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Family Physician
Family Physician, Doctor (MD)
Category: Health
Satisfied Customers: 5660
Experience:  Emergency Medicine and Family Practice for over 26 years
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I have discoloration (significant) of lower left leg since May 2004 when I developed sympt

Customer Question

I have discoloration (significant) of lower left leg since May 2004 when I developed symptoms that were dx with Pseudo Cushings. It started out moderate but became more significant over the years. None on right leg over that time. Gradually got cortisol levels to the upper normal / slightly above normal range (not checked in last two years). In March 2013 I developed a injury-induced DVT in my left leg and was hospitalized for 6 days and then on Coumadin for over 18 months (i have been off the Coumadin for about 4 months. I have been using a compression stocking since the DVT hospital stay . Ever since the DVT (starting 2-3 months after), I have had moderate swelling on lower left leg above the ankle. About 4-5 months before the DVT noticed the discoloration starting on right leg. It became moderate (much less than left leg) and stayed there. There is no swelling of the right leg. There is no itching or scaling in that area (recently developed a quarter-sized patch of discolored skin a
Submitted: 2 years ago.
Category: Health
Expert:  Dr. Chip replied 2 years ago.
Hi. What exactly is your question about this please?
Customer: replied 2 years ago.

Well, it looks like my full documentation isn't displayed.

Did you get the full message or just what is shown?

Expert:  Dr. Chip replied 2 years ago.
It looks as though you got cut off after typing(recently developed a quarter-sized patch of discolored skin a....................Leroy
Customer: replied 2 years ago.

Let me try again.

I have discoloration (significant) of lower left leg since May 2004 when I developed symptoms that led to me being diag with Pseudo Cushings. It started out moderate but became more significant over the years. None on right leg over that time.

I gradually got cortisol levels to the upper normal / slightly above normal range (not checked in last two years).

In March 2013 I developed a injury-induced DVT in my left leg and was hospitalized for 6 days and then on Coumadin for over 18 months (I have been off the Coumadin for about 4 months... currently maintaining a regimen of natural type blood thinners with Nattokinase extract, aspirin, Omega-3 fish oil, etcetera). I have been using a compression stocking since the DVT hospital stay.

Ever since the DVT (starting 2-3 months after), I have had moderate swelling on lower left leg above the ankle. It is just above ankle area and up to the bottom of the calf (note: there was no improvement of the swelling - edema? - over the time period that I was on the Coumadin and very strict usage of compression stocking). Ultrasound follow-ups were done every six months after hospital stay. Latest one (last one, done Oct 2014) indicated that blood flow was fine, no obstructive blood flow indicated, blood flow same as right leg.

About 4-5 months before the DVT, I had noticed the discoloration starting on right leg. It became moderate (much less than left leg) and stayed there. There is no swelling of the right leg.

With both legs, there is no itching or scaling in that area (recently developed a quarter-sized patch of discolored skin above knee on left leg... it does not itch, but is scaly and visually different from lower leg discoloration).

There is no pain in any of those areas, although I get non exercise-induced aches in thigh muscles and knee and hip joints.

Also, since May of 2004 I have had tingling of hands and feet (no numbness or loss of sensation) and tinnitus. At the time I had many additional symptoms, with the others having responded to their various treatments.

Otherwise, I have developed over the last several months fatigue, lack of motivation, mild to moderate nausea, somewhat higher BP (though my current protocol has been bringing that down), and weight gain increase...

I am no longer responding that well to a fairly strict low carb diet (also endorsed strongly by Dr. Kousa) which worked very well with me for years.

It was "prescribed" to me by doctors / researchers at NIH where I was at for a 15-day study in December 2005... I was 315# ***** that time and lost 30 pounds in 3 months and then gradually another 20# ***** I then plateaued for several years - partly due to still higher cortisol levels and partly due to too many cheating spells where diet not maintained as strict as should have been. About 3-4 months ago I tightened up very strongly on the diet.

