Acromegaly & Parkinson's disease

[janeeen]

I had a macroadennoma removed in 06 just as i was diagnosed with Parkinson's Disease. As a result of the acromegaly i have had 3 knee replacements this past 12 months (one failed). I am experiencing incredible stiffness and rigidity in my legs and discomfort in my thighs and feet also. As well as the above health issues it also appears i have hypothyroidism. What i need to know is the muscle stiffness and also feeling of weakness and instability in the legs due to pituitary disorder or Parkinson's? How do i go about ascertaining this, could it be due to all the above? I have severe insomnia and generally feel very unwell, very tired, unable to walk far. I am a 56 yr old female who is/was a fitness freak, marathon runner and avid golfer, none of which i can do now. It is very hard to deal with, especially dealing with so many specialists, none of whom communicate with each other. I would appreciate any professional input. I have a very poor quality of life at the moment and frankly would rather not be on this planet if this is what the future holds! Thank you in advance.

[newboy49]

hi,

I had parkinsons and acromegaly diagnosed at the same consultation bach in 2001/2. Thought I was unique till while writing my autobiography  saw you on a google search.

[rumpled]

What tests have you had done? Has your IGF-1 been tested? I ask as after pituitary surgery, that is often a fragile part of the pituitary and well, your symptoms are rather classic for low growth hormone. It is not fun to give yourself shots but the medication makes a world of difference.
T4 is one thing but T3 may also help too. Is your free T3 and free T4 being tested? Your TSH is not valid now. I would make sure that you get copies of your tests and make sure you get more tests. If need be, move on to another doctor.

Yeah well, I don't think age matters here... but thank you!

[janeeen]

My gosh, you are very young to experience all this! No i am not on any Growth hornmone, am taking thyroxine for abnormal T4 levers. Growth H now normal. No my endo is not a neuro endo as far as i am aware, see her again in March. Was due to see my neurologist yesterday for the terrible rigidity in my legs but he is ill this week. I see him for my Parkinson's disease. I don't which disease is causing what!! Take care,  janeen

[rumpled]

What are your post-op labs like since your pituitary surgery? Often after surgery (and well, you had probably a big surgery since you had a big one), you may be losing a few more hormones.

Are you taking growth hormone? That may help support your bones, muscles and your sense of well being. How is your IGF-1 now? It will help you sleep too.

I can feel for you. I used to be an active person. I had pituitary surgery and the tumor grew back, then had my adrenals out. Now I have an undiagnosed neuro-muscular issue. Like I needed a new disease. Sheez.

Is your endo a neuro-endocrinologist? Are you getting a lot of post-op testing? Are you taking thyroid now? Do you take T3 too? You may need it as pit people do not process T4 alone very well...

Hang in there. I am panhypopituitary so I understand.