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TrishP937 05-01-2014 10:14 AM

Dr is too busy to help me
I have been having circulation problems for over a year in my legs. I was diagnosed with Chronic Venous Insufficiency with Inflammation. I wore the stockings and also had the ELVT procedure done. Since the procedure my legs hurt even more, they burn, sting, swell and even turn bright reddish purple at times and mainly when I sit. The right one more so than the left. A few days ago I had an ultrasound done on my knee to lower legs to look for DVT and also a tsh and free T4 to test for thyroid. These tests came back "Normal".
My TSH range (0.510-6.270 ulU/mL was 1.752
T4,Free (0.89-1.76 ng/dl) was 0.91
and of course the ultrasound being normal throws me off. I would expect higher up the leg to diagnose since the pain and discoloration is more intense upon sitting.
Just a little added info...I had a partial hysterectomy last Sept. I had a very enlarged uterus with a tennis ball size fibroid on the top that gave me many issues. I carried on with all the issues waiting a year for surgery. While waiting for the surgery I developed major swelling and discomfort in my legs and the rest of my body bloated also. The leg swelling was diagnosed and the Venous Inssuff.
Ok so here is my issue. I have been very tired for quite a while now. Since before my hysto. Upon diagnosis and that year before. I had put on about 40lbs. Due to a huge decrease in activity I am sure. I have always had problems maintaining a lower weight since my 30's. I am now 43. I know at least 10lbs of my weight is water/fluid retention. I can lose these 10lbs in 2 days by doing nothing...cold baths maybe. I also have the dark circles under my eyes and my hair is very dry and requires intense conditioner. My fingernails are paper thin although they look normal enough although half of them grow downward. My toe nails are very brittle and even crack in half down the middle sometimes. They have many lines sad to say. This has been for the last 3 1/2 years. They used to look perfect. I have a very low body temp. Most of the time it is 97.2. Mornings is somewhat the same and sometimes can be as low as 97.0.
For the past 2-3 months I have also now experienced swelling in my arms that are constantly breaking out into a rash and heat intensifies it and my fingers become unbendable.
My Dr can not seem to figure out why I am still swelling to this extent and I have been told for a long time to have my thyroid tested. I do have a brother and 2 aunts on my mothers side that have a thyroid condition. So my thyroid is a huge concern, so I have had my TSH tested twice this year. So my question is...Is all of this related? Could it be DVT in my thighs...could the tests be wrong about my thyroid since my T4 is almost on the lowest end of the range, or are we off and totally missing something? My dr is about to write me off. I need help, and I do not know where else to go.

VeeJ 05-07-2014 02:18 AM

Re: Dr is too busy to help me
Hi & welcome. I'm glad you found us. I'm sorry for your problems & frustration. Have your doctors ever run the ANA (antinuclear antibody test), plus add'l tests for specific "ANA subtypes"? Or suggested that you see a rheumatologist (they're more knowledgeable about evaluating for the AI's)? Here are several reasons:

Lupus (for one) can cause a wide range of problems, including antibodies to phospholipids, which can cause DVT's. Lupus can also cause skin rashes. Have you seen a dermatologist? Also, if you'd like to describe your rashes in more detail, we're all ears! (BTW, you could go to the lupus board & read the "sticky posts" = permanent info posts, for basic info on tests, symptoms, the various rashes, etc. You'll find the stickies right above the user threads.)

Vasculitis (AI inflammation of blood vessels) might also be in the ballpark...?

As for hypothyroidism, as I understand it, the trajectory can be slow. I think doctors look at three areas: thyroid antibodies, T3 and T4, and TSH. Problem is, they don't necessarily go bad simultaneously, so it can be long wait for confirmation. Have you tested positive for thyroid antibodies? But because thyroid issues can co-exist with other auto-immunes, it makes sense to me to look at EVERYTHING, not just thyroid (which is why I asked about a rheumatologist).

As for water retention & swelling, has your doctor ruled out kidney issues? Have all your urinalysis been normal? BUN and creatinine on your blood labs?

Also, I recommend getting copies of all labs. (Feel free to share.) I hope others add more & that you post again soon. Sending warm wishes, Vee

P.S. It took me years to get diagnosed with a less-common presentation of lupus. I was the proverbial "square peg". I had photosensitive rashes, a truly huge clue, but never the best-known ones (malar and discoid). My local doctors were positively medieval in their knowledge...

ladybud 05-07-2014 07:57 AM

Re: Dr is too busy to help me
Ditto to everything Vee said. I will try to add without reiterating. Swelling can be caused by venous insufficiency, caused most likely from your previous DVT's. But low thyroid can also cause swelling in the feet and legs especially noticeable over the shins. If you press for a few seconds (one finger) on the shin, it will leave a dent when you let go. With your T4 so low, you need to have 2 more tests: a free T3 and thyroid antibodies, anti-TG and anti-TPO. If either are +, your thyroid is being destroyed and will only get worse with time. It causes the low body temp, fatigue, dry hair and nails, and weight gain. Your red/purple discoloration may be Raynaud's, a vascular spasm seen in lupus and other autoimmune disorders. Or it may be hemosiderin deposits in the skin from the venous insufficiency. Either way, if it is intermittent, like Raynaud's is, I would take a picture of it to show your Dr. Hashimoto's thyroiditis is the name of the autoimmune thyroid destruction I suspect you might have. You may have better luck with an endocrinologist, unless your Dr will run tests that YOU ask for, like the above list, here and those Vee suggested. The anti-phospholipid (anticardiolipin) tests are really important to see if that is why you have had DVT's. 30% of lupus patients have anti-phospholipid syndrome (APS), that causes blood clots, not just DVT's but strokes and heart attacks as well, so knowing and prevention is crucial. An ANA blood test should absolutely be done. An RNP test is for Mixed Connective Tissue Disease (MCTD) and causes swelling in hands/fingers. Are your fingers are unbendable because of pain and joint stiffness or swelling or all 3? Either way, those tests will help with that. Low serum proteins, sometimes from protein loss in urine in lupus, will cause swelling too, so serum proteins, a urine to check for protein loss and other signs, and a BUN/creatinine on serum are essential for kidney assessment. So I would start by discussing your new knowledge/thoughts about what is wrong, make a list of all these tests suggested, plus a CBC, and see if your Dr. will cooperate in running them or refer you to an endo and rheumatologist. I hope that helps and you get somewhere. You truly do have something wrong, and it needs further investigation before things get worse for you! Hoping for the best!

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