[Wolicki]

I thank God for this site everyday! I was diagnosed Celiac 3 months ago. Shortly after starting the diet, I gained 25 pounds overnight (literally) in fluid retention. My PCP, GI and Nephrologist can't figure it out. It's been 9 weeks and I still have all the fluid.

Other problems are super slow metabolism! I've been eating about 1700 calories a day and exercising like mad, and I have gained 60 pounds! I know I needed to gain a lot (6' 0" tall female, low weight before dx 97 ), but I am still gaining almost a pound a day! I also have muscle pain, cramps in my feet, blurry vision on occassion, and hoarseness. My kidney function tests are off, but the nephro says my kidneys are fine. He ran a 24 hour urine.

My doctor ran a bunch of tests, and I am hypothyroid. My TSH was high. T3 and T4 were in the normal range. From what I have read, I have symptoms of Hashimotos Thyroiditis. I have an appointment with the Endocrinologist tomorrow, and don't want to have to fight with him about what tests to run.

My initial call to the Endo's office didn't go well. The first available appt. was December! I told the nurse about the edema, etc. She said she would try to get me on the cancellation list. I sent all my labs to the doctor, along wiht a note about the edema. I've read here and several other sites that kidney function, edema and muscle pain can alll be attirbuted to hypothyroid. The nurse called me back and said that the edema has nothing to do with the thyroid I argued some more and got an appointment.
It's tomorrow, and I am dreading trying to convince the doctor to do the antibody tests, so that he can prescribe whatever I need to fix all this stuff. Any words of wisdom from those of you who have been there? Thanks so much!

[mommida]

Hi,
Hashimoto's thyroiditis is n ot an easy diagnoses.
1. You have the initial blood test done.
2. You should have a thyroid function/ uptake test performed. This is done with some radioactive pill and a geiger counter.
3. An ultasound of the thyroid. Hashimoto's has a signature enlargement to one side of the thyroid, so the actual size, shape and texture of the thyroid is used to diagnose.

(I went through the testing about 15 years ago, some things might have changed.)

Good Luck! My thoughts and prayers are with you.

[nasalady]

Wolicki, on Oct 5 2009, 04:53 PM, said:

I thank God for this site everyday! I was diagnosed Celiac 3 months ago. Shortly after starting the diet, I gained 25 pounds overnight (literally) in fluid retention. My PCP, GI and Nephrologist can't figure it out. It's been 9 weeks and I still have all the fluid.

Other problems are super slow metabolism! I've been eating about 1700 calories a day and exercising like mad, and I have gained 60 pounds! I know I needed to gain a lot (6' 0" tall female, low weight before dx 97 ), but I am still gaining almost a pound a day! I also have muscle pain, cramps in my feet, blurry vision on occassion, and hoarseness. My kidney function tests are off, but the nephro says my kidneys are fine. He ran a 24 hour urine.

My doctor ran a bunch of tests, and I am hypothyroid. My TSH was high. T3 and T4 were in the normal range. From what I have read, I have symptoms of Hashimotos Thyroiditis. I have an appointment with the Endocrinologist tomorrow, and don't want to have to fight with him about what tests to run.

My initial call to the Endo's office didn't go well. The first available appt. was December! I told the nurse about the edema, etc. She said she would try to get me on the cancellation list. I sent all my labs to the doctor, along wiht a note about the edema. I've read here and several other sites that kidney function, edema and muscle pain can alll be attirbuted to hypothyroid. The nurse called me back and said that the edema has nothing to do with the thyroid I argued some more and got an appointment.
It's tomorrow, and I am dreading trying to convince the doctor to do the antibody tests, so that he can prescribe whatever I need to fix all this stuff. Any words of wisdom from those of you who have been there? Thanks so much!

Hashimoto's thyroiditis seems to go hand-in-hand with celiac disease. There's a lot of research to back that up; here's a link to a site where I've posted a number of papers about celiac disease and related conditions....there are 3 papers about autoimmune thyroid disorders and celiac, Volta 2001, Berti 2004, and Hadithi 2007:

http://spider.ipac.c...oanno/med_pubs/

You might want to print them out and take them to your doctor's appt. I have an annoying habit of doing that myself.

