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Newly diagnosed, Cambridge, England
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10/25/2012 18:44
cello297 
10/25/2012 18:44
cello297 
Newly diagnosed, Cambridge, England

Help please: I have had hard lumps on both hands for some years now – 5 or 6 – and was unworried. About four years ago my doctor told me that it was Dupuytren’s Contraction, though there was at that stage no contraction. However, I don’t think she gave me any advice except to avoid surgery until the last possible stage as it could only be performed once. I payed little interest as I had a bigger problem (Prostate Cancer) taking my mind off the hands.

That doctor has moved on and I showed my hands to my new doctor, now with pinkies both in by about 10 degrees. The new GP has told me to put my other ailments on the back burner as this is likely to give me ongoing trouble. He also advised me about surgery being the last option and suggested that I research the disease to get a general understanding, while he does much the same, checking for up to date thinking and looking for specialists.

I am looking for advice, professional or lay, and would be grateful if anyone can advise me of a specialist in this area – I live near Cambridge UK.

I have been conscious of lumps in my hands for about 5-6 years. The little fingers have pulled in by about 10 degrees now. I have a spot on the tip of my left index finger that has lost feeling. Can this be a symptom of Dupuytren’s? I am 65 years old and can’t think what else would help people advise me.

There is one further favour: has anyone out there got a way of remembering how to spell it? I have to look it up every time! Dupuytren’s. Keep on trying.

Thanks for your help. Shane

10/25/2012 18:53
callie 
10/25/2012 18:53
callie 
Re: Newly diagnosed, Cambridge, England

Your age is significant. Generally, the later in life that you contract Dupuytren's, the less problems that it causes. There is a great percentage of people your age that live with Dupuytren's without doing anything. My surgeon said that very seldom did he ever do surgery a second time on a person (not needed). Optimum time for surgery is when the fingers reach 30-50 degrees contracture, which may never happen. If you don't want to wait that long you can try NA (which is listed above under "Treatment".

10/25/2012 19:12
cello297 
10/25/2012 19:12
cello297 
Re: Newly diagnosed, Cambridge, England

Thank you Callie. now it looks as if all I have to do is to learn the spelling in case it does get worse!

Shane

10/25/2012 19:47
spanishbuddha 

Administrator

10/25/2012 19:47
spanishbuddha 

Administrator

Re: Newly diagnosed, Cambridge, England

The British Dupuytren's Society has a patient leaflet on its website http://www.dupuytrens-society.org.uk/TreatmentD.html that you can use to discuss treatment with your GP. The difficulty in the UK will be getting RT or Xiapex on the NHS as cover is patchy ('post code lottery'), but is available privately. The lesser surgical outpatient option, NA/PNF to straighten a contracture should be available via the NHS. I will also send you a private message.

You may also get more local info via a post on the facebook page https://www.facebook.com/britdupsoc

10/31/2012 17:08
pjoshea13 
10/31/2012 17:08
pjoshea13 
Re: Newly diagnosed, Cambridge, England

Shane,

Please contact me offline re PCa & Dupuytren's.

My lengthy response to you disappeared in the void, so email me at pjoshea13@gmail.com.

-Patrick

10/31/2012 17:10
pjoshea13 
10/31/2012 17:10
pjoshea13 
Re: Newly diagnosed, Cambridge, England

Shane,

Managed to retrieve my initial response. 2nd try:

Hi Shane,

I was diagnosed with prostate cancer in 2004. I had a radical prostatectomy, which immediately failed, followed by salvage radiation, which also failed. I mention this because it has some bearing on Dupuytren's.

Early in 2006, I was having considerable difficulty with my right hand. i went to see a hand doctor. He diagnosed the condition & advised against surgery.

In the following 2 months, there was a rapid deterioration, & one finger was bent at right angles - couldn't be straightened.

And then, all progression stopped, & there was a gradual reversal of the condition. My hand today looks perfectly normal. All of the unsightly bumps on my palm have gone.

It was actually quite easy to make a connection to a change in my PCa regimen.

There are thousands of papers on PubMed involving natural substances & prostate or breast cancer (which has similarities to PCa). I retired in 2000, & reading these study results is now my day job. The literature on iodine deficiency & PCa is fairly scant, but there is quite a bit for BCa.

I read enough to convince me to take Iodoral each day.

As soon as I made the association, I started looking for a Dupuytren's-Iodine link. There was very little in 2006, but enough to reinforce the idea of a connection.

What was really interesting to me was to find a connection between Dupuytren's & Peyronie's, since doctors at Johns Hopkins had noticed a greater risk for Peyronie's in PCa cases. The assumption was that surgery was causing Peyronie's progression, but I had my doubts that this was the full story.

To sum up. PCa, Dupuytren's & Peyronie's are male conditions that tend to increasingly occur later in life. Each has some association with iodine deficiency. When I began using Iodoral for PCa, my Dupuytren's slowly reversed.

For any questions that cross over into PCa issues, contact me offline at pjoshea13@gmail.com

-Patrick

10/31/2012 17:30
callie 
10/31/2012 17:30
callie 
Re: Newly diagnosed, Cambridge, England

pjoshea13 (Patrick),

Do you have any valid information about this? Why hasn't this information been spread through the Dupuytren's community?

