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Old 09-26-2011, 06:16 PM   #16
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Re: Pituitary Resistance to Thyroid Hormone

Hey guys, sorry to hone in on your conversation here, but I had to say something because I am really starting to wonder if I have the same problem. I laid out my basic health history on the thyroid board here http://www.healthboards.com/boards/showthread.php?t=870672 but long story short I've been having a whole bunch of symptoms (some forever, and some just recently) and my GP doesn't have a clue what's up after my last blood test (high TSH + high FT3 and FT4=???). But I felt compelled to reply to this thread because I see myself in so may of the symtoms you've mentioned! Mainly:

- add/adhd..wasn't diagnosed til I was about 20, but I was a really hyper/crazy/funny/obnoxious kid. My parents were really relaxed about behavior that would probably drive others crazy (my mom is ADD too) and I was always really smart so I did fine in school despite never ever paying attention in class. Things got bad my jr. year of college when I went from straight A's to C's and D's for no apparent reason (my intelligence and charm just couldn't compensate anymore) and that's when I was diagnosed. You guys should read Dr. Hallowell's books on ADD (or ******** the mp3 if you find it hard to get through books like I do). His book 'Delivered from Distraction' seriously changed my life! I also take adderall now which helps a lot, but I'm starting to worry about its long term side effects since I've been having all these health problems lately...

- appetite..I have always been a big eater but never struggled with weight gain until recently (I'm still in a healthy range for my age/height though). I would always order off of the 'adult' menu as a kid and always finished my meals (like supersize big mac meals when I was 10 or so, no joke). If I don't have a snack every 2 hrs or so I feel absolutely starving, and, no matter how late or how much I ate the night before, I am guaranteed to wake up every morning with my stomach growling. My appetite does seem to fluctuate a lot lately though, going from average-big to ridiculous-big, especially right before my period. I've been tall and thin since puberty, and in the past, if I felt myself getting pudgy, I could lose weight really easily. But for the past year or so I've been steadily putting on weight, which has made me pay more attention to my diet (like seriously it feels like all I eat now is salad..albeit they are pretty big salads or else I'd starve lol). But it seems like all of my weight gain is around my stomach, and I've even lost noticeable weight in my arms since I started working out, but my stomach is still just fat in my opinion.

- back problems.. This started more recently. In Jan. of this year, after being hunched sideways at my desk 24-7 for several days working on 3 papers for grad school that I'd waited til the last minute on(surprise surprise), I started having back spasms and carpal tunnel symptoms that I haven't been able to kick since. I've done physical therapy, chiropractor, accupuncture, and tried to limit my desk-time as much as possible, but almost a year has past and my back still kills me most of the time. These days it's mainly in my neck, shoulders and sometimes my tailbone/pelvis, but I worry that if I feel like this at 24, my 30s 40s and beyond are going to suck :-(

- itchy skin - for the past 2ish years I've had a big problem with this which comes and goes. Sometimes, especially when I haven't gotten enough (or any) sleep, it literally feels like my skin is crawling or I have fleas or something. This seems to come and go for weeks at a time though. At one point I thought maybe it was restless leg syndrome (even though it was not just in my legs) and started taking iron supplements which seemed to help. Still, it comes back fairly often despite the iron.

I'm sure I could go on forever, but I'll stop with the symptoms for now. What I'm getting to is, I think these are mostly hyperthyroid-ish symptoms, but I started out this diagnostic journey convinced I was hypothroid due to the usual symptoms of weight gain, horrible fatigue, depression, etc. etc. But so many of my symptoms (plus my highly unsual blood test results) show signs of both hypo and hyper at the same time, (i.e. costipation + diarrhea/frequent BMs; fatigue + anxiety and insomnia; cold intolerance + night sweats; etc.).

I have an endocrinologist appointment in 2 weeks, but I am having a hard time not freaking out in the meantime since I am now convinced that there is something going on with my pituitary. I'm really scared I might have a tumor (especially since I recently found we've had a serious mold problem behind our kitchen cabinets that's been going on for several months, and black mold is correlated w/ pit. tumors!), but now I wonder if plain old thyroid hormone resistance would be even worse though, because at least a tumor can be removed. Haven't read enough about RTH to understand the genetic connection/heritability, but since I happen to have an identical twin who is not having so many health problems right now, I think having her tested for stuff might make for an interesting science experiment.

