I was diagnosed about 10 months ago with CFSME. My main symptoms were brain fog, exhaustion, joint and muscle pain.
My symptoms are increasing and worsening; I have hard lymph nodes in my neck, a hard vein also, a persistent eye twitch, chest discomfort, shortness of breath, weakness, anxiety, dizziness, unsteadiness. I have check PA symptoms and I have rosacea and seek solitude and quiet. Pins and needles. I was also getting leg cramps at night. My feet are painful, hot and tight
I had my neck scanned and was told lymph nodes are fine. Thyroid is enlarged and module but thyroid bloods normal.
The blood tests my GP ordered on 6th June, show iron deficiency anaemia and I was put on 120 3 times a day, iron tablets. I started to take b12 at the same time. The lab printout talks about PA, but I don't think it refers to my case; but a standard note to the GPS running the tests. I have scribed the lab sheet here....
al white cell count 4.97 (4-11)
RBC count 4.21 (3.8-5.3)
Haemoglobin=113 (120-150)
Haematocrit=0.356 (0.37-0.45)
MCV=84.6 (83-100)
MCH=26.8 (27-32)
MCHC=317 (310-350)
Platelets=373 (150-450)
Neutrophils=2.36 (1.50-8)
Lymphocytes=2.09 (1-4)
Monocytes=0.38 (0.2-1.0)
Eosinophil=0.1 (0-0.5)
Basophil=0.04 (0-0.20)
Positive EBV, occurring more than 8 weeks ago
Folate=6.24 (2.5-19.5)
Ferritin=7.7 (15-150)
B12=393.8 (180-900) on rare occasions, high titre intrinsic factor antibody in pernicious anaemia may interfere with the assay of serum B12 and give a spurious normal result. Please discuss with lab if clinical and haematological features strongly suggest PA and a normal serum B12 is reported
TSH=0.35 (0.27-4.20)
FSH=5.5
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Tangawizi
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Just to let you know , I am not medically trained just someone who has spent years trying to find out what's wrong with me.
I notice you had a positive EBV which I assume means Epstein Barr Virus, which I think is a virus that causes Glandular Fever. Have GPs excluded the possibility of glandular fever?
I can also see that your ferritin level is below range 7.7 (15-150)
Low iron can lead to small red blood cells (microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). A person with both low iron and low B12/low folate may appear to have a normal MCV on the full blood count (FBC) because the effects of low iron on red blood cells can mask effects of low B12/low folate.
Are you in UK? I'm asking because the patterns of treatment for B12 deficiency vary from country to country.
Some info in my reply may not apply if you're not in UK.
If you're in UK, I'd suggest reading the "BSH Cobalamin and Folate Guidelines". It's a UK document about B12 deficiency which gives guidance to UK doctors on treatment and diagnosis of B12 deficiency including PA (Pernicious Anaemia).
Above flowchart makes it clear that in UK people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether B12 is low or within range.
Have you had an IFA test?
IFA test can help to diagnose PA but test is not always reliable and it is possible to have PA even if result in IFA test is negative (called Antibody Negative Pernicious Anaemia).
PAS (Pernicious Anaemia Society)
Some people on forum join the PAS (Pernicious Anaemia Society)
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS. Book is up to date with UK B12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Book above includes several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
B12=393.8 (180-900)
Vit B12=264 (140-724)
I have read that it is possible to be symptomatic for B12 deficiency with a result within normal range.
Link below is about writing letters to GPs about B12 deficiency. Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
There is also an interesting blog about B12 issues on the "B12 Deficiency Info" website including one about how B12 deficiency can be misdiagnosed as other conditions including ME/CFS
1) Lots of B12 info in pinned posts on this forum. I found it helpful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post.
This emphasises the need to treat people who are symptomatic for B12 deficiency in order to prevent neurological damage, even if B12 levels are normal range.
That's very interesting and I haven't heard of it before (but maybe that's just me missing things):
"on rare occasions, high titre intrinsic factor antibody in pernicious anaemia may interfere with the assay of serum B12 and give a spurious normal result."
Did you have an intrinsic factor antibody test? Do you have digestive problems or medication that might cause digestive problems? Any reason given for being iron deficient?
I also find it strange that you and others have thyroid symptoms, even in your case an enlarged thyroid, but the blood test is 'normal'? I suggest you ask on the thyroid forum on HU.
Sorry I can't be of any help in reading the tests. I think you need to do some more research if you can before accepting you have CFS/ME and nothing can be done.
Thank you so much for all your replies. I will work my way through the information and order some of those books.
It was the people on the thyroid forum who directed me here 😁 But yes, I find it hard to accept that my thyroid results are normal given its enlarged and has nodules. I have a croaky voice so I think it must be significantly enlarged
I didn't have intrinsic factors antibody tests and I don't have any digestive issues. No reason given for being iron deficient definitively; GPS always talk about menstruation and diet. But I have always menstruated. And up until I got I'll I was very healthy. I was vegetarian for 15 years and vegan for 3 of those. Very diligent about vitamins; lots of fruit, veg, nuts, pulses, beans etc. I could run 10k easily. Now I am 4 stone over weight and struggle to walk my kids to school
I'm worried that I am developing health anxiety/munchhausens...I spend every minute thinking about how bad I feel and what could be wrong. There is no respite. At what point do you just accept this as 'new normal'?? Feeling really upset today
Sorry to hear you are having a bad day. It can be a long hard fight for people who are b12 deficient to get a diagnosis and treatment.
"I was vegetarian for 15 years and vegan for 3 of those"
Being vegetarian or vegan is a risk factor for B12 deficiency. Are you still vegan or vegetarian?
The main sources of dietary B12 are meat, fish, shellfish, dairy, eggs. There may be traces in some fungi and algae but some of these are b12 analogues.
There is an open letter on the Vegan Society website that talks about the importance of taking B12 supplements if vegan.
Hi, no, I haven't been vegetarian for nearly 20 years. I eat loads of fish and eggs, no milk and some meat. I always supplemented B12 when I was vegetarian
I really reject that this is dietary. Since being ill, I often don't have the energy or strength to chop and cook. So, I rely more than I ever have on caffeine and sugar. Which I know is exacerbating symptoms, but it hasn't caused them
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