Thyroid Or Is It All "in My Head"?

[KristenS]

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.

[1desperateladysaved]

Wow! This is tough.  Have you explored other intolerances?  It sounds like your lymph system may be very busy.  I have swelling in my thighs from that.  Exercise (like your walking should help)!  Have you checked your medications for gluten?  I see now that your body made sure of that one!  I would ask for all test results and study out the meaning of them for yourself.  I use to pass out in elementary health class, but now I study a lot.

 

  I had low ferritin levels that gave me shortness of breath, so you might check that. A low normal may be a concern.   I also tend to appreciate checking many nutrient levels with a physician that can do these tests.  The low ferritin levels caused my red blood cells to be immature and misshapen; if you have a blood count, you can check for that problem.

 

Did they do a full panel thyroid including TSH, T3, T4, Reverse T3, Reverse T4, and thyroid antibodies?  My TSH appeared normal, but some other numbers were somewhat unusual.

 

Are you using supplements?

 

Fingernail ridges can indicate low nutrient levels you might look that up.  I will post a link if I can.
  I can't post the link, so I will just say the Mayo Clinic has pictures of nail problems which popped up when I googled fingernail ridges.  I hope this helps you define them.

 

IF my doctor didn't take me seriously and listen to me, I would find a new one.  One can often go in for a free consultation and try to discern if this person will try to get to the bottom of things.  If you send them all your records first, possibly you can even find one that reads them before you arrive.  I have found one of those.

 

Don't give up, Just because they can't find what is wrong doesn't mean that it isn't there.  I have had swelling in the past and it was fluid retention.  I believe a lot of mine was caused by gluten and other foods.  I still don't understand all of it, but I am 30 lbs lighter now!  I just thought I was getting fat.

 

Feel free to PM me if you have any questions.  You seem to have some similar issues.

 

Dee

[karoyse]

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