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Old 08-03-2006, 04:52 PM   #1
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KBT's mom HB User
Question Frustrated and Confused!!!

It's been a while since I have posted. I had found a great doctor that believed that there was a problem and gave my daughter thyroid meds. She took Armour and Levoxyl for approx. 8 months. Her levels were optimized with a very low TSH and a Free t4 and t3 level in the upper to top of the ranges. Unfortunatly, there were no results. She showed no signs of improvement and also no signs of hyperthyroid with a suppresed TSH. Dr. Stearns was a wonderful doc but she passed away with cancer.

We were forced to find a new doc. I finally gave up and believed the docs when they said my daughter's thyroid was fine. We have weened her off of the meds. She has been without for about 7 months. Now, she is having a lot of hypo symptoms. She has lost so much hair that she has a bald spot, she complains of being cold, and still carries a lot of extra weight. Her new doc ordered some lab work and her TSH came back at 5.24 - just below the lab range.

I don't know what to do. I know the meds do not help her, so I hate to push for them. I do know that there is something wrong though. Does anyone know what else could possibly drive her TSH up and be causing so much trouble. I'm so confused and just feel helpless at these point. As a mother I am desperate for help.

Last edited by KBT's mom; 08-03-2006 at 08:56 PM.

 
Old 08-04-2006, 10:17 PM   #2
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Re: Frustrated and Confused!!!

Don't know where you live, but the best of the best in terms of thyroid doctors is Dr. Glenn Braunstein at Cedar-Sinai Medical Center in Santa Monica California. Might be worth a call anyway. good luck PJ

 
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Old 08-05-2006, 01:24 AM   #3
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Re: Frustrated and Confused!!!

maybe your daughter would be better suited to a combination therapy like Armour or Thyrolar.The T4 meds didnt help me at all, in fact I felt much worse on them than off.

I am now on 2 grains of Armour and feeling great,
By taking her off the meds you could be leading her to serious health problems like type 2 diabetes and heart disorders. You sound like a very loving and caring mum and I know you want to do your best by her. Her TSH at 5.24 is not below the lab range, it is hypothyroid. you need to find a Dr who knows about thyroids, lab tests and ranges how to interpret them safely and who is prepared to take the time to tinker with meds to find the right one and right dose for your daughter.

best wishes
daisy xxxxx

 
Old 08-05-2006, 07:26 AM   #4
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Re: Frustrated and Confused!!!

Thanks so much, any reply is encouragment to me especially after having so many people say that "she is fine- just give it some time and she will grow out of it". After so long you start to believe them even though you really know that there is a problem. She did take Armour for quite some time. I really pushed for it hoping it was the "miracle" drug, but it didn't have any positive results. The only thing I noticed was that it seemed to make her even more cranky! The endo that we last took her to is suppose to be one of the best for our area. I guess I will wait and form my opinion about him after he sees the results. I know that he does not believe in Armour and is a big Synthroid believer so things don't look very good. I am still waiting on her antibodies and 24 hour urine cortisol test- maybe something will show there. I just worry about tumors or something like that causing the high TSH since the meds didn't seem to work the first time around.
Thanks again; your responses really mean a lot to me.

I forgot to mention I am in the Ohio, WV area.

 
Old 08-05-2006, 08:04 AM   #5
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Re: Frustrated and Confused!!!

I am so sorry for you, and your daughter! A mother suffers right along with her children!

I am in your area, and go to a wonderful Holistic MD in "Green" - just south of Akron. He has helped me so much, when other docs had me virtually bed-ridden, with a "normal" TSH. He treats based on my symptoms, as well as the numbers - but he goes mainly by the symptoms. Unfortunately, no matter at when dose I am, I still am disabled by the symptoms of overwhelming fatigue, and muscle/joint/soft tissue pain. I still have many other symptoms as well, and so my doc suggested I consider having my thyroid taken out - my antibody levels are extremely high, and I have both TPO and thyroglobulin abs.

After getting some second opinions (from mostly ENT's), I am scheduled for a complete thyroidectomy on August 21st.

I don't know about your daughter, but I know that, in my case, the thyroid meds didn't help much - but not taking them was worse!! My doc suspects it is the antibodies that are responsible for my disabling symptoms, and I am sure he is right. I pray the surgery helps me, b/c I am at a loss for any other reasons why I have been unable to function for so long.

Surgery might me an option for your daughter. I am amazed at how many people I've heard from who felt great after it, but who felt horrible before. A close friend's daughter just had 25% of her thyroid out - she's only 16 - and she feels much better. So, please don't give up!

Ora

 
Old 08-05-2006, 05:17 PM   #6
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Re: Frustrated and Confused!!!

Thanks so much Ora for your encouragment! Even though everyone here is a stranger, it helps so much to have this website because you feel like there are people who care and understand. I am anxious to get the results of her antibody test. She has been tested before a few years ago and it was fine but I guess that can change. I will keep you in my prayers Ora for your surgery to go well. I truely hope that you see a lot of improvement. It is really sad how much this little thyroid can have such a big impact on people lives. Sometimes I get really upset and feel that it is just not fair that a ten year old should have to go through this, but then I try to think that even though this is bad it could be worse.

 
Old 08-05-2006, 05:34 PM   #7
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Re: Frustrated and Confused!!!

I know that if you could, you would gladly switch places with her and have it be you instead of her. That's how my friend felt, as her daughter got sicker. THey couldn't figure out what it was for a long time, and finally found the problem (a goiter) last year. Her surgery was in April, and she is feeling wonderful. She feels so good that she realizes that she has not felt good for years, but never realized that she was sick. And this is with only 25% of her thyroid gone!!

This might not be the answer for your daughter - but it needs to be ruled out. She is so young! Way too young to be suffering so much!

I appreciate your kind thoughts and prayers for me. I first began having problems in 1986, and became disabled in the 5th month of my pregnancy, 1989. So, I've been searching for a LONG time for relief, and sense that my journey might be almost finished - I am that hopeful that the surgery will help me. I encourage you to hang in there, too, and please, let us know how those tests came out.

Blessings!

Ora

 
Old 08-05-2006, 05:42 PM   #8
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Re: Frustrated and Confused!!!

I wanted to mention, too, that in all the years I was so sick and disabled, I had a normal TSH. It ran around 1.6 to 1.7 - so no one suspected it was my thyroid that was making me so sick. When I was properly dx'd three years ago, I began taking Levoxyl, then Armour. After my hysterectomy last March, they took me off the thyroid meds for awhile. It didn't take long at all for my TSH to climb to over 4.

I mention this because I wonder if, even though you say you "weaned" her off the meds, it still might take her thyroid a longer time to "wake up" after having shut down when she was on the meds. It may be that she just needs more time.

 
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