Good luck!
JoAnn

[nasalady]

Wolicki, on Oct 5 2009, 04:53 PM, said:

I thank God for this site everyday! I was diagnosed Celiac 3 months ago. Shortly after starting the diet, I gained 25 pounds overnight (literally) in fluid retention. My PCP, GI and Nephrologist can't figure it out. It's been 9 weeks and I still have all the fluid.

Another thought....have any of your doctors run a liver panel on you lately? Another condition which can be associated with celiac disease is autoimmune hepatitis (I have that too), and that seems to make me retain fluid like crazy! I certainly hope that's not the problem, but you might want to mention it to your doctor.

[Gemini]

mommida, on Oct 6 2009, 01:46 PM, said:

Hi,
Hashimoto's thyroiditis is n ot an easy diagnoses.
1. You have the initial blood test done.
2. You should have a thyroid function/ uptake test performed. This is done with some radioactive pill and a geiger counter.
3. An ultasound of the thyroid. Hashimoto's has a signature enlargement to one side of the thyroid, so the actual size, shape and texture of the thyroid is used to diagnose.

(I went through the testing about 15 years ago, some things might have changed.)

Good Luck! My thoughts and prayers are with you.

Those tests are no longer needed. The antibody tests, done with the thyroid panel, will tell a person if it is autoimmune thyroid disease. It's a simple blood test!

[K-Dawg]

Gemini, on Oct 6 2009, 11:05 AM, said:

Those tests are no longer needed. The antibody tests, done with the thyroid panel, will tell a person if it is autoimmune thyroid disease. It's a simple blood test!

Agreed. I have Graves disease and Hashimoto's. The thyroid panel and antibody tests are key. Any decent endo will automatically run these tests and will ususally also order a liver panel (ALT, ALP, AST).

Mine also regularly does a CBC and differential (due to the effect of the meds I take for graves disease) as well as creatinine and electrolytes (both related to kidney function).

[Wolicki]

Hello all,
Thanks for all the suggestions. I had my visit with the endo today. I started to explain my symptoms, and he said "none of this has anything to do with your thyroid." Just before he came in, I was reading all his charts on the wall regarding thyroid- hypo, hyper, etc. I had all of the hypo symptoms, and a TSH of 5.05 to go along with it. One symptom on HIS chart is tingling in the arms and legs. When he told me it none of my symptoms were reated to Thyroid, I told him about the tingling in my arms and legs and asked if he thought that was thyroid. He said no, because he doesn't think there is a problem. I've read over and over, in many sites that anything over a 3 is considered hypo and should be treated.
It went on and on. I had to convince him to run an antibody test, and he refused to order any vitamin or mineral levels. The only thing that has been checked since dx is B12 (525) and ferritin(11). No tests on any other B vitamins, iodine, selenium, zinc, A, E. D or K have been run. I asked him to do a more comprehensive adrenal panel- NO. I aksed about T3 T4 conversion- NO. Then he actually said that I would stop gaining weight if I stopped eating so much! (I have been on a ow carb, hi protein, low sodium diet of no more than 1600 calories a day and exercising like a dog for 2 months and still gaining. BTW I am 6 ft tall, medium frame). That's when I burst into tears, and he finally said ok, he would write me a prescription.
He wrote it for Synthroid. I explained that Synthroid is questionable re: gluten (source celiac.org). After making me feel like a total schmoe, he wrote a scrip for Levoxyl 75mcg.
So after a good, long crying jag, I got my blood tests done. Now I wait. Have any of you experienced being treated like this? I can guarantee that I was not disrespectful, did not try to tell himi how to treat me or anything like that. I just asked questions, because I think this explains a lot. I thought once I finally was dxed with Celiac, it would be smooth sailing. Gotta tell everyone, I've had it up to HERE with doctors! Thanks for letting me vent!