Cutting to the chase a bit, I guess the main question I have for you all is how did you finally get diagnosed? Like what further tests should I try to get to ease my mind while I wait for the endo.? I've posted my previous tests & results here:
http://www.healthboards.com/boards/showthread.php?t=870672
Also, are there any symptoms that are like dead give aways that you wouldn't find in other thyroid disorders?

Sorry to be so long-winded here, I am just desperate for answers. I'm sure you guys know how it is to know instinctively that something is seriously wrong with you and have doctors just brush you off or scratch their heads. I just want to be as prepared as possible for the endocrinologist because I am sick of looking forward to doctors appointments that end up going nowhere. And if the endo tells me it's all in my head or something I am seriously going to slap her/him, so I want to have as much documentation as possible to show that something is up.

 
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Old 09-27-2011, 05:22 AM   #17
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Re: Pituitary Resistance to Thyroid Hormone

Since this is such an appropriate article for this thread, you're getting it twice so anyone wondering the same thing can look at it too. What Should be Done When Thyroid Function Tests Do Not Make Sense? http://www.medscape.com/viewarticle/743248

I'm not going to say it can't be RTH although an elevated FT4 is pretty much a requirement for diagnosis. It could also be the beginnings of hashi's or a combination of disorders. You can sometimes see some really weird results when you combine non-thyroidal illness syndrome on top of a thyroid disorder. Mine can go totally whacky when something else serious is going on but they always settle back into the typical RTH pattern afterwards.

There are no dead give-away clues. It's sometimes a diagnosis of exclusion that's based on a pattern of multiple clues. If you haven't already, read the chapter on resistance syndromes at thyroidmanager.org.

You might want to ask Claire who she's seeing about it. It seems that doc knows a bit about RTH and pituitary disorders which usually translates into thyroid disorders in general too. I don't know what your options are of seeing who you want over there but I assume being American gives you a different set of rules??? Do you have to "go private" for this or do you fall under the NHS? Nice thing about over there is it's a small island. You wouldn't have to travel that far.

 
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Old 09-27-2011, 08:38 AM   #18
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Re: Pituitary Resistance to Thyroid Hormone

Thanks for the quick response Helen. I've looked at the Medscape article and the thyroid manager chapter, though both are a bit hard for me to comprehend, especially since my ADD symptoms seem worse than ever these days, but I will definitely keep trying to figure this out since I've realized that I need to have as much knowledge as possible when I talk to the doctors!

Quote:
Originally Posted by accessn12 View Post
I'm not going to say it can't be RTH although an elevated FT4 is pretty much a requirement for diagnosis. It could also be the beginnings of hashi's or a combination of disorders. You can sometimes see some really weird results when you combine non-thyroidal illness syndrome on top of a thyroid disorder. Mine can go totally whacky when something else serious is going on but they always settle back into the typical RTH pattern afterwards.
My FT4 is on the high end of normal 17.9 pmol/L (10.0-19.8), which just seems so weird given my hypo symptoms and TSH of 7.8. I don't know if it's high enough to be RTH but I feel like the idea of "normal" vs. "abnormal" blood results is pretty arbitrary since what is optimal can vary so much from person to person. But is FT4 usually way more elevated in an RTH diagnosis? I thought it might be Hashi's as well given my high antibodies. Would antibodies also exist in pituitary tumors or RTH? I think your idea that I have multiple conditions muddling up my test results is interesting though. I just hope the doctors are smart enough to figure it out if this is so.

Claire, I'm glad to see there's someone else in the UK here, though Edinburgh is quite far from where I am (I'm in Nottingham). To answer Helen's question, I am covered by the NHS since I'm a student, but after my last blood test the doctor actually encouraged me to go privately to an endocrinologist since the competence of the NHS doctors can be somewhat hit or miss. I realize now that she was hinting that I possibly had something pretty unusual going on and I'm going to need a pretty smart and proactive doctor to get to the bottom of it. I've looked into the private endo here though, and it would be £250 (almost $400) just for the first appointment! I figure if I'm going to spend that much money I might as well buy a plane ticket back to the states and see doctors under my Dad's health insurance. This isn't the place for discussing healthcare politics, but I have to say that my experience here has really made me question my views on universal healthcare! It just seems that, at least it some cases, it helps having doctors who are motivated by profit. But if I do need an MRI or anything it would be nice to get it here since I know those things can get expensive in the states, even with insurance. But Claire, I'd be really interested to know more about your diagnosis story..especially if you ever get ahold of your lab results. I'm curious to know what in your tests raised a red flag and made your doc request the MRI. At least with my GP, it seems like it's pretty difficult to get their attention. It's also a little discouraging to hear that you had to wait several months for a test from America...I mean it's 2011, are they sending it by boat or something?!

