hi everyone thanks for the kind words and helpf... - Thyroid UK
hi everyone thanks for the kind words and helpful replys. we had the results back sand my son his a TSH secreting pituitary adenoma
I'm so sorry your son has to go through this at such young age Nettie1.
Have you had an appointment/discussion on what they think is the best way forward for him?
plenty of hugs your way (and your son's)
we have to have more tests done yet, prognosis is unknown at the moment but fingers crossed all will be ok as it is only small, it just how to control his t4 now. and thanks so much for the lovely reply xx
So sorry to hear of this horrible start to 2014 for both you and your son.
Wishing you both the very best of luck and dont forget that we are always here for you, even if its just to let of steam.
Moggie x
You will be relieved to get a diagnosis and hope everything goes smoothly.
Hi Netti, I think this is what Russell Watson had a few years ago, and he is now back singing. I hope you soon find out how your son can be treated too. Jane x
That's interesting Jane I didn't know that.
Moggie x
Nettie and all might find this link interesting:
pituitaryademoaner.blogspot...
JaneB is quite right about Russell Watson.
Rod
So sorry to hear your new news Nettie. Such a terribly tough time for you and your son. Am so glad though that they spotted it so quickly and are onto further investigations -they sounds very proactive which is a good sign and in difficult situation. Am keeping my fingers/toes crossed for you both and thinking about you. Hugs xx
Nettie,
Mixed emotions - as you say it is good to know what the dragon looks like. Poor son - it might be tough on him.
Six months or so ago you asked here. You got several clear answers about the likelihood of this being the cause. So it is good that you received what appears to have been good information. But bad that it took the medical establishment six months to get to a diagnosis.
Wishing the best for both of you.
Rod
thanks rod the type of tumour they think he has is not the same as russel watson apparently my sons is a tsh secreting pituitary adenoma. TSH-secreting pituitary adenomas are rare tumours and account for less than 1% of all pituitary adenomas. Since the prevalence in the general population of all pituitary adenomas is estimated to be around 0.02%, TSH-secreting pituitary adenomas affect about one person per million over their lifetime. The average age of people affected is in their 40s and 50s. but at the moment the doctor is unsure what road to take as it is so rare. but all will hopefully get sorted soon.
thanks
annette
It was thought initially that I had a rare type of pituitary tumour and i had am MRI scan and a TSH uptake test to determine this. It was not this that was wrong with me.
I attend the university hospital at Cambridge and they seemed very knowledgeable about these types of tumours. They carry out an awful lot of operations on these tumours and seem to have a great deal of expertise.
Under the choose and book scheme you can attend any hospital you choose I think. I do no live near Cambridge yet I chose to attend flat hospital rather than my local one. I felt they had a bigger catchment area and more experience.
I would do some research and pick a experienced consultant. I would be a bit concerned that the doctor is unsure what route to take. When I was undergoing the pituitary tests the consultants had a plan ready to go if the tests proved positive. I was told these tumours are very slow growing and surgery had a very positive outcome. They were going to perform keyhole surgery through my nose. Good luck x
Some very sensible points there.
Rareness of a disorder seems to exacerbate the difficulty of getting diagnosed to a ridiculous extent. You might have thought that a relatively simple list of disorders and symptoms would at least allow the creation of pretty comprehensive list of things to consider.
My own experiences have taught me that there are huge differences in the expertise and the experience of consultants and surgeons in the various establishments. What seems to be a huge conondrum for one batch of medical staff in one hospital is not so in another. Conditions may be rare, but particular surgeons and consultants have cared for and carried out the majority of surgeries in these rare cases thus have the most experience.
If you google Doctor Foster hospital guide this document tells you how your hospital is performing and it also informs you of the various operations that have been carried out, how many have been performed. I think it tells you what surgeons carried out these ops so you can get a gage on numbers etc.
The John Radcliffe Hospital at Oxford is another hospital that does seem to have a high level of expertise in pituitary and brain conditions.
thanks so much for your advice, my son was diagnosed when he was just 10 days old with a thyroid condition and then due to it developing into a huge goiter and cancer risk he had it removed this was 4 years ago when he was 17. since then they have not been able to get his tsh level right they have always been above 100. he has had lots of tests for different things and i have constantly asked for pituitary tests which was done at last, last week, and the results were as stated. it is just very strange if you looked at my son you would not think he has a thyroid problem he is not overweight he does not have any bloating or tiredness or any other problems related too thyroid, just very high tsh and raised t4. but as you say it is a worry not knowing what they are going to do and if the diagnosis is correct.
I will be definitely doing a lot more research and looking at the above mentioned site. i appreciate everybody's advice and kind words.
i hope your treatment is going well too.
