Long post warning but to summarise I have just been seen by rheumatology after a 6 month wait to be told that I do not have RA because all my blood tests are negative.
though according to the Airmid app, which my GP uses, the CCP is over-range (<7) on app
The rheumy did examine my hands, has requested a nerve conduction test to check for carpel tunnel (I do not have any weakness only pain and stiffness), and a referral to hand therapy (I already do a lot of exercises/movement) but he did not request any form imaging.
At this point I am willing to pay to get a second opinion or at least more answers.
This past year both my hands have become increasingly painful for days following any out of the ordinary use such as driving for more than 30 minutes and last week when I painted 2 fence panels.
Every so often a joint will itch, go red and I will be left with a swelling/lump that does not go away.
I feel like I am trying work with sausage fingers, I have broken a few glasses and spilt many drinks so I am now banned from handling anything fragile or sharp and use a tray to transport drinks. When I first wake up and often during the night I will wiggle my fingers to get some degree of normal feeing in them but they can remain sausage like all day, especially if I stop using them.
If the temperature goes below 15C some fingers will go white and numb so I have taken to wearing gloves and have found compression gloves to be quite helpful.
I have pain in many other joints but except for my hips I barely notice it as other pain overrides it.
Other symptoms include getting hot, sweaty and breathless with the slightest activity, I vac in my underwear and thermal socks, my feet are permanently cold and I have to wear socks even in the summer to avoid chilblains. My energy levels, though never great, have tanked to the point I cannot vac more than one room at a time and slowly.
I am finally post menopausal at 56, never smoked, drink no more than 4 units of alcohol a week and am only 2lbs over weight on a bad day and with very little appetite, avoid processed food and tend to keep carb intake low as OH is diabetic. My thyroid packed up over 40 years ago and currently take 2 grains of Armour which keeps my T3 readings at a decent levels.
Thanks to everyone who has managed to read this tome.
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Helsbells68
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Not Levothyroxine for thyroid? And the simple answer is yes you can but it does sound like a lot more going on. First step really could be talk to your GP. The NHS checks T3 T4 and TSH and ask for that blood test. I’d suggest before going private and I’d do that anyway if I thought it would help but before doing that ask about a full blood count, and elimate other things. Because no point if it’s simply an infection or things related to hormones or something else.
In my experience unless you go to see them with a vague idea as to what is wrong, if bloods are within range most GPs are clueless, well all the ones I have seen are.
I was on Levothyroxine years ago but I did not feel it was working as well as it could, I even tried Liothyronine but ended up going private and have found NDT to be the best option. I do my own thyroid blood tests with Monitor My Health via Thyroid UK and my latest results are:
Free T3 5.8 (3.1 - 6.8)
Free T4 (12.0 - 22.0)
TSH 0.02 (0.27 - 4.2)
All other tests including: Full blood count; Urea and electrolytes and Liver function tests, apart from my Serum gamma-glutamyl transferase level which is only just over, are always within range.
To increase my TSH I would have to reduce my thyroid meds which might help the hot/sweaty episodes but would make my fatigue, weight and constipation worse.
Yeah sorry I was clearly not with it this morning- it’s over active at that level not under. After 25 years you would have thought I’d got my head around that!
Why wasn’t the thyroxine just increased ? It’s the standard treatment on the NHS and works for millions of people. I’m puzzled as you’re sort of describing hypothyroidism. Perhaps as I said a full NHS blood test might help. I don’t know but is a simple first step to take and might save you money. Kidney function might be helpful too.
If you have even read any of the posts on the Thyroid UK forum you would understand why an awful lot of people hate Levothyroxine and the GPs always want to reduce my thyroid meds when they see my TSH levels, I have to make a point of explaining that as my T3 is in range I am not over medicated.
Isn't the Urea and electrolytes blood test for kidney function, if so they are all within range.
