Rheumy appt and blood results

Hi everybody,

I've posted a few times but quick recap - finally got an appt with a rheumy after only 25 years of ill health, although the letter says they will review my referral and cancel the appt if they don't think it is needed, which is a little concerning - I've waited a long time for this!

I got a print out of blood results from the GP today - unfortunately I couldn't get the ones from 2009 and 2010 (I wanted them because my husband and I noted there were lots of abnormal results showing on screen, but I have always been told everything is fine).

Anyhoo - here are the results - any comments appreciated - they are all in normal ranges, worrying me that my one abnormal result will not be "enough" for the consultant and I will be left to cope as best I can again It is a complete fluke I had the HLA test which is what prompted the referral!

ESR 11 mm/h [0.0-7.0]

FBC

Haemoglobin concentration 131.0 g/L [120.0-150]

total WBC 4.5 10*9/L [4.0-10.0]

Platelet count 194 10*9/L [150.0-450.0]

Haematocrit 0.387 l/l [0.36-0.46]

Mean cell vol 90.4 fL [832.0-101.0]

MC Haemoglobin level 30.7 pg [27.0-32.0]

MC haemoglobin concentration 340.0 g/L [315-340]

RBC distrib width 13.6% [11.6-14]

RBC count 4.28 10*9/L [3.8-4.8]

Neutrophil count 2.6 10*9/L [2.0-7.0] 57%

Lymphocyte count 1.4 10*9/L [.1-3.5] 30%

Monocyte count 0.3 10*9/L [0.2-1.0] 7%

Eosinophil count 0.2 10*9/L [0.0-0.5] 5%

Basophil count 0.0 10*9/L [0.0-0.1] 1%

Plasma sodium evel 140 mmol.L [133.0-146.0]

" " potassium level 4.4 mmol/L [3.5-5.3]

" " creatine level 60 umol/L [39-91]

" " urea level 3.3 mmol/L [2.5-7.8]

" " calcium level 2.35 mmol/L [2.12-2.55]

" " alkaline phosphatase level 51 iu/L [32-91]

" " total protein level 71 g/L [60-80]

" " albumin level 42 g/L [35-50]

" " globulin level 29 g/L [23-35]

" " total bilrubin level 15 umol/L [7-35]

" " alanine aminotransferase level 21 iu/L [14-54]

Serum C reactive protein level <1.0 mg/L [0-7.5]

GFR >60 mL/min

TSH 0.91 mu/L [0.3-5.6]

Vit D 30 nmol/L

Haemoglobin A1c level 39 mmol/mol

Anti-cyclic citrullinated peptide antibody level 0.9 u/ml [0.0-6.9]

ANA IgG 0.5 [0-0.69]

HLA B27 positive

Thanks for persevering to the end!

[Hidden]

Hello, yes my back becomes painful when I stand for any length of time and hip pain on waking that recedes on moving, so could be ankylosing spondylitis go says. On a high dose of vit d. GP said ESR could be a cold and wasn't high enough to cause concern...

[Puska]

I am no Doctor either but I am not sure any of those results are going to help with diagnosis as they appear to be normal. I had many abnormal results as well as a significant clinical issue but still unable to diagnose anything immediately.

[Hidden in reply to Puska]

I know it's taken me 25 years of significant debilitating symptoms to get the correct test showing I have a genetic marker that is linked to auto immune arthritis. I have said all this time that I believe my problems are auto immune and always been told not so because of my blood results...

[Hidden in reply to Puska]

I know it's taken me 25 years of significant debilitating symptoms to get the correct test showing I have a genetic marker that is linked to auto immune arthritis. I have said all this time that I believe my problems are auto immune and always been told not so because of my blood results...

[jamiesue423]

I'm pretty sure if you tested positive for Anklyosing Spondylitis then you have it. The test they do for it is a genetic marker. I'm being tested for it. Good luck to you! I hope you find answers

[Hidden in reply to jamiesue423]

Hello it was still a struggle to get the referral even after the result was positive as the GP said you can have the genetic marker and not develop AS but then my husband pointed out I already had the symptoms hence them doing the test! Would you mind sharing your symptoms? Looks like we may be headed on the same journey!

[jamiesue423 in reply to Hidden]

I'm 29 but have had issues since I was about 18. I have severe pain in my hips, pelvis, lower back, and now my upper, neck and shoulders . I have very limited range of motion in my back and shoulders . I keep migraines. Stay completely exhausted, to the point I can't even lift my head. There are other things I just can't think lol. it's early. How old are you? From what I've read A.S develops in your early to mid adult? May be wrong though. I hope you don't have it but if you have the symptoms with a positive blood test , then you probably do.

