Hi I am new on here, but have been reading the Forum on and off for a several weeks now after trawling the internet trying to find out what was wrong with me.
probably two years ago, I started going to see my doctor with various symptoms, initially it was pains in my leg, and not being able to lift or bend my leg properly, I was given an Xray? and told there was nothing wrong, I was then starting to get out of breath, couldn't walk up a flight of stairs, couldn't even walk up any slight inclines without shortness of breath keep having to stop, and my legs feeling like lead. I was having palpitations, never mind the fact that I was tired all, and at the same time not having a decent nights sleep. I felt like I was a hypochondriac because I was just kept being told there was nothing wrong with me.
I had tried to join a gym to see if I could get myself fitter and was referred back to my doctor as my BP was through the roof so was put on BP medication, but I was still having all these other problems, that were getting considerably worse, In the mornings when I get up, I stagger all over the place, loose my balance, stumble into walls/doors, it settles down after a while, but sometimes during the day I loose my balance and will walk into a wall or a door.
My arms and hands go numb and get pins & needles in my hands and feet and feet go numb.
At my witts end I paid for a wellness check to be done, as to be honest, I thought I was having heart failure (I am 53), I had asked my doctor if he would check my heart and he said no there is nothing wrong with my heart, there is nothing wrong with me I am not 18 yrs old any more.
About 5 weeks ago, I got the results back from my wellness check, with 3 of the blood results highlighted in RED saying I need to see my doctor, (haven't got in front of me, but one of them was Mean Cell Value I think), anyway I went back to my doctor with the results - He glanced at them threw the papers across his desk back at me said there is nothing wrong with me, he has done all those blood tests and there is nothing wrong with me, Look in the Mirror you are fit and healthy! I am just getting older, so I am not going to be able to do the things I did 10 years ago. Basically I left his office crying.
So now being desperate, I started to trawl the internet to just try and find anything that related to those test results, and from that worked out I was probably b12 deficient. I went back to my doctors, but went to see the nurse and asked her to do a b12 test, which she did, the results came back at 246, I went back to the doctor, and he basically shouted at me again saying I am not b12 deficient, I am well above the minimum range (180), so that was that.
I then a couple of weeks ago found the b12d charity as I was trawling the net, I filled in their form, and the next day had Dr Chandy calling me (I wasn't expecting a call or even an email to be honest), he was on the phone to me for about 40 mins explaining everything.
Now I feel like there is light at the end of the tunnel, and there are so many other symptoms that I have that I had didn't realise, I have lid lag, my husband noticed it about 8 months ago where one eyelid is a lot slower at opening when I blink, I am totally grey and have been for a long time, I cannot think straight sometimes, forget names, and can be in mid sentence and cannot think of the next word, brittle nails and pronounced vertical ridges on my nails.
I started Loading doses, (self medicating) last week, but run out tonight, and now waiting for supplies to come from Germany am on the waiting list so I hope it will not be too long.
I think more than anything, realising that there are other people out there suffering and dealing with doctors who do not want to look at the whole picture or think outside the box has helped, as I really thought I was going nuts, and that I had heart failure or something.
Sorry for the long post, and thank you, as I guess many will agree, knowing there is someone out there that understands & listens really does help
xx
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AngelaJG
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Hi and welcome. I can sympathise and empathise with you and your story.
Have you had any improvement from the self injecting? I would keep a diary starting by listing your symptoms at their worst, then note down improvements or changing symptoms. You can then go back to your gp with your findings. I greatly suspect that he wont be at all pleased that you have 'gone your own way' but you should inform him.
I feel like I have a little more energy during the day, and although have been waking up still during the night, not as often, no improvements with anything else yet, but reading post that may be a while I guess
Hi AngelaJG welcome to this community. I'm not medically qualified but am interested to know why you might be B12 Deficient - Oh and is your Folate level OK?
On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-
Who’s at greatest risk for B12 Deficiency?
"Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.
"
Can you "see" yourself in any of the above?
I'm sorry about your intransigent doctor - sadly there are a lot of them about.
Hi Clivealive, not sure as to why I might be deficient, I am not a vegetarian or vegan, I am HLA-B27 Positive, 10 years ago I after visiting Egypt I had a really bad camplybactor infection which set off Reactive Arthritis (had for about a year), and I was put on some medication to counteract the other medication as affects the stomach, but cannot remember what, DR Chandy said probably had something to do with that and also could be something hereditary, my mother passed away when I was 5 (not sure of what), but she did try committing suicide several times (I dont have similar issues I hasten to add), so no not entirely sure.
welcome welcome - I don't know how many times I have read 'left the gp crying' and I am one of those! what are we going to do about these gp's? They seem to know so little about the effects of b12d. I think AngelajG should prepare herself for her gp's reactions if she goes back and says she is self-medicating. I got chucked out when I did!!!!!
