Does this sound like B12 defeciency?

[twintastic]

I had a gastric bypass three years ago, lost over 10 stone and have taken multi vitamins and minerals ever since. I have never had any follow up from either the bariatric team and my GP, and until now did not realise the damage defeciencies can cause!

I have had a very sore tongue and mouth, to the point of not wanting to eat or drink, numb tingling fingers, whole body very cold to touch, look like a ghost, nausea and vomiting, muscle spasms, extreme fatigue and muscle pain, very breathless, forgetfulness, dry skin and now feel the muscles in the tops of my legs are wasting as I have no strength in them

I am now having to get a wheelchair as I can barely walk without passing out from lack of breath, shaky legs and spinning head. I also have very low blood pressure and hypo's, neither which I have ever suffered before. I shake nearly all day. Blood pressure has dropped to 60/40 and glucose levels are 3 to 4 (even after eating).

My B12 level is 300, my hormone levels are abnormal and one thyroid test has come back low. I too suffer from endo (last 12 years) and have severly low Vit D levels.

I was admitted to hospital with dehydration, exhaustion and a kidney infection. After explaining my symptoms, the Dr told me all my bloods were normal and they would send a pyhscy to see me !! He believed it was all in my head and nothing to do with my body (since the bypass) not being able use B12 very well. I was sent home in a wheelchair, holding a sick bowl and have now found out my kidney and white blood cells actually got worse while I was in there as I was only given one days antibiotics.

Luckily my GP visited me at home on Friday and listened to my concerns regarding B12, a nurse came soon after to take blood. My GP has agreed to start weekly B12 injections which a District Nurse will come to my home to do, and I have been referred to a biologist.

Does anyone know if a biologist would know about active B12, rather than reading a normal blood test ? My GP said he is very good at diagnosing rare problems.

I am very happy that my GP is open minded in trying B12 jabs as if I do not need them I believe you wee the excess out. But I am petrified that I have now lost the use of my legs as they are not improving, they sadly feel worse. Has anyone else suffered with muscle damage/not being able to walk and did the strength come back? I am preying the strength will come back as I have 3 boys to look after and at the moment am bedridden. My poor husband is run ragged, works full time in London and is trying to look after the children, house and cooking. My parents also help, but I am feeling increasingly guilty at not being able to do anything. This has lasted for at least two months and I really hope any damage is reversible!!

Thanks in advance for any help or replies xx

[nostoneunturned]

Hi, you do not say what type of gastric bypass you had, but the subject of neurological complications caused by diffferent types of gastric by-passes and the consequent malabsorption of vitamins and minerals is comprehensively covered in this article which also has excellent tables giving what deficiencies are likely to follow any particular type of by-pass.

This should help you to understand what is going on, and the action your doctors should be taking on your behalf.

ncbi.nih.gov/pmc/articles/P...

Note that somewhere in it is said:

"After these surgeries patients should remain on high protein and low-fat diets with vitamin supplementation and have nutritional and metabolic blood tests performed on a frequent basis"

While it is a good thing that your doctor is at least going to supplement B12 by injection, it must be recognised that you could have multiple other vitamin and mineral deficiencies and that action ought to be taken now to restore you to health and strength. The information in this article will act as a prompt for you to begin to make demands that your needs be met in an appropriate way. At the moment it seems they are not.

Even with the B12 injections there has to be enough folate in the body to methylate the hydroxocobalamin (usually the form of B12 injected in the UK)) so your folate levels should really be no lower than 10 in the range, or to put it another way, around the 3/4 level of the range.

As you are at the moment in a wheelchair and unable to do anything it might be that there is some form of State help available for you if you look into this on government sites.

I hope this helps you to start looking for the knowledge you need, and your doctors seemingly need also.

[twintastic in reply to nostoneunturned]

Thank you very much for your helpful reply.

I had Roux-en-Y surgery, which involves making the stomach pouch smaller, removing and bypassing some of the intestine. The food therefor passes through quicker and calorie intake is reduced. This type of operation restricts your food intake and produces malabsorption.

I had the operation 3 years ago, have followed the advice to take a multi vitamin / mineral supplement daily and have followed a healthy diet. This has been quite hard for the last six months as I have had nearly constant nausea, vomiting and upset stomach. I was signed off by the surgeon and never recalled by his team or my GP for blood tests.

