wish you well and bid you goodnight from here

[Crzygirl in reply to clivealive]

I've had the blood test for celiac, it was negative. No eating disorders & I have only been on the bc pill for a year. Which I suppose could be part of the problem but I did have symptoms before then. The intrinsic factor bloodwork showed-normal so it shouldn't be my gut. But I did have endoscopy a few years ago & it showed low stomach acid. So I was on PPI's for reflux but been off them a long time. Makes no sense that doc put me on them when I didn't have reflux, that only explains why they didn't work! I'm just praying the nasal b12 works. Hematologist didn't say much at all. The docs here are too specialized & very narrow minded.

[clivealive Forum Support in reply to Crzygirl]

Well lets just hope that all that happened in the past were causes for your low B12. The PPIs would have reduced your stomach acid even more than it already was and this needs to be high in order to "grab" the B12 from your food as it goes through.

It's good that your Intrinsic factor is OK as this is what "travels" with the B12 through the stomach to the Ileum and then into the bloodstream

You haven't mentioned your diet but the only way we can source B12 naturally is by eating animal products - red meats, fish, seafoods, eggs, poultry and dairy produce and people with "normal" stomachs have no problem in getting all they need.

Balance your diet by eating leafy green vegetables, sprouts, broccoli, asparagus, spinach, beans, peas etc for folate as this and B12 helps Iron to make your red blood cells.

I have read on here that some with "low stomach acid" suggest drinking something like cider vinegar before meals but as I'm not medically trained nor have I ever tried it I can't comment further. (see link below)

google.co.uk/url?sa=t&rct=j...

If you do have a problem absorbing B12 and/or other vitamins because of your low stomach acid you may need to continue with the supplements for life.

Would your doctor give you cyanocobamalin B12 injections if you asked for them? I've been having them every month for 45 years but then I have have had Pernicious Anaemia (a form of B12 deficiency) since 1972. At the time I got the diagnosis my doctor told me I either had to eat raw liver three times a day or have the injections for life. I chose the injections....

I really do hope that the sprays work quickly for you and wish you well for the future.

[Gambit62 Administrator]

IF test is prone to false negatives so your IF being fine is a long way from demonstrating that you don't have PA.

I don't use nascobal but I do use nasal sprays and find them very effective - though would have to say that I wouldn't at 500mcg a week.

Bit surprosed to find that nasal spray would be prescription only in the US - generally they are defined as vitamin supplements

How long after the loading shots were your B12 levels measured? Many people find that they need levels over the top of the scale to feel when after they have had loading shots. Serum B12 isn't a gold standard for diagnosis and is even worse when it comes to treatment.

Birth control hormones can interfere with the metabolism of B12 as well.

[Crzygirl]

I'm not a vegetarian, my b12 was checked one week after my last injection. We can buy other types of nasal spray over the counter but not the one I'm on. It's just so maddening not to have a real diagnosis for over a year. I don't know how many more doctors I can go to. I'm starting to just sound crazy!

[lcurrin]

Your post is years old, but I could have written it, including antacids, endoscopy, no acid, no celiac, but yes on intrinsic factor! Have been on B12, now just giving myself the injection, for 20 years.

Lisa

[Crzygirl]

Are you in the US? It’s hard to find a doc who realizes that B12 under 400 is putting me on the floor! My last doc only authorized 2 injections.......that was done months ago!