Also, Claire, I totally relate to your sleeping issues and emotional roller coaster. I really feel like I must be going crazy sometimes and it sucks never knowing how my mood/energy is going to be from one day to another. But lately I've just had sooo much anxiety and it seems like I'm crying every day. But I'm 100% certain that, despite what the doctors might want me to believe, my depression and anxiety are rooted in something physiological and it's not just all in my head! However, I'm really starting to consider going on antidepressants, at least as a temporary fix, since it seems like it might be a while before I get anywhere with my thyroid issues .

 
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Old 09-27-2011, 09:32 AM   #19
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Re: Pituitary Resistance to Thyroid Hormone

There have been reported cases of autoimmune thyroid disorders coexisting with both RTH and pituitary tumors so it's not impossible.

I also know a set of identical twins where one has hashis and the other graves. Their symptoms and diagnoses came quite a few years apart. I don't recall seeing any case reports where a genetic mutation for RTH (which they don't find in every single case) didn't show up in both twins. There's a lot of cases where they are unable to identify the genetic mutation so it isn't always a sure shot. It might be very helpful to see if your sis could manage to get a full thyroid panel with antibodies though.

Now take a deep breath and try and chill. I know you want everything to happen NOW but that ain't going to happen. This is real life and things can take a little time. It's easier to deal with if you accept that fact and try and go with the flow. Yes, it's 2011 but medical science hasn't been perfected yet. That's why they still call us patients. We don't have to be idle patients though and the time is probably best spent by learning as much as you can while you're trying to nudge the process a little faster. It is frustrating.

One of the tests I need for something else is only available in England. Go figure.

 
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Old 09-27-2011, 02:53 PM   #20
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Re: Pituitary Resistance to Thyroid Hormone

Hi there

Firstly apologies for disappearing for a few days. I wasn't very well last week - completly exhausted and was having to go to bed pretty much when I got home from work. Was also having a lot of bad headaches so was trying to stay off the computer.

I had my 24 hour heart monitor yesterday until this morning. So another step closer in the right direction!!

Welcome to the post Adrian - I am just going to read all of the posts, but firstly am going to reply to Helen's last email to me. If I don't have time to reply this evening, I will try tomorrow.

Thanks so much for reassuring me Helen. It really was a bad week last week and I was feeling really down. I'm finding this mood thing quite difficult.
Will hopefully find out soon if I need to go on beta blockers, now I have had the 24 test done. Just feel like I need something. I find it interesting what you say about stress affecting your condition - things have been quite stressful for me too the past few months, both in work and outside of work, so wonder if that has affected things.
Have I kicked or smashed anything yet? Well, pretty nearly yes, I feel like doing it a lot. Seem to be more irritable at the moment and don't have as much patience as I normally do.
Appetite - I forgot to mention that. Yes, I eat lots and lots! Sometimes think I could eat another meal after I've finished.
I will try and keep my humour, but its been hard at times recently. Lots of crying!

I've just turned 30. Looking back, I would say that I've had some symptoms for a few years. Is sort of beginning to make a bit of sense now. And yes, we did think it was a virus or something to begin with - the GPs couldn't figure out what was wrong with me and were doing all sorts of tests. Thats when my pulse was rather high - 133

Thanks again Helen

Claire

 
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Old 10-14-2011, 05:04 AM   #21
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Re: Pituitary Resistance to Thyroid Hormone

I think I pulled a disappearing act too.

Did you get the results of your Holter yet?

It the stress is enough that it makes you wonder if it's affecting it, then it's enough to affect it. Learning to chill is one of the harder parts but it's important.

I do hope you get the beta blockers. I found my moods evened out. The uncharacteristic extremes eased up a lot and I felt more "human". I had more control over my emotions and they had less control over me. It was a step in the right direction. If you don't have anything that totally contradicts their use, I think you'd do well to try them.

