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What can cause my thyroid to read "normal" with my medications one month and less than 3 weeks i gain excessive water weight, am fatigue, can't sleep, can't stay awake, to find it is low 2 months later?

By October 25, 2010 - 8:48pm
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Ok... I am so so SO desperate for answers and I hope you can help me help myself which the local dr's are failing to do where i live (i live in "hick town" oklahoma)...ok, here goes (sorry it's so long:(

*In june 2010 (about the end of june) my thyroid level (on medicine for low thyroid~forgot it was hashimoto's not just low thyroid) read that it was "normal"... about 2 1/2 weeks later I had excessive weight gain from fluid on my ankles, and feet and legs (even went to the er). About 3 weeks later I realized I was having a hard time going to sleep(i take 3 medications for it), having a hard time waking up when i do finally get to sleep, waking up constantly in the night, excessive hunger, FELL ASLEEP AT THE WHEEL (thankfully i woke with the bumps on the side of the road).

*At the end of August a new dr i saw checked my thyroid again and it read low... he increased my thyroid medicine. i took it religiously without a skip of a beat. On October 13, 2010 after stopping some medications i thought was the cause of my weight gain, i went from 315 pounds on September 23 to 340 pounds on October 13, 2010 even though i had decreased my calorie intake and my sodium intake even more than after i went to the er. I asked my dr how in the world he could say that it was not fluid that made me gain it.... he basically tells me, as did 3 other dr's that i'm fat, i'm lazy and i eat too much. (i actually lost down from over 400 pounds to 223 pounds in 2 years ~a little help from bulimia, but i think my thyroid actually reactivated itself too)

* in my researching Hashimoto's disease and what it causes if left untreated, (???or not treated correctly??) I have found that at least 2 things "fit" my symptoms of...

Excessive RAPID weight gain
Fluid Retention in legs/ankles/feet (which is not always pitting edema so this dr i see does not think it's fluid)
waking up in the night drenched in cold sweat from head to toe (even with it 65 degrees and a double fan blowing on me)
Fluid retention in the abdomen/waist/chest/arms/face
(I was over 400 pounds before, I KNOW WHAT FAT FEELS LIKE, this is not the same "feeling"... this weight that i have gained in a short amount of time does not move with me like fat does, it's a stiff full feeling within the skin and is very very disabling, i can't bend normally not even to wipe my rear end, i can hardly bend to pick something up off the floor because it feels like i am about to pop and it feels like the weight around my chest especially is being pushed into my lungs, and neck and causing me to lose my breath)
Numbness in my legs, feet, hands, arms
Increased appetite (not feeling like I have had enough to eat even though i know i have)
Missed Periods and Late periods

*Back to my weight gain...what i thought was the cause of it was stopped (3 medications were stopped at the end of august) I pointed out to my dr that I went from 263 pounds in July 2009 to around 280 pounds in June 2010. Then in August 2010 I weighed 318 pounds (even with decreasing sodium intake after going to the er) I stopped the medications thought to be the cause of weight gain and excessive hunger throughout the day, and decreased my calorie intake after that, and decreased my sodium intake further and went from 315 pounds on September 23 2010 to 340 pounds on October 13 2010. I got desperate after seeing my dr and him telling me it was not fluid; i took 3 different diuretics (only one prescribed by him) 2 times a day for 3 days and went back to him a week after seeing him and lost 12 pounds. He STILL said it was not water weight that is on me!

*How can i get a dr to take me seriously and find the real reason for my rapid weight gain and fluid retention? the two things I was going to mention were Heart Disease (which runs in my family on both sides back 2 and 3 generations) or Celiac Disease... I finally got a referral to an endocrinologist and should find out when my appointment is tomorrow.

*is there anything i should say to the endocrinologist to encourage proper treatment and diagnosis?

*Can Hashimotos that is being treated go from "normal" to low in a short period of time?

*Can Hashimoto's that is being treated cause the two suspicious diseases that I suspect?

*Can a person develop a "tolerance" to the levothyroxin or become "immune" to it and actually stop absorbing it correctly ? (it still read low even though i took my medicine that morning i got it checked on October 13, 2010)

*Does Hashimoto's cause "light headedness?" (i have been light headed all day today, dr took my bp and said it was fine but the cuff he used was really too small for my arm and on October 13, a correct fitting cuff that a hospice had they took my bp and it was actually high for me 134/96 ~i usually run around 118 to 120 unless something is physically wrong)

*does hashimoto's make you feel like your feet and hands are relentlessly cold even though you physcially feel hot or comfortable?

*does it cause your hands and feet to feel "clammy?"

*can it cause the numbness that i've been experiencing?

*excessive hunger?

*cravings for carb filled foods and sugar?

*Dry cracked heals that also swell on the bottom of my feet making it virtually impossible to even stand up?

*Dry skin on my legs that are actually looking a bit "streched" from the fluid in them. (which is also turning into the "pitting edema")

*dry skin on my arms?

*acne even though i am on doxycycline for it? (i was on minocycline for it but changed to the other because it seemed to "stop working")

Your help is GREATLY APPRECIATED! Please please please help me find the answers i am searching for
thanks so much!
(Personal e-mail address removed by EmpowHER Moderator.)

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Expert HERWriter Guide Blogger

Hi Carole - Thanks for sharing your story, and it's sad to hear how frustrating your journey to find wellness and answers has been. It's good to hear that you have a referral to an endocrinologist as that should help. The hormonal issues you're dealing with, including the late and missed periods, need expert attention.

We are not able to provide diagnostic information but are able to assist you in finding resources to help yourself.

According to About.com, there is a local support group in Oklahoma.
Oklahoma -- Shawna Casper, shawnacasper@hotmail.com, Website: http://groups.yahoo.com/group/TulsaThyroidSupport

On the national level, the American Thyroid Association provides many support services including a physician locater service: http://www.thyroid.org/

In terms of preparing for your appointment with the endocrinologist, and getting proper treatment and diagnosis, it will help to come to that appointment fully prepared in advance. No matter how good they may be, no doctor today can spend a long period of time listening to patient stories and the information needs to be organized and precise if you have a long medical history you want to have considered.

It would help to prepare a summarized timeline of your symptoms rather than providing them verbally which could take up a lot of your appointment time. The timeline would enable the doctor to see in a snapshot view the clinical symptoms you've been experiencing and that will help in the diagnosis process.

It will help you to write out your questions and learn as much as you can in advance of your meeting through sources like the American Thyroid Association and the Hormone Foundation http://www.hormone.org/public/endocrinologist.cfm

The endocrinologist will be interested in your symptoms, medications and supplements, prior test results, what seems to help or worsen your condition and your personal and family medical history.

Good luck to you, and let us know how your appointment goes. Pat

October 26, 2010 - 5:41pm
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