Test results

[Ty-phoon]

I'm currently going round in circles trying to find out what's wrong. Symptoms include:

Fatigue (sleep about 10hrs a day once I can get to sleep)

Struggling breathing (tightness/ heavy chest, not wheezing)

Palpitations

Dizzyness

Brain fog/lack of concentration/ mixing up words

Numbness in left hand

Pins and needles in legs/feet

Headaches

IBS

Stomach pains - ranging from feeling like it's being twisted to 10/10 and I will black out whilst led down (currently managed by eating 1 meal per day)

Eczema

Extreme irritability - worse with loud noises or multiple people talking at once

Allergies to environmental (dust/pollen/mould/grass/etc)

Blood tests came back negative for coeliac and intrinsic factor, taken 11 July.

Other blood results taken on 27 June 2017

Serum TSH 2.257 mU/L (0.34-5.60)

Serum free T4 10.2 pmol/L ( 8-18)

Gp won't do T3 test as said there's no point.

Serum creatine kinase 181 iU/L (35-160)

Serum b12 165 ng/L (>140) [was 147 on 19 June, I started supplementing end of may, so results are possibly higher due to this]

Serum folate 5.4 ug/L (>4)

Serum ferritin 41 ug/L (11-200)

Serum Potassium 3.8 mmol/L (3.5-5.3) [was 3.4 in may]

Serum creatine 73 umol/L (45-84) [was 86 in may]

Any ideas or suggestions a gratefully appreciated. I have a follow up appointment with doctor next week.

[clivealive Forum Support]

Hi Ty-phoon it is a pity you started B12 supplements a fortnight or so before the test as this did probably "skew the result". Even so "Serum b12 165 ng/L (>140)" after two weeks supplementation is still pretty low although it's probably marked as being "Normal".

Your Folate level too is at the bottom end 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 saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

Please come back and let us know how you get on.

​

[Ty-phoon in reply to clivealive]

Hi Clive,

Thank you for your reply. I have done all of this and took my mum with me along with the nice guidelines. He won't treat for b12 on 'ethical grounds' unless it came back as positive for p.a., intrinsic factors came back negative last week and I have a follow up in a week (first available time).

Not sure where to go or what to ask for next. I fear he'll insist it just IBS and stress and try and put me on antidepressants again....

[clivealive Forum Support in reply to Ty-phoon]

'ethical grounds'?? You can be B12 deficient without having P.A.

IBS, stress and antidepressants can cause B12 deficiency.

I'f you cannot make your doctor see sense join the Pernicious Anaemia Society. It costs £20.00 for a year's membership and they have been known to intervene with doctors on a member's behalf.

[Ty-phoon in reply to clivealive]

Yup!! He's of the impression if I can find out what's causing my stomach spasms and cut that out (I have passed out from pain caused by a mouthful of orange squash entering my stomach..) then everything will sort itself out!

Thank you, if I got no further next week I shall join.