This is so embarrassing please help

I hope some one can help I was diagnosed wit graves last July

And have been treated with carbmazole how ever although I feel better some of my original under lying symptoms have remained mainly burning hot hands and feet foot and hip pain

Leg weakness plus frequent urination with intermitant incontince how ever to day I had a mortifying experince walk to work bowel incontince I had no warning I feel so ashamed

Before I was diagnosed with graves I was worried that I had b12 problem but gp said normal range mind due they also said tsh was normal took them 6 mths to check t4 to find out it was not normal my b12 was 388

My question is is it possible to be diffcient with 388 and are my symptoms the the type you would expect with b12

Apart from my graves family history is daughter with lupus an my grandmothers brother had pa

Any guidance would be gratefully received as I am so upset about today

16 Replies

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  • Hi,

    So sorry to read of your experience and yes I know how shocking that is, not nice at all. Anyway best thing I did was to go and see my GP, got a referral to gastro, had colonoscopy and endoscopy, allsorts excluded but resulting in diagnosis of abnormal smooth section of bowel (terminal ileum). So yes that explains a lot for me and I am now prescribed stuff that coats bile as bile if not taken up (in terminal ileum section of gut) is an irritant to the bowel. Now know more people on this stuff and it is lovely to be able to go out and not worry. Still it does not mean that this is the solution for you, but going to see an expert will help you a lot further than worrying, please go, if preferred you can first go and see a nurse, but best not delay, it can only get worse, its not something you want to ever happen again.

    Kind regards,

    Marre.

    PS if you want to read up on what has helped me see:

    ncbi.nlm.nih.gov/pmc/articl...

  • Thank you for your reply I have sat here all day feeling very sorry for myself and very ashamed

    Do you have pa

    Do you think it could be b12 as I have other symptoms

    I have asked my endo to do another b12 but she wants to wait 3 mths prehaps wit a b12 of 388 im barking up the wrong tree but I did read that it could show normal if you have postive antibodys

    My thyroid antibodys are all raised including the one for hashi but the graves are much higher

  • Hi Rush,

    Yes I have a diagnosis of PA (IF antibody neg though, but al the other markers, serum B12 far to low MCV 105.5 etc), dating 2001. I also have other vitamin deficiencies, my diet is very healthy, but am not absorbing much of it. I can not say if your problem is caused by PA, but it is a problem you should not just try to forget, yes its horrid, but it is unlikely to just get better on its own, so best bet is to get some investigations. It could be to do with thyroid/ graves or what ever you are taking, but speculating is not going to help you in the long run.

    See your GP, see a gastro, it will all help to eliminate things and possibly come to a diagnosis with the right treatment for you,

    I hope this helps,

    Kind regards,

    Marre.

  • I'm so sorry you have had this mortifying experience, and I don't think you're barking up the wrong tree at all - it would certainly seem that this and your test result could indicate B12 deficiency.

    The B12 Deficiency Survival Handbook", written by Dr Aqsa Ghazanfar, and "Could it be B12" both have information on tests and here is an extract from the latter:

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    This is a helpful site for information and diagnosis:

    b12d.org/b12-signs-symptoms-

    Diagnosis of vitamin B12deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels. A more sensitive method of screening for vitamin B12 deficiency is measurement of serum methylmalonic acid and homocysteine levels, which are increased early in vitamin B12 deficiency.

    Your GP should also be aware of the recommendations in BCSH guidelines:

    "In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

    bcshguidelines.com/document...

    Autoimmune thyroid problems, B12 and D deficiencies are often interlinked and they impact on all the systems of the body, especially the thyroid - it is more than possible that adequate B12 treatment could see your thyroid becoming more normal.

    thyroid.about.com/b/2010/09...

    you shouldn't have to wait three months.

  • Significant numbers of people show strong clinical evidence of B12 deficiency even though their lab results come back marked 'normal'. In Japan anything under 500 would be treated.

    So, yes it could be B12. At the same time though there is a lot of overlap with other conditions and it could be a combination of things rather than just one cause.

    Have you tried going to your doctor with a list of checklist of B12 symptoms completed - there is one on the PAS sight.

