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Old 07-27-2012, 08:06 AM   #31
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Re: Pituitary Resistance to Thyroid Hormone

Hi Karen,

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.

Helen

 
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Old 11-07-2012, 08:49 PM   #32
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Re: Pituitary Resistance to Thyroid Hormone

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.
________________________________________ _________________

Quote:
Originally Posted by falkenkb View Post
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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Old 11-20-2012, 02:05 PM   #33
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Re: Pituitary Resistance to Thyroid Hormone

Thank you for posting this information.

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.

Thank you. Happpy thanksgiving to all.

Father of little BB.

 
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Old 11-21-2012, 06:43 AM   #34
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Re: Pituitary Resistance to Thyroid Hormone

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!!!!

Keep us posted!

 
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