Hello, for the past 4 years I've had symptoms of CFS, plus low FT4 and on occasions, low TSH. I've also had my cortisol tested by saliva and short synacthen test, both showed low levels but the adrenals work when stimulated so it's not Addisons. I've tried levothyroxine, T3 and thyroid glandulars and whilst they increase my frees, they make me feel awful. I also have a swollen, cracked and scalloped tongue and some nails which split vertically all the way down the nail. My first B12 blood test whilst starting this journey showed a result of 412 (180-2000). I've since supplemented with Igennus B complex and have managed to increase the result quite successfully. However, I switched to a different brand which I wasn't keen on so took intermittently and my next test showed I'd dropped again. I've recently started on Igennus again and have noticed that about an hour after I take 2 tabs my brain fog clears and my energy seems better - is it possible for supplements to work like this? If I do have a problem with B12 what would be the best place to start in finding the source? I'd appreciate any help, thank you.
Newbie to this community and wonderin... - Pernicious Anaemi...
Newbie to this community and wondering about B12 deficiency
Yes supplements can work like that if you are deficient. You start by elimination.
What is your diet like.
Can you absorb
Blood tests.
What relieves symptoms.
Is your folate iron and vit d levels in blood okay.
Thank you Nackapan - my diet is very good, everything is freshly cooked and full range of meat/fish/eggs/some dairy/some oat alternatives, some days no gluten others very low eg 1 slice of seeded sourdough, no processed foods, a lot of bone broth. I'm not sure what 'can you absorb means' but if it's b12 supplements then yes, I do seem to as when last steady on Igennus my b12 increased significantly. To be honest this is the best relief of symptoms since I had my short synacthen test and the acth gave me a blast of what I felt like 4 years ago, that's why I was so startled by the effects. I'm also on low dose oral hrt which relieves the menopause symptoms (flushes/joint aches) but doesn't touch the brain fog. My last test for folate was discarded as apparently the blood was damaged but the vit d was good and iron was good, I'll need to search for last iron test as it was a while ago. I also sleep very well and deeply but struggle in the morning until around 2pm, I always thought this was cortisol but the igennus today seemed to scorch that theory, although it could still be cortisol.
Hi Jamima,
Welcome here. There is a lot to learn about PA/B12D. It is poorly understood by medics. Therefore, please read Sleepybunny’s posts with reliable information.
Medical History
Has tried levothyroxine.*
COVID-19.
Symptoms suggesting Myalgic Encephalitis of ……………………*
ME can be a misdiagnosis of PA/B12D but then can other deficiencies and autoimmune diseases.
Is there any Family History of Autoimmune Diseases ?
Your first B12 blood test showed a result of 412 (180-2000).
Now this is one of the myths about retesting blood (serum) tests once supplementing has started. It is pointless - a number tells you big fat zero. It is all about your symptoms. We cannot know what is going on at cell level.
Similarly switching brands and taking intermittently defeats the object. A person needs consistent treatment according to their symptoms.
Please know that Hashimoto’s disease and PA/B12D go hand in hand. Like Nackapan said good ferritin, folate and vitamin B12D.
Everyone responds differently to tablets, sublinguals, sprays, patches, injections. If your symptoms are depleting as a consequence of taking tablets. Then there we go, you have your answer.
Do you mean finding root cause of having PA/B12D ? Many people get fixated by this. I strongly feel it is a non-starter, wrong focus. A bit like saying why have I got Rheumatoid Arthritis ? My gran and mum have it. They also have lupus. (Genetics).
You had COVID that really impacts the gut because 70% of the immune system is in the gut. A virus can trigger an autoimmune disease. You may need other vitamins and minerals because of it.
Best wishes.
* edited as my mistake. Apologies
Thank you Narwhal10. I wasn’t diagnosed with addisons, hypo or ME but a GP suggested it might be CFS. No family history of autoimmune conditions. I’m now firmly committed to maintaining daily b12, I take cuts +k2 and had a top of the range level last time I tested. Thanks again.
Apologies - you are being tested and you did write not Addison’s disease.
However, that is not to say the hypothalamic-pituitary-adrenal (HPA) axis which is the central nervous system and the endocrine system (hormones) is not impacted by just simply having COVID.
Some with influenza, if there was a fire would think, Ugh, I’ve got to get out of bed. They certainly would not be able to sprint out of a house and down the stairs.
