Help with abnormal tests please

Tests and investigations
1

Hello, I am looking for help to try and work out what on earth is wrong with me, I have been feeling unwell for around 2 years and had various symptoms, some which come and go and some of which remained.

Headaches

Facial Pain

Excess Sweating with occasional night sweats

Excess Saliva

High Blood Pressure

Flushed Face

Pins and Needles in hands at night.

Fatigue

Lightheadedness

Burning Sensations in hands

I have had lots of different blood tests done over the last 2 years but the only abnormal ones are serum vitamin B12 and Immunoglobulin A (igA) both being high and remaining high.

Vit B12 - 790 in Feb 2013, 880 In Aug 2013, 808 in Nov 2013 and 1150 Oct 2014 the refereence range is 191-663

I do not supplement with B12 or multivitamins.

Immunoglobulin A (igA) was 4.25 in Sept 2013 and 4.10 in Oct 2014 not sure on the scale but its just over the normal range.

I was tested for blood cancers by a Haematologist but was told I was ok as all other tests were so far normal including:

Jak2 Mutation gene

Liver

Renal

LDH

CRP

FBC

Bone

Celiac Panel

 

2

Hello Vigilante, sorry to hear that you are feeling so rough.  What sex are you?

3

Should have put that in post sorry,

Male aged 32

4

Who is doing these tests, is it your GP?  And what country are you in?  I am only au fait with the system in the UK

5

If you are dealing with your GP and he still doesn't come up with anything, perhaps you could see a different GP in the practice.

On looking at your results, it made me wonder about an autoimmune problem and sometimes those results come back as 'normal'.  The same with Endocrine diseases.

You are young to be having to try to sort this out.

6

Thanks for the replies, yes I'm from the UK, I did see many different Drs all from the same practice over the last 2 years. I even asked to see an immunologist and got the answer "theres not one local"

I fear I have some form of cancer but something also tells me its something auto immune too.

I do have the cornea disease called Keratoconus also which is basically like a cornea dystrophy and causes the corneas to thin and change shape into a cone. I'm actually awaiting an operation for this as its at a stage where I cannot get any correction for my left eye and it sees multiple ghosted vision.

That disease may also be linked with autoimmune, although noone knows for sure what causes it.

7

On the basis that you must be seeing an Ophthalmologist for your eye condition, can he help at all?

What part of the UK are you in?  If you don't want to post it, perhaps you might pm me.

8

I'm under Birmingham and Midland Eye Centre, initially it was the cornea plastic surgeon and the contact lens team but its now Prof Shah's team its been around 5 months since my last appointment but I was waiting for pre-op having already signed consent forms.

I have never mentioned my blood tests to them.

9

If it's in the UK... High Vit B12 can be associated with liver & kidney failure - and your blood tests rule that out. Also, there is a form of leukemia associated with increased B12 - but that's clear.

Of itself, high B12 isn't toxic so hmmm bit of a puzzle. Raised IgA can be associated with autoimmune diseases - perhaps a referral to s rhuematologist might be advisable. You might also look at food allergies. I mean a proper allergy not an intolerance! When you take something long term your body learns to tolerate it - but causes damage. When you come absolutely come of the foodstuff you tend to have a strong reaction - your GP sensibly looked at ceoliac diseaase for that reason.

If you look at Allergy UK, an independant organisation it will help tell you the most comon allergies to look for. For me it was milk protein - I now carry an epi-pen. My symptoms were so severe that I nearly had major bowel surgery as they thought it was Chrohns/colitis.

And consider your BP might be stress related? Hw high is the BP? Medications?

Best wishes

 

10

I thought this research would interest you:

The association of keratoconus with immune disorders.Nemet AY1, Vinker S, Bahar I, Kaiserman I.Author information

Abstract

PURPOSE:

To evaluate the association between keratoconus (KC) and immune disorders (IDs).

METHODS:

A retrospective observational case-control study of all the members in the Central District of Clalit Health Services in Israel who were diagnosed to have KC (years 2000-2007; n = 426) and 1704 age- and gender-matched controls. We calculated the prevalence of the following IDs: rheumatoid arthritis, ulcerative colitis, arthropathy, amyloidosis, systemic lupus erythematosus, celiac disease, multiple sclerosis, myasthenia gravis, polymyalgia rheumatica, idiopathic thrombocytopenic purpura, Crohn disease, Hashimoto thyroiditis, autoimmune hepatitis, irritable bowel syndrome, asthma, and environmental allergy. The odds ratio (OR) of having IDs among patients with KC was compared with controls.

