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.
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
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.
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.
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.
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.
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.
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
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.
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.
Was surprised to see your post. I haven't been on in a while and didn't get a notification of it but had run across new PubMed article today regarding treatment and thought it might be appropriate to pass it on: http://www.ncbi.nlm.nih.gov/pubmed/22793502 Seems at least some doctors realize that there are symptoms attached to this disorder and they're trying to help by coming up with a better solution. Actually, TRIAC is an older treatment and I never understood why it fell out of favor, except that a myth seemed to be circulating among the experts that it was a rather symptomless disorder. I always wished one of them could try it on.
I haven't been feeling well for a while but I think it's more to do with other stuff, rather than the RTH, although it was interesting to see my thyroid hormones respond to whatever's going on and reflect the stress that my body's been under. My TSH and T4 have really bottomed out after being stable for several years. T3's normal but I take T3. When that happens, I know I'm sick but I've also watched it happen every time I've had a major illness. I can point to it and watch the doctors scratch their heads. Thyroid's sometimes baffle them.
As to the heat, some people used to accuse me of being part reptile. It was a joke at my shop because I rarely ran the a/c and was able to tolerate it. Don't tell anyone but part of it was so that people wouldn't stick around all day. I remember it bothering me a little as a child, mostly when I was trying to sleep. I used to pour glasses of water over myself in bed to try and get comfortable enough to sleep. I even had a heat stroke once while we were at the beach (no one else did), but as an adult, I always felt cold. That is, until I started the T3 and am more in line with what other people feel. Hot bothers me now but I also feel it should. Whether that's her problem, I can't say for sure but I do know that it's probably wise to make sure she stays well hydrated. In spite of protests, water is the best for doing that. I always sweated an awful lot, especially from the feet and hands, even when I was cold.
Atenolol blocks adrenaline. Even the "cardioselective" ones are not totally cardioselective. It's more a label that says they don't have a whole lot of effect on the lungs. They tone down the constant buzz. It can be a mild buzz but sometimes it's a wanna jump out of your skin and go running down the road in just your insides buzz. Atenolol has a noticeable effect on my tremor, the sweating, the heart rate, the brain overload and just plain calms things down a notch. I also sleep better because I can turn the racing thoughts off so that I can fall asleep. I love the stuff and there's no way I would let anyone ever take it away from me. I don't want to go back to the way I used to feel.
I'm not surprised at all that you noticed a difference in her behavior. I can remember seeing one of my sisters after not seeing her for quite a few years. She wanted to know what was wrong. I asked her what she meant and she said I was sitting still. She said that she had never in her life see me sit still. Revelation. Treatment helps.
She's growing into that wonderful age of turning into a young lady. Such a precious time. I'm glad you're such a wonderful mom. I'm sure you'll help her do well.
This is interesting. As a pituitary patient with high prolactin I had very severe problems with heat. Also, my heartbeat was so slow I had constant arrhythmias every night. Was sure I was going to die because I woke up choking many times a night & gasping for breath. High prolactin is brutal on the system! Even when my tumour was less than 3mm it caused huge problems so Cabergoline was a miracle in many ways. Although some felt it might damage the heart, it saved me from death, no doubt, by reducing the prolactin to safe levels. A faster heart was more steady so I never had those again, but can never stop the pills and will always be extremely intolerant to heat!
Pituitary tumours, even when small can cause "extremely abnormal" tiredness also. Mine was so bad I sometimes fell asleep on the hard kitchen floor. Even to this day I am totally "out of it" if I don't get a lot of sleep. So all I'm saying here is that it is important to take a simple blood test showing prolactin levels.
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Quote:
Originally Posted by falkenkb
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.
My son is 4 and his recent tests came showing high Free T4 and Normal TSH.
He has an ADHD / Autism diagnosis (one doc says adhd and the other says autism) and is really hyper active.
Until age of 2 he was less hyperactive and developing normally, but then suddenly the nightmare started - he woke up in the middle of the night, did not gain weight, went back on cognitive abilities. He does not speak (he used to say a few words before).
His new doctor was suprised that he did not gain weight since the problems started. He ordered Free-T4 and TSH tests. FT4 was high at 2.1, and TSH was 2.6. We are now doing further testing.
Since he cant speak, he cant tell us how he feels. He does not cry often. Eats very good quantities of food and has a fairly diverse diet (although texture is a big issue).
If anyone had/encountered similar cases? I saw an article linking Thyroid related issues to ADHD/Autism, but was wondering if anyone has gone through or going through similar situation.
Hi, everyone. I've been reading up on this post and i am so glad to hear that there are others going through the same. Long story short, i've had hyper symptoms for about 3 months. Labs always came back the same, normal TSH, high T4. My endo sent me for a pituitary MRI and we found out that there is an adenoma there. I went to get the alpha subunit blood work this morning and will hopefully know something soon! She has it narrowed down to two things - either a TSH secreting adenoma or RTH. Neither of which seem pleasant, but i was so happy to find this post!!!!
Always gotta be a battle.
I remember it bothering me a little as a child, mostly when I was trying to sleep. I used to pour glasses of water over myself in bed to try and get comfortable enough to sleep. I even had a heat stroke once while we were at the beach (no one else did), but as an adult, I always felt cold. That is, until I started the T3 and am more in line with what other people feel. Hot bothers me now but I also feel it should. Whether that's her problem, I can't say for sure but I do know that it's probably wise to make sure she stays well hydrated. In spite of protests, water is the best for doing that. I always sweated an awful lot, especially from the feet and hands, even when I was cold.