  • Hi gambit

    Yes I spoke to my endo and although I'm still on carbs which are being reduced as she said tsh is now in range I told her I was worried as although I felt much better than I did when first diagnosed hyper

    I was still have rapid heartbeat overheating not sweating at night pains in my feet and numbness and pins and needles in my hands she has but b12 on my blood forms fir next test but said not to have test for another 2 months when they check my tsh again

    It is the first time this has happened although I have had bladder problems that come and. Go one week ok next not

  • Numbness and pins and needles in feet are strong neurological symptoms of B12 deficiency and should be treated urgently. If it is not possible to see another GP or endo, it might be worth just pointing out the summary points of the latest research document Cmim BMJ- A.A. Hunt B12 :

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    Please don't be fobbed off!

  • I suffer from bowel and bladder problems like you, I do have PA antibody positive, I've been for all the tests, nothing showed up which does make me believe it is all b12 related

  • Sorry didn't mean to press submit, I realy feel for you if you get no where with the Dr's you could always buy online, and treat yourself and see if it helps then you have evidence to show your GP. Please do not be hard on yourself, I know it's not easy I had a period when I was taking spare uniform to work, but it has got easier with the b12.

    Kind Regards x

  • Thank you so much for your reply it is such a taboo subject I think the endo wanted to leave it 3 months to see if there is any change if in values if it is still showing in 300 I will get test done myself if nothing else to put my mind at rest there is one other odd symptom I have a hot mouth and numbness inside in my cheek I have read about sle tounge put not mouth numbness I'm glad to hear you are improving

    Regards x

  • Yes, Rush, you could definitely be deficient. I was deficient at 383, not very different from you at all. What's more, we decided to treat my 'deficiency' on a (very wild) off-chance and it has proved to be the best treatment yet for my Trigeminal Neuralgia, providing relief where powerful anticonvulsants have failed. TN is a neurological condition, of course, but as a great extra asset from my B12 treatment I had greatly improved urge incontinence (bladder) and an improvement to painful urination, anxiety, depression and sore joints. All that and I was originally told that my 383 B12 test result was "normal". Please don't rely on 'grey zone' test results - they should always be treated as suspicious, especially if, like you, someone is showing definite symptoms. You have nothing to lose from trying it.

  • Hi Chancery,

    Lovely to read the B12 injections have helped you so much!

    For Rush,

    I totally agree that a serum B12 reading is not a definite diagnosis of what B12 is available to the body, and if at all possible it will help to have the Active B12 test, and or MMA and or homocysteine tested. Serum B12 is not much of an indicator of how much B12 is actually taken up in the form your body needs, see:

    active-b12.com/What-Is-Acti...

    and :

    active-b12.com/content/acti...

    To find out where to have the test see:

    active-b12.com/Links

    Something to read and print off to give to your GP:

    bcshguidelines.com/document...

    You will see in the above document that symptoms and family history are just as important as numbers and that serum B12 test on its own is of little value,

    I hope this all helps,

    Kind regards,

    Marre.

  • Thanks marre

    I will do if they gp won't test me I think I will pay for myself

    Despite this incident I do feel a lot better in my self as thyroids seem to be working the doubts are because although I feel better hyper is horrid

    I have been on treatment for 10 months although symptoms associated with they throid have eased but the pins and needles and hot hands and feet and numb mouth have stayed the same it seems that we have to do the research and find our own way and with such good network of support here we have a fighting chance

  • Hi Marre, yes, indeed, the B12 has helped. So much so it has made me anxious to say anything to anyone, even while I feel like posting messages on the B12 forum and my TN forum in foot high letters. I am holding my fire, since I didn't see this (consistent) improvement until after my first monthly maintenance shot (so about two months). I want to have some more solid data before I share it with anyone. I also want to be sure it's not a fluke! Every day I nervously test my mouth and the faintest glimmer of reaction always makes me think 'Oh no, it's coming back' with dread. But yes, I am, to all intents and purposes, pain free for the first time in ten months, and I never, EVER expected that to happen. Although I fought hard for this treatment, I never truly believed it would make a difference. I just thought it was something worth trying so I could eliminate it. It frightens me actually to think how easily I could have just left it when my doctor told me I was normal. If I hadn't pushed and fought...

    What this has done is set me off on a new path to find out why I became deficient in the first place and to find out if there is something else wrong with me causing this deficiency. I'm tracking down gastric problems, such as coeliac disease, and I'm going to look into thyroid; I'm determined to cure it, not just plaster it over.

    Anyway, so far a huge success story. Let's hope it's real and it lasts...

    P.S. Of course, I AM still on anti-convulsants. The real test will be to see if I can come off those and stay pain free. If I can pick up the courage to try, that is!

  • Fingers crossed for you then!

  • Thanks! xx

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