Hello, I recently joined the thyroid group, as i have had a long history of fatigue, brain fog, cold and painful skin, no appetite, nervousness,nausea, very bad pulsatile tinnitus and dizziness. I have been diagnosed with fybromyalgia, M.E. and chronic fatigue. Over the past 18 years i have had no help from the GP's and just pushed on one side with the usual saying "well all the bloods have come back Normal!!!" I think we can all relate to that. My blood pressure has always been 120/80 until a couple of years ago and then i started with very bad palpitations and a trip to A&E. They could not find anything wrong with me, but put me on blood pressure meds. I was not responding well to them and the nurse said you have something else going on with you. Over the next few years i started shaking, insomnia and could not seem to calm down. I also have a swollen tongue which is hot. I am waking up in the night and cannot get back to sleep and so sleepy through the day. I asked the nurse about b12 and she said i had a healthy amount in me. I am so cold most of the time and my skin feels like frostbite, in particular in the legs. I cant seem to warm up at all. Its a feeling of a congested clumpy, thick and very heavy symptoms. When i stand up from a lying down position the skin does not seem to move and gets stuck. In the morning or on all of my frequent trips to the toilet i can hear the pulsitatile tinnitus getting quicker. Stagnant blood is another description. Sorry i hope you do understand what i mean. Its very difficult to explain as when i have done so many times to the doctors they look at you in disbelief. I have had a medichecks full thyroid panel and all seems well with the thyroid, but one of the adminstrators has quered the folate serum which is 12.6nmol/l and the range was 8.83 - 60.8 and the active b12 as 83 pmol/l and the range was 37.5 - 188. I am pretty sure i have had low b12 for a long time. The ferritin was 168ug/l range is 30 -650. She contacted the lab which was Univi i think as the range on the ferritin seemed to be so wide. She thinks my ferritin is fine. I wonder if some one could have a look at my symptoms and correspond them to my blood results let me know any suggestions. I must admit i have not taken a Vit B complex for a long time, but do take B6, B3. Many thanks for taking the time to read. Laurianne
Please can some one give me advice on... - Pernicious Anaemi...
Please can some one give me advice on blood results regarding ferritin, folate and active b12
Hi,
Welcome to the forum.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
You mention diagnoses of ME/CFS and fibromyalgia...there's quite a few of us on this forum with those diagnoses.
Misdiagnosis of B12 deficiency as other conditions
b12deficiency.info/misdiagn...
martynhooper.com/2018/02/10...
From personal experience, I can tell you it's possible to have severe B12 deficiency symptoms with a serum B12 result that is within normal range.
"asked the nurse about b12 and she said i had a healthy amount in me"
I learnt to always check test results myself even if told everything was normal.
I found abnormal and borderline results sometimes when I checked the results.
Blog post about being symptomatic for B12 deficiency with a normal range serum (total) B12 result.
b12deficiency.info/your-ser...
Are your symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
A few more links that might be useful.
Some links may have details that could be upsetting.
If you think PA is a possibility, worth joining and talking to PAS.
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups
pernicious-anaemia-society....
Testing for PA
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link in this reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Some UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Coeliac disease
Have you ever been tested for coeliac disease?
Guidelines below suggest anyone with unexplained b12, folate or iron deficiency should be tested.
cks.nice.org.uk/topics/coel...
If you were tested in past and had a negative result, check your Gps followed the recommended diagnostic process, some GPs don't...
More info on Coeliac UK website.
Local B12 deficiency guidelines
I urge UK forum members to find out what's in their local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
List of ICBs in England
nhs.uk/nhs-services/find-yo...
Try a search online or submit a FOI (Freedom of Information) request to ICB or Health Board asking what B12 deficiency guidelines are used in the area and for a link to or copy of them.
See blog post below if you want to know why I suggest this.
b12deficiency.info/gloucest...
Misconceptions
Many of us on the forum have met health professionals with wrong ideas about B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
I'm not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.
many thanks for all this info. laurianne
Your age puts you at greater risk of having a B12 absorption problem.