Then no GFR is recorded for kidney function. So I think this is confusing and you may be confused. They need height, weight BP and calculate if kidneys are working well eGFRe is estimated and GFR the real calculation. Sorry but I do know about Hashimoto's and Levothyroxine and prefer taking a well tolerated medication than something from dead pig glands. And don't agree with you. Its actually dangerous to take too much it affects the heart badly its not a trivial condition to play around with being overmedicated as people might feel better until they get palpitations etc. . Anyway I've tried to help as you asked for advice so now if you know the answer what are you asking again.
No that isn’t your GFR. It’s part of the calculation. As I said you need height, weight etc. I’m not going to try to help you anymore as you’re not listening. If you think your private consultant for Thyroid is right I’m puzzled why they would they not issue a UK private prescription and instead let you get a medication in from America. It would, if reputable be available here just not on NHS. I’m well aware of what ” a lot of people”might say as it’s an often abused medication in the belief it is harmless. But it isn't and used by some for weight loss it’s killed. I hope you find a solution but it is my opinion that you should listen to your GP , not believe everything on a webpage and get proper help. Especially if the dose you’re self administering is causing any weight loss. I have no experience of a GP who prescribes purely on numbers but frankly if you’re in the normal range for your age etc then taking more would cause symptoms and could be doing your heart damage which just might be irreversible. I wish you well but please talk to your GP before taking any medication because neither you nor any of us on here can interpret any of the test results becuase we are not medically qualified. Moreover in the past 30 years I’ve never had a problem with Levothyroxine it hasn’t as far as I’m aware changed in any way and it’s worked. I take 150 mcg a day no issues at all and it’s taken by millions of people who don’t do anymore than swallow, get regular blood tests and carry on with life.
To confirm you would need a second opinion, but it certainly sounds like RA to me. My bloods never show any activity in them, though at the moment my whole body is in pain . My hip is rough as well and this morning my left knee is in agony. SO my advice is get a second opinion it won't hurt will it. Hugs. xxxxxx
I’m s - negative and it took 15 years to be diagnosed. My bloods showed no RA . Eventually diagnosed due to symptoms and scans . The cold feeling in feet could be something else. I’m not going to speculate but your thyroid really does need more investigation. I would use this as a starting point . Get one one thing sorted then go from there . Good luck .
it certainly sounds how I felt 4 years ago, so certainly could be ra. But a thought, my sister recently felt this way particularly in her hands and was concerned as she has seen my ra develop. But it turned out she had low b12 and vitamins fixed it. Low b12 is definitely a side effect of thyroid. Just an idea of something to check - good luck
I agree with all the comments going on the thyvoid forum and seeing your gp. You can also get a scan of your hands. My blood were negative for ra but I had a scan and it showed ra. I also had an u derby active thyvoid too.
That sounds like me. They were about to discharge me with no diagnosis but as an afterthought they decided to ultrasound my hands. Raging inflammation of all the tendons in both hands. Now on treatment and so far it seems to be keeping the worst pain and stiffness in check. You need to persevere, and push for imaging. Good luck
I also have tensonyvitis in my fingers. I also have chronic tendinitis in my legs for the last 20 years and it’s now in my arms too. Just wondering if you were the same? They can only see Osteo damage to my joints (due to my tendons being too short/inflamed). What have they diagnosed you with and what treatment? Sorry for the questions it’s rare I see someone talking about the connective tissues on here.
Another possibility is psoriatic arthritis. You don't have to have psorisis to have psoriatic arthritis. My blood work is always within reference for most things but when I pointed out some of the other symptoms with a second opinion rheumatologist (first one tried to fob me off with fibro, he got a formal complaint for is efforts!) they realised it was PsA.
Yes. My bloods are always normal, but I am "fortunate" in that an x-ray of one hand showed damage typical of psoriatic arthritis in two fingers - otherwise, I doubt I would have had a diagnosis even though I have had mild psoriasis for nearly 50 years! Sausage fingers are very typical of PsA, and it is notoriously difficult to diagnose as at least 50% of sufferers have normal bloods and not everyone has psoriasis at diagnosis. Raynauds (which is what your cold fingers and toes sound like) can be primary (just develops on its own) or secondary (as a "bonus" effect of another condition). I had mild primary for many years but it disappeared. It returned and has been a bit more troublesome after the arthritis kicked in, so I suspect I now have secondary Raynauds.