I really feel for you AngelajG . I know what it's like to face the ignorant GPs it's quite devastating isn't it ?. It sounds to me like B12 deficiency . And even if it wasn't , there is absolutely no harm in supplementing . I believe that you have done the right thing in taking matters into your own hands . I got no help from GP even when my B12 was 150 , and my feet were totally numb . I self inject too Don't expect quick results , as you have been deficient for so long . Don't forget to take Folic acid / folate ( B 9') it works together with B 12 . Better still a B complex . I don't understand you going on a waiting list for B12 from Germany I've always got mine from there in a week . You must look afteryourself Good diet is important . You have friends and allies here .
Of course your B12 levels will be elevated now . You should have been tested for Intrinsic Factor antibodies( but only about 50% accurate ) . I was eventually , as I went to a private GP at a Nuffield hospital . My surgery accepted this diagnosis , and I was given loading doses , but only the bog standard 3 monthly injection afterwards . That's when I started S.I. as the symptoms returned. Quite quickly. At least the numb feet have improved and are now merely burning hot , but I can cope with that . Irreversible .
I do wish you all the very best . I hope to hear of your improvement .
I am dealing with a company called Intravita but they put me in touch with their UK person, but they are waiting for supplies to come from Germany he said hopefully the end of next week and have put me on their waiting list, but they also sent me back to b12d, and I spoke to Hugo Minney, who said they are also waiting for supplies. (I have bought some b12 vitamin tabs in the meantime should be delivered Monday).
I think that means you are using Merhylcobalamin . I used to get some from the firm who supplies them -- Arnika. In Munich . I now use Hydroxocobalamin which I find just as good and easier to obtain from many German online pharmacies .
I have purchased some folic acid and also a multivitamin, found a link from someone else's post for a company in Germany and have ordered some B12, so should be here sometime this week.
Quite interesting/frightening, I had my last of the 10 day supply of injections on Friday, I was fine on Saturday, however yesterday/today, I feel dreadful, but in reality I feel how I have always felt for what seems like ever (probably the last 2yrs or more), but guess that yes I had started to be livelier, less tired, more energy, so It was really noticeable that I am missing something, and am guessing because I have only just started loading doses that there is not yet enough in my reserves to carry me over yet.
I think you need to check your iron/ferritin levels too.
Your heart symptoms and shortness of breath could be caused by low iron. I needed to treat iron and B12. Neither on their own was sufficient to get my heart back to normal and to fix my shortness of breath.
Unfortunately, for people with both iron and B12 problems it can be difficult to diagnose :
Take a look at the chart at the bottom of this page :
In B12 deficiency (B12D) serum iron is high, and in iron deficiency anaemia (IDA) serum iron is low. Put both together in the same body and you might end up with normal looking serum iron.
The same type of comments apply (high in B12D and low in IDA, or vice versa) to ferritin, transferrin saturation, TIBC, and MCV.
Unfortunately, getting all this information is practically impossible from the NHS. I had to pay for my own blood tests to monitor what was going on.
I know that my blood cells are too big, Macro...... Cannot remember the name, Heamatatocrit (spelt completely wrong), was something like 101.9 but my doctor said there was nothing wrong with that reading.
I also had Reactive arthritis in the past, which I see also arthritis can affect iron levels from that chart.
Hi, I had a b12 of 310 with pretty much all the symptoms on the b12d charity site plus others. I emailed Dr Chandy and received a reply from him with a treatment plan. My gp wasn't interested but did agree to three monthly injections ( though only once I mentioned I was a midwife and want to return to work one day!!). Due to my neurological symptoms I wasn't happy with this so wrote a letter to my gp with help from others on this site providing a symptom list and asking he reconsider or refer me to a haematologist as per guidelines. I recently saw the haematologist and managed to get a trial of alternate day injections. I would advise you go back and request a referral, or consider changing gp surgery as you no longer have to be registered with the closest gp.
hi there.. i am from india and doctors over here are not much aware of b12 deficiency. i am diagnosed by b12 deficiency and doctor prescribed me shots... but i asked him what is the cause of being deficient he just said your body is not absorbing so u take injections... but i would like to know why my body is not absorbing .. and if my body starts absorbing back.. can i stop takin injections??? so can you please share me dr.chandy email id so that i can contact him.
You can't contact him directly but If you go to the site b12d.org which is the charity he runs there is a contact form to fill in. Dr Chandy or his Co worker Hugo generally reply to the emails.
They changed the rules on this in 2014 and now you can choose a surgery, it was mainly brought in to help people access gps easier for example to use a surgery nearer work, kids school or a say a relative they care for. The only thing they may say is that they won't do home visits but many doctors don't do this for the majority of patients anyway and should a home visit be needed it's provided by the nearest on call.
Hi My daughter s b12 is 240 on last blood test in July. Since then we've been back to the GP numerous times and the answer is always the same that she is within range. Never mind that I'm PA and there is a family history of PA!!! At the end of my tether I contacted Dr Chandy and he telephoned me right away to confirm what I already knew that my daughter in his words SEVERELY b12 deficient. I cried like a baby whilst on the phone because to speak to someone who completely understood OUR struggle is an understatement. Anyway he suggested self injecting straight away. I already do and my daughter will be once she returns from hols.
That was how I felt when Dr Chandy phoned me, I wasn't expecting a call, and certainly not from Dr Chandy himself, and it was just such a relief knowing that someone understands what you are going through, that in itself really does help.
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