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Dollywagon
06-08-2014, 01:45 PM
I'm looking for interviewees who have been diagnosed and treated for b12 deficiency but found, even after they have commenced treatment, that some of their symptoms still remain.

Other problems relating to diagnosing and treating vitamin b12 deficiency may be applicable to some people ie they discovered, by accident, that b12 reduced symptoms of an illness they were unaware were related to that deficiency.

I hope it goes without saying that any information an interviewee may give is guaranteed to be strictly confidential.

Many thanks.

WeaselFire
06-09-2014, 01:31 AM
Forget confidentiality. :)

I may be a different case than what you're looking for, my B12 deficiency, as well as anemia and a host of other symptoms, came as the result of chemotherapy and radiation. The big symptoms were digestive tract, diarrhea, weight loss, constipation and so on. Being tired and light-headed was ascribed to the deficiency, but may have been just a part of the whole ordeal.

After recovery, getting back on a regular diet and with supplements, I'm past most of the issues. I still have some of the anemia which, I'm told, affects the B12 getting into my body. I still get the occasional symptoms, mostly getting tired in the day and occasional intestinal issues. But over the counter treatments take care of most of that.

I have one doctor who tells me that some of my nerve issues are related, but with chemo, radiation, surgery and the whole package I don't think he really knows. The nerve damage is tingling, the sensation of being touched by a hair or insect that isn't there and similar. I do have other potential causes for some of this, diabetes for example, but again, keeping on medication keeps it in check.

Before the cancer and following treatments, I had no symptoms that B12 supplements probably affected, so I may not fit what you're interested in. Treatment for me was supplemental B12 injected during chemo and for a while afterward, then just supplements. My deficiency was compounded by diet and anemia, I lost 50 lbs in a month on chemo and radiation. Coincidentally, the month I stopped doing Weight Watchers. :)

Jeff

Dollywagon
06-09-2014, 08:38 AM
Erm, because it may be as a result of treatment then you might not fit - or you might have given me another idea!

That aside: Working on the assumption that it was chemically enduced (and it could have been that you already had a malabsorption problem that was exaggerated by the chemicals) the end result was that you 'ran out.' It takes a lot to build those stores back up because what you put into your body isn't necessary what is usable or is recorded in blood tests.
No way should you still be, at any level, anaemic - if that is what is coming through on the blood results.
What should be happening is that your neurological symptoms are being treated. Once treatment commences the blood tests that you have are vitually useless, yet most doctors will presume you are treated once the levels are in within the normal range.
Since it's unlikely that you had tests to establish if you do have a malabsorption problem, the presumption being the treatment caused it, then I would think it best to play on the safe side and get treatment as if you DID have a malabsorption problem. The minimum recommended oral treatment is 1,000mcgs per day (and then you have to be careful as to which you buy)
When it comes to you not showing symptoms prior to your chemo, most people don't recognise the early pre-progessive symptoms as being symptoms anyway, or they are attributed to other, more well known illness - such as diabetes.
Some common, usually early symptoms are: sore tongue, increasing hair loss (can be body hair as well as head) recurring indigestion, burning soles of the feet, pins and needles, increasing muscle weakness, cracking to the sides of the mouth (usually attibuted to folate deficiency which works on the same metabolic pathway as b12), increasing vision problems - and diabetes. One that most patients notice, as opposed to it being a noted symptom, is a loss of half moons on the fingers and not the thumbs.
There are many more but if you noticed some of these prior to cancer treatment then you may have a malabsorption problem and the treatment just made it worse.

boron
06-09-2014, 01:39 PM
Not my personal experience, but some theory:

