Hieveryone,hoping for some sound advice on here as i keep reading conflicting opinions and i'm just totally confused and need direction.
I will give you brief history.
I have had various health problems since 2013 which maybe coincidental,but i felt very ill after starting to take Fluoxetine,and even more so when i stopped them,which was only 2 mths.I had taken years ago without any problems.
I was diagnosed with Costochondritis which only started as dull ache under my arm but by the time the dr finished prodding me it got much worse.It got worse with the fluoxetine.I didn't get any of the pains associated with Costo,just inflamed ribs and tender to touch.
I had Hysterectomy in 2016 due to ovarian cysts.I started to have stomach issues where my stomach felt bloated and heavy,had tests done, but normal,so i pit it down to the healing process.
I then got ear infection and had to take 4 weeks of antibiotics,this made my ribs feel worse again and they have remained chronically inflamed ever since.
At the same time i was diagnosed with Hypothyoidism,but still didnt feel well when i Levothyroxine.
I then did some research and had a private test which showed i had Hashimoto's
I saw several rheumotologists over these years and they still maintained i had costo,even though i had tenderness in most of my body,along with other endless symptoms.
In 2017 i demanded my rights in seeing a Neurologist because i was getting numbness in my hands at night and noises in my ears,and insomnia,he said he thought i had Fibromyalgia which he referred me back to Rheumo who also then decided that too.
In December i had the same problem with my stomach and had tests again including liver function full blood count B12 folate and they said everything was normal.
At the moment,my symptoms are numbness in my thumbs,burning feet especially at night,occasional but probably more often now, slight tremors in my face,gastritis type symptoms extremely sore ribs,feeling bruised to touch on parts of my body and heavy legs.
I read on a Fb group that it was advisable to take the test with Viapath,which i had done which is here;
Vitamin B12 (Serum) 415.0 ng/l (187.0 - 883.0)
Methylmalonic acid 338 nmol/L (0 - 280)
Active B12 (HoloTC) 95 pmol/L (25 - 108)
Homocysteine 13.0 umol/l (0.0 - 15.0)
serum folate 3.2 ug/L (3.1 -
MY FOLATE IS NOW 17.5. AS OF DECEMBER, HAD B12 DONE SAME TIME BUT NHS WOULD ONLY DO B12 SERUM WHICH WAS 408.
I dont know what to do anymore,i feel so ill and feel like i'm slowly dying.My drs are no help because they dont understand.
I tried AIP diet last year because i thought it was something i was eating but i didn't feel any better,so maybe if i do have PA,this is why?
Thank you for your time.
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Debzeewestmids
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Have you mentioned the MMA test result to any of your doctors? While it is true that low B12 at the cellular level can cause raised MMA, it should also cause raised homocysteine. But yours is in the normal range, albeit at the top of that range.
I would write to the doctor and ask for an explanation of the high MMA. Or, failing that, a trial course of B12 injections. That would be the best way of telling, for certain, if it is a B12 problem. Surely it's worth them doing that to definitely rule out one possible cause.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Link about "What to do next" if B12 deficiency suspected
"had tests again including liver function full blood count B12 folate and they said everything was normal."
Have you seen the results of these tests?
Best piece of advice I ever got, was to always get copies of all blood test results.
These days I don't believe what I am told about results unless I have a copy in my hands. On more than one occasion I was told everything was normal only to find abnormal or borderline results when I got copies.
For example, all the results may be within normal range but perhaps very close to lower or upper end of range. If lots of results are borderline then that might be significant.
More b12 info in pinned posts on this forum.
I have written some very detailed replies on other recent threads, may be worth searching for them.
Thank you for your info much appreciated!My Folate was raised after taking 5mcg of Folic acid for 4 mths.I did start asking for test result copies after reading peoples advice .They told me on my last test for folate that it was normal and when i got a copy of results they hadn't even tested it,the blood sample was hemolyzed,so i requested it be done again and thats when it came back as 17.5.
In the Management section in the link on folate deficiency in my other post, it mentions the importance of treating any co-existing B12 deficiency if treating folate deficiency.
This is also mentioned in the BSH Cobalamin and Folate guidelines linkin my other post.
One of the signs of B12 and folate deficiency is enlarged red blood cells (macrocytosis). Folate treatment may mean that normal sized red blood cells are produced and signs of B12 deficiency on red blood cells may be masked.
If you're in UK, some UK GP surgeries have online access to a summary of records/results. Details on GP website. This is just a summary and may not have all the info. May be worth asking for access to paper files.
NICE guidelines suggests anyone with unexplained B12, folate or iron deficiency should be tested. In UK, two tests are recommended. If you were tested for Coeliac, were both tests done?
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