I noted that even after tightening up the diet - as I went up to 295 - I have only lost about 10# ***** last two to three months... though also my exercise program has tanked with the fatigue / lack of motivation / muscle - joint aches problems.

I need some direction on where to go from here.

I am currently seeing a hematologist who recommends simply going back on Coumadin (though Coumadin never helped either discoloration or edema / swelling - and my fatigue was greater). The hematologist before that said that I should have come off the Coumadin after six months. After the +18 months, the Coumadin Clinic specialist doctor wasn't comfortable with continuing to prescribe Coumadin - with clot having been absorbed - and stopped the prescription (and suggested a regimen of OTC and supplements for moderate blood thinning).

The endocrinologist that I saw at Cleveland Clinic left about 2 - 3 years ago. He was only one who would take case as Cushings specialists deal with regular Cushings (and are lost when it comes to Pseudo Cushings - even the NIH researchers were clearly doing a lot off guesswork.

Possible conditions and causes (I never had the edema when it was just high cortisol but had the discoloration way before the DVT / Coumadin).

Specific blood work recommendations?

I get tired of seeing different doctors who repeatedly recommended "just diet and exercise" (I am dieting and would love to exercise more than the very mild levels that I can manage).

Expert:  Dr. Chip replied 2 years ago.
Thanks for all of that. So your basic question is the leg swelling and discoloration?
Customer: replied 2 years ago.

Basically, yes... as well as the clear tie-in with the fatigue, muscle weakness, muscle aches in both thighs, lower back, and joints.

Expert:  Dr. Chip replied 2 years ago.
OK Leroy. Have you had your thyroid function tested and do you know what your TSH level is?
Customer: replied 2 years ago.

I had it checked pretty regularly in the past, but not for about a couple of years now.

In mid 2013 results were:

TSH.... 0.906 (Range = 0.400 - 5.500)

Free T4... 1.1 (Range 0.7 - 1.8)

Free T3... 2.6 (Range = 1.8 - 4.6)

A year earlier (2012)

TSH... 0.88

Free T4... 0.8

Free T3... 2.4

In 2011:

TSH... 1.0

Free T4... 0.89 (Range 0.6 - 1.5)

Free T3... 2.4 (Range 1.8 - 4.2)

DHEA levels upper end of reference range (per doctor I supplement 25mg day)

Vitamin D almost consistently in 45-49 level (Range 31-100... yet I consistently supplement, per doctor, 2000 IUs daily)

Sorry for delay, I have a ton of labs between 5/2004 and mid 2012, then a few 2013 and then none other than ultrasounds until last couple months when I had a Basic CBC done last month. Took a while to find folders and then sort through them.

Also noted RBCs and hemoglobin and hematocrit at high normal range (occasionally slightly high) while WBC counts back around 2009 were mid range, but since March 2013 (to include last month) were consistent 5.5 (range was like 4.5 to 13.0 or similar... I know the low end number was 4.5... prior readings were 7.9 - 8.8 levels).

Expert:  Dr. Chip replied 2 years ago.

Sorry for my delay.

Have you had an autoimmune disease panel?

Customer: replied 2 years ago.

I am pretty sure that I did, back like 2009, when I saw an Infectious Disease / Immunologist Specialist.

What type of blood tests / result would have been involved.

BTW, I have had the two recent (very basic) CBCs as my H&H levels (over the years) have run the gamut from somewhat high to very slightly elevated (often depending on what a particular lab's reference range is). Hemoglobin has been overall from around 16-17.5, but over last few months at 17-5 - 18.1 (with one 18.7, but I was quite dehydrated for that one... yet my last one was 17.0). With hematocrit levels corresponding. I do NOT have elevated Iron, with Fe levels consistently in the LOWER quarter of the reference range. No more than lower third on one or two occasions. My current hematologist has me doing a series of 2-3 phlebotomies as she feels more comfortable with H&H levels at / below 16 and 48 (without becoming anemic of course). From my research, I find that 16-16.5 is pretty optimal.

