My mum had P.A. and I have memory symptoms, fatigue, headache in eye on left and osteoporosis.
I also suffer with 1 diabetes and underactive thyroid, on thyroxine.
I have a blood test for b12 by nhs Oct 19. 247 (145 - 910)
MEDICHECK RESULT OF ACTIVE B12 82.8.
Folate 8.6 (3.00 - 20.00 ugL)
Ferritin ( jj11740) 48 (10.00 - 150 ugL)
Has anyone any advice for me??
[Admin Edit - two posts combined so all information and replies in one place]
Hi Soundwell1.
Your b12 by nhs is very low. Trouble is drs say ‘you are in range’ which is common but they should be treating you by symptoms! Not sure about active as most drs do serum test but I believe you should be in 800+ range for healing to begin. Headaches fatigue memory issues are all Neuro symptoms and this is what I had so you need to speak to your dr. Write down all your symptoms and show them the list. Your diabetes and under active thyroid adds more to the mix. Folate needs to be in the upper 3/4 range and ferritin should be 80+. Please go back to your dr for more advice as if this is PA you need injections for life. Good luck.
Soundwell1 - you don't say if these results are after treatment or not.
Your October serum B12 result is in the grey area
Your Active B12 result is actually well into the range which means B12 isn't coming up as a red flag
B12 is used a the cellular level which means that symptoms tend to be symmetrical. The fact that the headache is one sided suggest migraine - which could also explain the fatigue and memory - though migraines do tend to be episodic in nature. Both thyroid and diabetes could also explain symptoms (though not quite sure of the position with osteoporosis and diabetes/thyroid). There are also a number of other conditions that could do the same. Have you had your vitamin D levels checked?
One problem with both active B12 and serum B12 is that they only measure what is going on in your blood - not what is happening in your cells. The body does tend to maintain B12 levels at the point that is right for you as an individual (in a very wide range). This means that using a single test is quite difficult. If you have had other tests in the past that showed much higher levels (>20% higher in the case of serum B12) that would be an indication that your access to the stores of B12 in your liver isn't functioning properly and would point to an absorption problem.
Tests that can help to clarify if you are B12 deficient would be MMA and homocysteine which are products that build up if cells don't have enough B12 to recycle them. However, these are only two of many processes that go on in your cells that use B12 so there are some haematologists who suspect they may not tell the whole story, ie may not rule out a B12 problem.
Please note that normal ranges are where most people are okay and treatment for problems can introduce a factor that makes this range invalid. Patients being treated with levo often seem to need TSH much lower in the normal range. There are some rather mixed results on surveys of ferritin levels in patients who are hypothyroid - some suggesting that ranges should be higher and others that it isn't relevant. Whilst ferritin is quite a good measure of iron status it doesn't tell the whole story and there have been cases of doctors treating solely on the basis of ferritin levels and patients suffering iron toxicity as a result. Normal ranges for ferritin also vary with age and sex.
Sorry it isn't possible to give you any exact answers.
Hi, yes I've taken a mouth spray in the past 4 years and my b12 was 999 so was much higher on supplements. I don't take anything now and that 245 is what my latest result is.
I didn't feel good 4 years ago with fatigue and memory loss and that's why I took the supplement but it didn't help.
My vit d was, 4 years ago 60 but forgot the ranges.
Do you know what I should do??
WIth you OK Active B12 and the fact that your levels go up with oral supplements, you do not have PA. I would carry on taking B12 pills.
The fact that your symptoms didn't improve when you took B12 strongly suggests that they aren't caused by a B12 deficiency.
Thank you for your advice.
Hi again, I've also developed allergies to: cobalt.
Balsam of peru citral and linalool.
Could the allergies be to do with pa??
PA is an auto-immune disease - it doesn't cause allergies - this just happen and the usual stimulus is actually a response to the allergen.
Auto-immunity occurs when the body's immune system mistaken identifies things that naturally go on in the body as if they are outsiders and starts to attack them.
Allergies are responses to outside substances - so not related to auto-immunity.
If you didn't find that the supplements helped then that would imply that B12 wasn't the problem 4 years ago. Its impossible to draw any conclusion from the drop between supplementation and now as that could just be your body removing the excess levels from the supplements. You could try retesting your levels again in a few months to see if there has been a drop in that time ... but it won't be worth doing that if you supplement again.
Thanks
As someone who has eye problems unrelated to B12 I would urge you to see an optician at the very least regarding the headache in your left eye.
Thanks for replying. I've recently seen and have for some time seen opthalmologists who have treated me for glaucoma. Now I have implants for cataracts. Ive had a stent in left eye but tgey say it's not my eye.
In that case it sounds like further investigations are needed with your doctor to explore possible causes.
Good luck!
Hi,
I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which might be of interest.
healthunlocked.com/pasoc/po...
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Just been looking at your profile and other posts but can't find anything to say whether you have tried making any diet changes. Might be worth reading Datis Kharrazian' s 'Why Do I Still Have Thyroid Symptoms', which has useful information about possible underlying reasons for auto-immunity and suggestions to help yourself. He talks about reactions to food, chemicals and self on his website:
"This can be caused by loss of oral tolerance, the term researchers use to explain the immune system’s ability to appropriately tolerate foods while protecting the body from bacteria and other harmful compounds.
There are other types of tolerance. Chemical tolerance is the ability to appropriately tolerate the many chemicals in our environment without an immune reaction. Loss of chemical tolerance means a person reacts to a chemical or heavy metal the way they might react to gluten or dairy.
Self-tolerance is the immune system’s ability to respond appropriately to the body. Loss of self-tolerance leads to autoimmune disease, in which the immune system erroneously attacks and destroys healthy body tissue. A popular example of this is Hashimoto’s hypothyroidism.
When you lose one type of tolerance you’re likely to lose other types of tolerance as they have similar underlying mechanisms. Loss of tolerance is an exploding problem affecting an increasing number of people."
If your reactions are actually allergies, this may not help, but if you are having intolerance or histamine reactions it may, so I thought it worth mentioning. I started with chemical reactions (various) then started food reactions but by then had my first (but undiagnosed) autoimmune condition, vitiligo. You could also have a look at purehealthclinic.co.uk/alle.... Best wishes
Thank you for your advice. I do have allergies and cobalt is among them so I try to keep it and lots of of other drugs n food out. I need to take my insulin of which I k ow I'm allergic to. I only have the least I can. But I have to eat.
I agree, you absolutely do have to eat...Datis Kharrazian encourages us to eat the widest possible range of different vegetables in particular to help improve microbiome diversity and tolerance. It has taken me a long time to get rid of all the rubbish, even in what I thought was an ok diet (I like to cook, so eat real food) - you just need to know what is right for you at the moment and that will change as you do. Best of luck
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