Hi! I joined the group on behalf of my dad who has a b12 deficiency. He is 63 years old. We live in the US but we have been to the Netherlands to speak with a b12 specialist. We found out about the b12 deficiency in February 2022 however after going through medical records and educating ourselves it was going on for much longer.
We went last September to the Netherlands, which was very helpful. He started Hydroxocobalamin shots twice a week and takes folic acid. His main symptoms have been excessive fatigue, confusion, brain fog, struggles with motor skills and completing tasks, numbness, tremors, and vision issues (blurry vision, struggles with depth perception, etc).
His symptoms got worse before they got better. However, after six months of taking the injections (March), he started to see some improvements with numbness, his tremors stopped completely, he was taking more initiative with tasks, and he was able to go out and do more as his fatigue was significantly decreasing. He was even able to take a cruise in April!
Then, three weeks ago, he was traveling with my mom and he needed to be admitted to the hospital for kidney stones. He ended up having surgery. He was on various pain medications (which he never takes and did not do well on) and then there has been some regression after surgery in regards to symptoms.
I recently read the books by Martyn Hopper and they are very informative.
My questions are: is there a link between b12 deficiency and kidney stones? He was having some kidney issues beforehand but we were thinking it was related to his blood pressures medication.
Also, I do think the set back from surgery is due to the anesthesia. I had no clue there was a correlation until afterwards. Do you all suggest loading doses again? If so, has this happened to anyone else and what is the timeframe for improving again.
Lastly, has anyone has depth perception issues due to b12 and seen improvements with injections? We know it could take up to two years but just looking for some personal experiences.
Thanks for all your help!
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mdurbin35
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I went down with both the shingles and the nurovirus.
My B12 symptoms returned with a vengeance so I returned to a loading dose. Everyone is different so it is hard to determine how long your fathers recovery will take. You witnessed a marked improvement in his symptoms previously so hopefully given time he will regain this given time.
This should answer your question with regard to kidney stones.....
The B vitamins which include thiamine, riboflavin, niacin, B6 and B12 have not been shown to be harmful to people with kidney stones. In fact, some studies have shown that B6 may actually help people with high urine oxalate.
Hello I hope you dont mind me asking .please can you give me the name of the specialist you saw in Holland . I will be going there in June and would like to see B12 doctor.I was diagnosed about a month ago and not doing too well despite 6 loading doses.Next injection not till July!!.
Its Lovely to hear your dad is getting better treatment and I hope he con tinues to enjoy quality of life and not too many distressing B12 deff symptoms .
I was 62 when I found out I had PA. One of my symptoms was that I became very short sighted. This was one of the first things to get corrected. Within 3 days of taking B12 my vision became normal. My neurologist said that this was quite typical. People with B12 deficiency usually recover quite quickly once the deficiency is sufficiently addressed.
That being said I am not 'normal' and don't think I ever will. I tire easily and still have balance/ coordination problems. And I still have frequent urination which is such a hassle. It is much better though. At the beginning I had no urinary control at all.
But it is very easy to regress without sufficient B12. My GP told me to stop taking B12 when blood tests show I had a level of 1700. Like an idiot I followed his advice. Within 2 weeks my symptoms starting coming back. But they corrected quickly once I started taking B12 again.
Apparently B6 deficiency can lead to an increase in kidney stones. Which is linked with B12.
From what you say I think your father would benefit from loading dosages again. What a shame there isn't a home B12 monitor like there is for blood sugar. It would give us much better control over PA.
To date I have found no reason not to always try a trial of .50 mg every day. Provided all the cofactors and potassium and magnesium levels are within range. There is no known risk and the benefits can be substantial.
Nitrous oxide (which is used with anaesthetic) depletes the body of B12 and should be avoided in the future. I would highly recommend extra doses until his symptoms improve.
hi mdurbin, first can I say your dad's blessed he got you looking out for him. Was vitamin d levels checked also and is he on supplements? I had low b12 and vitamin d, put on high dose vitamin d, but didn't know then, what I know now, to take vitamin k2 to make sure calcium gets to the bones and not soft tissue, which can califry in your kidneys ,kidney stones are a very painful thing to go through, hope all is improving.
and it must be k-2, not just k. Myanna23 is right about the k-2.
