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Old 06-18-2008, 03:17 PM   #1
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Question Please does anyone have info on thyroid hormone resistance or pituitary gland tumor?

So today I get a call from my endocrinologist telling me because of my bloodwork I had done for my thyroid I have to get another blood test and an MRI to see if I have a tumor on my pituitary gland. Long story short about my thyroid...had what was thought of as an overactive thyroid since i was 8 yrs old. They found nodules on my thyroid in Sept 2006, so Dec 2006 I had had surgery to have half my thyroid gland removed because they thought it might be cancer but it wasn't...now this they think either I have a thyroid hormone resistance syndrom or a pituitary gland tumor. My TSH is normal but all my throid hormone levels are high. I only weigh 98lbs and i am 5'6 27 yrs old. I have problems sleeping, bad anxiety, feeling of faint if i dont eat all the time, lack of energy, depression, crazy pms. If anyone knows anything about thyroid hormone resistance or pituitary gland tumors please le me know.

 
Old 06-18-2008, 03:38 PM   #2
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Re: Please does anyone have info on thyroid hormone resistance or pituitary gland tum

Hi katie,

I have resistance to thyroid hormone. Finally formally diagnosed last fall. I'm 49 and have had a lot of chance to research (since 1993) and have tons and tons of information and can answer almost anything you wanna know.

Along with the mri, they should also do a TSH alpha-subunit to completely rule out a TSHoma. Those are mighty rare. RTH isn't quite as rare but there's very few of us that have actually been diagnosed. I've only run across a few in my travels thru cyberspace and most of them are children. I know of one other adult but have not been able to speak with her.

I was diagnosed by the pediatricians as a hyperactive child and after attempts at tranquilizing me, they finally tranquilized my mom. But I really didn't have a lot of physical problems with it until I was 22 when it kinda slammed me. I've been on and off thyrotoxic ever since as everyone continued to scratch their heads at the normal TSH level. Started treatment this last may and although we're still in the adjustment period, I'm feeling a lot better.

I'd love to hear about what you've been thru, what your lab levels are and whatever. It gets kinda lonely here being the resident mutant.

 
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Old 06-18-2008, 04:00 PM   #3
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Re: Please does anyone have info on thyroid hormone resistance or pituitary gland tum

Hello,

My Labs in May were
T3 total 207H range 60-181
T4 Free 1.9 H range 0.8-1.8
TSH is normal 2.25 range 0.40-4.50

I had another full lab done a couple weeks ago but i dont have a copy of it. The Dr has been communicating with me over the phone. She said she was still getting the same picture...normal TSH but everything else was high. When I was 8yrs old they put me tapazole until I was around 20yr old then they took me off it to see if i was okay without it which i was for a little while. I was seeing a different endocrinologist last yr and he acted like i was crazy that i was completely fine and wanted me to take synthroid to prevent my nodules from growing anymore. My mom had hyperthyroidism when she was about 20yrs old and went into a thyroid storm. She got radioactive iodine and now at 57yrs old she is hypothyroid. She also has nodules and one is really big. I get really bad anxiety and dizziness which they told me was just related to my stressfull life style...My Boyfriend has ful custody of his 2 kids and I am in college and work full time. I think the dizziness, anxiety, feeling faint and weighing only 98lbs is because of my thyroid. My endo told me to get the MRI of the pituitary gland and a bloodtest for the pituitary gland and if that is normal she has call a DR in Chicago to find someone in my area to do the bloodtest for the thyroid hormone resistance. She also told me if thats what is is...they can only treat symptoms is that true?...Also she said if thats what i have my mom might have that ro but just wasn't tested for it.

 
Old 06-18-2008, 04:10 PM   #4
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Re: Please does anyone have info on thyroid hormone resistance or pituitary gland tum

If she's right and you do of RTH, I promise you can and will feel a lot better. It's time for supper though so I'll be back afterwards. Gotta eat!