Got my labs back. I have them done every 3mos. We're there! I take 25mcg T3 on Tues, Thurs, Sat & Sun, along with the atenolol. It was the adding one extra T3 a week to get the TSH to stay just a hair below normal that did it. The FT3, FT4 and thyroglobulin are now all firmly normal. The TSH hadn't been staying put and would niggle at me a little once in a while. The thyroid hasn't even stuck it's tongue out at me in months now. I'm having trouble believing it, especially with all the stress I've been under. There's your hope. I'm here to tell you that it can be controlled.

Now if I can just get the rest of the stuff taken care of.... I'm working on it.

 
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Old 12-05-2011, 07:27 AM   #22
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Re: Pituitary Resistance to Thyroid Hormone

Helen-I pulled a disappearing act too! Usually I get notifications if someone posts on this thread, but for some reason I didn't this time. My daughter is doing okay. Just a quick update...she is 6 1/2 years old now and is in 1st grade so she is going to school for full days now. That seems to be a little difficult for her. She has no problems academically...but she seems immature socially (per her teacher...and we tend to agree). Although all kids mature at different times, I can't help but wonder if it is her RTH is causing her to act the way she does. I'll try to explain. Almost every day at school she has something "wrong" with her. Something hurts, she's tired, she misses me/"needs" me, or her skin itches (which happens often...very itchy skin, mostly on the legs, but all over as well....I saw that mentioned in someone else's post and never realized it could be connected to RTH...how about you Helen?) She also has a roller coaster of emotions. One minute she'll be fine, and then the next she is worried that everyone hates her. She will then proceed to tell me why everyone hates her. She can get really down on herself and it is heart-breaking to hear a 1st grader talk like that. She is very fidgety and has a hard time sitting still for long periods of time (church services). I'm beginning to wonder if her beta-blocker needs to be increased. She has grown quite a bit, but her doctor didn't want to increase her dosage unless we had to. She isn't taking any T3...which I saw seems to be helping you. Her doctor hasn't mentioned that as a possibility at all. Do you have any research or information on using T3 as a treatment?

Her last doctor appointment went well. She has follow-ups every 6 months with her endo and every year with the geneticist. As a reminder...she did NOT have the gene mutation for RTH, but still was diagnosed with RTH. Side note: her way of getting diagnosed was having odd thyroid test results (normal TSH and high free T4), checking the pituitary gland for tumors, having the genetic test for RTH done, but then by process of exclusion...they came up with the diagnosis of RTH. No pituitary tumor markers, responding well to atenolol beta blocker treatment, therefore probably RTH. The reason we went in initially was because of her being sick and having low grade fevers for 3 months. This was all "triggered" by her first time ever being immunized for the flu. She had the nasal FluMist and after that everything kicked in. That must have been the "stress event" for her body that made the RTH stick out. It didn't CAUSE her to have it, just excaserbated her symptoms. Back to her last appointment...her endo is glad to hear she is doing okay and wants to try another trial off the beta-blockers next summer. She thinks her body will adjust and not have symptoms anymore. She keeps explaining that most people with RTH have no symptoms. (I think she is confusing pituitary RTH with general RTH...although when I confronted her, she said there was no distinction between the two.) She thinks that as my daughter matures, things will get better and she may "grow out of it." I think she sees my daughter's actions and symptoms as only her personality and immaturity. From listening to you guys...it seems that she is wrong. Now...on to the geneticist. Our geneticist used to be a pediatric endo before he went on for more schooling to be a geneticist. It's like having the best of both worlds! He DISAGREES with my daughter's endo that she may "grow out of it". He doesn't think that my daughter will ever be able to go off the beta blocker because it is a receptor problem....and they won't be "fixed" just because you're getting older. He says she will always have this problem and that hopefully we will learn more about it and how to treat it during her lifetime, but for now, the beta-blockers are definitely helping so why mess with it? It's so interesting to hear two different opinions from two different doctors that work together on her case!

