I've been told to ask you lovely lot.... - Pernicious Anaemi...

Pernicious Anaemia Society

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I've been told to ask you lovely lot...any advice on my results please?

Tiredtired
Tiredtired

Hi, I posted on the thyroid site as my TSH was slightly high but they said to post here too as a few mentioned 'perniciuos anaemia' after seeing the b12 and folate results. I have all the usual symptoms that are dismissed as part of everyday life, tiredness, brain fog, pins and needles, bloating etc. I have an appointment with my doctor to discuss these results (done through medicheck) as the doctor tested for ferritin (was 30 a couple of months back) and tsh (which was 2.8 from a 3pm test) but said it was all normal and wouldn't do anything else.

Thank you for reading my long rambling post...just hoping I can change something to start feeling a bit better!

6 Replies
clivealive
clivealiveForum Support

Hi Tiredtired

People with autoimmune disorders especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease are at an elevated risk of developing a vitamin B12 deficiency and your level is very low and you are Folate deficient.

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom" of the range.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Thank you for taking the time to respond. I definitely tick a lot of those symptoms, and have done for quite a while now. You've provided some really good information for me to take to the docs tomorrow, I really appreciate it. Just hope they will listen now!

Gambit62
Gambit62Administrator

you are definitely folate deficient - symptoms similar to B12 deficiency but develops quite quickly. Your active B12 is also very low so likelihood is that you are also B12 deficient.

Assuming that you have a varied diet with plenty of greens but also plenty of animal products then you would appear to have absorption problems which makes PA a real possibility.

Tiredtired
Tiredtired in reply to Gambit62

I eat a varied diet, plenty of meat and greens, so was surprised it was so low. I'm glad I got the tests done privately as I doubt my doctor would have tested them any time soon. She only did the celiac test when I questioned why my iron levels always drop as soon as I stop taking supplements (not that they've ever got above 60 even on the supplements!) So absorption issues is definitely one I'll be asking her to explore at my appointment tomorrow, thank you.

Hi,

I've written some very detailed replies about b12 deficiency recently on forum. Suggest you search for them, just put Sleepybunny in search. Sorry but have run out of steam to add more.

More b12 info

See pinned posts on this forum

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 books I found useful

"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.

I am not medically trained.

Well I just got back from the doctors and as I guessed as my B12 is in range she didn't even want to consider it and wouldn't listen to the symptoms at all. Then after I got upset and told her that something has to be going on to feel like I do she said that she'd do the IFA test (although then didn't put it on the blood form!!!) . I asked about not starting folate till B 12 is confirmed and she said fine, she will refer me to the specialist but it will be quite a few weeks before an appointment...so in the mean time I've just got to put up with it!

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