Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting seconds, pulse synchronous tinnitus (a "wooshing noise" in the ear), and double vision.

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high b12 levels?

hey all i just saw my headache doctor we are doing pretty good non of those with the lower dose of diamox, but he went over my blood test he ordered last time i saw him a month ago.

it said i had high B12, i can't find much info on it online and i'm just wondering anyone else here?

Also i'm low on calcium which i thought was weird i've never had that come up before to made me think it could be to a chance in what i eat/ maybe diamox? so again anyone else?

yea so i left the headache doctor with referrals to 3 more doctors just the way i roll i guess ugh! but at least i felt like he was helpful



I know my son's calcium has been low on higher dose of Diamox, they decreased it this week and have him on 2 tums a day and now it's normal again.

Rachel, I have weird bloods as well. My hemoglobin is a little too high, but folic is rock bottom. My B6 +B12 are up and down, mostly down.
But, when I first got sick, my bloods showed up a normal to high haemoglobin so they didn't look further. Months later I was suffering from anemia, had the B12 shots, to no avail, and not getting any better.
My neuro finally figured it out. What ever is not happening , with the lack of csf doing its correct job, it affects us all differently, as we already know..
So, it is very important, to check all the iron levels , separately.

Every thing I looked up, seemed to say, it was ok to have high levels, as the body would get rid of them , naturally.
Are you taking any kind of supplements? May be you dont need the ones you are taking?

It doesnt seem to have anything to do with Diomax but shows how important regular blood testing is.
If you can, try to improve your diet as regards the calcium.Diomax can be responsible for this altho it s usually potassium which gets hit. An extra yogurt or a glass a milk a day will bring this back to normal levels pretty quick. Cath.

Cath i'm not taking any supplements my doctor kept asking me and i for real can't remember the last time i took one it's never came up that i should be taking one, even when tested for stuff.

But when i asked my doctor today he said a high b12 level can cause diarrhea which has been an issue with me since i've started diamox.

As for potassium level it's normal i'm not taking extra potassium.

I drink milk every day as it is, though i found something saying that b12 high people should not eat as much dairy but i'm not sure how right that is so i got to wait till i get in to the doctors before i make huge changes but as it's been i been feeling so sick to my tummy all the time this past week i've cut down on eating all together but i had this blood test 2 weeks ago when my GI track was holding on to everything which was a new problem for me cus i'm normally the other way around. The doctor i saw before i got the blood test done just thought it was IBS

I found this interesting. You are not alone:

HEre're a couple of possible explanations:
"Some diseases can cause sB12 levels to increase higher than normal in some patients. These include kidney, liver, cancer, and duodenal ulcers, diabetes, obesity, and cyanide metabolism defects"
"Decreased liver function corresponds to elevated B12 levels because the liver cannot maintain B12 properly and the remainder is dispersed throughout the body."

There's probably nothing really wrong with your liver, or any of the other bad stuff listed on some of those websites. I'm sure your doc is monitoring all that with your blood tests and would have said something if there was an issue.

This explanation made the most sense to me. Get your science brains turned on, everybody:
"Now, supposing that all these steps leading to an effective absorption of vitamin B12 function adequately, then the presence in significant amounts of bacteria producing cobalamin in the terminal ileum would explain - at least theoretically - a sharp increase in absorption and lead to higher blood levels of this vitamin. If we consider some specific circumstances in the above mentioned study about folate absorption [9], we might discover the mechanism which could lead to an excessive absorption of cobalamin and to an elevation of blood levels...Under normal physiological conditions, bacterial growth in the small intestine is inhibited by the acidic environment caused by the presence of hydrochloric acid. However, with an increase in pH the small intestinal environment, normally hostile to the local microflora, becomes friendlier and enables what is called a small intestinal bacterial overgrowth (SIBO) either in case of atrophic gastritis [22] or in case of drug-induced hyperchlorhydria [23], especially among subjects taking a hydrogen pump blocking agent [such as] omeprazole [24]. ...Mild bacterial overgrowth caused by atrophic gastritis and administration of omeprazole are associated with de novo folate synthesis in the lumen of the small intestine; (2) the human host absorbs and uses some of these folates [9]. Indeed, the unexplained increase of blood levels that we are describing about vitamin B12 may also occur with folic acid."

In other words, overgrowth of bacteria in the small intestine can cause B12 levels to be too high. Read the case study at the bottom of the referenced page. The woman was given grape seed extract to lower bacteria and B12. That would seriously take consultation from a doctor - grapefruit in any form interferes with some of our drugs - it makes them ineffective. I have no idea if Diamox or furosamide are two of them.

Our meds can screw with a lot of stuff in our bodies. Everytime something in my body doesn't make sense, I look to the meds, and to the IIH.

well i'm only on diamox, so let me get reading on all those articals i don't think it's my liver or anything like that things would show up by now i'm sure in my blood tests before now. i'm never to worried about anything like that it's bad i almost want to get paid every time a doctor brings up cancer to something i might have haha no cancer yet but many years of them looking for it haha, i swear i thought thats all they could do at one point.

No one was suggesting cancer - your doc checks for that. cancer wasn't the most probable culprit - overgrowth of bacteria in the gut was the frontrunner on that. Too many bacteria in the small intestine can cause too much B12. Don't know how to test for that, if it can be at all. The solution in the article may not be possible for us, due to the meds we are on. More online research would probably provide an answer.

Seasprite when looking on line the first few things came up when i was looking was

Conditions that can increase B12 levels include:

Liver disease (such as cirrhosis or hepatitis)
Myeloproliferative disorders (for example, polycythemia vera and chronic myelocytic leukemia)

so i mean if they test me again and it's high i'm sure they will want to look in to things that one site was the only site i could find that talked about high levels of b12 and overgrowth, infact some other sights i saw talked about it making your b12 levels lower because of the overgrowth means it wouldn't absorber right.

So really it's really one i hope the doctor i'm seeing knows his stuff. Though the girl that nurse that was there when the doctor was filling out my referual told me he is a really good doctor and she sees him herself so i hope thats a good start.

Diamox can mess with your calcium, potassium, sodium, all of the essentials. My Dr said supplementing with Tums would be enough, but I take RX potassium.

I actually have very low B12, but that is just what PTC is like, different for everyone. I had a physical when I first started getting sick and my B12 and vitamin D were super lowgo figure.

Make sure you stay on top of your blood work, it is important.

I know what you mean about a lot of DRs, I see 6 on a regular basis, ridiculous!!!

I agree, Emerson!

Diamox had me in metabolic Acidosis, a blood/tissue ph level that is too acidic, which is serious. It makes you feel like you are having a heart attack. I'm on 30M of potassium a day which is the equivalent of eating 180 banannas a day. My CO2 levels (which is what's used to measure body ph) is still borderline.

Some in here are on Topamax. Anti-seizure meds are known for screwing with B and D vitamins, so those should be checked at least every 6 months or so.

My doc takes my bloodwork every 2 weeks until some problems are resolved. :(


I just found out my B12 is elevated. I haven't spoken with my doc yet, but have been searching the web and can't find much either...except for the things others have already said on here. I haven't been taking supplements or vitamins either.
I too have headaches all the time. I also have awful body pain, burny tingling all over and severe itching. I just found out my thyroid isn't functioning on the same set of labs, so these symptoms could all be due to the Hypo-thyroidism. My liver labs are all normal.
If I find out anything I'll be sure to post.

Just saw this post this morning and this is one of my high levels too. I do not take supplements either. The Dr hasn't expressed any concerns though-so I will not worry.
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