[Hidden in reply to jamiesue423]

I'm 43. Back problems started in earnest when I was 35 but before this I also had severe back and hip pain through both my pregnancies. I also have digestive issues which I have read can be a problem in AS. I get migraines, joint pain in hands and knees mainly, my back locks if I am bending over for any time - makes cleaning the bath very difficult! In my back I get pain in the 2 knobbly bits either side of the spine at pelvis if I stand for more than about 10 mins, my neck gets painful at base of skull and base of neck. I also have fatigue, skin rashes, dry eyes, low blood pressure, dizzy spells - a lot of the lupus type symptoms hence haunting this board ! There are some people on here who have spent years getting diagnosed and gained a lot of knowledge along the way which is very helpful to me. There is also a lot of auto immune disease in my family which makes sense with the positive gene test: my nephew is coeliac , my aunt has lupus and my cousin died as a young child from heart problems caused by RA. My sister has almost identical symptoms to me. Please keep me informed about your progress with diagnosis - my rheumy appt is 26 Jan so fingers crossed Make some kind of progress towards a diagnosis! -karen

[Author_ink]

I always had severe low calcium. My dr gave me s thousand milligrams of calcium pills. I feel so much better taking them. It helps my nausea and fatigue

[Hidden]

I would increase vit D intake immediately. I was advised by my consultant to take ten times normal dose as I live in Scotland. I feel a lot better in mind and body. I also have a sad lamp too

[Hidden in reply to Hidden]

Hello, the GP put me on 20000 units twice weekly for 6 weeks then 1000 daily after. Been taking them for 4 weeks but not seen much improvement yet! SAD lamp is a good idea thank you!

[Hidden in reply to Hidden]

Hello. I too haunt this community despite not having Lupus. I think it's for the reasons you mention and because no one makes me feel I shouldn't be here - it's such a welcoming place.

I may be barking up the wrong tree here -and perhaps Keyes will see this and help me -but isn't the HLA B27 also sometimes a marker for Behcets Disease - a type of vasculitis? Sorry if I've got this wrong but I'm sure it was one of the tests a rheumy ran on me last year for Behcets -came back negative. Do you have any mouth and genital ulcers at all?

I believe AS and Behcets both often have normal blood makers for everything -which is why it can take such a staggeringly long time to be diagnosed for some. Di you have a good physiotherapist at all because exercise is supposed to be absolutely key with AS? And has anyone tried a course of steroids to see if this helps as this is another key strategy - but hopefully the rheumy you see will be the one to sort you out at last. I was sick from childhood but only got properly diagnosed a few months ago -although I was misdiagnosed and treated for RA five years ago today. Then undiagnosed a year ago because of negative bloods. Finally, once off all drugs, my ANA showed positive and I had a lip biopsy that showed sjogrens decisively. I was lucky to have very high inflammation markers for all this time though but I know this is often not the case.

Best of luck.

Twitchy

[Hidden in reply to Hidden]

Hi Twitchy, I'm not sure about Behcet's - yes I do get mouth ulcers. I get the impression from my "research" (i.e. googling!) that I'm in a bit of a murky area It seems that for years it was believed only men got AS and it is more difficult to diagnose in women as it presents differently.

I've been "not right" since I was 18 after a very serious bout of glandular fever. I just never recovered. I read an interesting article by an American doctor who was researching HLA B27 and he discussed a link to the Epstein Barr virus and also a food poisoning virus (cannot remember which strain off top of head) - both viruses can cause the HLA B27 to start making your white blood cells go wonky (so scientific haha!) You get what I mean though. I've had both glandular fever and then food poisoning maybe a year or so after, so it makes sense that either could have kicked it off.

These auto immune diseases seem to have very similar symptoms which makes for difficulty in diagnosing! Hopefully I can start to get some answers now.

It must be such a relief to you now to know what disease you have and start a treatment plan. I hope you are feeling better. These forums are definitely educating patients and fewer of us are now content to just take the doctor's word - we now question!

[Hidden in reply to Hidden]

Yes we support and educate each other about our respective diseases or non diagnosis often here. There is someone who has similar troubles getting AS properly diagnosed who uses the NRAS forum. The rheumy who diagnosed my RA also refuses to diagnose her despite expert 2nd opinion! X

[Hidden in reply to Hidden]

It does seem to come down to Rheumy's attitude sometimes... I just want a medical professional to see me, see I have little quality of life and be interested enough to get to the bottom of it! x

[coralcee in reply to Hidden]

Oh my gosh! Just read this thread and it almost sounds like me. I have had various symptoms since about 30 years old(am now 53), but every time I tried to doctors about they blew me off. So for many years i just dealt with symptoms the best I could. In 2013 I was finally diagnosed with severe osteoarthritis in both hips(that had been hurting for years-always told it was bursitis without any xrays ever being done). It took nearly a year to find a doctor who said I absolutely needed hip replacements. Since then all my symptoms have gotten so much worse in such a short time. My orthopedic surgeon finally gave me a referral to a rheumatologist after he was unable to discern why I am still having so much pain in my hips, and lower back. And during the time trying to figure any thing out all my other joints went from occasional mild/moderate pain to almost all the time to moderate/severe. I am in so much pain. Anyway, my referral was sent in August, and I was given an appointment for December 28! So still waiting for a diagnosis, but can relate too well to many of these posts. Good luck with your diagnosis as well.