1. When you have vit B12 deficiency and you start with supplements (either oral or injections) it may take few weeks/months for all symptoms to go away.
2. Vitamin B12 needs another vitamin--folate--to act properly, so folate deficiency will cause vitamin B12 deficiency even with normal blood vit B12 levels. Folate deficiency symptoms also resemble vit B12 def. symptoms. This is a well known issue but some doctor could still overlook it. Folate def. occurs mainly in chronic alcoholics and during treatment with certain drugs, such as methotrexate (for cancer or rheumatoid arthritis).
3. In a genetic variant of pernicious anemia, stomach does not produce enough factor required for vit B12 absorption, so oral supplements would not help. Severe chronic gastritis could also affect production of that factor.
4. Severely affected ileum (last part of the small intestine), for example, in Crohn's and possibly in celiac disease or in lymphoma, can prevent vit B12 absorption, so again, oral supplements would be less effective.
5. In an untreated diabetic or chronic alcoholic, long-lasting peripheral neuropathy (from other reasons that vit B12 deficiency) may become irreversible, so correcting vit B12 levels may not reduce numbness and tingling in the feet and hands.

Dollywagon
06-09-2014, 03:16 PM
I think what the danger is here is that we end up reinforcing old misunderstandings. The situation is a lot more complex - which is why I've been writing a book on it.

Just as an example - symptoms usually never 'go away.' They usually improve but dependant on when the deficiency has been identified along the course of the illness progression. This fact is more easily understood when you realise b12 is a cofactor in 2 metabolic pathways - one of which is relative to neurological damage. So, you get treatment (and the correct treatment not just any old thing to bring serum b12 levels into the normal range) when for instance you have a sore or swollen tongue and you have a very good chance of reversing damage and not degenerating further. You get treatment after you are having difficulty with proprioception problems and you have much less of a chance of reversing the damage totally.

Dollywagon
06-12-2014, 04:17 AM
Weaslefire - I don't know if it's relevant to your situation but b12 deficiency and stomach cancer are linked.

C.bronco
06-12-2014, 05:40 AM
My dad had that. Once diagnosed and treated, it made a world of difference.

Dollywagon
06-12-2014, 10:37 AM
I think you must mean the b12 deficiency rather than the stomach cancer, - but the statistics (for b12 deficiency) now suggest that up to 1 in 3 people will get it. The problem is that most people find it difficult to get a diagnosis and depending on how far along the illnesses has progressed is relative to how effective the treatment works as a standard protocol depending, usually, on where you live.
On the other hand a lot of people will get treatment, and it will treat the symptom that is recognised at the time - but then they progress to getting 'other' symptoms that are not commonly associated with b12 deficiency and of course the presumption is that the b12 deficiency is already being treated...when often the medication is not enough.

Maggie McT
06-12-2014, 11:07 AM
Well Dollywagon I am reading this thread with interest! I've been treated for B12 deficiency twice and I'm learning more from your posts than I have anywhere else! (Although not sure I understand all of it!) My B12 was very low first time and kept going down so I was investigated for malabsorption problems and they found nothing so in the end gave me 6 months of B12 injections. This was repeated a few years later when blood tests showed B12 again below normal. I have always been a bit anaemic for some reason!

cornflake
06-12-2014, 11:07 AM
I feel like I'm missing something, with the talk of medication and symptoms.

Does this not usually go -

"You're B12 deficient, take a supplement.'

*months pass*

"Your B12 levels are fine now."

Dollywagon
06-12-2014, 03:57 PM
Cornflake is spot on with how it usually goes. It's not the correct thing but that's what happens!

Maggie - If you eat a normal diet (and I'm including most vegetarians in this) then you shouldn't have a b12 deficiency. You have a malabsorption problem. They just haven't found what it is. That is because they don't usually test for the major cause of b12 deficiency - in fact there isn't a recognised test in Europe and in many countries the other test isn't available on insurance.

The other problem is that what they are testing to ensure you are 'not' deficient is your blood and the test ranges they use are designed to identify when a b12 deficiency would, historically, cause anaemia.

