Please help!

[FibroFogger]

Hi,

I'm hoping someone on here will be able to help me, I was recommended to come here from a parenting site.

10+ yrs ago I had Glandular Fever. That seems to have triggered whatever is wrong with me as I've been ill ever since.

About 6 months after it was confirmed I had Glandular Fever I was diagnosed with CFS/ME, as I was not getting any better.

I'm not convinced that I 'just' have CFS/ME. My symptoms are listed below;

Severe tiredness

Headaches

Dizziness

Balance - feel like I'm falling backwards

Pain in hips

Hives and rashes on jaw/face/neck - no known trigger

Flu-like feeling

Memory issues - Long term fine, short term not very good

Weakness in hands/arms/legs/lower back

Burning feeling in skin - back of calves and side of hand/arm

Pins and needles - arms, legs and mid back next to spine

Always cold, even in very hot weather

Stiffness in body in morning

Difficulty picking things up, opening jars etc

Get words mixed up when speaking and forget what I'm saying halfway through a sentence

Painful stomach - on Omeprazole

Muscles feel tight and 'squeezed'

Hands and fingers always feel tight and swollen (don't look it) plus skin on my finger pads are normally wrinkly??!

Back pain - physio didn't help

Sometimes have difficulty swallowing

Sometimes eye blur - eye examine normal

'Flashes' in eyes when I turn my head to the side (not every time though)

Sometimes shake

Dry eyes

Palpitations

I've been to the doctors numerous times and they always just do a blood test which comes back normal every time. I've asked to be referred to someone but 'There's no one to refer you to'.

My latest non-fasting blood test has come back as below;

Serum ferritin = 27 ug/l

Serum folate = 6.1 ug/l

Serum vitamin B12 = 208 ng/l

Unfortunately, the printout of the results didn't state what the normal range was.

The secretary said that all was normal.

If anyone can shed any light on what may be wrong with me I'd be ever so grateful.

Thanks in advance for your time.

[Gambit62 Administrator]

a) there isn't a reliable test for identifying B12 - there are large numbers of documented cases of people demonstrating all the clinical signs of deficiency although their results come back in the normal range.

In UK NICE guidance is to treat on the basis of symptoms.

BCSH also recommend treating on the basis of symptoms because there isn't a definitive test and the consequences of failing to treat can be permanent neurological damage.

b) at 208 your B12 is very much towards the bottom of the 'normal' range in the UK but would be well into the deficient range in some other countries - eg Japan.

c) B12 deficiency tends to be the result of absorption issues which include

- an autoimmune response destroying specialised cells that absorb B12 in ileum, or a chemical that needs to be combined with B12 in order for it to be absorbed

- lowering acid levels in the stomach. Ironic as one of the common symptoms of B12 is problems with acid reflux for which anti-acid treatments like omeprazole are prescribed, lowering the acid levels even further and increasing the malabsorption.

I'm assuming that you are based in UK, but even if you aren't the following might be of some use

so, would definitely go back to your GP and suggest that they check out the following

bcshguidelines.com/document...

(read the summary of key recommendations on p2 at least!)

cks.nice.org.uk/anaemia-b12...

and in particular the section on B12 under investigations

cks.nice.org.uk/anaemia-b12...

You might also find ticking things of on this checklist - from PAS website useful in talking to your doctor.

pernicious-anaemia-society....

d) Just to note - that studies have shown that some patients with ME can find B12 supplementation helps them ... same with MS ... Now some of that might be down to mis-diagnosis but think that impact in the studies wasn't necessarily commensurate with the improvement that would have been expected if B12D was the only factor

e) another useful site is the B12 Deficiency Support Group

b12d.org/

Please do continue to post test results ... and ask if you can for history of results so if there is a decline over time in B12 levels that is clear.

Getting a diagnosis can be very difficult because there seems to be a lot of mis-conceptions/lack of awareness of exactly what B12D is and how it affects you in the medical community.

Getting treatment that suits you is another potential battle - but this forum is here to support.

[Ruthi in reply to Gambit62]

Failure to recover from glandular fever is not uncommon, and in the days before little was available in the way of tests a diagnosis of ME was commonly made. Nowadays an ME diagnosis is a bit of laziness on the doctor’s part because its usually possible to pin down the problem more precisely. But doctors tend to rely overly on tests, and fail to understand that some individuals show symptoms long before others with the same test numbers.

In addition to your B12 testing/treatment your doctor should also be testing your thyroid function. Ask for TSH, free T4 and free T3 to be tested. Then bring your results (with ranges) to the Thyroid UK group here on Health unlocked. Its possible that you have already had the TSH test, which is frequently done and not well understood, so worth asking the doctor for a copy of all your test results over the last ten years. Just ask at reception, you are entitles to a copy although it might take a while, and they are allowed to make a small charge for paper etc. But seeing your test results over the years often reveals trends which can be most informative too!

[Coastwalker]

Not forgetting a vitamin D test for vitamin D deficiency, I was found to be D defficient Dr gave me 1000iu of vitamin D3, I noticed the vit D3 got rid of morning stiffness, hip and bum stiffness, my tailbone pain and I no longer had my restless legs at night problem. Within a week all pains came back so i looked up the vitamindcouncil website and found I could safely up my dosage and by doing so within a few days all pains had gone again. If I forget to take my D3 within the day pains come back, so I know Vit D3 is working. I thought I was just getting old quick.

Also you might find your bloods come back 'within range', nothing wrong with you Doctor might say, but often 'within range', or 'low, within range' still it might help to be supplemented to optimum levels to make you feel back to normal.

[FibroFogger]

Thank you for your replies. Sorry I posted and ran, my hands/arms are very painful at the moment (burning) so I've been unable to type comfortably.

Gambit62 - Thank you for all those links, very helpful and informative. I've decided to start supplementing myself with some B12, folate and vitamin D3. Yes I'm in the UK.

Ruthi - I had my TSH done and that was 1.78 mU/L (0.35 - 4.94). My print out shows a range for that one because the reference ranges have recently changed?? I haven't had my FT3 or FT4 tested yet but will ask at my next appointment (when I can get one!). I'm also going to ask to be tested for coeliac disease.

Coastwalker - I've just order some vitamin D3. I'm very pale and tend to stay out in the shade when we get a bit of sun so I have no doubt that I'm probably lacking a bit of vit D. From the ranges I've found on google (they don't tend to change that much from lab to lab) I'm definitely on the lower end of the range.

Thanks everyone.