[nasalady]

Wolicki, on Oct 6 2009, 06:22 PM, said:

I had my visit with the endo today. I started to explain my symptoms, and he said "none of this has anything to do with your thyroid." Just before he came in, I was reading all his charts on the wall regarding thyroid- hypo, hyper, etc. I had all of the hypo symptoms, and a TSH of 5.05 to go along with it. One symptom on HIS chart is tingling in the arms and legs. When he told me it none of my symptoms were reated to Thyroid, I told him about the tingling in my arms and legs and asked if he thought that was thyroid. He said no, because he doesn't think there is a problem. I've read over and over, in many sites that anything over a 3 is considered hypo and should be treated.
It went on and on. I had to convince him to run an antibody test, and he refused to order any vitamin or mineral levels. The only thing that has been checked since dx is B12 (525) and ferritin(11). No tests on any other B vitamins, iodine, selenium, zinc, A, E. D or K have been run. I asked him to do a more comprehensive adrenal panel- NO. I aksed about T3 T4 conversion- NO. Then he actually said that I would stop gaining weight if I stopped eating so much! (I have been on a ow carb, hi protein, low sodium diet of no more than 1600 calories a day and exercising like a dog for 2 months and still gaining. BTW I am 6 ft tall, medium frame). That's when I burst into tears, and he finally said ok, he would write me a prescription.
He wrote it for Synthroid. I explained that Synthroid is questionable re: gluten (source celiac.org). After making me feel like a total schmoe, he wrote a scrip for Levoxyl 75mcg.
So after a good, long crying jag, I got my blood tests done. Now I wait. Have any of you experienced being treated like this? I can guarantee that I was not disrespectful, did not try to tell himi how to treat me or anything like that. I just asked questions, because I think this explains a lot. I thought once I finally was dxed with Celiac, it would be smooth sailing. Gotta tell everyone, I've had it up to HERE with doctors! Thanks for letting me vent!

What an incredible JERK!!

Is there anyway you can see a different doctor? Like an internal medicine person or something??

No one should have to go through anything like that just to be tested and get medication! This guy is on a power trip....it sounds like he wanted to humiliate you. I'm so so sorry you had to go through that!

Did you look at any of the medical publications I gave you the link? Here are the three that are pertinent:

http://spider.ipac.caltech.edu/staff/joann..._cd_thyroid.pdf
http://spider.ipac.caltech.edu/staff/joann...imoto's.pdf
http://spider.ipac.caltech.edu/staff/joann...s/volta2001.pdf

If you ever see that man again, print those papers out and take them with you. Tell him that you have a firm diagnosis of celiac disease and autoimmune thyroid disorders are closely related. If he disagrees, hand him the papers.

And YES, I have been treated like that before. Which is why it will never happen to me again....well, someone can be disrespectful to me once, but I won't give them a second chance. I pay several hundred dollars a month just to have the PPO insurance so I can pick and choose my own doctors. I hope you can choose your own too.....if I were you, I would immediately look for someone else, but you may not have that option.

Please don't let someone like that make you feel as though you're wrong to advocate for yourself or to try to do your own research to find out what's wrong with you!

(((hugs)))
JoAnn

[mommida]

What do you call someone who graduated at the very bottom of the class at med school?
Doctor.

Why you had to run accross this Bozo!!!? I don't know.

Cut your losses and find a real doctor. It is harder to diagnose the auto-immune related thyroid diseases. A Celiac has at least a 10% higher chance of having a auto-immune thyroid disease.

[mommida]

I think you should still do the scan of the thyroid as cancer and nodules can be present.
Remember that an auto-immune disease has the body's own immune system attacking the thyroid, and I would want to know the extent of that damage.

[Wolicki]

nasalady, on Oct 6 2009, 08:40 PM, said:

What an incredible JERK!!

Is there anyway you can see a different doctor? Like an internal medicine person or something??

No one should have to go through anything like that just to be tested and get medication! This guy is on a power trip....it sounds like he wanted to humiliate you. I'm so so sorry you had to go through that!

Did you look at any of the medical publications I gave you the link? Here are the three that are pertinent:

http://spider.ipac.caltech.edu/staff/joann..._cd_thyroid.pdf
http://spider.ipac.caltech.edu/staff/joann...imoto's.pdf
http://spider.ipac.caltech.edu/staff/joann...s/volta2001.pdf

If you ever see that man again, print those papers out and take them with you. Tell him that you have a firm diagnosis of celiac disease and autoimmune thyroid disorders are closely related. If he disagrees, hand him the papers.