There are two problems here (there are more but I'd complicate it too much): firstly the amount of b12 in your blood gives no indication as what is happening at cellular level.
Secondly; All they are treating is possible anaemia. The level they are raising your blood b12 to is totally inadequate to treat problems within nerves and cells.

If you understand the functions b12 performs in the body this will make it easier to understand:
As I said earlier it is a coenzyme in 2 metabolic pathways.
These pathways convert homocysteine and also ensure the continued division of cells relating to DNA. The other converts a short chain fatty acid.
If b12 absorption is impaired the resulting complications are vast:
A build up of homocysteine can result in heart attacks or strokes. The impairment of DNA means that cells die or fail to replicate. It also means you get fatty acids building up around nerves (those with sciatica please take note) It is also known that the myelin which protects nerves, erodes causing nerve damage and eventually axonal death. All these problems result in tingling, 'electric' shock sensations, numbness, paralysis, premature aging, loss of cognitive skills, hair loss, balance problems, fatigue, dementia ......... the list is endless.
Oh, and anaemia. But anaemia is the easiest to both identify and treat. But all they are doing in contemporary medicine is exactly that, treating the anaemia (or the point when you might become anaemic).
The remainder, for numerous reasons, is much more complicated to treat.

It might give you some idea of how far this illness can go if you understand that one of the top 5 malpractice suits in the US today is for b12 deficiency that has been misdiagnosed as multiple sclerosis.

PLUS - they are still not looking at the major cause which also causes numerous other malabsorption problems.

Maggie - get treatment and treat your symptoms rather than your blood. You can't overdose on b12.

Anyone want to beta read a chapter of a book I'm writing I've got a posting in that section!

Cath
06-12-2014, 05:10 PM
A note of caution regarding medical advice obtained on the internet: see a real flesh-and-blood doctor in person. While folks online may know their stuff, they don't know you, your situation, tests already performed, situations ruled out, etc.

Dollywagon
06-12-2014, 06:09 PM
Of course.
Any information is intended to give patients the underpinning knowledge to ask the right questions of those medical professionals.

And I should also point out that nothing I say cannot be evidenced with referenced works both contemporary and historical - all I've done is join the dots.

Mind you, I don't do a bad chapter on Observational, Mechanical and Defensive medicine, part of which covers the fact that because law is such a strong influence in medicine that it can prevent medical advancements and many of them, as the problems with multiple sclerosis are starting to prove, only get highlighted when they get as far as a courtroom.
Should be avoided at all costs.

Cath
06-12-2014, 06:23 PM
Yep, not disputing that at all Dollywagon - just reminding folks who may be reading this from on or off the board (you don't need to be a member to read this section of the forum).

Dollywagon
06-12-2014, 06:26 PM
No problem. I understand completely.

Canotila
06-13-2014, 10:15 AM
Cornflake is spot on with how it usually goes. It's not the correct thing but that's what happens!

Maggie - If you eat a normal diet (and I'm including most vegetarians in this) then you shouldn't have a b12 deficiency. You have a malabsorption problem. They just haven't found what it is. That is because they don't usually test for the major cause of b12 deficiency - in fact there isn't a recognised test in Europe and in many countries the other test isn't available on insurance.


I just consulted with a nutritionist on the subject on behalf of a client today.

He informed me that as people age, they produce less stomach acid. And the things that make stomach acid (forgive me, I am a lowly CNA and mostly wipe bottoms) also produce the factors that make it possible to utilize B12. That is why he recommends people take cyanobalamin when taking B12 supplements, as it's already in a usable form. It's also why so many neurological problems set in as people age. So, it's not so much malabsorbtion as people's bodies aren't producing the correct factors to make it usable.

I also remember he's not a fan of antacids, but am not sure if it's because of it creating problems with protein digestion or issues with B12 when used long term.

He also said that problems stemming from B12 deficiency can be corrected if it's caught early enough, but that if it goes for too long it becomes permanent.

