The THYROID Thread

[Christine]

Is weight gain/loss always a symptom of thyroid disorders? I've been having problems for a year now. Thought is was reflux. Then was diagnosed with biliary dyskinesia, but the docs are on the fence about having my gallbladder removed. This all started with a lump in the throat feeling last year, then pain by my shoulderblade.

Anyway, I read somewhere on another thread that leg aches is a symptom of thyroid disease. I've been having terrible leg aches for quite awhile. They feel so fatigued, like I'm getting the flu.

I haven't lost weight, nor gained. I was always underweight before having my kids, but am comfortable at the weight I'm at right now. When I do lose weight, I have a really hard time gaining it back. Always have had that problem. Plus I'm always cold. I've been that way my whole life, too.

I'm so tired of feeling like crap all the time. I just wish they'd figure out what the problem is. When I first started having problems last year, my doc ran routine blood tests. Would he have tested for this?

Weight gain is not necessarily always there. Usually that stems from long-term hypothyroidism.

You should request from your doctor a full "thyroid panel"--this will show all your levels and a thyroid antibody test.

Also, just for good measure you might want to check for iron deficiency (ask for a ferritin test).

 

[Whosemom]

OK, I'll apologize now, this is going to be long. I just want to share with people who know what its like, what has been happening with my DD8.

My sweetie has always been the most cheerful, creative, bubbly thing in the world. But slowly, she started fading right before my eyes. She stopped doing ANYTHING and packing on weight. But 1st came the "stopped doing anything". You know, it was so nebulous, I wasn't sure if I was imagining things or it was just "growing up" or what. But finally other people started asking what was wrong with her. Like her dance teacher who has had her since she was 2. This was last spring - the weight gained happened over the summer. Anyway, her birthday was in Oct. and before we went, I sent the dr a two page letter in which I outlined the fact and reasons that I was afraid she was suffering from depression. She's on alot of asthma meds too, and had started a new one in the spring,so I was angling for that to be a side effect and we could just take her off it and try something else.

So, the DH and I both went so I could go out and talk privately to the dr. He had the NERVE to say, "well, its clearly because she is overweight. Someone is teasing her about being heavy. And it is bumming her out. Not enough to treat or anything." I told him NO! She stopped doing anything first, then gained. He said "no, no, I'm sure she'll start crying some day and spill it all out. Find a time the Y isn't busy, so she won't be embarrassed by being in her suit and swim laps with her." I told him that was SOOOO not the issue. My goodness, she runs around in her leotard. Plus, she stopped doing anything and then gained. I'm talking ANYTHING. didn't play out side, didn't color, stopped her favorite creative thing (building tables from scrap wood). MIL lives next door. the other kids would say lets go to grandma's and she'd never go. on and on and on.

Anyhoo - When I wouldn't cave, he said, "I suppose we can do some tests and check her thyroid, but it will just rule it out."

THis visit was 5 days after MIL was diagnosed with a cancerous brain tumor, and was getting yanked around scheduling surgery. It was a week from hell.

So, we go get her blood test. I haven't mentioned that she is reiculously afraid of needles. Two of us held her down. (If you could see me, I'm bawlin just thinking about it). Two days later, the dr calls. He apologized profusely, and thanked me for sticking to my guns. Her TSH was 103. And he wanted an MRI to rule out tumors. Catch that? We're afraid MIL is going to die of a tumor and we are sent to check our baby for one. We just told the girlie they wanted to look in her head. didn't use the T-word.

She did not have a tumor, thank God. But that was oct 18 and we couldn't get into the endo at the children's hospital until the end of Jan!! Its crazy.
Our regular dr started her on 25mcg of the generic synthroid lexo...something. And after 4 days, I started getting my baby back!

all is going well now. so far. but this thread is scaring me to death!

And, now she is seriously overweight and touchy and I don't know how to walk that tughtrope of helping her and not hurting her feelings.

 

[Christine]

Whosemom--I'm so sorry to hear about what your DD has been through. Poor thing.