And YES, I have been treated like that before. Which is why it will never happen to me again....well, someone can be disrespectful to me once, but I won't give them a second chance. I pay several hundred dollars a month just to have the PPO insurance so I can pick and choose my own doctors. I hope you can choose your own too.....if I were you, I would immediately look for someone else, but you may not have that option.

Please don't let someone like that make you feel as though you're wrong to advocate for yourself or to try to do your own research to find out what's wrong with you!

(((hugs)))
JoAnn

JoAnn,
Thank you for the hugs I spent an hour crying on my boyfriend's shoulder after the visit, but I still can use all the hugs I can get. The weird thing is that I saw this doctor before while being treated for adrenal insufficiency a few years ago.
I have an HMO, but I do have other options in Endo's. I really wish the HMO would allow me to see a naturopathic doc or an osteopath, but sadly they will not approve it. I will start my search for a new one today.
Thank you for the articles. I read them, but I will not be sharing anything with this guy ever again. It's hard enough to be sick, but to be treated this way is absolutely unacceptable.

[Wolicki]

mommida, on Oct 7 2009, 06:05 AM, said:

What do you call someone who graduated at the very bottom of the class at med school?
Doctor.

Why you had to run accross this Bozo!!!? I don't know.

Cut your losses and find a real doctor. It is harder to diagnose the auto-immune related thyroid diseases. A Celiac has at least a 10% higher chance of having a auto-immune thyroid disease.

THank you for the laughs! I am beginning my search today. I appreciate the support!

[Gemini]

mommida, on Oct 7 2009, 09:13 AM, said:

I think you should still do the scan of the thyroid as cancer and nodules can be present.
Remember that an auto-immune disease has the body's own immune system attacking the thyroid, and I would want to know the extent of that damage.

Nodules can easily be felt by any good physician. I have never had a doctor say to me that I have nodules and my current PCP is very, very thorough...if I had nodules, she wouldn't hesitate to bring it up and advocate more testing. Things may have changed but any scan of the thyroid introduces a radioactive element to the testing and that's not something I take lightly. Damage can be assessed through blood work also.

[K-Dawg]

I'm sorry you had such a terrible experience. Yes, I have been treated HORRIBLY by doctors. SO much so that when I go now I always dress in one of my work uniforms (i.e. the power suit) and I do get treated MUCH better. So I wonder if, in my case, there has been some class bias operating (maybe jeans signal that I"m on the wrong side of some supposed class border). Who Knows. All I know is I get great trt when I wear one of my suits so that's what I do. Always. A real pain in the ass.

Anyway I have also had a radiocactive iodine scan done...once...about 15 years ago. I've had an ultrasound of my thyroid also. But my endo typically relies on her physical examination. I wish you were in Toronto cuz I'd give you her name.

You can also ask to get the copies of your results from the lab. My endo will usually just write "pt to have copy of results" on the lab requisition. That way I feel better informed and in control of my own health.

Good luck. Print off that material and try to find another endo if you can. It is imporant to be monitored when you are taking thyroid pills and you shouldn't have a jerk monitoring you

Gemini, on Oct 7 2009, 06:48 AM, said:

Nodules can easily be felt by any good physician. I have never had a doctor say to me that I have nodules and my current PCP is very, very thorough...if I had nodules, she wouldn't hesitate to bring it up and advocate more testing. Things may have changed but any scan of the thyroid introduces a radioactive element to the testing and that's not something I take lightly. Damage can be assessed through blood work also.

[Wolicki]

Gemini, on Oct 7 2009, 07:48 AM, said:

Nodules can easily be felt by any good physician. I have never had a doctor say to me that I have nodules and my current PCP is very, very thorough...if I had nodules, she wouldn't hesitate to bring it up and advocate more testing. Things may have changed but any scan of the thyroid introduces a radioactive element to the testing and that's not something I take lightly. Damage can be assessed through blood work also.

Thanks Gemini.
You know, in order to feel nodules, he would have had to touch me. Yes, that's right, he never touched my throat, took my BP, nothing! I thought I would be less angry today, but not yet