Thank you for the link - a very interesting and informative read.

I am sure my folate level was 6, but the district nurse took blood last Friday so I will have a more up to date result. Should I ask to hold off on the B12 injections until my folate levels are higher ? I was thinking of asking not to have one until after I see the biochemist I have been referred to. I have been using an oral spray - Better You B12 Boost - for about a week. Would you advise to stop so I do not alter any B12 results that the Biochemist finds ?!

I have ordered a couple of B12 books and want to be as prepared as possible as I want to be on the road to recovery as soon as possible!

Many Thanks xx

[nostoneunturned in reply to twintastic]

Your doctor if you ask will probably advise you to stop taking all B12 supplementation on the basis that if you do raise the B12 levels then the medics will not get the true picture of your needs.

I would be holding off on any B12 injections until the biochemist has assessed all matters, for the same reason, but your doctor should advise you on this question, or the biochemist if you can phone him for advice.

If you ultimately have the B12 injections it is absolutely not necessary to wait until your folate levels have risen as folic acid to raise your folate levels will be administered at the same time as the B12 injections are begun. Just a word of warning, don't let anyone administer folic acid alone, in the absence of B12 injections, as folic acid alone can mask nerve degeneration.

Your constant nausea and vomiting ought to be investigated. Ask your GP about this problem, for it is possible to lose too much of the vital electrolytes when vomiting is sustained. As a DIY method, have you tried fresh pineapple juice for nausea? Works for me, it is the bromelain(?) in it, I think. Some enzyme unfortunately destroyed by processing.

You ought to have been recalled for assessments, but at least you now have an authoritative information source to print out to back up your discussions as there are tables related to Roux-en-Y sugery in the link.

I hope this helps and that you are soon on the road to recovering energy.

[nostoneunturned in reply to nostoneunturned]

Hi, twintastic, as you mentioned vomiting etc., this is a complication subsequent to Roux-en-Y surgery you will see noted in Table 1, only legible when Table 1 is clicked and so enlarged. This vomiting etc should be dealt with by more professional attention, rather than my own homespun remedy for a person who has not had surgical intervention.

I am no doctor but it does seem to me, from reading all the Tables, that you ought to have been having professional help in dealing with the vitamin and mineral deficiencies this surgery causes as achieving the necessary therapeutic inputs does not seem to me, and is demonstrated by your decline, to be achievable by merely taking over the counter multivits and minerals.

You will be interested to note that the occurrence of B12 deficiency after R-en-Y surgery, seen inTable 1, is 12-33%.

I trust that you will make progress back to health with the help of all medics aware of all the problems set out in the paper.

Please keep in touch.

[twintastic]

Hi Nostoneunturned,

Thank you so much for all your help and info.

I have just spoken to a Dr at my surgery (not my normal GP) who has given me some of my results - thyroid still low, calcium borderline, albumin low, Iron 11 - dropped from a week ago of 13 and B12 1400 !! She was very shocked it has jumped so high in less than a week. I stopped using the B12 mouth spray as I did not want to falsely alter any further blood tests, but it has obviously effected these.

Is it normal to have such a big jump in such a small time of using the mouth spray?

The Dr asked how long I had been on B12 injections for?! I told her I have never had them and was waiting to start to which I had the reply that I would not need them on that level It seems that my notes are saying that I have been treated with these injections before - something has gone amiss somewhere along the line! I will try to speak to my own GP tomorrow and roll on Monday's appt! Should I ask for a print out of my recent results to take with me? My surgery's range for B12 is 180 - 900.

Many Thanks,

Mel xx

[twintastic]

Hi,

I saw the consultant yesterday, I liked her and felt she listened to me.

She is certain the problems stem from my pituitary gland, which controls the whole endocrine system. I am having a complete pituitary stress test on Saturday. I am quite worried as my blood sugars are low and I think part of the test can put you into a hypo

She diagnosed me with thyroid exhaustion (Of the actual thyroid as well as me!), thinks I have coeliac disease, may have rickets in my legs (still in a wheelchair).

My B12 is being checked, she would not do the active B12 test but is doing a homocysteine test. Is this as reliable as the active test and could I have skewed any future results as I used a B12 spray for around a week - it raised my count fromm 300 - 1400.

Has anyone here had the pit. stress test? Or pit. problems?

Many Thanks All,

Mel xx