It's good to know that your working toward getting that TSH down. Once you get it stabilized that weight should drop right off. Adults have a harder time, but I think it goes very well in children.

You can get into a "tough" time getting the TSH stable, especially if her thyroid gland is not in total failure. It could still be producing *some* hormone (though I doubt much with that high of a TSH). She could have small bouts of hyperthyroidism if her thyroid produces something here and there. Hopefully nothing major, but moodiness and ravenous appetite would be something to look out for.

Please keep us posted on how she is doing.

 

[Whosemom]

Thanks Christine!
After a month on meds, her TSH dropped to 17, and after another 2 months it was down to ??? Hmmm. You know, they didn't say. When we went finally to the specialist, and she saw the 17, she said to double her dose. Then called after 2 days to say the lab work the day of our visit was better and to keep her at 25. (We had some nice behavior the week after that!)

Here's the selfcentered side of it. I feel so guilty! I spent months really getting on her about being a pain to get up in te mornings (like, last half of last school year + the beginning of this year), then come to read - not here but other places - about people losing their jobs over not being able to muster the energy to get up. That and the fact that when I started looking at hypothyroid symptoms I just go "yep, yep, yep." If I had mentioned all those little things, would the dr have caught it? Could she have suffered less? We are a really frugal aldi-shoppin' kind of family, but we've been buying her $9 a bar shea butter soap for 3 winters because her skin gets so dry. So, how long has this been going on? Do thyroids slowly stop working? The weight thing definitely took off this past summer. The kids were watching last springs dance recital tape, and I thought it was a couple years old because she was so much smaller.

I just keep trying to tell myself I'm not a dr and there's no way I could have known.

Then there's the "NO FAIR!!" part. Like anything is supposed to be fair. LOL at me. Searching for info on this whole thing, its supposed to happen to 30+ yo. Or babies born with a problem. Not 8yo's! This poor kid has cough-varient asthma, which took a year to diagnose. Its not a "turn blue and race to the hospital" kind of thing, but when she's having a bad stretch, it takes weeks to get under control. And she's at the stage where it embarrasses her more than anything. She has a row of medicine to take every day that rivals an old person. And THAT ticks her off. On top of that, if we pass something around, she always gets the worst of it. For instance, a tummy bug just made its rounds. Big sis had 2 bouts of sitting on the pot one evening. Lil Bro threw up once. For her turn, sje threw up every 20 minutes for like 2 hours, and maybe hourly after that for another 4. sigh.

 

[Christine]

Please don't beat yourself up over this.

It is hard enough for an adult to get diagnosed. It is very rare to see thyroid failure in a child so it wouldn't surprise me that even your doctor would have passed it off for awhile. Maybe 30 years ago, he would not have. But with all the overweight children these days, it is hard for them not to just look at that aspect of it.

Did you doctor determine what the cause is? I think most cases of thyroid failure are due to Hashimoto's Thyroiditis, which is an autoimmune disorder. It might be important to know if this was the cause because having one autoimmune disorder means you can be at risk for others. Also, if having hypothyroidism can make everything else you get worse. Including her asthma and any colds/viruses/flu you might pick up. So this could explain why she suffers so much worse than your other children.

I understand how you feel, believe me! I've got one child who has NOTHING wrong with her, while my youngest as severe asthma, peanut allergy, egg allergy, environmental allergies, etc. Colds hit him harder than anyone else and he's always got something going on.

I apologize in advance if I don't get back to this thread. In 45 minutes I am leaving to catch a plane to WDW!!!

 

[angel*lady]

I just found this thread and don't have time to read much right now. I wanted to subscribe so I don't lose it. I'll be back in a few days to catch up on the reading. Oh, and I am hypothyroid!