Sadly, there is yet another possibility. Raynauds sometimes goes with scleroderma, which can also cause joint pain and inflammation.
So, my advice is that you keep pushing. YOU know that your joints aren't right. There are so many different autoimmune conditions which can cause the same or similar symptoms. Keep pushing until they give you a diagnosis or agree to treat you as if you have one of these conditions. It took nearly 2 years after diagnosis to get my symptoms fully under control. But I am now doing really well. You need, and deserve those meds! Good luck
If I go to my GP about my thyroid they will look at my TSH levels and want me to reduce my meds or go onto Levothroxine, anyone who has read any of the post on the Thyroid UK forum will know it is now much worse quality than it was 30 years ago.
There is room to increase my thyroid meds but there is a risk that could increase the hot/sweaty episodes.
I have been on the thyroid forum in the past and have optimised all my vitamins and minerals, I take vitamin B complex, C, D plus K, zinc and magnesium.
My last Active B12 test was nicely in range at 111 pmol/L (Range: 25.1 - 165).
Is there any way to request a scan directly or would I need to go back to rheumatology for that?
Hi You have a mixture of symptoms which could relate to several different conditions or not. Difficult to pull it apart however. Yes you can have sero negative RA which means you have a negative Rheumatoid Factor but still have RA. It took 9 years for my diagnosis because of this. Your white toes & fingers could be Raynaud’s disease which I have. Wearing warm socks is what they recommend & if painful especially worse in colder months then meds can be added. As others have said your symptoms can be Thyroid issues. Others here will advise on those as I’m still trying to understand it all. I hope you get some answers soon though.
I spent the best part of 19 years chasing a diagnosis, I knew what it was but couldn't get past GPs. The fact that my ESR and CRP were not raised made it so difficult to push for a Rheumatology referral.
Long story short I hit lucky with a German doctor who had spent time reading my notes and referred me immediately.
Even when I had my initial appointment the rheumatologist stated I had Hypermobility and that, that was probably the issue. She booked me an MRI to 'cover the bases' but said it would probably show no signs of Axial Spondyloarthritis.
Sure enough, turns out I had indeed active Axial Spondyloarthritis- as well as a list of related issues.
An x-ray in 2016 proved I had Ankylosing spondylitis.
My brother has Non radiographic Axial Spondyloarthritis- and mum has severe Rheumatoid arthritis.
Both have elevated CRP....me, nope. I do however have increased white cell count and d-dymers (always a source of confusion if I'm in A&E and my AS isn't being treated).
You do not need an increase in markers to have RA or AS, they need to look into your history and what's in front of them. Get a rheumatology referral and go from there.
This is the issue, I have just been seen by rheumatology and he just no RA because of my negative blood tests without any scans. I am now considering whether to go private and pay for a second opinion but scans would be useful before that.
There are many tick borne diseases that mimic arthritis, have you ever been tested for those? Also in the US, Xrays are a standard along with the blood work, you can't get your GP to order hand Xrays?
you have just described my symptoms. My diagnosis is Adult onset Stills Disease made in 1979 aged 17 now 62. I’m post menopause, have been in some sort of flare since Oct 22 possibly as a result of combined Covid:flu vaccination, my first flu vaccination. Blood tests warned of cancer and raised liver enzymes but after all the ‘scopes’ none found. Subclinical thyroid issues suspected but GP won’t test until I’m more unwell. I can with certainty say all my joints hurt a lot more than they did before this flare and are getting worse so either Stills is playing up or thyroid issues are affecting my joints or a combination of both. I’m trying to get appointment to see my GP or speak to a nurse or anything that will move this on as there’s only so much I can tolerate and it’s all really affecting QOL.
