Not diagnosed yet but uncertain

[Steve5678]

Over the last 2 months I'd noticed some pain in my hands (palm and fingers and thumb) when doing manual work which after a while extended into my wrists and down my forearms. Also have occasional problems with one knee and my feet and one elbow....I'm a 63 year old male....so maybe some of it is down to age.

A GP asked me to attend for some blood tests, results are as below.

RF 15.8 iu/mL (0-14)

CRP 1mg/L (0-5)

TSH 4.66 mU/L (0.27-4.2)

T4 15.7 pmol/L (12-22)

Lymphocyte count 0.83 10*9/L (1.1-3.5) this has been low post cancer treatment 2016

I've felt pretty rubbish now for about a year now with chronic fatigue, insomnia, out character headaches, tinnitus, pelvic pain, loss of libido and severe depression (which seems chemical in some way....came on very quickly for no reason), worsening in the last 2 months.

The RF seems just out of range but I see folks on the forum stating results anywhere from 100s to 1000s

CRP seems like there is no problem.

My sister suffers from CFS and Fibromyalgia, I'm wondering if this is Fibro?

I know its best to have my GPs opinion on this but my appointment is not for another week.

Maybe I'm just trying to talk myself out of the inevitable truth, which is causing me some distress as you can imagine.

I've spoken to Debbie on the helpline, for which I'm very grateful, but just wondering if anyone has an opinion on the above? I'd be pleased to hear from you.

[Steve5678]

Just like to add, no morning stiffness, and ca make tight fists and spread my fingers out without problem.....

[medway-lady]

I am sorry your'e so worried as anyone would be when things are up in the air but honestly these things do vary and its not just about blood. Some with RA have a negative RA factor. So please try not to worry to much and be patient, I know its hard and anyway RA has some very good medications. It's a journey but not hopeless. I'd just add don't Dr Google and write down all your symptoms so your GP has a full picture and go from there. xx

[Steve5678 in reply to medway-lady]

Hi, thanks for your quick reply and wise words... I'll hang on til Tuesday and see what the GP has to say as find out the next move. Indeed there is a lot to know, and as a newbie, quite overwhelming...thanks for the tip re writing everything down, Debbie suggested writing down all symptoms however trivial so as to give the complete story, sounds like a plan.

Thanks again

[helixhelix]

I think being in the borderline area can be more difficult as you have to rely on the experience of the doctor to correctly spot an inflammatory disease in the absence of clear blood markers.

You can have RA (or one of the other similar diseases) with a normal rheumatoid factor (RF) and normal inflammation markers (CRP). But you would need to have some other symptoms. A rheumatologist can feel “boggy”joints, but a GP is less likely to have that skills.

Several things that you could discuss with the doctor

- the RF blood test is notoriously unreliable. There is another test, the anti-CCP, which is far more precise. Many GPs won’t do it, but no harm in asking?

- low lymphocytes can really make you feel like shit. As can thyroid problems. So these two could be (part of) the problem?

- common old osteoarthritis can also cause the symptoms you describe. I have RA and OA and these days it is the OA that gives me far more grief. If the doctor goes down that avenue try to push for some kind of imaging to be sure. Ultrasound will show if you do have any synovitis/inflammation, or ideally an MRI.

[Sheila_G]

Try not to worry. My lymphocytes are below 1 all the time but nobody does anything about it so it can't be a problem. It does take a while for a proper diagnosis if your bloods don't have a positive RD factor. Once you are diagnosed you are very quickly dealt with and started on medication. Good luck. I hope you have a definitive diagnosis soon.

[Greencat96]

Hi Steve. Hang in there. Getting a diagnosis is a journey fir some unfortunately. For me 18 months down the line and still not sure. You are definitely not alone. I am having regular counselling sessions as it helps me to accept/adapt make sense of the whirlwind of emotions/worries that relentlessly assault me. It costs me £30 per session as it is over zoom and for me has been worth every penny.

Sending hugs and let us know how your visit to the doctor went.

[Ritaritis]

Hi Steve5678, waiting is the hardest part as our minds come up with all sorts of things. Don't Google the symptons as many results could appear, see what your doctor has to say and say with this site for support.🐕

[Steve5678]

Thanks for your support and ideas guys...GP appointment is tomorrow, lets see what he as to say.

[Hidden in reply to Steve5678]

Good luck 🤞

[Deeb1764 in reply to Steve5678]

Worth a read once spoken to your GP if fibromyalgia is a book by Dr Leon Chaitow get on kindle for 99p helped me a lot have Ra too 😘

[Steve5678]

I saw a GP yesterday as arranged and he talked the blood test results through with me. He said the RF level of 15.8 was not very far out of range (0-14) so not really much to worry about. Other blood results (CRP, plasma viscosity) showed that no inflammation was present. He examined my hands (they look perfectly normal to me) and the only comment was that there seemed to be some atrophy of the muscle on the back of my hands. I gave him a list of other symptoms I've been suffering with over the last year, he didn't think there was anything significant there, but did seem concerned about my depression and CFS. He said to come back and have the RF tested in 3 months or if my pains got worse. I must say I wasn't convinced. I'm aching all over, not just joints and am still worried, the joints haven't been too bad over the last few days. I don't feel I handled the meeting too well. Am I worrying unnecessarily?

What with the CFS, depression and lockdown my normal activity levels has been vastly reduced ....maybe I'm feeling stiff and out of condition due to this?

Any balanced comments very welcome.

Regards

Stev e