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karoyse

Member Since 05 Oct 2012
Offline Last Active Oct 13 2014 06:35 AM
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#932375 Thyroid Or Is It All "in My Head"?

Posted by karoyse on 09 October 2014 - 09:45 AM

Diagnosed Celiac by biopsy 1.5 years ago. After diagnosis & gluten free diet my body started to go haywire. Everyone chalked it up to my gut was healing, and that it was a good sign. Just wait it out they said. It will get better they said...

Then things didnt get better. Everything has persisted, and some things have gotten worse.

 

Symptoms:

Weight gain (going from 140lbs to 170lbs. 31 year old female, 5'10") Controlled diet, under 1300 calories a day. Active city dweller without a car. Walk 10-15km/day. Minimal processed foods.  No cross contamination (believe me, I know, I will vomit profusely with a spec of gluten.)

Swelling of hands and feet (and sometimes face)

Extreme lethargy, especially in the legs (having trouble going up stairs & lifting feet)

Acne

Ridges on my nails

Anxiety (which fluctuates)

Perodic night sweats

 

I have persisted with my doctors, and was told last week that my thyroid levels were within the normal range, and that the only thing they could do to help me was put me on antidepressants if I wanted. I obviously dont want antidepressants as I dont think I'm depressed. I have a big problem voicing myself in doctors appointments, and often will end up in tears. I dont think thats helping them take me seriously. I feel overwhelmed. I am at the end of my rope right now. The only other tests they scheduled me for are a heart echo and a lung xray (they wanted to make sure my lethargy/shortless of breath wasnt heart/lung related.)

 

I had previously had IV iron infusions, and I get a monthly B12 shot.They say my iron is good enough right now. My doctors do not tell me any of my test info or levels. So I have no idea what they are.

It took them 3 years to diagnose me Celiac as my only symptoms prior to diagnosis were malnutrition and anemia.

 

Has anyone ever experienced anything like this? Any suggestions on how to get them to take me seriously? Everything I google comes up thyroid.

Khristens

I have been going though almost the same problems. I am 56 and got DX with celiac's two years ago. For the last 3-4 years my health has went down hill. I had my thyroid remove when I was just 13  years old so I know when the meds aren't right . I have been trying to get my family doctor to listen to me . She kept saying my thyroid test said my levels were too high the last two years. She took me from 200 mcg to 150 mcg. I have been feeling just like you .  Plus I have gained 50 pounds. Finally I asked her to send me to someone who specializes in thyroid problems. She didn't like it but I finally got her to send me to a Cardiometabolic Specialist last week.  I found my answer. He really knew what he  was talking about. My family DR didn't know how to read my test. He said a lot of MD's don't know how difficult it is when you are dealing with other autoimmune disease's. to get the thyroid levels right. He said she should have uping my Synthyroid unstead of lowering it.

So if I were you I would  see if you can find a Cardiometabolis Specialist because they deal with how the whole body work together. He answered my questions other Drs. just blew off because they really don't understand how the thyroid works.

I wish you luck because I get what you have been going though. It makes you crazy trying to figure out whats happening to you when the people who you go to don't listen or really understand.

NO One really understand unless they have these problems. So keep trying to find someone who can help you. It really has messed with my life at times I felt like the walking dead. I am ready to start living again.

Best of luck

Kim


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#831414 Invisible Disease: You Look Healthy

Posted by karoyse on 22 October 2012 - 05:36 AM

I know exactly what you mean. I just got DX but for the last two years i have felt like the walking dead and most people just don't understand it isn't by choice that I feel this way.
I feel bad when I am in so much pain I can't get down on the floor and play with my grandkids. My husband was really getting mad at me until I got DX with Celiac's but now I think he starting to try and understand. He has just retired and is full of energy and life. He wants to go out danceing like we used to but I just am not up to it. I was always very active until this.
I am a Custodian at an elementary school with 500 kids. Its a hard job even when you feel good. It's all I can do somedays to just get my job done. I keep wondering how much longer I will be able to work.I know people are wondering why I am not the same person I used to be.
I am praying going gluten free will help. Since people can't see what is happening to us they just don't understand. Until I found out about Celiac's I really wondered what was happening to me and I had heard about Celiac's before this. Why isn't there more awareness?? I had heard on people not eating gluten but really didn't understand why. Now I do !!
Hope for better health
Kim
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#831085 Barretts Esophagus And Acid Reflux Meds Causing Severe Mucle Pain

Posted by karoyse on 20 October 2012 - 05:01 AM


Hi I just got DX with Celic's, Barrett's esophagus, Hiatal hernia and Gert on October 1. This was a surprise because I went to the Dr because I had a cough and a little stomach pain. ( long story made short) The Dx has helped me finally figure out why I have been feeling so bad. I thought most of it was just going though Menopause. Plus not having a thyroid has make my health problems crazy over the years.This DX has answered a lot of the puzzle pieces of my family's health problems
My Mother died exactly 3 years to the date of my Dx. She had colon cancer as did my Grandmother and Uncle.
This is all very over wheming on top of the fact the medicines the Doctor gave me cause severe muscle weakness and pain. When I talked to the Doctor and Pharmacist they both look at me like I'm crazy and say they should not do that but I have stopped them and the muscle pain goes away. I have tried several over the counter and prescriptions for acid reflux. They all cause muscle aches some faster then others. I know Celiac's can cause some muscle pain too which I think is part of the problem because for year's my legs will ache if I over do it or take certian meds.
Does anyone have this problem? Should I just stop taking the med's? They really make me feel awful and I have a very physical job and
somedays I wonder how I can keep going.
I have read a lot of the post in these forums and they have been a great help with a lot of my questions for Celiac's. I have had a lot of health problems over the years and wonder what in the world was wrong with me. I think I have had Celiac's all my life but in the last year it has really kicked in. I feel after reading these forums a least I'm not alone. ( I wouldn't wish this one anyone but I know now all my aches and pains weren't in my head like some people make you feel) Thanks Kim
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