Does rhis sound like scleroderma symptoms?

[Elsie2022]

Hi all, I was actually on this form under a different user name but for some reason couldn't get access to this group with the old user name. Anyhow, long story short I begin to have rather strange symptoms about two years ago, mostly muscle pain and the medical tests commenced without any satisfactory conclusions. In December 2022 my doctor run antibody tests and I was postive for both Scl-70 and Anticentromere antibodies. I subsequently saw three rheumatologists and a scleroderma specialist who all agreed that they couldn't gave me a definitive scleroderma diagnosis due to lack of specific symptoms and the two different antibodies. Nearly three years later I have begun to have some strange symptoms, but to confuse matters more I also have hashimotos, so it has being hard to know which symptoms are from hashimotos or possible sclerosus.

I have had maybe three episodes of raynauds in tbe last ten years, so I'm not sure if my symptoms are an atypical presentation of this or something else.

My symptoms are mainly joint/tendon pain in hands and feet, numbness, swelling in my fingers in the morning prune like appearance for hours and loss of fat pads on my thumbs, making typing and other tasks particularly painful.

The numbness isn't related to raynauds as my fingers still feel warm to the touch. I can't see any tightening, but the loss of fat pads does worry me a possible manifestation of scleroderma.

Anyway can anyone relate to these symptoms or enlighten me as to why they are occurring?

[OldTed60]

Hi I’m just recovering from surgery so may not be coherent but I’ll try. The Scl-70 can often be false positive so needs re-running but having two is usually taken as UCTD as scleroderma antibodies apparently are always stand alone and at high titre and should not be intermittent. Otherwise could well be too early to have made up its mind yet. But I can see, from personal experience, why they won’t diagnose scleroderma just on presence of several antibodies. Limited SSc can apparently be a v slow burner.

However I’m a bit confused about how your hypothyroidism could be spanner in works since symptoms can’t really be compared. Mild GERD, poor temperature regulation and fatigue are common in this endocrine autoimmune, which many of us have along with other systemic autoimmune diseases. I guess I’m saying that if your hypothyroidism is treated sufficiently then it should be easy enough to tell the difference as symptoms of systemic sclerosis aren’t usually nearly as vague, although, like any of these diseases, they may start this way so being aware helps.

In my case I had hypothyroidism diagnosed 25 years ago, then menopause, then misdiagnosed with RA with sudden onset Raynauds, then Sjogren’s.. With hypothyroidism I i didn’t have the shrivel finger pads or swollen hands or any other symptoms than hair loss, general tiredness and weight gain. No MSK pain. This started with what was diagnosed as sudden onset RA in 2011.

Now my main autoimmune is systemic sclerosis and it’s why I’ve just had major GI surgery - although Sjogren’s is a hellish disease too -but mine is seronegative. I carry one rare scleroderma antibody at high titre - although another one from same nucleolar panel sometimes peeps but apparently this is not the one they focus on and just a false positive. It took 12 years for mine to be correctly diagnosed last year. I have occasionally made a fuss to old Gps about not getting enough thyroid hormone and enlisted an endo once or twice so I do understand what you mean. But the symptoms of under treated hypothyroidism eg Sicca and fatigue and GERD are not remotely same league for me personally. So I can tell now and simply ask for thyroid panel tand we tweak meds accordingly.

The most definitive test for scleroderma or secondary Raynauds is a nailfold capillaroscopy - a simple non invasive test of your fingernails with high magnification. I would say this test would help if you feel you have symptoms of systemic sclerosis eg worsening Raynauds, skin tightening, itching, severe fatigue and worsening GI symptoms. Get your antibodies retested only once your Hypothyroidism is well controlled as I think this factored in for me early on. Also bear in mind that Raynauds can occur without much colour change in early stages so you maybe having mild attacks unaware. Best of luck 😊

[Elsie2022 in reply to OldTed60]

Hello Old Ted and thank you for taking the time to reply so promptly and with such a wealth of knowledge, given the circumstances of your own health issues ( recovering from major surgery) and all that it entails.

I must say if you are questioning your ability to be coherent, please don't as your answer is incredibly informative and you have articulated so precisely what even a professor of Rheumatology failed to do so as wel,l as you have.

I absolutely agree with you about the antibodies being stand alone and therefore cannot be happening concurrently, unless in exceptionally rare circumstances.

I persume that is why among other reasons that they cannot gave me a definitive diagnosis as I don't fit into a certain medical criteria.

In regards to hypothyroidism " Being a spanner in the works, " it is basically because my thyroid isnt sufficiently treated and my TSH is quite high and I have a lot of symptoms due to this. My GP and other people on different forums have said that MSK, swollen fingers and paraesthesia can be symptoms of Hashimotos. This coupled by the fact that SSc is a slow burner has confused things somewhat as to whether it is SSc, hypothyroidism or a combination of both.

I assume, as you said you have had hypothyroidism for 25 years, that your hormones are kept at optimal levels by medication.

You obviously have had a lot to deal with medically and my heart goes out to you trying to deal with all those autoimmune issues and the subsequent symptoms that come with them. I have heard that Sjogrens is a hellish disease and poorly understood by both medical professionals and laymen, and just how many body systems can be effected by it.

I absolutely agree with you, that it is important to get my thyroid in a optimal state and then have my Scl-70 and Anticentromere antibodies retested. Also I did have a suspicion that my symptoms may be related to mild Raynauds attacks, without the usual colour changes.

I actually did have the nailfold capillaroscopy test about a year and a half ago, and I had normal capillaries. However, I'm presuming that once the disease progresses that these results will also change.

Thank you again for your reply, and I hope you have a very speedy recovery.