Expert:  Dr. Chip replied 2 years ago.

Antinuclear antibody, rheumatoid factor, sed rate and C reactive protein.

At this point let me ask--have you asked your doctor specifically about what we're talking about here?

Customer: replied 2 years ago.

Yes, I have had those tests. As part of the 2009 comprehensive testing and then many others individually in various lab work done since then. If there are any specific lab test results that you want, advise and I will wade through the folders and find the results, if present.

And, yes, I have discussed these particulars with a number of doctorS (Ural). Generalists send me to specialists and specialists focus on common things to look for in their field and address oh that. So the one hematologist tells me that he pulls all DVT patients off anticoagulants at end of six months. The current one advises her patients to stay on Coumadin forever (but doesn't prescribe it). The Coumadin Clinic specialist didn't agree with the first guy, but didn't agree with the second one either and halted my Coumadin prescription about 3-4 months ago. The current hematologist thinks that the H&H levels (which the first one had no problem with - "as long as your H&H levels are no higher than 20 /60, you're fine") and she has started a series of phlebotomies to reduce my "borderline high" areas (plus I am to do very regular blood donations - which by happenstance I had been doing with extremely consistent regularity for many years... which kept levels stabilized but never reduced them....BTW, I am on HRT / TRT with 100mg if Test Cyp weekly and 1/2 mg of Arimidex twice weekly).

And the Infectious Disease / Immunologist Specialist advised that while there were one or two readings that were higher or lower than she would have liked, that everything was in range and no infectious disease or immunology problems, and referred me to a diabetes endocrinologist who advised that I was pre-diabetic (based on being overweight and three glucose / blood sugar tests, none done while fasting, and one slightly above the new range and the other two high normal... but again, not being advised for any to fast prior to testing)... his answer was to send me to his in-house, high carb, low fat, very low calorie nutritionalist - who I would see weekly for 8 weeks and then once every 4 weeks for... forever? She recommended the typical 1200 calorie very low fat (but high carb) diet - exactly the opposite of what NIH recommended. That and he did suggest an oral diabetic medication "just in case". I went there exactly three times. And these are doctors from the two top nationally renown hospitals in NE Ohio (maybe all of Ohio).

Expert:  Dr. Chip replied 2 years ago.

OK Leroy. But again, how can I help you here? The leg discoration and swelling can easily be explaine by incompetent venous valves in the veins of your legs and from the previous DVT. That alone would not be causing the aches and fatigue you mentioned

Have you had an MRI of your spine?

Customer: replied 2 years ago.

The leg discoloration in the lefty leg (the one affected later with the DVT) was present for almost 9 YEARS before the DVT. The discoloration (granted much milder) in the right leg began several months before the DVT - plus the right leg never had a DVT. How could the DVT - caused by a trauma to the one leg - cause a discoloration condition that existed for years before the DVT event plus also in a leg where there was no DVT???

So I could see the swelling / edema as being related to the DVT, but how would that be confirmed? As I related, in my last ultrasound follow-up (October 2014) - and actually also the one in March of 2014 - the ultrasound exam showed very good blood flow in the affected leg and that there were no noted obstructions in the flow. With Coumadin use for nearly two years combined with compression stockings, why would the swelling condition not have improved (maybe slightly worsened)???

I was lead to this site (which had used once before apparently) as my initial Google Search led me to this:

http://www.justanswer.com/health/6i6et-dark-skin-discoloration-lower-legs-causes.html

It seemed to me that this was a good track for the leg discoloration (via the high cortisol connection), but didn't address the edema / swelling of the one leg only, nor the fatigue, muscle aches, joint aches, mild nausea, lack of appetite, resurrected weight gain, moderate high (for some time there - though not a normal condition) blood pressure, etcetera...in fact, some symptoms resembled high cortisol (especially if you include increase in peripheral neuropathy tingling and tinnitus) but other symptoms seemed closer to low cortisol - to include a need for more sleep over last few months).