Unfortunately the symptoms of B12 deficiency also overlap with a number of other conditions which makes diagnosing on the basis of symptoms quite difficult.
The range for serum B12 and active B12 is also quite large and people tend to sit at a particular point relatively consistently. This makes using these tests to diagnose a deficiency quite difficult. They are probably more useful for diagnosing absorption problems because absorption problems show up as dropping levels but you can't do that from a single point test and there aren't any real protocols on monitoring B12 levels over time.
Serum B12 is only accurate to 20% which adds to the difficulties of using it to diagnose deficiency and absorption problems because you need a drop of over 20% between two tests to be sure that its a genuine drop and not just the margin of error of the test. Active B12 is more accurate.
On the face of it your active B12 is well into the normal range, which statistically means it is more likely that you aren't deficient than that you are deficient. But from the caveats above on falling levels it's really about how your levels are changing over time.
If your levels have been reasonably constant over time then you are probably not B12 deficient.
Folate tends to be more variable in an individual so the range is much better at saying whether or not an individual is deficient. Your result is in range so conclusion would be that you don't have a deficiency.
On ferritin - whilst it is generally a good indicator of iron status it doesn't always tell the full story and you would need a full iron panel to really know what is going on there - though the result you quote doesn't indicate a potential iron deficiency.
I'm not a medical professional.
Hi,
A bit more info...
Blog post about being symptomatic for B12 deficiency with normal range serum (total) B12
b12deficiency.info/your-ser...
You might want to look into "Functional B12 deficiency".
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of B12 deficiency.
"she said i had a healthy amount "
Do you have the actual result for serum (total) B12 along with the reference range?
Have you had homocysteine and MMA tests?
Blood tests linked to B12 deficiency
Article about MMA
(from Dutch b12 website - units/ref ranges/treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Have a look at the lower right side of this diagnostic flowchart.
stichtingb12tekort.nl/engli...
It suggests that doctors should consider continuing treatment for B12 deficiency in patients whose MMA/Homocysteine/Active B12 test results are within range if the patients responded to initial treatment with B12 (meaning that their symptoms improved).
Iron tests
labtestsonline.org.uk/tests...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
If you would like to increase your folate levels you can ask your GP for a prescription of 5mg Folic Acid. This is usually for short term use of 2-3 months which will raise your levels then you can take 400mcg daily (micrograms not mg) as a maintenance dose to keep your levels stable.
You may also benefit from taking Ferritin (Iron supplement) which you can ask the GP for advise as whether to take in tablet form which is usually prescribed (Ferrous Fumarate 210mg) or you might need a smaller dose which you can buy over the counter. Ferrous Fumarate can cause stomach upsets and constipation in most people so it’s a matter of trying it if your GP feels you need it.
There is also another form of iron tablets they can prescribe which is Ferrous Sulphate to increase iron levels. Some people find them easier on the stomach.
You could also buy Liquid iron (Floradix or Feroglobin) which is much easier on the stomach, there is also Spatone Liquid sachets which you can mix in orange juice or taken straight from sachet. These liquids are much lower in strength but gentle on the stomach and easier absorbed as they are liquid and can help increase levels though can take longer than the high strength tablets on prescription.
The B12 is unfortunately a more difficult route especially if you have undiagnosed PA (Prenicious Anemia) when you can’t absorb B12 orally through your digestive system. In that case you can try high strength oral B12 tablets and if your levels rise then that means you can absorb the B12 orally and don’t need injections.
If you need injections that’s much harder for your GP to diagnose or agree to give you the right treatment, that’s why most people on this forum who can’t absorb B12 choose to buy their own B12 injections online and self inject as GPs don’t know much about PA and most disagree to treat you as they should.
you have a lot of helpful info on B12 below by other members but I hope some of the above helps with Folate and Ferritin.
Too much B6 can make you feel very unwell. Check how much you’re taking, hopefully no more than 10mg a day and what are your levels? Bcompex is better than individual Bs as they work together. Your levels sound low to me. Others will advise you better. I wish you well.
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