When. deficient, it can take 3 months for the D to build up.
also you can overdose on D, but if low take high does but get tested every 3-6 months to ensure the levels are not too high.
I had my gallbladder out which helps metabolize fat soluable vitamines (A, D, E, K) (a "deck" of cards but without the C).
So i ended up severely low on D. I now take 10, 000 IU daily in the winter, and 5, 000 IU in the summer when I am exposed to more sunlight. This keeps me on the higher end of normal.
On occasion, Whenever a doc orders blood tests, I have them throw in D.
I don't know if you and your family are from south of the Mason-Dixon Line, but if you are you probably drink a lot of iced tea. My husband drinks iced tea every day and he had kidney stones a couple of years ago. Apparently tea can cause kidney stones. This is a blurb I found online:
Can you drink tea when you have kidney stones? Tea should be avoided when suffering from kidney stones. While the most common cause of kidney stones is simply not drinking enough water, tea contains oxalates, the key chemical that also plays a role in the formation of kidney stones.
Was he tested for coeliac disease (spelt celiac in US)?
UK health guidelines suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
Some forum members report that a gluten free diet helped them even when they do not have a coeliac disease diagnosis.
Tested for H Pylori infection?
Any chance of an internal parasite eg fish tapeworm as this can lead to B12 deficiency.
Have his doctors reviewed any medication he is on as some drugs/medicines have been associated with low B12 levels in some studies eg metformin, a diabetes drug.
I need to look into his folate levels. He does take folic acid with each injection. His thyroid is good. We have had that looked at especially because he had severe fatigue (which has improved with injections although some days are worse than others at times).
He does take Vitamin D. He eats a pretty clean diet; but also lots of meat. He has also been tested for various autoimmune diseases as well. He was negative for all of them.
We suspect that his mom (my grandmother had PA) just looking back but of course we can not confirm that. Plus, the doctors in the US thinks tablets will work when we all know thats not the case, so its a challenge at times discussing B12 with them.
so when they say, b12 injections are harmless, they are unless there is a preexisting liver or kidney function issue. however, if there isn't then b12 is indeed not toxic nor will it cause liver or kidney issues and it won't cause kidney stones.
I’m so glad he has you to advocate for him. I would suggest upping the injections to a minimum of two a week. I currently take three and have done for at least a year. I cut back once to once a month and I slid backward fast. I went back to three times a week and feel much better. I also was not diagnosed until in my 60’s. I wouldn’t hesitate to increase frequency as his symptoms dictate. Many members here have taken daily shots for extended periods of time
I wold also check a cortisol level ( cushings’s syndrome). It will cause calcium to leach from bones and create kidney stones. (Other signs are easily bruising, puffy of wide face and abdomen and thin arms and legs: think cushions on abdomen and face) Gouda Cheese has Vitamin K2 in it as MK4: I eat some every day. It directs calcium into bones so also does K2 as MK7 you can order supplements on Amazon. If I don’t eat about a 3” by 2” square of gouda a day, I supplement on those days. My pipes are pristine even though my total cholesterol is over 300.
He may also have MTHFR gene mutation which can effect energy as well. Methylcobalamin supplement at 400mcgs/day keeps me well.
I do much better on methylB12, I believe because I have two SNPS on the MTHFR gene ( that just means my body does a poor job of methylating.-a process necessary for many bodily processes. ) It can be purchased from England as a powder that you reconstitute for a reasonable price or from Germany ready to inject.
Good luck to you and your Dad from a fellow American
"One pharmaceutical company, Nattopharma, was the source of vitamin K for five of the nine clinical trials."
Although it doesnt necessarily imply any fault with the studies, I noted that Nattopharma have been implacated in fraudulent payments to Vitamin K researchers:
So the current evidence doesnt sound very convincing to me. However there are some interesting current trials underway such as this Danish randomised, double-blind, placebo controlled trial : bmjopen.bmj.com/content/13/...
Right now I don't think there is good evidence to support K2 Mk.7 supplementation specifically but instead it seems the weight of evidence better supports keeping up a good Vitamin K intake from diet, whatever the Vitamin K form might be.
Here is an old but still useful presentation on Vitamin K from a Vitamin K researcher :
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