Dollywagon
06-13-2014, 10:44 AM
Correct, or half way there - but if it's a lack of stomach acid, that's malabsorption.
Also you have to get the quantities right. What tends to happen is that, once again, you get treatment (whether supplements or prescribed) that bring the serum b12 back into the normal range, which is usually inadequate.

With regard to the cyano rather than hydroxo or methyl, that belief is founded from the structure of b12.
However it is horses for courses. The structure also produces methyl. So some argue that methyl is best, others that cyano or hydroxo is best.
This is a purely personal perspective, but cyano for me is useless - my symptoms are returning within a week or so.
Cyano also has a shorter half life than both hydroxo and methyl.

Limiting low stomach acid to the elderly, is in itself limiting and although it is more prevalent in the elderly it certainly isn't exclusive.

I hear a lot of medical professionals saying b12 damage can be permanent. The funny thing is, you can rarely get anyone to acknowledge that individual damage actually is permanent. And that is because there is confusion regarding the illness progession and the treatment.

The fact remains that in your case it is recurring. You say you have anaemia, but I don't know what type, a macrocytic or a microcytic? My guess is, you probably have both types. Either way the bottom line is that you need it treating and you need the underlying cause establishing. Because these things don't, as you may be starting to understand with the b12, simply produce a problem with the blood. The blood is an indicator of an underlying issue.

Antacids are a noted problem with b12. Also if you have had nitrous oxide, operation/dentist/laughing gas, oxidizes b12.

I'm editing before I go shopping! What you also have to remember is that many, many, people don't show the haematological indicators of either anaemia and/or a low b12 level.

Canotila
06-13-2014, 11:08 AM
The way he explained it wasn't exactly that stomach acid deficiency caused the B12 deficiency. Rather, that the thingies (my brain keeps saying "receptors!" and that's the wrong word) that make the stomach acid produce some other stuff that is responsible for B12 conversion. So reduced stomach acid production isn't the cause, it's a sign that the acid producing thingies aren't working well and aren't producing that other stuff that helps with B12.

I don't agree with it being malabsorbtion though. That implies a problem with the absorbing portion, which isn't the case at all. For example, if you aren't able to digest corn and it passes through the digestive tract intact, you don't call that malabsorbtion. It's a digestive problem because the corn was never broken down to usable form in the first place. Same thing with that particular B12 problem. It was never put into a usable form.

I never said low stomach acid was limited to the elderly. Just that it's common as people age and plays a role in a wide variety of age related neurological diseases. If someone developed symptoms of those diseases at a young age, I'd certainly hope they'd get it checked out to rule it out as a cause.

Dollywagon
06-13-2014, 01:20 PM
Okay.
All I did on here was ask for people's experiences. I can't keep knocking down the myths all the time. I've just spent 4 years studying the problem after nearly dying from it and I know enough to write a book that hopefully will help many people.

If you look at what Cornflake put ie your b12 levels are normal now. And then what Maggie put: she got her anaemia treated but it keeps coming back. And then you look at what the nutritionist put: it can cause neurological damage - Look at the gaps. Cornflake would be quite satisfied with hearing b12 levels are normal, because that's what most people think. Maggie is happy when she gets treatment as long as her anaemia goes.
The nutritionist is concentrating on parietal cells. Fine.
Where does the neuro damage come in?

I need to clarify that I'm not sitting here taking time out to convince you, there's much more important work to do. It would, literally take a book to explain it all. Which is why I wrote the book.
If anyone wants to come on with their experiences, fine. People like Maggie need to know a little bit more about it now, because she could get sicker and I hope I'm not so selfish I wouldn't point that out to her simply because the thread is asking for experiences.

L M Ashton
06-18-2014, 01:11 PM
There's also the MTHFR pathway defect aspect of things. If you have the "right" MTHFR pathway defect (there are many), then with B12, the only form you can absorb is methylcobalamin.