Oops, my bad but the the suggestion is Chronic Fatigue Syndrome which is medically called Myalgic Encephalitis as per National Institute of Clinical Excellence guideline [NG206] Published: 29 October 2021.
Definitely worth seeing what is written in your notes. To see if there is a Working Hypothesis meaning what’s been excluded until there’s some form of Diagnosis.
Great about being committed to B12.
Hi,
Welcome to the forum.
Here's a few links that might be useful. I post a lot of info so might be best to read it over a few days.
Some links may have details that could be upsetting.
What to do next if B12 deficiency suspected or recently diagnosed
b12deficiency.info/what-to-...
Blog post about being symptomatic for B12 deficiency with normal range serum B12.
b12info.com/your-serum-b12-...
Functional B12 deficiency
This is when 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 B12 deficiency symptoms.
MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.
You list symptoms that can be found on lists below. Has your GP got a list of your symptoms?
I used PAS list below and added extra symptoms at bottom.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
B12 documents
Search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the Background Information section if you have the time and energy.
Try to find the local b12 deficiency guidelines used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland) and compare them with NICE CKS document.
If you can't find them online or by searching forum posts here then best bet is probably to submit a FOI (Freedom of Information) request to your ICB/Health board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Pernicious Anaemia is an auto-immune disease that can cause B12 deficiency.
If you suspect PA (Pernicious Anaemia) have you considered joining PAS?
You do not need a PA diagnosis to join.
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.
Testing for PA
pernicious-anaemia-society....
Coeliac disease is another auto-immune condition that can cause B12 deficiency
coeliac.org.uk/information-...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
It's possible to develop neurological damage from B12 deficiency even if serum B12 is normal range.
Thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency
healthunlocked.com/pasoc/po...
Two useful B12 books
These were published a few years ago so some bits may need updating.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Wrong ideas about B12 deficiency
Many forum members have met health professionals who lack understanding of 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...
Help for GPs
1) PAS website has a page for health professionals.
They can join PAS as affiliate members, no charge.
pernicious-anaemia-society....
2) Has your GP heard about Club B12?
It's a group of doctors and researchers who are looking into B12.
They have regular zoom meetings.
3) Good articles to pass to GP
From Mayo Clinic, US
pubmed.ncbi.nlm.nih.gov/311...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Free PMC article
Recent BMJ article about B12 deficiency by B. Wolffenbuttel
In my personal opinion, he's one of the few doctors who understand B12 deficiency.
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
The author of above also wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
I've written other detailed posts recently on forum which might be worth looking at.
Lots of B12 info in pinned post "Various PA/B12D resources".
I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency.
Thank you Sleepybunny, that’s a lot of info! I’ll take my time and work through it, this is all very new to me. I don’t know if I have a thyroid/adrenal or b12 issue, I’ve tried supplementing thyroid and HC but always come unstuck about 2 months in ie. I feel so much worse than when I started. I know that b12 is related to hypothyroid but can it happen in isolation? My working theory in my ill health is 3 years of relentless stress where I was literally running from house to business and back again caring for my partner. I started decreasing my HRT as I felt worse when I increased so my thoughts are that my adrenals were compromised for 3 years without a break, that in turn compromised my thyroid output and I ended up completely crashing. I’m in a better place now, but by no means have the stamina or cognitive abilities I once had. I’m going to try to increase my b12 and see where I am after testing again.
Ferritin 149ug/l (44-150)
Your ferritin appears to be very close to top of the range.
Are you on iron supplements?
What has GP said about this?
There are other iron tests a GP can order.
labtestsonline.org.uk/tests...
See section on what test result means.
Thank you Sleepybunny. To be blunt, my GP just isn’t interested, I got a message from the receptionist when I called for the results saying ‘everything was fine’, I haven’t seen my GO in 4 years, they have a complicated system of email only and I’ve never been offered an appointment to discuss anything. What does high ferritin signify?
I'm not a health professional but I think raised ferritin levels can suggest inflammation in body.
There is also a genetic condition called haemachromatosis that can lead to a build up of iron in body tissues.
See the section on what test result means in link below for more info.
labtestsonline.org.uk/tests...
Might be worth looking at earlier ferritin results to see trends over time.
I also have a full blood panel which was taken when I was admitted to A&E for a bad reaction to antibiotics, would it be useful to post any of those results?
Might be worth posting those results as a new thread. Take care to remove any details that might identify you or health professionals if you decide to post them.
Link about Full Blood Count
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