 
Old 06-18-2008, 05:36 PM   #5
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Re: Please does anyone have info on thyroid hormone resistance or pituitary gland tum

Hello. I am new to the boards and was reading your post with much interest.
I have an appt with an endo. next week regarding my lab results. My FT4 came back low .71 and so did my TSH .98 so I was put on levothyroxine for 30 days and just had my lab draw done and my FT4 has come up slightly but my TSH has plumeted to .61, almost 40 points in one month. I have read in several articles that if one has a low TSH as well as a low FT4 it is indicative of a pituitary problem. I have a couple of friends on another board who are telling me to just completely ignore my TSH levels, they mean nothing once one starts treatment. Is this true??? Any input would be much appreciated.
I too am afraid of something going on with my pituitary.

 
Old 06-18-2008, 05:41 PM   #6
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Re: Please does anyone have info on thyroid hormone resistance or pituitary gland tum

Hello again. I'm fed so I'm good for a little while. I've always been known as the bottomless pit. Won a pig trophy when I was 12 in a sub eating contest. You sound as skinny and boney as I was in my 20's. I'm still a little underweight right now but I'm slowly getting to my goal of 112. I'm 5'2".

The first step in the process is confirming the elevated FT4 and normal TSH to rule out lab error or interferring antibodies or things like that. Usually two or three runs of the TSH, FT4 and FT3 (not the total T3 you had run) that show the same anomoly starts the process going. The rest of the process, actually written by the guys in chicago that your endo's talking about, can be found online at [url]http://thyroidmanager.org/Chapter16/16d-frame.htm[/url] It's the most authoritative source to be found on the condition. It's highly technical but if you read thru it, you should be able to pick up little bits and pieces. Don't let the big words intimidate you. Just skim over em. It's not necessary to learn everything at once. There's a few things in english in there and what you don't understand, just ask.

The other thing you want to do is make sure that you get copies of all your labs. See if you can get your former labs too. It's easier to track your progress if you have something to refer back to.

How'd you feel on the tapazole? I went thru three years on anti-thyroid meds and to be honest, most of the time felt like total crap. It was like a trip thru hell but they kept changing doses on me cause my tsh kept skyrocketing while I stayed hyper. It drove em nuts. I was finally put on beta blockers by a gp and maintained real well for about 15 years. It got out of control again a little over 2 years ago after a case of shingles. Do you find your symptoms flare and settle some over time?

I think you're right. All those symptoms are probably from your thyroid. They sound very familiar. You wouldn't believe the number of docs who thought I was out of my mind.

It usually is an inherited condition (80%) so if you've got it, your mom probably does too if she has a thyroid disorder. The majority of patients are misdiagnosed as having graves.

Yeah, they can only treat symptoms. It's a genetic defect that cannot be fixed. However, the hardest part of the entire thing is getting a diagnosis instead of a label of being crazy or being misdiagnosed and improperly treated. Once that's done, things get a lot better. Beta blockers do wonders. I use atenolol and am allowed to take extra if needed and kind of adjust it up and down. I take propranolol if things get real ruff. In february I started taking cytomel which is a synthetic form of T3 on top of the atenolol. In april, one of my sisters saw me for the first time in about 5 years and wanted to know what had happened cause she'd never seen me sit still my life. Everyone's commenting on how much better I look and I can't believe how much better I feel. So stop worrying about that part. Getting rid of the symptoms is great.

Just hang in there and please keep me posted. I've been looking a long time for someone who's been thru it too.

 
Old 06-18-2008, 06:02 PM   #7
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Re: Please does anyone have info on thyroid hormone resistance or pituitary gland tum

Hi blackbeauty,

I almost missed your post. I was too busy running my mouth. I've got some stuff going tonight, one of which includes some much needed sleep but stick around. I'll be back. In the meantime, it really would help if you posted the lab reference ranges along with the lab results so that they can be interpreted properly. If you'll start a new thread called pituitary hypothyroidism and put all the info in it, I'll check back in tomorrow and in the process you may pull in some more people who are familiar with it.

 
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