I decided to put this on its own thread, as the information may be useful to others.
Thanks so much, Karen. This is what I've learned so far. It seems to fit me, but I have also read that high T4 with high TSH can sometimes occur with other disorders (didn't say what they were though).
TSH Secreting Pituitary Adenomas (tumors) are extremely rare, making up less than 1% of all pituitary tumors. They are sometimes called TSHoma's. Their molecular basis is unknown. Cause is unknown. They are slow-growing tumors, located on the pituitary gland. Because they are so rare, they are often overlooked for years as a possible cause for hyperthyroid symptoms. Over time, they can become large and inasive, but they are virtually always benign. These tumors secrete TSH in excess, therefore causing the thyroid to overproduce thyroid hormones. Patients will typically have an elevated T4 and markedly high TSH.
Symptoms are very similar to that of HyperT/Graves, including palpitations, fast heartbeat, irregular menstrual cycles, headache, difficulty falling asleep, fatigue, weightloss, sweating, nervousness, frequent bowel movements, and sometimes visual disturbances. Also, HyperT/Graves and TSH-Secreting Tumors both generally cause T4 elevations. However, in HyperT/Graves, the TSH is immeasurably low, in contrast to TSH-Secreting Tumors in which the TSH is measurable or high.
MRI or CT of the pituitary (without and with contrast agents) are the most common ways to diagnose, and will usually show the adenoma.
Treatment is usually transsphanoidal surgical removal (where they go through the nasal cavity). Larger tumors may also require thyroid ablation along with pituitary radiation therapy. Some very large tumors may need to be removed through a more invasive surgical procedure where they have to go through the skull.
Well thats about it. I do think it could fit with my labs and symptoms. I really think I need my pituitary scanned, with CT or MRI. If my last pending test (24 hr urine looking for adrenal probs) comes out ok, I'm gonna make another appt with my family doc and ask him to order one of these head scans. I'm not optimistic he will, because I don't have insurance, and already had a chest CT. If he won't cooperate, I'll find another doctor, then another, and another.....
You have the right attitude for getting somewhere with doctors.
Don't know if you know this, pardon me if you do...
Imaging centers have one price that they bill insurance, and a cash price for those without insurance. Always waggle a deal with them.
You absolutely do need one of those tests, IMO.
You did a great job with your research! I am proud of you and your attitude and that is what you need to get to the bottom of this. Also, just knowing you may have to go from dr to dr to dr is great. That is what I had to do to get my thyroid out and it was al worth it now.............I know at the time it is emotionally and sometimes financially draining, but in the end, when it is all behind you, it will all be worth it.
Anything you need at all ,please feel free to ask.
Do you have all those symptoms it mentions? What are your exact symptoms if you don't mind............any you can think of. You would be surprised how many you can have.
The very worst symptom I have now is tachycardia, and sometimes chest pain. But looking back, for at least the last 6 months, I have had several symptoms that I didn't pay much attention to. I thought it was mostly normal aging (I'm 35). I am now trying to put it all together. To this day, I am still experiencing these symptoms. Here is a list of everything I can think of:
-About 6 months ago, I thought my windpipe seemed huge (hard, not painful) but it is smaller now
-Weight Loss (should've gained, I ate everything and never exercised - I used to weigh 135-145, now 115)
-Muscle atrophy all over my body
-Dry, flaky, 'crinkly' skin (like an 80 year old's)
-Sporadic low grade fever, 99.0-99.5 (had this a month ago, is gone now, Dr. never found a cause)
-Intolerate to cold or heat (worse with cold, though)
-Trouble getting to sleep
-Hair falls out
-Occasional energy bursts
-Occasional lower back pain
-Menstrual spotting (even though I'm on 'the pill')
-Occasional chest pain
As for the chest pain and tachycardia..... About 3 months ago, the first thing I really paid attention to, was occasional chest pain in the evening. This escalated, and finally sent me to the ER. I was admitted overnight, had alot of ekg,s, some showed bradycardia, of all things (HB too slow). I had a stress test too. But the heart tests all came out fine.
Within days of the ER visit, I began to have constant tachycardia that has, more recently, escalated to the point that I literally could not move without my heart racing BAD and doing flip flops, skipping beats trying to keep up. Walking was impossble. I ended up under the care of a cardiologist, even wore a 24 hr monitor. The cardiologist says my tach is NOT related to any heart problems. He is stumped, would call me out of the blue, asking questions. He couldn't figure out a cause, and thought my thyroid test was ok. He put me on a beta blocker which slows the heart, but that is only treating the symptom, not the (unknown) cause. He has now turned me back over to my family doc, who I've decided I will see one more time, (and ask for a pituitary scan) before moving on.
I don't want to be on a beta blocker if I don't have heart problems, but I can't function without them. The tachycardia is just too BAD. It's a total body feeling, like my whole body is in overdrive. I'm still feeling the symptoms listed above, too. I need answers, but I'm back to square one with the doctors.
All these symptoms, along with elevated T4 and TSH above 3, ....honestly, what does all this sound like to you? Pituitary? Something else? I welcome any of your thoughts or opinions!
Last edited by cherilyn30; 01-29-2006 at 12:05 PM.
If you are still out there, I would like an update to see how you are and what is going on now? I have been searching for info regarding TSH secreting tumors, as I am being tested for this right now. My TSH is hig, 5.7. My T4 is high 15.8, my T3 is high at 227. I was diagnosed as hypo last year, but over the last three months, have been having difficulty with hyper symptoms that you have mentioned you were going thru. Your post was a bright light going on. How are you doing now?