 

[claudia]

Whosemom, please don't beat yourself up about this. I think you are a wonderful mom when you didn't back down when the doctor was poo-pooing your concerns. There is NO way you could have known what was happening to her.
The thyroid thing could have been long coming, hence, the dry skin. How would you know??? Who would think of this in an 8 year old child. But, the fact is you DID something about it and now she is receiving treatment for it. If she is to feel well on her meds at this point, the docs should be looking to get her TSH to 1. Also, they need to find the cause of this...as Christine mention, the Hashi's may very well be the problem. When you find out the cause, you will all feel better about this and will get a treatment plan into place and even though it may take a bit of time to get her meds accurate for her, she WILL feel better. Also, when she is no longer hypo more than likely the weight will just fall off of her and she will arrive at her previous weight....for 2 reasons, her metablolisim will be functioning at a "normal" level and she will feel well and want to be active.
About the "fair" part of illness....everyone is different, we all experience illness differently. That's just who she is and she shouldn't compare herself to any siblings. I have 3 children and each one will get through the cold or flu very differently. One has ADD, one suffers with depression and anxiety and one hasvery severe tree allergies..Just let her know that her body deals with illness it's own way and that it is ok.
Please keep us updated on her. I am a thyroid cancer survivor and have been hypo and hyper. It took several months for the docs to get my meds correct and it is a constant process to keep them that way. The best thing now is that the docs are aware of what is going on, so you will not have to fight anymore to help your daughter.

 

[Whosemom]

thanks claudia (and christine, even if you are having more fun than me )

I know, but you know how mommies are

 

[Moosysmom]

Found this thread by accident and wanted to subscribe
Me, I'm hypothyroid. When I moved to Florida 3 1/2 years ago, the first doctor I saw thought something was wrong with my thyroid, but I was losing weight so I didn't think so, turns out I have had a thyroid problem for many years and was never tested or treated. I was doing ok until I goofed up my neck and needed prednisone--I'm one of the 1 in a that it goofed up my thyroid. Finally got the dosage right, but then I switched jobs, and had to find a new doctor--I was talking to a co-worker who had her thyroid removed, and I finally felt better--Most of my symptoms were my thyroid, she told me about a book which I've read "living well with hypothyroidims", and I'm guessing that this has been a problem for a very very long time. Now, I'm having a test on my gallbladder tomorrow, with a promise to my doctor that if I have any more stomach pain to report to the hospital immediately, and I'm now a type 2 diabetic. All because I was never tested for my thyroid years ago. I am finally feeling a bit better, joined a gym and am working out 3 days a week, but this just makes me mad. I've got my whole family being tested because this can be hereditary. Oh well, sorry I vented, just nice to know there are other's out there too. Thanks for listening.

 

[LOLA2]

I did not read through this whole thead so please bear with me. About 10 years ago my obgyn would say your thyroid feels really big and tell me to get checked out by my doctor. Well my doctor said it felt large to her also.
For 5 years they said this at every visit until after my second child was born, they finally said we should get an ultrasound done. So I got it done and everything came back normal next 4 years same thing, your thyroid feels large. Once again they want me to get an ultrasound. So I do and the result are I have many nodules some are getting bigger since last ultrasound but nothing they think is cancer. Said I should recheck in 5 years again. I started complaining at this point because I have gained so much weight and throid disorders run in my family. A little backround on me. My uncle has graves disease lost tons of weight and eyes buldged was put on medication to fix problem. My mom had hoshimotos (SP). They put her on meds also.
Now all my life I have weighed a toothpick. I was 5'2 and 102 pound before I became pregnant with first child. Gained 60 pounds lost 30. Then on to second child gained 60 pounds lost 20. So after both my kids weighed about 170. In the last year I have been steadily gaining weight and now am up to 194. This all on a person who never gained an ounce in high school. I can see over the years gaining a little weight, but come on. Something has had to happen in my body that my metabolism is not burning right. I am also iron deficiant they say I gave a low blood count , and thay put me on an iron supplement. I have horrible night sweats waking up soaked. I had horrible heavy periods for the last 5 years (never did in high school) so bad that since I am low iron they put me on BC last year to make my periods lighter.
This has worked.