10/31/2012 18:36
spanishbuddha 

Administrator

10/31/2012 18:36
spanishbuddha 

Administrator

Re: Newly diagnosed, Cambridge, England

callie:
pjoshea13 (Patrick),

Do you have any valid information about this? Why hasn't this information been spread through the Dupuytren's community?
I'm not sure there's anything new here!? There have been discussions on the forum suggesting links to thyroid problems and iodine deficiency, and also reports of people trying DMSO with SSKI (iodine). Just anecdotal reports usually with hopeful short term improvements, but nothing long term or links that are real evidence.

10/31/2012 21:04
pjoshea13 
10/31/2012 21:04
pjoshea13 
Re: Newly diagnosed, Cambridge, England

There are no papers on PubMed to suggest an iodine connection. At this stage, I doubt that you will find anything other than anecdotal cases.

In my own case, the problem first showed up below the ring finger. There was a lump & a pulling sensation that caused a downward dip in the heart line that ultimately measured about a quarter inch.

Other lumps appeared over time, and by about 3 months after diagnosis, I couldn't straighten my middle finger (not the ring).

The deterioration was then quite rapid, and the middle finger became locked at 90 degrees.

I was not actively looking for a solution by then, having been told that it was my fate (genes, gender, age, etc.)

My decision to use Iodoral was based purely on prostate cancer studies. I had no thyroid issues.

Some here might know that iodine is a halogen, & that other halogens in the body will compete for receptor binding. One reason why so many people are against fluoride in the water supply, is that fluorine is a halogen. Chlorine is another halogen. I use well water, so fluorine & chlorine were not issues. Bromine is another halogen. Bromated flour is thus an issue. I have made my own bread for many years & have never used flour "improved" with potassium bromate. Incidentally, it is banned in the European Union & Canada, but Americans are unwittingly subjected to it. Avoid any product that has improved flour in it. The fifth halogen is astatine. Seems to be the only one that hasn't been foisted on the American public.

I regularly eat fish 3 times weekly.

So, no thyroid problem, competing halogens, & some iodine in the diet from fish. How important could an iodine supplement be for me? Incidentally, I do not use much salt, & it is not iodized.

But it turns out that prostate cells have iodine receptors, & perhaps not enough was getting through?

After beginning Iodoral, I noticed no change in my general health.

However, I quickly gained mobility in my middle finger. The locked finger had been the most recent development & it reversed in a similar timeframe. Older changes were reversed more slowly. In fact, after 4 years, there was still a noticeable dip in the heart line. Also, although lumps were no longer visible, I could feel a lump beneath the ring finger. Two years later, the lump is gone & the dip in the heart line is almost invisible.

Frankly, I never expected this. I was quite happy to halt progression & straighten the middle finger.

Dupuytren's would not even be on my radar today except the subject of Peyronie's came up today in a PCa group I belong to. I Googled <dupuytren's prostate> & found Shane's post.

As to <dupuytren's iodine> there some hits, e.g. this from Jonathan Wright. He is on the Scientific Advisory Board of Life Extension.

"“Dupuytren’s contracture” and “Peyronie’s disease” are two “fibrotic” conditions that can be helped considerably by SSKI {potassium iodide}. In Dupuytren’s contracture, thickening (fibrosis) occurs along one of the tendons in the palm in the hand, pulling the related finger down towards the palm. As the problem progresses, the finger often can’t be straightened any more.

In Peyronie’s disease, a very similar thickening occurs along the shaft of the penis, making erections increasing “curved” and painful. In both cases, rubbing SSKI into the thickened tissue at least twice daily softens and lessens the fibrotic area over a period of several months, allowing for more normal function.

For these conditions, it’s additionally helpful to take para-aminobenzoic acid (PABA) 2 grams, three times daily, and to rub a mixture of Vitamin E and DMSO into the thickened areas, also. However, if “caught early”, SSKI alone will often “do the job”. (It’s also advisable to have glucose-insulin tolerance test done, as there’s an unusually high incidence of “insulin resistance” in people with Dupuytren’s contracture or Peyronie’s disease."

http://tahomaclinicblog.com/iodide/

Dr. Brownstein is the author of :

"Iodine — Why You Need It; Why You Can’t Live Without It"

He implicates deficiency in:


· Breast Disease

· Dupuytren’s Contracture

· Excess Mucous Production

· Fatigue

· Fibrocystic Breasts

· Hemorrhoids

· Headaches and Migraine

· Headaches

· Keloids

· Ovarian Cysts

· Parotid Duct Stones

· Peyronie’s

· Sebaceous Cysts

· Thyroid Disorders

· Cancers (breast, ovarian, thyroid, prostate)


http://www.mnwelldir.org/docs/nutrition/brownstein.htm

This might be old ground for people in this group, but I have nothing else to offer.

Except another anecdote. A neighbor aged >75 had suffered from Dupuytren's for over 20 years. He was contemplating flying down to Florida for surgery, when he began using Iodoral. This was 3 years ago. After 6 months, he claimed to have better mobility, but he went ahead & had the surgery. And yet he still uses Iodoral today.

-Patrick

11/01/2012 07:22
wach 

Administrator

11/01/2012 07:22
wach 

Administrator

Re: Newly diagnosed, Cambridge, England

Patrick, long lists of diseases with a single remedy curing them are typical for marketing a drug or treatment. I am not questioning your experience, I am glad iodine helped improving your Dupuytren's, and it is good that you are posting your eperience here. Yet I doubt that iodine will help other patients equally well. I myself am taking Iodine daily, have definitely no deficiency but still Dupuytren's.

Wolfgang

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