leg pain & swelling

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I was told I was hypo several yrs age since then suffering with heaviness and pain and swelling in calves of legs also swollen feet.  I have been to over 30 dr trying to get answers.  Endos keep saying it is something else.  Told it is not a rheumatology or neurologic problem.  I have lost too many yrs of my life and now can just about walk.  Has anyone had this problem??

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  • Posted

    Sounds like you are under medicated.what was your last labs? What med are you using? How much? 
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    • Posted

      Working with a new endo right now and he is working with meds but I have had the heaviness and swelling even when the levels were supposed to be right.  One dr said I was allergic to something in them and put me on otheres then said it is not the meds ?????????????
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  • Posted

    Hello Marge:

    My name is Shelly and I am a nurse.  Swelling (Edema medical word) is a problem that can come from cardiac problems and high BP and also somtimes low thyroid.

    Have you any cardiac  (Heart) problems?   High Blood pressure is also a problem that can cause swelling in the legs.  They have diuretic's  "water pills" that can help you also.

    How about seeing a Cardiologist and getting it looked at?  How is your blood levels TSH and T4 and T3?

    Any questions just ask,  Shelly

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    • Posted

      Just got copy of lab results TSH 83.22   range 0.40-4.50  and T4 free 0.5 range 0.8-1.8 waiting for dr to call me re these results.  He had told me that t4 adn t3 were ok. I dont have a copy of those results.  I have been told that heart and blood pressure or ok.  I was on ARmour at one time and still had problems.  I have no problems with my joints, my knees can take me up and down the stairs, it is the inner calf of my leg that bothers me.  No NSAID helps, in fact it makes the swelling worse.

      Primary is totally frustrated and doesnt know what else to tell me to do. Thought new endo was better than the others but now he isnt calling me back, probably doesnt know what to do either. WHERE DO I GO FROM HERE???

      Right now I have more faith in my auto mechanic.

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    • Posted

      Yikes Marge! TSH=83.22!

      So many times TSH is irrelevent, but this isn't one of them. You need T4 immediately. Give that a month to 6 weeks then measure your T3 as well as T4 (and if possible rT3). You are severely hypothyridic. When you are measuring your T3 (in say 6 weeks), you will be determining whether or not you are successfullly converting your T4 to T3 - this is a very important process. Your T4 is not "OK" it is minimal. It doesn't surprise me that you have pains in your calf, it's a wonder you can stay awake. 

      Oh and btw, it isn't only the medication you get on, your feeling of well being is also critically dependent upon the dose. Read up as much as you can on this topic and get back to the doc ASAP - you need T4, at the moment, in any form s/he can get you.

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    • Posted

      Oh, and one other frustrating point. Many of us here have had to change doctors even more than once. It's not nice but you eventually find one who took an interest in Endocrinology at medical school. A few of us on this web site found a doc but then had to move - and we travel hundreds of miles to get an appointment (although prescriptions can be done via mail).I myself have a round trip of 400 miles to my good doc - who was my 3rd doc!

      Just thought I would offer you an answer to "Where do I go from here?"

      Sometimes a doc who is interested, although not experienced, in Endocrinology is better than a seasoned Endo. My first doc (who retired) was such a doc and fixed me up very quickly. Seasoned Endos are bound by outdated guidelines - which is why blog sites like this spring up with thousands of bloggers, people who are mis - or under medicated by docs not thinking outside the box.

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    • Posted

      Hello Marge:

      Are you sure it says TSH 83.22??? 

      Based on T4 range  you will need to be started on Thyroid replacement meds for the low level of your own hormone. 

      The aches you have are most likely in part caused by the poor thyroid hormone level. Muscle aches (severe ones ) can come from low thyroid and low Vitamin D levels.

      Please call your doctor when lab work is off like yours is, you need to call them  if they do not call you. Also some doc's wait until the end of the day to call, but you can call them too.

      I hear you loud and clear but hang in there once you are on meds, it will get better.  Many of us have been in your shoes. Let us know if you got a hold of the doc, and what is the plan here.

      XO Shelly

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  • Posted

    Hi Marge,

    Great answers from Shelly and Jean. Please post your numbers so that we can get a feel for what is going on.

    When I was undermedicated I too got pains in my joints, in fact my Endo set me to the "arthropod" who declared I had bone on bone arthritis! He wanted me to take medication for it - which I didn't.  When I finally got on the right meds (for me it was Armour, an NDT) at the right dose (that takes a little time - and much argument with your doc), all that pain went away and I can walk for miles now and ride my bike - so don't give up. This web site gave me the confidence to demand the right medication.

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