I was wondering if you could give me some advice. I am a 27 year old female. I have hypothyroidism and am on 100mcg of thyroxine per day. I was still symptomatic and came on this forum and was adviced to take sublingual B12. I was taking 5000mcg per day and was feeling better although still very tired. I moved to Cambridge in October for a new job. I decided that I would stop taking B12 for 3 months to see if the symptoms returned and to try and get a formal diagnosis.
At first I was unsymptomatic but now is a different story. The symptoms started with tiredness, pain in every joint and muscle. It can be difficult to get up 2 flights of stairs. The new area is in my fingers and hands. This started about 1 month after stopping the B12. I went to the GP who actually listened and examined where the pain was. She did the usual tests and everything was normal. I did mention B12 but she said that I didn't have tingling in the hands, which I didn't at the time. She has now referred me to a rheumatologist and suspects fybromyalgia. She has also given me codeine for the pain but I hate taking it unless I feel I really have to. I have the consultant appointment on 2nd February.
More symptoms have appeared over time. Tingling/pins & needles in my hands. Brain fog, light headed, nausea. I thought I would order an active B12 test privately and got the results today.
Active B12 151 pmol/l (25.1-165.0)
5 months ago I did have the GP do B12 which was
B12 - 159 (130-800). It was 200 eight months ago.
I was wondering if you could give me any advice on what to do next. The sublingual B12 helped some what but not completely. Do I start taking B12 again or wait and see if by B12 goes down further. Do I go to the Dr and demand tests. She may be unlikely to help now she has referred me. As a 27 year old I feel rubbish and don't think I should be feeling this way. I'm afraid if I get a diagnosis on fybromyalgia they will just keep giving me pain meds which I don't really want to take.
Any advice would be greatly appreciated.
Victoria
Written by
brightsideoflife88
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"She has now referred me to a rheumatologist and suspects fybromyalgia."
I was diagnosed with fibro but my personal opinion is that this in my case is a symptom of B12 deficiency. I feel that sometimes medics resort to these diagnoses rather than carry out extensive testing of other possibilities.
B12 deficiency can be misdiagnosed as ME/CFS and Fibromyalgia and a host of other conditions. See links below.
See Symptoms Checklist. I ticked all my symptoms and gave a copy to GPs.
Active B12 151 pmol/l (25.1-165.0)
Problems are not immediately obvious with your Active B12 as it is within range but if you supplemented within a few months before this test the results could have been affected by the supplements. see links below. Have you had an IFA (Intrinisc factor Antibody) test? This can help to diagnose PA (Pernicious anaemia) but is not always reliable. People with a negative IFA result can still have PA. The BCSH Cobalamin Guidelines mention Antibody Negative PA.
"B12 - 159 (130-800). It was 200 eight months ago."
In Japan I think patients are treated if B12 results fall below 500.....
People can suffer severe b12 deficiency with results that are within normal range as yours are.
Recent documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if B12 results are normal range. I wonder if your Gp has seen the following documents/articles. I've assumed that you are UK based. I gave copies of all these to my GPs plus a copy of Martyn Hooper's latest book.
"Could It Be b12" by Sally Pacholok and JJ. Stuart
"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
I have been ill for many years and the one thing I found most useful was to always get paper copies of all my blood results as sometimes what I was told over the phone or face to face was not what was on the copies. I look particularly at ferritin, folate , b12 and the FBC (Full Blood Count). there can be useful clues on the FBC. High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells). Low iron can lead to small red blood cells (microsytosis) but low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). if a person has both conditions the macrocytosis caused by B12 deficiency can be masked by the microcytosis caused by iron deficiency and a GP might miss problems.
I read that treating a folate deficiency without treating a co-existing b12 deficiency can lead to neurological damage.See Management section in above link.
Co-existing Conditions
Sadly autoimmune conditions can come in clusters. PA/B12 deficiency can sometimes found with Coeliac disease and/or thyroid problems and other conditions. have you had thyroid tests? Coeliac tests? There is a very active Thyroid forum on HU. Marz knows a lot about thyroid if you search for her posts. It is possible to have a negative Coelaic test and still have the disease.
Its possible that your relative youth may count against you as in my personal opinion some medics assume that B12 deficiency is mainly a conditon that affects older people. The PAS has members ranging in age from toddlers to over 80 of all genders.
Do you have family members/realtives with autoimmune conditions?
Have you ever had surgery involving nitrous oxide (used in pain relief in labour)?
Hi Brightside ,have you got your latest blood results , you need to have your ferratin and folate levels and vit d levels ,she could be wrong !! you could be b12 deficient and your b12 level is not fantastic, i didnt start off with pins and needles either and had pains in my legs ,breathless aching etc, 4 months down the line they did a blood test that showed i had pernicious anaemia." Intrinsic Factor test " was on b12 3 monthly after that and 5 months later developed pins and neeles in my hands , so it is not correct that you have to show pins and needles in your hands to have penicious anaemia . ask for the Intrinsic test ,for folate and ferratin levels to be checked . It is often PA with hypothyroidism ,gps dont seem to have a clue !!
I was 29 when I was diagnosed with P.A. and was feeling all the symptoms and more than you have listed. I used to describe myself as walking around like a Zombie.
Mind you it was 44 years ago that I was first put on b12 injections every four weeks for the rest of my life and true, I had had gastric surgery when I was 17 so had probably been living on reserves I didn't have for several years.
Suffice to say, whatever the cause of your symptoms, whether it be P.A. or b12 deficiency you really do need to get the reason sorted and treatment started as soon as possible in order to prevent further neurological problems.
There is life after P.A. and I'm still "clivealive" coming up to 75 years of age.
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