I've had symptoms of B12 deficiency for decades. I've tried taking in other forms of B12. They did nothing. Only methylcobalamin helped me.

jennontheisland
06-18-2014, 06:18 PM
I seem to run through B12 faster than water. Levels were so low they barely registered. Massive daily doses for 3 months brought me barely up to the bottom of the range. Mostly, they figured the depression was a result of the low B12 (since depressive-like symptoms can result from low B12), but it was still there once my levels were up. Turns out I really was depressed.

Dollywagon
06-18-2014, 09:53 PM
It might have been the cause of the b12 deficiency that causes the depression. Depression tends to be situational or chemical - if your situation wasn't causing it, then...

Anyone's doctor been particularly helpful or dismissive in these cases?

And LM, what would you say the symptoms of b12 deficiency are?

I've just realised I sound like a school teacher, sorry!

What I'm getting at here is what you think b12 deficiency is: what are the symptoms, how seriously do you take it, how seriously does your doctor take it, did you get very sick before being diagnosed, very sick after being treated, do you have on-going symptoms that you think maybe are related to your b12 deficiency? That kind of thing generally.

... and I'll throw this one into the ring to get people thinking - did you know that b12 deficiency can result in dementia, for instance?

Cath
06-18-2014, 11:13 PM
Where do you plan to use this discussion, Dollywagon? Because it's starting to sound more like something that should be in Conquering Challenges or another part of the forum, not here.

I am deeply uncomfortable with the discussion of medical issues without evidence to back it up. If you have sources, can you please quote them.

Dollywagon
06-19-2014, 08:29 AM
What, with dementia?

Dementia brought on by b12 deficiency is medically known as one the 'reversible' dementias.
Here you go http://www.helpguide.org/harvard/alzheimers_dementia.htm

You know, it's no wonder people don't get illnesses flagged up when people get 'uncomfortable' even mentioning them. B12 deficiency dementia is all over the internet - yet you don't know about it and speak as if I am mentioning some kind of 'unmentionable!'

Oh, and because I nearly died of it but was met with ignorance within the medical profession, I wrote a book. Now I'm looking for case studies to go in it (not the ones on this page, obviously) - which will of course, be anonymous and with permissions of people who have encountered problems with diagnosis and treatment. Generally speaking because people don't know something as well known as the fact that b12 deficiency causes things like dementia (even many doctors!)

Now I can't see what is wrong with asking people if they had problems getting a diagnosis or if they still had symptoms after treatment - but apparently it is a problem, yes? Yet funnily enough I still see this as being a very, very, important subject and worth writing about and worth passing on the message. But you feel 'uncomfortable' about it?

WeaselFire
06-19-2014, 09:35 AM
No way should you still be, at any level, anaemic - if that is what is coming through on the blood results.
Thanks for the diagnosis, but it brings up two questions:

1) If you already know all the clinical information, why ask the question?

2) Are you really a medical doctor or just playing one on the internet? Either way, I'll stick with the experts I'm already dealing with.

Jeff

cornflake
06-19-2014, 09:41 AM
What, with dementia?

Dementia brought on by b12 deficiency is medically known as one the 'reversible' dementias.
Here you go http://www.helpguide.org/harvard/alzheimers_dementia.htm

You know, it's no wonder people don't get illnesses flagged up when people get 'uncomfortable' even mentioning them. B12 deficiency dementia is all over the internet - yet you don't know about it and speak as if I am mentioning some kind of 'unmentionable!'

Oh, and because I nearly died of it but was met with ignorance within the medical profession, I wrote a book. Now I'm looking for case studies to go in it (not the ones on this page, obviously) - which will of course, be anonymous and with permissions of people who have encountered problems with diagnosis and treatment. Generally speaking because people don't know something as well known as the fact that b12 deficiency causes things like dementia (even many doctors!)

Now I can't see what is wrong with asking people if they had problems getting a diagnosis or if they still had symptoms after treatment - but apparently it is a problem, yes? Yet funnily enough I still see this as being a very, very, important subject and worth writing about and worth passing on the message. But you feel 'uncomfortable' about it?