But then I never had the fatigue, muscle ache, joint ache, nausea, with the high cortisol....

Expert:  Dr. Chip replied 2 years ago.

I didn't say you had to have a previous DVT to have incompetent valves in the veing legs Leroy. But the discoloration does sound like what is caused by that.

You're trying to tie all this up into just one cause--one disorder--and I'm afraid that can't be done here.

So I will ask once more--what exactly did you hope I could tell you about all this?

Customer: replied 2 years ago.

Is that Venuos Insufficiency such as shown here?

https://en.wikipedia.org/wiki/Chronic_venous_insufficiency

Expert:  Dr. Chip replied 2 years ago.
That is what I'm talking about, yes.
Customer: replied 2 years ago.

Well, I am stumped now.

I only have demanded in the one (DVT) leg. I have no varicose veins. The discoloration in the one leg (which appeared within one week of the onset of my Pseudo Cushings, ALL of its associated symptoms came within a few days to no longer than 3 weeks) is much worse than what is shown in the picture (and always has been... but only in the front half of the LOWER leg and not up near that high - and there has never been any on the feet, below the ankle; feet are white entirely). The other leg has a fraction of that level of discoloration, again, above the ankle, below mid shin. And as I think about it, when at NIH, the research doctors there commented on while that "bringing" was not a core symptom with elevated cortisol, that it was not by any means uncommon.

How would that diagnosis be confirmed? By ultrasound that measured blood flows and comparisons of input and output?

Expert:  Dr. Chip replied 2 years ago.
Actually it would take a venogram--contrast injected in the foot and upwards into the leg veins to check the valves
Customer: replied 2 years ago.

Which would be this:

https://en.wikipedia.org/wiki/Venography

Both of my hematologists strongly were against this procedure. Aside from being very costly, they both stated that it is a highly invasive procedure, has potential for many negative reactions, and for basic DVT situations, venous insufficiency, incompetent vein valves, postthrombotic syndrome, and related that the venous ultrasonography is more than accurate for those situations.

https://en.wikipedia.org/wiki/Lower_limbs_venous_ultrasonography

My current hematologist (and these two are by far the best in the area) previously advised that she reserves the "venogram" (venography) for serious non responsive DVTs, a very serious peripheral vascular disease condition, and situations where the ultrasonography reveals a much more serious problem... (none of which she feels fits in my situation - nor did the first hematologist). In fact, neither would - absent any further symptoms even consider that option (I didn't recall its name until you mentioned it).

It was pointed out that of the 6 primary symptoms for CVI (hyperpigmentation - to invariable reach to the top of the calf and down into include the feet, phylogenetic lymphedema, varicose veins, chronic swelling of the legs and ankles, itching / burning, venous liberation), that I only have two. And both these symptoms had problems as far as they were concerned. While the left leg hyperpigmentation is quite noticeable, it has been there (with zero swelling) for almost 9 years, with the swelling coming on only with the onset of the DVT (and only on that leg that had the DVT... zero swelling on non DVT leg, which did develop some very mild hyperpigmentation - 20% color intensity, 15% area - as the DVT leg... and also hyperpigmentation prior to the DVT). Additionally, I had the impression that they did not want to butt heads with the NIH Research doctors who pretty confidently attributed that initial, very quickly developed hyperpigmentation to the then very highly elevated cortisol... and that this is not a reddish-bluish pigmentation, but more of a slightly pinkish "bronzing" pigmentation.

In fact, each hematologist has declined to order even any more ultrasonography testing as the last two such follow-up ultrasounds have showed no abnormal blood flow, no obstructive blood flow, etcetera, etcetera. And I'm not sure how you go about convincing them otherwise.