So...to make a long story short...my daughter is doing okay, but I think she could be better. I think school is wearing her out a little since she sleeps in every morning and just looks tired. Her emotions are all over the map so I never know what I'm dealing with each day. Her doctors have never mentioned any emotional component, so I'm very interested to hear all of your opinions. Again, she is 6 years old so she can't really explain how she feels. She's doing fine with her grades in school because she has a great memory and everything comes pretty easily for her. I'm thinking of doing another week of journaling her symptoms to see if the doctor will increase her dosage of beta-blockers just to see if it helps with the emotions at all. When I took her pulse yesterday morning it was 154 beats per minute. The beta-blocker brings it down to around 85-105 beats per minute. She takes her beta-blocker in the morning. Could it be possible that it is wearing off by the afternoon? (that is her most difficult time at school) Would it be helpful to split her dose and give her half in the morning and half at lunch? I guess I'll have to check her pulse more often and use it as a guide to determine how long the beta-blocker is working. As always...thanks for all your comments. I'm so happy to have a place like this to go to for help!
Karen

 
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Old 12-06-2011, 04:33 AM   #23
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Re: Pituitary Resistance to Thyroid Hormone

Real quick but I'll be back. I've got an out of town appt today. I don't wanna go!!!

The skin is 100% TRa (Thyroid Receptor Alpha). Therefore, it responds normally to excess thyroid hormone. The skin is hyper. I have a nickel allergy but my scratching was way beyond anything that would be considered normal. I would scratch raw, especially at night when it was at it's worse. When I was about 14, the dermatologist recommended Shepard's Cream Lotion. I still use it. It was the only thing I found that ever helped.

Does she get frequent infections or complain about her ears much? I'm curious about something. My doc made a comment that I suddenly have normal ear wax. He was tickled pink and kept looking at it, saying I'd never had normal wax production until recently. It was kinda funny how excited he was over it. He thinks it's the gamma globulin infusions but I think it might be having the thyroid under control.

 
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Old 01-11-2012, 12:12 PM   #24
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Re: Pituitary Resistance to Thyroid Hormone

Hey, accessn12.. (and everyone else!)

I recently saw one of your posts from 06' about having a high TSH and T4, and wanted to get in on one of your more recent threads. This is my first post on a board, so bear with me! I received my results yesterday (I don't see the endo until the 19th) and I am thoroughly confused, on top of feeling terrible. Let me back up..

I'm a 29 y/o female.
I had gallbladder surgery on 9/15/11 after my liver started to fail. I was in the hospital for 8 days, and removing my gallbladder was a last effort at getting the liver to work again, which worked. At my follow up with my surgeon, on 9/20/11, I mentioned worsening fatigue so he tested my thyroid. My results at that time were:

Normal TSH, Low T3, High T3 Uptake, Normal T4, and Chol was 265.

As my symptoms started to get more numerous and worse, I called the surgeon to check on my lab results (another f/u wasn't needed for my surgery and I didn't think anything of the thyroid test, attributing fatigue to everything I just went through) He mailed me the results on 12/15 and called me to refer me to an endo. Of course, I couldn't get in until 1/19/12.

My list of symptoms started to get worse and impede my work and daily life, so a couple nights ago I went to a primary care doc who ordered another round of labs (at my request) and gave me a muscle relaxer and pain reliever to get me through. I received my results last night:

Low potassium, High TSH, High T3, High T4, and Chol still high.
My thyroid is also very enlarged, and he said he could feel the entire outline of it, as well as swollen lymph nodes throughout my neck.
S/N: My grandpa had his thyroid removed after some nodules burst.

So.. Any input would be greatly appreciated!

Thanks much.

 
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Old 01-11-2012, 03:03 PM   #25
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Re: Pituitary Resistance to Thyroid Hormone

Hi, bldlove. I'm a little braindead. I've had a few problems (other than the thyroid) going on. The thyroid's been behaving, for once, while everything else falls apart. Boo hoo, woe is me. I could gripe forever but that's enough. I'll whine some other time.

Did you receive a paper copy of the lab results or just told the results? What's needed is for you to post the thyroid lab results with the lab reference ranges. There's various forms of the T4 and T3 tests. It's important to know which ones they are so the name should be written here exactly how it is on the lab report.

Helen

 
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Old 01-11-2012, 03:48 PM   #26
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Re: Pituitary Resistance to Thyroid Hormone

Hey Helen- Thank you for getting back to me so quickly. I hope your other problems resolve sooner than later.