Coralcee

[Hidden in reply to coralcee]

Oh I hope the rheumatologist can sort things out for you! I also get problems with my knees as well as back and hips and my husband wondered if this may be because I have been compensating when walking etc due to issues with my back. I am so worried my rheumy appt will come to nothing - trying to be positive but when you gave been fobbed off for so long easy to become a bit if a glass half empty girl when it comes to the medics!!

[Puska]

Agree with everyone here about having years of symptoms. Maybe its because we have so many symptoms we get blown off. Then I had a very serious and rare clinical event - an unprovoked internal jugular vein DVT and only then did most people start putting things together and take it seriously. They went the cancer route. I went the auto immune route. One rheumatologist still blew me off. He was a jerk. But I knew he was wrong and then just a couple of months ago found a great intellIent Rheumatologist who then tested for APS and SLE. APL confirmed twice and with DVT = APS. I do know that in South Australia you will not be given treatment with anti coags without a DVT. And you won't be diagnosed for SLE unless you have both symptoms and confirming blood tests. But you may get treatment. The symptoms they seem to take most serious are Joint issues in hands, raynauds, skin issues, multiple mouth ulcers, pericarditis and livedo reticularis.

[Hidden in reply to Puska]

I think that Australia is similarly strict about people meeting criteria for each disease as we are in Scotland. Certainly the U.K and Australia are similarly behind on the protocol for diagnosing and treating primary Sjogrens - where Scandanavian countries and the US are more ahead in terms of research and treatments -although equally rigid about requiring seropositive markers.

My previous rheumy said that no one in Scotland can be diagnosed with Lupus or other connective tissue diseases, apart from some kinds of vasculitis and RA, unless they meet the EULAR / ACR criteria. He was very disparaging about certain Lupus centres in England diagnosing Lupus without the correct markers to get the numbers up and attract research funding. However he failed to identify my Sjogrens entirely and I had to move to a new hospital to find out that my bloods had changed to ANA positive. A lip biopsy then clinched my diagnosis only six months after the last rheum told me I had no CTD.

I've had the symptoms of a connective tissue disease since I was a child but just learned to live with it until menopause hit. It strikes me that no one tells our defective immune systems that they have to fit in with a certain rigid pattern in order to be diagnosed and treated. Our bodies have chosen to turn the rules on their heads so why do most doctors expect these diseases to comply with these rigid expectations?!

[Puska in reply to Hidden]

Sounds about right for Australia then. First rheumy didn't do any further blood work as he said it would be a waste and thus missed my APS. My good rheumy only has one ANA negative Lupus patient and she had a positive kidney biopsy for Lupus nephritis. I know she does a lot of research that is published so maybe that influences her diagnosis for Lupus but at the same time if someone is symptomatic and she can see it then she will treat it as though it is Lupus but just not call it Lupus. So there is a difference between diagnosing versus treating.

She is very much into the 11 criteria for diagnosis.

When something flaky shows up in my tests and the Drs query it then I just shrug my shoulders and say 'it's Lupus, it has its own rules'. They just nod.

[Hidden in reply to Hidden]

I think there may well be differences between patients with the same auto immune diseases because of what viruses etc. You have been exposed to. To me it makes sense because your immune system is fighting these foreign baddies in your body if it is getting confused and you have had food poisoning for example then seems logical that your wbc could start attacking healthy bowel tissue afterwards? There is also probably gene combinations that need to be factored in but science needs to catch up a bit there. The difficulty is finding a dr who is curious enough to want to get to the root of your symptoms!

[lupus_01]

I am in similar position. Years of joint and muscle pain and now fatigue. No rash though. My gp was sure it was RA and has been testing me for 5 years hoping the blood work would confirm. Earlier this year he sent me to rheumatologist who did not seem particularly interested in me but did organise a bone scan and ordered bloods. Bone scan came back ok but showed chronic arthritic changes but bloods confirmed hla b27 positive. Lupus anticoagulant positive. Ana negative. Esr 20 crp 29. Looks like liver and urine tests ok

She does not appear overly concerned as i am not seeing her until january and she just told my gp to put me on aspirin. On top of my usual anti inflammatory and pain meds.

Although i suffer joint and muscle pain i certainly dont appear to have a lot of lupus symptoms. Maybe in january i might get more info but not holding my breath.

[Hidden in reply to lupus_01]

Treatment seems to vary greatly doesn't it from one consultant to another. I will be focusing on driving home the fact that I cannot hold down a job or do many things that others take for granted. Just muddling along isn't good enough but I think I will find the consultant will not be overly concerned too. I do not have much restriction in movement but I practiced yoga for years altho had to stop in July as my neck was so painful. My appointment is also January so fingers crossed we get some good news to report back!

[Puska in reply to Hidden]

I'm not sure the holding down of the job will convince the consultant though because it is so subjective.

[Hidden in reply to Puska]

No probably not so just got to hope the debilitating symptoms I have had for 25 years do!!