I think that's pretty well known, and that Cath meant in a general sense, not that she's not capable of clarifying for herself.

Dollywagon
06-19-2014, 11:01 AM
Response to Weaslefire
Then you don't need me to respond - or do you?

I wanted to know how much you perceive you know.

You might want to have a peek at this link https://www.youtube.com/watch?v=BvEizypoyO0

But do you know what I'm really annoyed about - this is a writing site. Words have power, words can change things, they can challenge things, they are important. The written word is probably the most important communication facility we have. And the people on this site should know this better than anyone! Or are we all only interested in writing fiction these days?

I've had a request for Betas up on this board and not one person has responded. They don't want to know - except of course unless they are seeking to be objectionable on this thread.

You want to stick with the experts - off you jolly well go - I'm not interested in convincing somebody who draws an opinion without being in full possession of the facts. Anyway I've put the link up now so you can look at the pictures - please don't tell me that they are worth a thousand words, because that makes this site null and void.

Cath
06-19-2014, 02:44 PM
Look, if you want people to interview for case studies, by all means ask for people to interview for case studies.

What I don't want to see is the internet doctoring; e.g. making statements such as:


No way should you still be, at any level, anaemic - if that is what is coming through on the blood results.
What should be happening is that your neurological symptoms are being treated. Once treatment commences the blood tests that you have are vitually useless, yet most doctors will presume you are treated once the levels are in within the normal range.


Maggie - If you eat a normal diet (and I'm including most vegetarians in this) then you shouldn't have a b12 deficiency. You have a malabsorption problem. They just haven't found what it is. That is because they don't usually test for the major cause of b12 deficiency - in fact there isn't a recognised test in Europe and in many countries the other test isn't available on insurance.

The other problem is that what they are testing to ensure you are 'not' deficient is your blood and the test ranges they use are designed to identify when a b12 deficiency would, historically, cause anaemia.

There are two problems here (there are more but I'd complicate it too much): firstly the amount of b12 in your blood gives no indication as what is happening at cellular level.
Secondly; All they are treating is possible anaemia. The level they are raising your blood b12 to is totally inadequate to treat problems within nerves and cells.


It might have been the cause of the b12 deficiency that causes the depression. Depression tends to be situational or chemical - if your situation wasn't causing it, then...

You don't know the situation or tests that have been done in these cases. We have no substantiation that you are a doctor or an expert in this field except your say so. So I'm asking you to provide valid evidence and sources for the statements you're making if you insist on commenting and advising on medical issues.

Better still, since you're the one asking the question, listen to the answers without the need to engage and dispute what you're hearing.

While this is the right forum to ask for people to interview, it isn't the place to comment on or discuss individual's medical issues. Is that clear?

Dollywagon
06-19-2014, 06:15 PM
If you could adopt a less schoolmarm tone, I would appreciate it. Thanks.

I came on and put a very reasoned post. Advising someone to get anaemia checked out is not providing medical advice. It's actually very sensible.
I've put up two links so far - one the dementia and one, if people watch it, would cover most anything else.

You're right, I've no need to comment - but if someone on the boards had a lump in their breast, would you advise people not to comment then? Or would you consider it medical advice if they suggested to get it checked out?
Saying there can be other causes for depression, is not providing medical advice.

As I say, I've put up 2 links - and it appears no one has even looked at them yet. Yet you still want me to provide evidence for what I am saying?

If we go back to the original posting all I was asking was if people had problems with diagnosis or treatment and promised confidentiality if they wanted it. It seemed simple enough at the time.

Cath
06-19-2014, 06:28 PM
I suggest you take another look at those statements I quoted. They don't say "see your doctor", they do make authoritative statements about the contributors' medical condition. There is a difference and it's an important one.

We're done here. If you have a problem, take it up with Mac.