I have the paper copy of all of my labs (a must in my book)

9/20/11
Triiodothyronine (T-3), Serum: 45, Low 55 - 170
Resin T3 Uptake, Serum: 40.2, High 22.5 - 37
Resin T3 uptake RATIO: 1.34, High .75 - 1.23
Thyroxine (T4), Serum: 5.3, 4.2 - 13
TSH-ICMA: .88, .5 - 4.8


1/09/12
TSH3 ULTRA-SENS: 5.37, H 0.55 - 4.78
TOTAL T3: 209, H 60 - 181
THYROXINE T4: 12.5, H 4.5 - 10.9
T3 UPTAKE: 22.7, 22.5 - 37
T7 (calculated): 2.84, 1.25 - 4.80
POTASSIUM: 3.3, L 3.5 - 5.5


I realize they are not excessively out of range, but apparently my body thinks they are with the amount and severity of the symptoms it's throwing at me! Thanks again.

Last edited by Blndlove2; 01-11-2012 at 03:49 PM.

 
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Old 01-13-2012, 06:38 AM   #27
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Re: Pituitary Resistance to Thyroid Hormone

It always seems to be later than sooner. Always gotta be a battle.

Another thing to add to your book of musts is having Free T3 and Free T4's done instead of Totals. The endo will probably order the right ones. If not, run.

Do you take birth control pills?

At this point, it's really hard to tell, especially with only totals to go on. There's several possibilities and they all need to be ruled out. I've seen those type of results from people who have non-thyroidal illness syndrome, anti-mouse antibodies, thyroid hormone transport protein abnormalities, lab error and probably some other things but like I said, I'm a little brain dead right now.

I need to get off these d*** pills. It would be nice if they'd give me a buzz but they don't. They just make me feel slow and stupid and hardly feel like they touch the pain but I'm probably mistaken there cause I know what it feels like when I don't. I'm also getting over pneumonia so that's part of my big story. I'm just in major malfunction mode and not very happy about it cause everyone seems to be dragging their feet. As usual. It's easy to understand why all the medical offices and buildings are starting to post signs that say "No Weapons Allowed".

Has your liver totally recovered? The liver plays a big role in the conversion of thyroid hormones. Cholesterol too. My first gut reaction is to lean in that direction as to a most likely explanation but regardless, it has to be looked into from the endocrine side too. You don't want to miss something.

The waiting game is the pits. I'd love to be able to blurt out an answer to solve all your problems but there isn't enough information to work with yet.

What kind of symptoms have you been experiencing?

And Karen, I haven't forgotten about you. Just forgotten how long it's been. How did Christmas go with all the extra excitement? Yes, it is possible that it's wearing off by afternoon. It also might not be quite enough. The doc who originally increased my dose and put me on twice daily told me hypers require more betas than normal people do and they metabolize them more rapidly. Everything I've read since backs that up. It goes for some other drugs too.

I like your geneticist.

I also think that certain viruses have the ability to shift the pattern of receptors so that the symptoms become more prominent at times. It just seems to consistent to be just coincidence.

I always had a good memory and was quick to learn. One of the few benefits of being hyper is increased mentation. You think fast. However, I could also be an emotional wreck. Sometimes it amplifies emotions way beyond anything normal. I always called it my meltdowns when I was going thru one of those periods. They didn't last long. I did get diagnosed as being "hyperactive" as a kid. That was before they started calling it ADHD. I don't think it's exactly the same cause I was paying attention but I was also wanting to get on to what was next. The psychiatrist I saw briefly in high school said I was bored. I don't think my head settling down was so much the aging process as it was the beta blockers.

That's me for now. I'm going to go crawl back in my hole.