They have done blood tests to test for thyroid problems and have not found anything. Are they misdiagnosing me or is there really nothing wrong with me? I feel like my body has changed so much and I don't know why.

 

[Christine]

They have done blood tests to test for thyroid problems and have not found anything. Are they misdiagnosing me or is there really nothing wrong with me? I feel like my body has changed so much and I don't know why.

It would be hard to say without knowing exactly what thyroid tests they have done on you. Usually having a TSH is not enough. You need to have T3 and T4 checked. Also with your family history of thyroid autoimmune disorders, you need to have a thyroid antibodies test. If all that is normal (and not borderline normal), and you have that done a couple of times and it is normal, then you can be pretty sure it isn't your thyroid.

Many of the symptoms you describe happen to people without thyroid issues.

I know I was 5'7" in high school and weighed 100 lbs. By the time I was in my mid-20s (and no children) I had put on 30 lbs. I think some of us, when younger, just run a high metabolism and it is natural for it to slow down. Couple that with having some children and retaining some pounds from that and it doesn't ALWAYS equal a thyroid problem.

Your iron deficiency (I have this too) can give you lots of problems and odd symptoms.

I guess my advice would be to go to an endocrinologist and have them run the proper thyroid tests a few times (to rule out thyroiditis).

 

[Whosemom]

Hello anti-thyroid buddies. I have to say, I wish it was me instead of my kid. Then I could say, "man, I need to do something different." The kid denies any connection, but has had 3 really bad mornings. From outside the affected body, I say "hmmm, is this a wacky level or a lazy kid?" I'm afraid she learned some bad habits. So, even though I'm not sure, I"m trying some behavior mod stuff. (rewards and punishments based on a.m. behavior)

How's everyone else holding out these days?

 

[Christine]

How's everyone else holding out these days?

Doing good with a TSH of .70. Wish I could get my iron levels up though!

 

[Whosemom]

What's up with your iron? We need energy!!

 

[Christine]

What's up with your iron? We need energy!!

I wish I knew???

 

[Whosemom]

Well, go out and lick a rusty post or something. wouldn't it be nice if it were that easy?

 

[Whosemom]

We had sweatpea's 4 month check up today. Her TSH was up to 6.43, and her T4 is holding around 1.2. So they raised her dose from 25 to 37.5 micrograms.

She did gain 2 pounds since a drs appt 3 weeks ago. I was dissappointed by that. I've been working to change her diet and keep her moving, but its not doing any good.

We saw the nurse practitioner instead of the doctor today. Why is it that they can be so much more personable and helpful than doctors? I'm sure their schedules are just as packed.

 

[hercamore]

Christine,

I have also just been diagnosed as being anemic. Why, since I'm menopausal. I am so confused. I eat well, cerreal is fortified with iron supposedly.

Diagnosed with Hashimoto's 3 years ago.

Now I've got to worry about iron tablets interfering with my Syntyroid.

herc.

 

[djblu883]

You may be a blessing to me! I have been living with hypo for over a decade and going up and down...with my job I've had little luck with getting it in balance( I travel for work) and I actually had a doc tell me once "I think you have cancer" then no one contacted me. After 2 weeks I called and demanded my results be sent to me so I could have them read elsewhere only to find out it was once again... my thyroid!!! I've finally found a doctor who demands I be tested regularly and after todays test they called and said instead of every 2 months he wants me to be tested once a month so we can get it under control!and no more generics!!! I have been so sick and depressed...overweight despite my constant dieting and I work sooooooo very physically hard that I should be skin and bones instead of lard...I told one doctor my eating habits and he actually had the nerve to roll his eyes as if I was lying!! Needless to say I didn't go back to him...thanks for beginning this thread and my prayers are with all of you!!!

 

[rpbert1]

I have ,had Radio Iodine treatment about 2 years ago, everything has been fine , but over the last couple of days my Thyroid glan on the left hand side has been sore to touch, anyone have this experience. Do not want to run to the doctor for something so minor , anyone give me advice