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Surgery and B12

mdurbin35 profile image
36 Replies

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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36 Replies
Jillymo profile image
Jillymo

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.

I do hope your father makes a speedy recovery.

mdurbin35 profile image
mdurbin35 in reply to Jillymo

Thank you so much!

Rigsby40 profile image
Rigsby40 in reply to mdurbin35

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 .

Many thanks

Sharon

Nackapan profile image
Nackapan

Anything 'extra ' always sets me back.Always takes longer now to get 9ver stuff.

Extra b12 Injections will probably help recovery.

Certainly do no harm.

What was the regime set when he saw a doctor I the Netherlands?

I've had several problems with vision.

Pattern glare

Light sensitivity.

Im still making improvements over 4 years in.

I wish him well

mdurbin35 profile image
mdurbin35

The doctor in the Netherlands suggested two shots weekly. We also learned that he responds better to Hydroxocobalamin.

charks profile image
charks

Hi there,

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.

mdurbin35 profile image
mdurbin35 in reply to charks

Thank you for this information about b6. I will certainly look into that more. PA is very interesting and challenging to learn about.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

I hope your dad improves soon.

Did your dad have nitrous oxide as part of the anaesthesia for his operation?

Nitrous oxide inactivates B12 in the body.

Sally Pacholok, a US campaigner on B12 deficiency issues, discusses the effect of nitrous oxide on the body in her book "Could it be B12?"

Nitrous oxide is in gas and air mix, used as pain relief in labour and other medical procedures. I think gas and air mix is also called entenox.

Search online for "nitrous oxide B12 deficiency" for more info.

Medical/research articles may have details that could be upsetting.

Some B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

There is a PAS support group in the Chicago area.

B12 Info.com website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

Above website mentions a conference in Rotterdam that your dad's doctors might be interested in.

Your dad's doctors may also be interested in Club B12.

This is a group of researchers and other interested people who are looking into B12 issues.

They meet regularly on Zoom and have a conference in Cambridge, UK later this year.

club-12.org/

Below is one of the best B12 articles in my personal opinion.

Could be a good one to pass to his doctors.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Table 1 in above article is about frequent wrong ideas about B12 deficiency that health professionals may have.

I'm not medically trained.

mdurbin35 profile image
mdurbin35 in reply to Sleepybunny

Thank you so much! I will dive into this information.

wedgewood profile image
wedgewood

Yes the Nitrous Oxide in the Anaesthetic Gas definitely depletes Vitamin B12 . So your father needs a top-up now .

mdurbin35 profile image
mdurbin35 in reply to wedgewood

Thank you!

WIZARD6787 profile image
WIZARD6787

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.

mdurbin35 profile image
mdurbin35 in reply to WIZARD6787

Thank you!!

B12life profile image
B12life in reply to WIZARD6787

.50 mg or 50mg

of B6 (P5P version)

misskritti profile image
misskritti

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.

mdurbin35 profile image
mdurbin35 in reply to misskritti

Thank you! I will make sure to speak with the doctors about this going forward.

Myanna23 profile image
Myanna23

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.

mdurbin35 profile image
mdurbin35 in reply to Myanna23

His vitamin D is low. He is taking supplements for this. I will look into vitamin k. Thank you!

B12life profile image
B12life in reply to mdurbin35

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.

mdurbin35 profile image
mdurbin35 in reply to B12life

Thank you!

MoKayD profile image
MoKayD

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.

mdurbin35 profile image
mdurbin35 in reply to MoKayD

This is very good information. We live in Louisville, so lots of tea in the south! Thank you!

WIZARD6787 profile image
WIZARD6787 in reply to MoKayD

Is that why they talk funny? 😀

B12life profile image
B12life in reply to WIZARD6787

who's the one that talks funny! lol

MrJustatip profile image
MrJustatip

Yes sir, you are on the right path. We now never take folic acid, we only use methyl folate and methylcobalamin. good luck

Sleepybunny profile image
Sleepybunny

Hi,

It's quite common for people on this forum to report Folate, Iron and Vit D deficiencies as well as B12.

Has your dad and the family looked at folate, iron and Vit D results?

Also quite common for people here to have thyroid issues.

Might be worth putting any thyroid results on the Thyroid UK forum on HU.

In UK , doctors often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests that doctors can order.

Thyroid Function tests

thyroiduk.org/thyroid-funct...

What do his doctors think caused his low B12?

Did they discuss his diet?

Has he been tested for PA (Pernicious Anaemia).

Testing for PA

pernicious-anaemia-society....

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.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

When I searched online for "Sally Pacholok B12 slide show" I found a presentation she gave to a conference on aging which might be of interest.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

mdurbin35 profile image
mdurbin35 in reply to Sleepybunny

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.

MrsTuft profile image
MrsTuft

My B12D was just about controlled with injections until I had surgery and I crashed and am still recovering with daily injections.

mdurbin35 profile image
mdurbin35 in reply to MrsTuft

Thank you. I hope you feel better!

B12life profile image
B12life

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.

mdurbin35 profile image
mdurbin35 in reply to B12life

Thank you!

Technoid profile image
Technoid

No, there is no connection, but you might find this interview useful, has many interesting insights about helping to prevent kidney stone formation:

m.youtube.com/watch?v=qq1nk...

mdurbin35 profile image
mdurbin35 in reply to Technoid

Thank you!

KEFNB profile image
KEFNB

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

Technoid profile image
Technoid in reply to KEFNB

Here are three good articles on MTHFR:

Short Story : cdc.gov/ncbddd/folicacid/mt...

Longer Story: skepticalraptor.com/skeptic...

Background Story : undark.org/2021/01/04/the-f...

With regard to Vitamin K, a 2020 systematic review of controlled trials concluded that:

"The findings indicate that vitamin K does not consistently prevent progression of calcification, atherosclerosis or arterial stiffness."

from mdpi.com/2072-6643/12/10/2909

They also noted that:

"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:

ref : observantonline.nl/english/...

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 :

m.youtube.com/watch?v=jgfhS...

mdurbin35 profile image
mdurbin35

Thank you!!

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