 
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Old 01-13-2012, 09:08 AM   #28
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Re: Pituitary Resistance to Thyroid Hormone

Helen,
So sorry to hear you're not doing well. Thanks again for your help. Not much has changed lately. I'll update if things do. I hope you feel better soon!
Karen

 
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Old 03-17-2012, 07:05 PM   #29
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Re: Pituitary Resistance to Thyroid Hormone

Quote:
Originally Posted by falkenkb View Post
Hello,
My 5 year old daughter was preliminarily diagnosed with Pituitary Resistance to Thyroid Hormone. She has a follow-up MRI of her pituitary gland scheduled for October to rule-out a TSH-secreting pituitary adenoma. She had an MRI done in April that showed a 5 mm micro-adenoma which the doctors are assuming is an incidental-oma since it is small and her alpha-subunit test came back normal. Her thyroid levels were first found to be off in December 2009 and have been that way on 5 separate occasions since. They even used a different method to test her T-4 that they felt was more accurate. Her latest bloodwork showed the following levels:
TSH: 1.44 (.32 - 5) NORMAL
Free T4: 2.31 (.8 - 1.8) HIGH
Free T3: 5.8 (2 - 3.5) HIGH
I am looking for other people who have experience with this illness. Since she is only 5 years old, she has a hard time telling me how she feels and how the medicine is helping her. Her symptoms that made us first see the doctor were high temperature, rapid heart rate, frequent diarrhea, hyperactivity followed by lethargy, extreme hunger, inability to gain weight, and inability to concentrate. Some of these symptoms have improved with the medication they have prescribed: a beta-blocker called Atenolol.
Again, I'm hoping to hear other people's stories about this illness. I'd like to know about symptoms experienced and how to "live with it" since the atenolol that she is taking doesn't fix everything. The doctor also doesn't really want to keep her on the atenolol for longer than 1-2 years. Does anyone have experience of the symptoms getting better with age? Thanks again for all your help! It will be great to meet some other people with some experience.
Thanks,
Karen


All I can recommend is to ensure the tumour growth is monitored every three years or so. They can be removed when small but once they are over 1cm (they're harder to remove). And yes, they can cause constant problems with sleepiness and weight problems (in most cases weight gain but in some weight loss). They probably don't want to put her on Cabergoline yet because it may damage the heart, but so far there is no other good drug I know of personally that will stop the growth (Other than Bromocriptine which I had really bad results with). Unfortunately both of those drugs have to be taken for life, so for now they're probably just going to watch her to see if it grows. Don't make the mistake I did though, of letting it get become a macroadenoma versus micro (over 1cm), if you can find a good surgeon. The only thing is that most doctors know nothing about these tumours, even though one out of five people has one, so it could be hard to find a good surgeon who has done many such operations, and without one who is really experienced, the risk would be too great right now, no doubt.

Has she had her prolactin level measured? High prolactin made my own heart beat much slower and become very irregular so I'm curious. Cabergoline made it beat faster but more regular. It's sad to see such a young person on beta blockers already. I think high prolactin is a really bad thing in any case, so she should have that checked, but until somebody invents something better, there isn't a lot of choice right now.

 
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Old 07-17-2012, 11:03 AM   #30
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Posts: 9
falkenkb HB User
Re: Pituitary Resistance to Thyroid Hormone

Thanks Jul2 for your recommendations. Her MRI in April showed no change in size. Her other hormone levels were checked when they initially found the tumor and were normal, and they will be checked again this October. Her TSH continues to be normal and Free T4 and T3 are still high. The numbers seem to be very similar each time she is tested.

Question for Helen (or anyone else who knows what this disease feels like): Do you have a hard time in warm weather? I know the thyroid helps regulate body temperature, so I wondered if there was a connection. My daughter seems to have "bad days" when it is pretty warm out. I'm not sure if that is because she is having a harder time sleeping due to the heat which causes issues, or whether she just doesn't feel right when the temp is high.

We cut back her dose of Atenolol from 3/4 tablet daily to 1/2 tablet daily per the doctor's request. It was AWFUL!! We made it a couple of weeks and I called for them to increase the dosage back to what it was. She got very depressed and moody while her dosage was decreased and had a harder time dealing with things. Her teacher noticed, her 9 year old sister noticed, and of course I noticed. She was supposed to do another trial off of Atenolol this summer, but we refused to do it after seeing how the decreased dosage affected her. Do you have any information you can tell me on how Atenolol helps you? I know it lowers her heart rate, but are there other things you notice? It seems that she is very sensitive to needing sleep. I don't know if the lack of good sleep is what makes her "off" or whether it is other symptoms. I think it is the other symptoms that affect her sleep and then snowball on top of one another.

Thanks again for all of your help! She is now 7 1/2 and it is getting easier to find out how she is feeling, but I think she has a hard time explaining things.

Hope you're all feeling well!
Karen

 
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