Hypothyroid/goiter

[zaksmom]

Just wondering if anyone has suggestions or have had the same issues.  I am a 35 yr old female.  I've had problems for the past 10 years with weight gain, and massive edema in my legs and feet.  All lab work comes out "normal".  I have a thyroid goiter with nodules on both sides, more on rt than on lt.  I have recently been sent to an endocrinologist - now diagnosed as "impaired glucose tolerance" and given glucophage to manage that, but all thyroid tests are "within normal range".  I have all of the symptoms of hashimoto's (which is driving me absolutely crazy - especially when everything is considered normal), but no lab works to prove it (other than goiter which constantly feels like someone has their hand around my neck).  I've been told that the edema is unrelated to either issue, yet no one can determine the issue.  At times it is at 4+ pitting edema (very very large indent if you push on my leg or foot) - also have had the fluid get infected.  I work out every day (walking 30-40 minutes after work, walk 15 minutes twice a day during breaks at work - very active with yardwork, housework, family, etc), eat a healthy diet.  Need to lose about 20-25 pounds, but it won't budge.  

Have any of you experienced edema?  due to thyroid?  Right now I'm experiencing a thyroiditis flare up - that I'm sure of.  Why don't the labs show?  Any thoughts?  It is so aggravating when you feel like no dr. believe's you because the labs show you're "normal".  I am 100% positive that for me, it is thyroid or pituitary related.  I am short (which is fine), but have extremely small hands and feet (wear size 3 childrens shoe).  I am proportioned - so it doesn't look out of place unless you look closely.

[redhed87]

I was reading you post and I have a co-worker that struggles with many autoimmune disorders, lupus  being the main one.  She told me the reason her lupus and other problems were found was she had a large, cold thyroid nodule with normal bloodwork.   She had a partial and then her rheumatologist found her other issues. She's now on thyroid meds along with many others.  Just a thought......

[Jenipeni]

I know you'd think at 35 you are too young to have heart problems BUT just to be sure I'd really like you to have a heart health check up PRONTO!!!  Why not check out your kidneys and liver too while they're at it...if nothing shows up then you can have peace of mind about those departments!   Pitting edema is pretty worrisome especially in someone your age.  Please see your doctor and get checked out.  

[zaksmom]

Thanks for your responses.  I am scheduled for another thryoid ultrasound tomorrow to monitor the nodules -- I'm just so tired of feeling crappy.

As far as other testing - I've been thru it all!  I've been given diuretics for about 10 yrs. now for the edema (which only mildly helps, but I'm too nervous to up the dosing too much as I've read many articles that diuretics can actually damage your kidneys more than help with swelling - forcing them to work is too hard).  I've had numerous heart/kidney/liver/circulatory tests - as well as rhumatoid arthritis dr., lupus dr. - which would be the most obvious cause of the edema -- but healthy as a horse!  Which, I'm glad of, but it actually makes the edema that much worse on a person emotionally - especially when I am too young to have these issues.  I've actually had dr.'s tell me that I swell like an 80 yr old lady with congestive heart failure -- or like a woman who's lymph system is taxed from breast cancer problems (no, no problems like that).   I just wish that someone could figure it out!  That is why I was referred to the endo. in January 2007 - more or less a last straw to try to figure it out to see if there was something that my normal dr. was missing in the lab work, or some sort of lymphatic system issue going on.  That is when they first found the nodules and goiter (which I had been complaining about the pressure swallowing for quite some time now -- surprise suprise, I was right).  

feeling like a medical mystery.....
Becky

[zaksmom]

Yes, endo. actually suggested lymphatic drainage massage.  I went to the first appointment for them to basically decide if they felt I needed it.  I was very unimpressed.  The dr. kept stating that I should be more physically active - he did not believe me on how much I work out (holy **** if I did any more I'd never get any rest!!!).  Then when the physical therapist came in, she looked at my legs and said "oh, about a +1 pitting edema, not bad enough to really be an issue".  Mind you, this was at 7:00 a.m. - I'm always about a +1 in the morning, by mid to end of day is +4!  They did not "refuse" to treat me, just made me feel like I'm some sort of hypochondriac wanting to make up medical issues for myself.  I was so discouraged when I left that I wanted nothing to do with that ever again!  I do wear compression socks/stockings regularly.  Especially when flying (I have to travel for work on occasion).  Maybe I'll try going to a regular massage therapist for a deep tissue massage, instead of the lymph edema clinic.

Thanks for your thoughts :)
Becky

[Jenipeni]

I'm sooooo glad you've been checked out for heart/liver/kidneys etc!!! Whew...  alarm bells went off when I read pitting edema - still no answers though, that's got to be frustrating.  I hear you when you say you're feeling like a medical mystery.

It won't be a cure or give you any anwers BUT have you ever tried deep tissue massage / lymphatic draiange massage?  My SIL who has had chronic fatigue syndrome for many years found it beneficial (she has recently been given a possible diagosis of Graves too - long story).    Just an idea to consider.
Wishing you health and wellness.

[scarlet37]

Have you had an ultrasound of your thyroid to monitor the sizes and numbers of your nodules?

  I can only speak from my own personal experience. I had nodules for about 7 years with no symptoms at all. Last year however I became so sick with all kinds of strange symptoms and no cause was found- all my labs, mri's, cat scans, etc. came back normal. my neurologist at the time said it was temporal lobe seizures and also because of the area I live in lyme disease was another possible source but found to be negative in the extensive lab testing i had 3 times.

     Anyway to make a long stopry short when they did another ultrasound they found one of the nodules grew signifigantly & several new nodules were there, basically the nodules were having a huge party and inviting freinds and my body did NOT like it. It resulted in a biopsy which showeed hurthle cells, which in turn made my endo say surgery was necessary.
    I was told by both surgeon & endo that my symptoms and troubles with my health were likely not related but this needed to be taken care of. I had surgery 12/06 and even though I am not optimized on my levoxyl yet I do feel better than before my surgery. instead of feeling crappy ALL the time now it goes in waves which will subside when I am optimized.

   So basically Yes it is possible to have normal labs with nodules. Your doctor will treat your symptoms because thyroid issues mimic many other diseases and diabetes is one of them
Hang in there and you'll find your answer. The one thing all of us are still learning is patience.
   Keep us updated on our progress.

  Best Wishes~

       Teresa