Do I Have Hypo-Thyroid????

iVillage Member
Registered: 05-18-2004
Do I Have Hypo-Thyroid????
10
Tue, 09-28-2004 - 11:29am

I'm hoping someone can point me in the right direction.


I was diagnosed with Celiac Disease 3 years ago at age 21. I had been misdiagnosed my entire life and ever since I hit puberty at age 12 I have had problems with my weight. Off course at the time we had no idea I had an autoimmune disease, everyone just thought i was depressed and exhausted from chronic infections and migraines. I was never "over"weight but always stayed on the not-so-thin...not exactly fat... but kinda chubby side. I was a tomboy, active in soccer, dance, track and even when I dieted never seemed to lose the weight... except every other year or so I'd fall extremely ill with one thing or another where I'd have horrible diahrrea, throat infections, spells of vommitting and lose tons of weight. ... but eventually the weight would come back despite all of my sports and activities.


by college i was working out everyday, playing soccer and excelling well... but ready to begin dating. torture on my self esteem, so even though I began my freshman year 5'4" and 130... I began to starve myself to one meal a day. it seemed to help a little... but only went down to 123. I went up and down between 118 and 125 throughout college, but reeeeally and literally had to starve myself.


during that time I began noticing things like behavioral changes in myself. I couldnt remember things. Studying became a struggle despite my intelligence I felt "foggy" headed and confused all the time. I would forget stupid things, especially language and vocabulary to describe things, dates and names. This proved even more difficult in job interviews when asked what company I last worked for 2 months prior and I could NOT for the life of me remember the name of the company I had interned at for 5 months or my supervisor's last name!


i can remember my 4th grade teacher's name and the brand of jeans she wore... but i cannot remember my recent supervisor's name whom mentored me for 5 months. this i couldnt understand... and it reeeeeally frustrated me. Luckily I got a job through charisma. whew.


next and slowly... i begin noticing really stupid things but blow them off. In all my pictures I looked so puffy and fat... my cheeks and face just looked really bloated, but I thought well I guess my bones are getting their final adult structure, better live with it. My fingernails kept breaking and I could literally bend them back and forth, but i associated that with my poor eating habits... same went for my hair always falling out. You could/can find clumps of hair on my bed. After being diagnosed with Celiac I thought all this was related to the disease, including the abdominal pain... constant tight lower abdominal pain all the time... and a couple years later I am noticing that my fingertips and toes are ALWAYS freezing and no matter what the temperature is in the house I am suuuuuuuuuuper cold. and if I'm not cold.... its the opposite --->I'm absolutely sweating to death. there is no happy medium where i'm just comfortable.


so go to my doctor?


i did! I went to my reg. practitioner, my neurologist and my GI. All said that my thyroid is "normal" except my GI told me that my "points" were 3 above normal, but still nothing to be "too concerned about". whatever that means. He said its supposed to be at "10" but I'm at "13"??? does that make any sense? bc he didnt explain that.


so anyhoo... been tested a few times and no one thinks there's a problem even though I'm "a little off".


aside from every other symptom, the weight issue is soooo confusing. How can my metabolism be THIS slow??? Now that I have been diagnosed with Celiac and recently with Crohn's Disease... I have been on the STRICTEST diet you can imagine... no carbs, no starches, no rice, corn, no wheat, no dairy, no canned foods, no prepackaged foods, no sodas or juices , no foods with "added sugar", no red meats... etc. Just fresh, peeled fruit, fresh or frozen veggies, most fresh meats , honey, homemade yoghurt, and extra sharp cheddar cheese. Thats it. thats all.... and if I treat myself ONCE for being pain free for a month or cannot exercise... i gain weight INSTANTLY. I recently havent been to the gym in two weeks bc of a car accident and have gained 6lbs.... I'm only 119 now, but 6lbs in a week seems significant to me and my GI doesnt seem to have a problem with this!!


what should I do?


Could it be something else????



Love Sara

iVillage Member
Registered: 05-19-2004
Tue, 09-28-2004 - 12:45pm
I would say to try and get a full thyroid test done. If you a little elevated as far as TSH (which is the most common test for thyroid) it would be wise to test your T3's and T4's. Also check for thyroid antibodies. Hypothyroid is when you are above the normal level for TSH.

Constipation, fatigue, weight gain are just a few of the symptoms you can have. Mestrual cycles will usually be disturbed also....but not always.

Good luck! I'm sure someone will be around to help you more!

April

iVillage Member
Registered: 11-09-2001
Tue, 09-28-2004 - 4:34pm
Hi Sara - welcome! I think you need to see an endocrinologist for a full panel of thyroid blood tests. I'm not certain what you mean when you said your results came back at 13 and the doctor said the normal range was 10, because the most common test for hypothyroidism is the TSH test, as April mentioned. But you need to see someone new who actually cares about whaty ou are going through. You have too many symptoms and not enough care from your doctors!! An endocrinologist would be your best choice since the thyroid is part of the endocrine system.

Most of the symptoms that you mention sound very much like hypothyroidism but there are other conditions that might share the same symptoms so it's best to rule it out or confirm it before you look at anything else. There are probably two reasons your metabolism is so slow - one is that your thyroid is underactive and the other is that you have slowed it yourself with your chronic starvation diet. It's unbelieveable how much damage that causes but most women dno't realize it and starving to lose weight seems like such an easy option. Until you want to eat again!!

I've been reading alittle bit about Celiac disease and it seems that it's absolutely critical that you stay on the diet that's outlined for you. Critical!!! Please reward yourself in other ways, not with food. That's not a good idea for anyone, really, but definitely not for you. Celiac disease is part of the larger picture of autominnune conditions of the digestive system. So the better you do with your diet, the better you will feel in the long run. I'll try to look up some info on Celiac for you later tonight if I can. My daughter needs the computer for some school work right now!!

