Recently I made a new friend through a meetup group online. He's a 40 something man who is post-op pituitary surgery. He was on hydrocortisone for 4 months and then his doctor took him off the hydro as well as his Synthroid because in the doctor's words: "You are cured. You no longer need these medications." The poor man has been in terrible pain ever since. He is on pain killers for all the aches and pains, has no energy, and has told me more than once "I would rather be dead". I have been encouraging him to see a Cushing's expert, hopefully one who also is well-versed in thyroid disorders.
You see, when a pituitary patient is hypopit, it's not always as obvious when looking at test results, because in that case it's the pituitary that doesn't signal the thyroid, not that the thyroid itself isn't working. The doctor needs to know how to interpret the results, and unfortunately most pcp's and many endos don't know how to do this.
I don't know if my friend is hypothyroid, but I would bet you a dollar that he is too low in cortisol. His symptoms go right along with that. But my friend doesn't understand why he'd need to go back on hydro since he has successfully weaned. So he's been resistant in considering that this might be his problem. His doctors never told him about adrenal insufficiency, about emergency meds, or wearing a medic alert bracelet. He doesn't have Solu-cortef for emergencies and was not given a crisis letter to carry in case of emergencies. Let me make this clear: He had never even HEARD of adrenal insufficiency until I told him about the possibility last week.
Today I heard from him and he was in bad shape. He went to the ER several days ago, and they didn't do anything for him except check his heart. He was having trouble breathing, and he is in general in pain all over. Even though he told them he had recently had pituitary surgery, they didn't check his electrolytes or his cortisol levels. They sent him home feeling just as bad as when he went in. He knows he is going to lose his job over all of this, and that's the least of his worries right now. He wants to die.
Tell me why this has to happen. Are endos unaware of the possibility of adrenal crisis and possible sudden death because of it? Is that possible? Or do we matter so little to them? Or do they believe that giving us needed information will empower us and make us less reliant on them? Do they just forget?
I would really like an answer to this question. Patients deserve better.
11 comments:
Oh, the poor guy. I hope he finds someone to help. How can doctors do that!? Make that doctor AI for a few days, bet he'd change his tune.
I did finally convince him to try the hydro, and he was feeling much better tonight. I also sent him a copy of a crisis letter so that he could see what could happen. Now he is MAD! So am I!
Did he go to a "local" hospital? I went to one when I lost conciousness and was short of breath. They told me I was "dehydrated" and sent me home. The following week I collapsed again and was diagnosed with a pulmonary embolism.
My endo also did not tell me about adrenal insufficiency. When I was feeling dizzy and nauseous, he sent me to the ER - because he thought I was having another pulmonary embolism - mentioned nothing about AI.
They did check for a blood clot, he said. Another thing that's happening is that he is having intermittent fevers. After he took hydro, he didn't have any more fevers.
He lives in a remote area in Alaska, and there are not a lot of hospitals to choose from. I did suggest that he try to get into a larger hospital, and he is prepared to travel to see a Cushing's expert as soon as he can get in to see one.
Mary - I'm so glad you've been talking to our friend from the Cushing's Partner Program. He's been having a very rough time and I'm so glad you reached out to him.
Just wanted to say thanks for being a good friend :)
I am so grateful for all the help others gave me when I was going through testing and recovery from surgery. I feel like the least any of us can do is pay it forward.
Thank YOU for introducing us. Nobody should have to go through this alone.
Oh, that poor man! Thanks so much for helping him, Mary. I tell you, when you've had pit. surgery you must know what is what! My internist had me go to the ER this weekend as he suspected I had an infection in my knee. (Nope, just injured). I told the ER doc. I don't have adrenal glands and gave him my emergency letter. He pretty much threw it back at me. What an arrogant #$%^!
love,
melly
Mary, I heard something once about being short of breathe and low thyroid also. I dont' remember what it was called, but I also know that suddenly stopping thyroid meds can have symptoms of short of breathe. He needs to have that checked also. Stupid doc can't just take him off thyroid cold turkey!
Yes, thank God for patient advocates like the ones we've all found at www.cushings-help.com. Where would we be without MaryO and all the others who came before us?
Christy, I agree that he has thyroid issues. I feel so bad for this man! And I've not heard from him at all today so suspect he might be back in the hospital.
Hi,
Just a few observations I have made. Have you noticed that modern medicine says they need your money to find a cure and yet they have not found a cure in 60 years, 0. And autoimmune diseases like Thyroid disease are interesting there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. And medical science cannot explain why we have this autoimmune epidemic. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine, even too much stress says latest research. Naturopathic medicine says, "Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base". Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 which are part of the autoimmune problem. They will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for an Thyroid sufferer you are attacking your body with your immune system, a world upside down. God bless you in your search.
Sincerely
Paul
I think you are right, Paul. The hormones they give the cattle and poultry to fatten them up eventually ends up in us. I don't understand why they aren't investigating this more even while worried to death about the obesity epidemic in the United States.
As for the thyroid - many of us suffer from hypothyroidism due to tumors on the pituitary, or the damage caused to the pituitary following surgery. What causes the tumors in the first place? That's a total mystery so far.
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