Hello, 47 year old male in Dallas texas. Back about 20 years ago i used to be part of a email only forum and I remember wolfgang was in there. well I'm back.
I had my foot radically operated on about 20 years ago with skin grafts galore. They told me one day that it might spread to my hands. I guess that day is now. I started having problems putting my wedding ring on about 6 months ago, thought it was just swelling from no thyroid. Then almost in the matter of 3 weeks, knuckle pads appeared and a chord in the left hand, and knuckle pads in the right hand. I am in terrible pain and when my hormone level is low, the pain is almost unbearable.
I am seeing a hand specialist here in Dallas next week that does the xialeflex injection and trying to get to oklahoma city to see the doctor there that does the radio therapy.
I don't know where to start with this. DO i do the radio therapy on my hands and my other foot that has a nodule in it, or do i do the injection first etc? what should be my plan of attack?
Has anyone else with a thyroid issue here, and also has anyone else seen this doctor in oklahoma Dr. herman?
Re: New here but not to the disease - hello wolfgang
Doctors measure the contracture in degrees. My pinky has a 120 degree contracture. 180 degrees would be when the tip of my pinky is basically touching the palm of my hand. 90 degrees would mean that my pinky is bent halfway down - think of what a right angle looks like!
Xiaflex is only used when there is a measurable contracture in a finger. Radiation Therapy can be used when there isn't a contracture as long as the disease is active.
Re: New here but not to the disease - hello wolfgang
Hi Bruce,
welcome back! One of the advantages of this forum is the additional information on this website, which you can access through the above menu. Another advantage is the Search Forum function (left menu). You might still find some of your own posts because we saved many posts of the old forum when it got flooded with spam. This Forum is now managed and spam controlled.
Xiaflex is typically only applied for bent fingers (bent for more than 20 degrees) and often can make them straight again, pretty much like NA that you might remember. You don't really sound like a candidate for Xiaflex right now but your doctor should decide that.
Should you really need Xiaflex I would do that first, before RT. It doesn't matter much, you could also have radiotherapy first or even do both in parallel. But hand surgeons typically feel more comfortable without RT. Note that radiotherapy carries an increased risk of developing cancer in the irradiated area (details are on http://www.dupuytren-online.info/radioth...de_effects.html).
Your Ledderhose is quite impressive ... Ledderhose is sometimes also treated with RT. Unfortunately there are not many options available for Ledderhose.
BTW, I myself have lost 1/2 of my thyroid. I refused the other half although the surgeon wanted it ... Not sure whether thyroid surgery is related to DD but I personally believe that any surgery can trigger onset of DD if you already have it in a dormant form.
Re: New here but not to the disease - hello wolfgang
I'm very scared about all this. Im so tired all the time because of my low thyroid and now the pain is so bad in my hands. Whats really weird is when I'm fatigued, the hands hurt worse. When I'm not fatigued they don't bother me at all. I have attached a photo to show you what the chord looks like trying to form and one of my knuckles. both hurt equally as bad. I cant barely touch my knuckle without pain. I am not sure what to do but i set up a consult over the phone for RT, going to see a hand person here in dallas as well next week. not sure what the hand consult will yield. Im glad to see you still around wolfgang after 20 years. you have done a wonderful job here. I welcome anyone to help me please. please look very closely at the center of my hand
Re: New here but not to the disease - hello wolfgang
brucergoldberg:I'm very scared about all this. Im so tired all the time because of my low thyroid and now the pain is so bad in my hands. Whats really weird is when I'm fatigued, the hands hurt worse. When I'm not fatigued they don't bother me at all. I have attached a photo to show you what the chord looks like trying to form and one of my knuckles. both hurt equally as bad. I cant barely touch my knuckle without pain. I am not sure what to do but i set up a consult over the phone for RT, going to see a hand person here in dallas as well next week. not sure what the hand consult will yield. Im glad to see you still around wolfgang after 20 years. you have done a wonderful job here. I welcome anyone to help me please. please look very closely at the center of my hand
Why aren't you able to get your thyroid numbers regulated? I had my thyroid out years ago but I've been able to maintain normal TSH levels by carefully regulating my medication. I rarely, if ever, have symptoms of low thyroid.
Your knuckles may be developing knuckle pads which are common with Dupuytrens. I have several of them and they do hurt. There's not a lot that can be for them, though. I have a RX for an anti-inflammatory cream that I can use on my hands when they are painful. My entire right hand is now curled into the palm and is full of many cords and nodules. The cream does help some. The doctor also recommended using naproxen as needed.
It's good that you have an appointment set up with the doctor. That is the best place to start. He should be able to give you advice on your treatment options. I don't know of anyone have RT for knuckled pads, but maybe you can ask around about that. If a cord is forming, it might be a good time to do RT. ~ dawn
Re: New here but not to the disease - hello wolfgang
i cant get my free t3 up. Its a weird thing. they think i have "resistance to thyroid hormone". I just cant get my numbers stabile. Right now as i type this, i am completely fatigued, I'm anxious and my ears are ringing.
do you think there is a link between thyroid disease and these stupid things in our hands?
Re: New here but not to the disease - hello wolfgang
brucergoldberg:i cant get my free t3 up. Its a weird thing. they think i have "resistance to thyroid hormone". I just cant get my numbers stabile. Right now as i type this, i am completely fatigued, I'm anxious and my ears are ringing.
do you think there is a link between thyroid disease and these stupid things in our hands?
how come you havent had the chords cut?
I don't know that there is any connection between thyroid disease and DC.
I have had Xiaflex and it flared the DC and it got worse within a year. Last fall I had open surgery on my hand to remove cords in my palm, pinky and middle finger. Within two months the DC came back and was ten times worse. Now the entire right hand is a mess. My only option at this point is a dermofasciectomy involving skin grafts across the entire palm and all my fingers. I am not going to have surgery again any time in the near future. I just run the risk of it being a total failure (again). I can use the index finger on my right hand so for now, I'm just dealing with it.
My left hand is getting worse quickly. I may opt to have NA on it in a few months. But at this point I am pretty hesitant. Obviously, my DC flares up anytime we try to mess with it.
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