× Hypopituitarism is a general term that refers to any under function of the pituitary gland. This is a clinical definition used by endocrinologists and is interpreted to mean that one or more functions of the pituitary are deficient.

Frustrations with diagnostic of hypopituarism

  • Posts 84
  • Thank you received: 0

Replied by PNA-Tammy on topic Frustrations with diagnostic of hypopituarism

The best advice that I can give you is to make an appointment with an Endocrinologist that has experience treating patients with pituitary disorders. Here is a link to a list of pituitary specialists here on our website.

http://pituitary.org/medical-resources/physicians

There are some on the list that are in Canada. An Endocrinologist is the best place to start and they can order the tests you need.

Take care,
Tammy
4 years 8 months ago #10112

Please Log in or Create an account to join the conversation.

  • Stella
  • Stella's Avatar Topic Author
  • Offline
  • Fresh Boarder
  • Fresh Boarder
  • Posts 1
  • Thank you received: 0

Frustrations with diagnostic of hypopituarism was created by Stella

Hi,

I probably have congenital hypopituarism and I'm having big trouble to have it diagnosed. It seems that no doctor know what it is.

Twenty years ago I had been diagnosed with secondary amenorrhea. My estradiol was at a normal level.. for a man. The gynecologist sent me to MRI and all was normal. She also said my thyroid gland was OK but she only checked my THS, not my free T4/T3.

After many year of constant asthenia and of recurrent depression, a doctor finaly checked my T4. My TSH was low (borderline normal) and my free T4 low. He gave me 50 mcg thyroxin and I got sick as a dog (headaches, constipation, lighthead, could hardly walk from the bed to bathroom, huge nausea, very painful muscles in lower back and thigh, cold sweat, extremely tired, etc.). In short, all symptoms of low cortisol and hypoglycemia.

I ended up to the hospital emergency. They said they could not test my cortisol level (and they probably didn't test my glucid level either). They checked my TSH but not my free T3/T4. They told me to stop thyroxin. In all, I had been on thyroxin for a week.

So I finally saw the internist today. I told my story to his student. She said my family doctor probably sent me there to make sure I don't have a problem like an infection or a cancer. And she told me she didn't understand why my family doctor put me on thyroxin and that TSH is not produced by the pituitary gland but by the thyroid gland (!!!) She told me pituitary gland produce the TRH and thyroid gland the TSH (!!!!!) Wow!

The internist finaly came. He said I probably have chronic fatigue syndrom and that it caused by sleep disorder (I do have sleep disorder - I can sleep for 18 hours non stop but I believe it is a consequence of my problems, not the primary cause). I said I would really like to pass the synacthen test and he told me he didn't know what it is (!) I then talk about injecting ACTH and he told me he would do "his part" and go for a 24 hour urine cortisol test before go for an (eventual) ACTH provocation.

Since I have a psychiatric background history (depression, panic attacks and psychosis 15 years ago) I feel I have no credibility with doctors. I'm atypical but I have a very intellectually challenging job and I really have all my head.

I wish I could do the synacthen test. I have low pressure (especialy under stress - I got down to 70/40 before a chirugical intervention), I get dizzy when I don't eat for a while and I'm always tired. I don't want to have a steroid dependency but I'm sure like 75%-80% that I do have one (other people in my family seem to be borderline hypoglycemic / low cortisol too). I did have a cortisol test at 8 am and I was at 86 (unfortunately, I don't know 86 what...). I'm now overweight so low blood pressure and low cortisol is kind of unusual.

I fight because I have no quality of life (I work but it is the only thing I can do). I feel the door is wide open for depression to come back. And if I do have a cortisol deficiency, I know that under huge stress (accident, disease) I could pass away.

It is extremely frustrating to see no doctor seems to be able to diagnose hypothyroidsm. Low t4 with normal low TSH doesn't ring a bell. My menstruation came back with the weignt gain but no doctor seem to know fat cell produce estradiol.

I feel strucked between two choices: or I trust doctor who doesn't understand what my condition could be, or I educate them and I make them loose face (and they get condescending).

I really understand the fact that human body is a highly sophisticated machine and that doctors cannot know everything, but I want to get my problem fixed.

I'm in Canada. I don't have to pay to see a doctor but they are reluctant to do test. I would be willing to pay to know what is my problem. Is a synacthen test so expensive?

Do you have any advice to help me?

Thanks for reading my post.
4 years 8 months ago #10111

Please Log in or Create an account to join the conversation.

Moderators: [email protected]membershipcoordinatoradministration