RESULTS:

The association between KC and the following IDs was statistically significant: rheumatoid arthritis [OR = 8.1; 95% (confidence interval) CI: 1.5-44.2], ulcerative colitis (OR = 12.1; CI: 1.3-116), autoimmune chronic active hepatitis (OR = 6; CI: 1.01-36), Hashimoto thyroiditis (OR = 2.0; CI: 1.2-3.3), arthropathy (OR = 1.4; CI: 1.1-1.8), asthma (OR = 2.1; CI: 1.4-3.2), environmental allergy (OR = 1.3; CI: 1.02-1.75), and irritable bowel syndrome (OR = 5; CI: 2.1-12.1). Two autoimmune diseases, multiple sclerosis (OR = 2; CI: 0.2-22) and Crohn disease (OR = 1.6; CI: 0.3-8.3), were more prevalent among patients with KC but did not reach statistical significance.

CONCLUSION:

Some strong associations between KC and several immune conditions of autoimmune diseases and allergic IDs may point to the role of the immune system in the pathogenesis of KC.

PMID:

 

20802320

 

 

11

Hey thanks for the reply,

I do think there could be something autoimmune so a rhuematologist would be very useful, I was in contact with my own GP surgery yesterday but I got told if I want to chase those tests they can refer me privately for £150 per appointment, I'm quite unhappy with their reponse and have asked for the practice manager to call me in which my conversation will be something along the lines of " I have abnormally high blood tests results and various symptoms for 2 years and your doctors are refusing to refer me for specialist opinion which I believe is my right to get, if I do  not get resolution of this matter today I will be contacting the primary care trust and onbudsman"

12

Are you in England?  You could try PALS.  It doesn't exist in Wales, where I live.

13

Well......

What can I say other then uff....a young greek lady Endocrinologist who was just not intrested in anything other then the treatment I have been recieving from my pervious endo for the past 5 years. Did not want to listen to what I had to say regarding my abnormal blood tests, had a brief flick in my notes and said Haematology saw me and was happy I didnt have blood cancer.

on my high blood pressure she flippently said I should be on medication and if the ones I took previously didnt work as I said I should be on 3 or more at once to control it. im 32, how many 32 year olds take 3 or more meds for blood pressure....

I may as well have not gone

14

At the moment I have tingling/burning hands and feet - neuropathy. Funny things is I checked the nhs web site for Sensory Neuropathy and listed in the causes:

conditions caused by overactivity of the immune system, such as rheumatoid arthritis, lupus or Sjogren's syndrome

15

Oh dear, I am sorry, what a blinkered attitude and very unhelpful.  She was in the position of being able to refer you to a more appropriate Clinician and she didn't.  I guess she wasn't the Consultant.  Perhaps you could ring the Consultant's secretary and see whether you could actually see him/her.  I do hope it wasn't the Greek lady!

It sounds too much like, clear your patients today........or else!

 

16

It does make me so angry, they appear to be writing you off - at 32.  Good doctors listen to the patient and there are so many good doctors out there but then there are the ones who just seem to want to clear their waiting lists and, it seems to me, that they don't listen  Have they never heard 'a stitch in time saves nine'?  If they listened to you [and other patients with similar problems] then you wouldn't have to keep returning again and again.  False economy.

I'll get off my soapbox now!

 

17

I think she is the top consultant in Endocrinology at Warwick Hospital now, previously I was under an older gentlemen, he was somewhat eccentric but he would actually take time to listen to his patients and even discuss matters and questions that are not usually asked. I remember him discussing latest blood pressure studies with me one time for example. I was givena  pink slip for another appointment in 6 months time by this new consultant, I actually feel like just withdrawing myself from her care with immediate effect, all she basically did was fill in a blood test form for my hormone levels which I've had done 1000x and could easily fill it in myself.

My gp surgery is no different these days, I have been a patient at that surgery since I was a child which is now longer then any current GP they have employed there, The older GPs would listen, not talk down to you and even in cases of anxiety would welcome me to come up and talk it over even if it was 7pm at night. I have no affinitty now towards a single GP there, it feels like I'm not taken seriously on anything, talked down to by arrogant and what seems like under educated GPs, I have even seen some GPs there use "google" whilst telling me not to google my own symptoms.

 

18

I'm still in contact with pals but I have also contacted icas, I intend to write a very long detailed letter of complaint to my gp surgery today along with evidence from the nhs web site regarding the blood tests and symptoms and their possible causes but I have a feeling it will be swept under the carpet.

I guess my other option is to move to another gp surgery, there is a closer one to my house that does seem to have good ratings on nhs choices website, it may be more useful because its closer to take my children too.

19

Talking of googling, have you googled her?  I like to know what I can about my doctors.

Have you spoken to your friends at all, ask them which practice they go to and what the doctors are like.

I agree with the way you describe some doctors, they seem totally ignorant and then there are others, and you have the utmost faith in them, which is how it should be.

20

I had to look up ICAS!  It is probably another organisation that isn't available in Wales! [like PALS]

Regarding GPs' sugeries, try asking your friends which surgery they go to and if your children are at school, ask other parents.  That is a good way to find out what people thing about local GPs

My surgery used to be the best in the area, now it is mediocre, as are other local surgeries.