But check on getting in to see an endo as soon as you can. I hope this helps!! Cathy :)

iVillage Member
Registered: 05-18-2004
Tue, 09-28-2004 - 5:17pm

Thanks ! Both of you ~


believe me... i know everything and anything there is to know about Celiac Disease. The diet that I I am on is called SCD diet and is VERY strict... i usually "reward" myself by eating a gluten-free cookie or something... or having some grapes or putting cream in my coffee. Most poeple dont understand that... its not "cheating"... its just called rewards bc you have to restrict from those things DAILY to stay symptom free ... after being symptom free and pain free for a month or few weeks... a "reward" will not cause damage... its just like - kinda not taking your medication that day.

iVillage Member
Registered: 11-09-2001
Tue, 09-28-2004 - 9:32pm
Well, if it turns out that you aren't hypo, then he or she would be able to do other tests to try to figure out what's going on. But your symptoms sure sound like hypothyroidism to me. If you get the test done, get the actual number of your TSH results and come back here so we can see if we can help you with it. Can you get your actual test results from your current doctor?

I'm glad to hear that you know all there is to know about your other conditions! :) Please let us know if you get your other results.

I'm sorry you've had such a hard time of things - with your miscarriage and accident. (Miscarriages can also be related to hypothyroidism.) I hope you get some answers soon. Please let us know how you're doing and what you decide. Cathy

iVillage Member
Registered: 05-18-2004
Wed, 09-29-2004 - 10:05am

I am going to keep you all updated.... and posted on the TSH test. I will demand that from my new doc... who I'm seeing on the 4th.

iVillage Member
Registered: 04-02-2003
Wed, 09-29-2004 - 12:50pm
Hi Sara...

I don't mean to but in on your conversation with Cathy...she is most definitely the resident expert here! She often blows my mind with all the stuff she knows and researches for the folks here (I wonder how she gets anything else done!).

In addition to the TSH test, you want them to check your T3 and T4 as well and try to make sure they treat those numbers as well as the TSH numbers. Now, I'm not sure of all the why's and wherefore's, but Cathy (and probably others) can tell you more!

One other thing, try not to get discouraged when the doc's seem to keep putting you off. I know it's hard and so many people here have had to deal with it. I'm lucky (I think) my doc is pretty good about listening to me and following things up with specialists if necessary. I haven't talked with him much about my hypothyroidism (even though I was diagnosed almost a year ago), but I'm due for my scheduled check in about a month and I will be reviewing stuff here and asking him LOTS of questions and asking him to provide copies of ALL my previous test results, and asking if I should see an endo and who he would recommend.

This is such a learning experience for me...the only other "chronic" conditions I have are herniated discs in my back...this thyroid stuff is a whole new ballgame!!

Mostly I just wanted to say welcome...I hope you get some answers, and keep in touch with the stuff on this board...there is ALWAYS some good information here!!!

dazed

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iVillage Member
Registered: 05-18-2004
Wed, 09-29-2004 - 1:41pm
T3's and T4's, got it! thanks!!


Love Sara

iVillage Member
Registered: 11-09-2001
Wed, 09-29-2004 - 2:40pm
Hi Sara - I'll get back to you later tonight, ok? My kids are just on the way home from school!! Cathy :)
iVillage Member
Registered: 11-09-2001
Thu, 09-30-2004 - 10:49am
Hi Sara - sorry I missed you last night! I never got back online.

The things you want to stress with your doctor on your appointment are all of your symptoms - write them down if you need to because we sometimes forget them all!! Then you want to stress the fact that BOTH of your parents are hypothyroid and the disease is, in part, hereditary. Next, that you have two other automimmune conditions and that puts you at risk, or makes it more probable, that you will have at least one or more others. And hypothyroidism is most often automimmune Hashimoto's thyroiditis.

I would stress that you want to try treatment with the lowest dose of thyroid medication possible if it turns out that your test results are "borderline" normal. Some people are very sensitive to the slightest rise in their TSH level, (which means the lowest drop in their thyroid hormone production), while others can walk around with a TSH level of 100 and feel nothing! It's important to stress, however politely, that you have been feeling badly for years and want to resolve the issues now. Some doctors are willing to treat borderline hypothyroidism or subclinical hypothyroidism as it's called. Others are not. But hopefully, you'll have a good doctor who will care about how you feel, not just how these numbers come back.

In terms of tests, ask for the full thyroid panel which will include TSH, T4, T3, and antithyroid antibodies. Get the actual number results when the nurse calls you with them!! And ask her to send you a copy of the lab report. Ask her what the "lab ranges" are for their lab. Some are .3 to 5.5. Others can go up to 8.5 and still be in the normal range. What is the newest range is .3 to 3.0 and if that's what your lab comes back with, then you know your doctor is at least on top of things!! A perfectly normal thyroid has a TSH level of 1.0 to 2.0. That's what you would shoot for in treatment. But for diagnosis, they use the lab range. Kind of strange, isn't it?? If your doctor doesn't give you a diagnosis, come back here with all your results and we'll see if we can make sense of it for you!

A good book with lots of basic info on this is Living Well With Hypothyroidism, by Mary Shomon. I would check it out before your appointment if you could! Hope all this helps. Good luck with your appointment and let us know what happens! Cathy :)

iVillage Member
Registered: 05-18-2004
Thu, 09-30-2004 - 11:03am

wow.


thanks! thats soo much information...glad i came here!


im printing these out and taking them with me. thank you all... ill let you know what happens tuesday!



Love Sara