The current one indicated that she believes that the hyperpigmentation is a result of the Pseudo Cushings and that the swelling is just an edema condition that is slow in responding (one visit it is thinking about ordering me stronger compression stockings - still not done, another visit it is doing phlebotomies to reduce hemoglobin / hematocrit levels - which have started, etcetera).

In the regard of treatment, what would your thoughts be towards Intermittent Pneumatic Compression?

https://en.wikipedia.org/wiki/Intermittent_pneumatic_compression

Any hints (although without a well documented letter of medical necessity, I am not sure that the insurance company would approve a venography procedure anyway!)???

Well, if you think of anything else or get a chance to maybe run this past an endocrinologist specialist who is very familiar with hypercortisolism and can update your "internal database", let me know. I have a visit with the hematologist and my regular doctor both on (different) visits Tuesday and plan on asking for some detailed updated blood work as well as some more in-depth discussion with the hematologist.

In (temporarily closing), how about "Shamberg's Disease"? My wife's father had (unknown to me) this same type of thing from his late 50s until his death at age 82 (with edema the last 10-12 years due to water retention). My grandson - who lived with us for 3 or 4 years - says that he has a friend whose grandfather has this same visual symptom (no swelling as no DVT, etcetera)... The common denominator is that both have been diagnosed with "Shamberg's Disease"!

http://www.winonadailynews.com/news/connections/skin-discoloration-no-reason-to-worry/article_e08e176e-1d9e-11df-9dcc-001cc4c03286.html

https://en.wikipedia.org/wiki/Schamberg_disease

Just a thought, though looks like it can on my be diagnosed via a mild biopsy (which would like me being referred to a Dermatologist).

This is VG pic.

In comparison...

The hyperpigmentation on my left leg is darker, but does NOT go to ankle OR foot, nor above mid calf on left leg, and just a strip on front of shin on my right leg. Swelling on my left leg just goes down to the ankle (from bottom edge of calf). No swelling on right leg. Zero.

Expert:  Dr. Chip replied 2 years ago.
Let me opt out at this point Leroy and see if another expert can help you here. Don't respond on this page until he comes on
Customer: replied 2 years ago.

No one has come on.

What now?

I also noted a large number of errors in my texts. Unfortunately I am using a Kindle and its Auto Correct seems to rule.

Expert:  Dr. R. Bora replied 2 years ago.
Have you done a color doppler ultrasound study of the affected leg?
Customer: replied 1 year ago.

Yes.

In March 2013 when I injured my left leg (fall on treadmill twisting knee - straining ligaments, spraining ankle severely, and straining calf muscle), about 4 days went by before going to the doctor. I assumed it was just a regular workout injury and was doing RICE and ibuprofen.

When it got worse and not better I went to see my regular BWC orthopedic (as I'd had double surgery on that knee from a work injury back in the mid 1980s). He sent me to the adjacent hospital's radiology department where they did a compression ultrasonography first for a quick diagnosis and while admission authorisation was being set up followed up with a full lower limbs venous ultrasonography (with colorized full doppler effect) of both legs. I was in the hospital for 6 days (on Heprin and then also Coumadin).

I then had the full lower limbs venous ultrasonography (also with color doppler effect) done every six months thereafter (September 2013, March 2014, September 2014). In the first two follow-ups the clot was noted to be significantly reduced in size each time and at the third follow-up the clot was no longer there. The first follow-up found a very small (BB sized?) clot in the popliteal vein behind the knee.

A reexamination of the first scans also showed it, just that it had been missed due to size / location (the main clot was a "long clot", along the length of mid calf vein). A trace of the small clot was apparently still there in September 2014, but appeared to be "encapsulated" (I believe they said) and was not obstructing anything and they felt would likely be also absorbed at some point, but in any case wasn't creating any problems. As stated, by that point the main clot had been fully absorbed.

According to that last ultrasonography, the blood flow between the two legs was noted to be the same and the blood flow of the left leg was not noted to be unobstructed or constricted in any form.

Customer: replied 1 year ago.

Did reply come thru okay?