I understand completely. I had a blood test 2.5 years ago when I had a bout of diverticulitis and for some reason the GP included a Serum CA 125 (cancer antigen 125) test which came back slightly above range, 4 weeks later and I had been scanned and found to be clear of cancer but I do have adenomyosis, endometriosis and fibroids which the menopause has resolved.
You can always check your thyroid yourself through an NHS lab, Monitor My Health for £28.80 with a discount code from Thyroid UK thyroiduk.org/testing/priva...
Yes ca125 was written somewhere and they did find mild diverticulitis probably caused by years of taking codeine meds for RA. I’ve subsequently researched and discovered Stills can cause raised liver enzymes too. I think the cancer worry was that I lost 16 pounds in 3 weeks without having sickness and diarrhoea. The weight has stayed off and I’m stable at 8 stone 8 now so I did need to lose at bit at only 5 foot 1 but it’s revealed all my wrinkles
Mine was decades of constipation due to being under medicated thyroid wise and we went on holiday and I decided to have eggs for breakfast a couple of mornings. Do not usually eat breakfast and I know eggs bung me up but I like them occasionally.
I wish I could lose a few pounds but that is so much harder post menopause.
I’ve had constipation all my life even before Stills was diagnosed. It’s a pity about eggs isn’t it as being veggie they provide a good source of things we need unfortunately I don’t like them. I have found fresh pineapple helps constipation a little.
hi, I haven’t read the other posts, but I wanted to add I have the exact same symptoms and my bloods also show nothing. I have very noticeable Renaulds and suffer if the weather goes below 20 degrees. I’m being treated for UCTD but my symptoms lean more towards Lupus than Rheumatoid. I’ve only had one positive ANA the rest were negative. Only one positive scan catching the swelling. Please call up when you’re swollen so they can catch it - if it wasn’t for me doing that I would still be unmedicated now as no one believed there was anything wrong.
Hi Helsbells ~~ I am so sorry you are on this journey looking for answers. To answer your question, Yes! you can be sero-negative and have RA. I am sero-negative for RA. None of the screening tests indicate RA even when my symptoms are flaring. (multiple joints painful with swelling, redness. Exhaustion...lots of exhaustion.) My GP referred me to a Rheumatologist who ran me though all the screens and scans. Nothing. My Rheumy didn't give up because I had responded to Prednisone and was pain and symptom free while on it. He finally ordered immunoglobulin titers for RA and the IgG component was markedly elevated. The only test that was positive and it wasn't a routine screen. Alas, one can not live continually on 20 mg Prednisone daily for long periods of time without adverse reactions. Four years into the post diagnosis period and we found a medication combination that relieves my symptoms about 85%. After 6 years, 85% feels fabulous. I am on Abatacept, methotrexate, folic acid along with prednisone for flare-ups. I haven't needed prednisone since Christmas.
You do need to have all of your issues looked at. I too agree that you need a second opinion regarding your overall health situation. I truly wish you a speedy diagnosis and rapid response to your therapies.
Very sorry your hands are sore. I agree that you need another opinion as no one has explained your sore hands. Whether it is psoriatic arthritis or seronegative RA blood work can be totally normal. I was misdiagnosed as having fibromyalgia when I have psoriatic arthritis. My hand were very sore. Best wishes.
Thank you to everyone for encouraging words and valuable advice.
My plan now is see how long the wait is for the nerve conduction test and hand therapy, then see if either of those departments can order scans, if the wait is too long I will contact the rheumatology department and demand scans via them.
We have a pointless system in my area where a GP can request an ultrasound scan but because they are performed by an independent company (read contracted out private) the scans cannot be accessed by the hospital.
The nerve conduction tests will ascertain if you need a carpal tunnel decompression. They could also throw up if you have any neck problems which can cause pain in a lot of locations
I had that very simple CTD procedure last year under a local anaesthetic & have had no problems ever since. So wait & see the results of that before you get too worried.
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