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karoyse

Member Since 05 Oct 2012
Offline Last Active Oct 13 2014 06:35 AM
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Posts I've Made

In Topic: Thyroid Or Is It All "in My Head"?

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


In Topic: Hormones, Hashi's And Celiac- How Does This All Work Together?

09 October 2014 - 05:48 AM

Hi Kim and welcome...

 

The thyroid issues are such a pain!  If the thyroid is working well, all is good...if it's not, it's a nightmare.  I've been having this weird tingling in my feel and fingers the past 3 days and I'm wondering if it's related to the thyroid.  Too much med?  Not enough?  I don't know.  I'd love to get this thing nice and stable!

 

As far as generic or name brand.  I'm not sure on that.  When I was first diagnosed I was put on Synthroid, but it gave me heart palps...not good.  I was switched to Levoxyl and did well on it.  Then there was a production issue with Levoxyl and I was switched to generic.  I've heard that Levoxyl is back and it's gluten free...I'm thinking I will ask my endo about switching to that when I see him at the end of the month.  See if that helps somehow.  A friend who has Hashi's says that she can only do the name brand.

 

I really hope that you start feeling better...always get a copy of your results so that you can see what your levels are.  I never did that until recently and I wonder where my #'s have been when all my old GP used to do was have the nurse call and say your #'s are fine.

Thanks Icelandgirl,

   I have been having that tingling too so it might be your meds aren't strong enough. I just amazes me just how many things can get messed up when you thyroid medicine isn't working right.

The worse part is family and friends just don't get it.  When you feel the walking dead its really hard to do and be the person you want to be or they want you to be. My husband is full of life and is 2 years older then me. When  I was DX with celiac's two years and my thyroid meds haven't been right I know I haven't been the same. Like I said I wouldn't wish this on my worst enemy but it might help to get a litte understanding if some of my family could be in my shoes for a while just to see I'm dealing with.

 I guess thats why this post caught my attention seems like most of you have been dealing with it. I guess what I'm saying it nice to not feel all alone and I'm not the only person going though all this.

I  felt like the weight of world lifted off me when my new Dr. told me what was really happening. Same with finding out I had Celiac's 2 years ago. . I had been to so many different Kinds of Drs . before I finally went to a gastroenterologist. because I was having trouble breathing and sleeping at night because of GERD. My husband was getting upset with me . I told him I need to find out what was happening to me to make me feel so bad. If he didn't believe me  to make sure they do an autopsy on me when I died then he will see something was really wrong with me. I had him go with me to find out the results of my 4 different scope. Not that I wanted what I found out but it least I got some answer's and so did my husband. I have Barrett esophagus ,Hiatal hernia, Gerd  Celiac's . Plus menopause hell. Then my family Doctors lowers my Thyroid Meds when they should be raised.  OMG

I had no idea what Celiac's was. Boy was I overwhelmed. 2  years later I think I have my Celiac's under control .It just my family likes to eat out a lot, They really think I am being a pain when I ask  question's  from the waiter or don't want to go with them because I know the

place they want to go doesn't have any Idea what Gluten is .

Now the new Dr say I might also have Hashimotos too . What is that and can I have that if my whole thyroid was removed? .Another Dr. told me I had Fibro now this Dr. doesn't think I do.

Sorry if I sound angry but I guess I am . I just want to feel good again. I kept thinking it was all just old age but I see other people older than me and they are getting along a lot better than me.

This has been a crazy few years and I feel like maybe now I have some Idea what I dealing with. I can get back to enjoying life more.

Thanks for posting the info . it has helped me a lot.

Kim


In Topic: Hormones, Hashi's And Celiac- How Does This All Work Together?

08 October 2014 - 10:58 AM

Hi, Just have been reading al the info on this post and this is the first time I have ever posted anything .  I have been having alot of the same problems you have been posting about and my Dr. kept telling my thyroid levels were fine. I felt awful so finally she sent me to a endo Dr. It was like I finally found someone who understood..He said she read the test wrong and she should have raised my synthyriod to 175 mcg in stead she lowered it the last two years. I am so  mad at her for letting me feel like this. He took the time to explain everything to me. I really hope things get better soon.

What i wanted to ask is have any of you had problems taking the generic synthyroid?  It doesn't work for me and i have been taking brand name for 28 years.

Thanks for all the info. It is nice to know there are other who understand all the problems Celiac Thyroid and menopause cand cause. Though I wouldn't wish this on my worst enemy.

Kim