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Addison's Disease Message Board


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Hi Holly!

I just read your posts. I am appalled at the way you have been treated. And even more so, appalled at the utter arrogance and pathetic handling of your case by these doctors. I just don't understand why endocrinologists(supposedly trained in these matters) have such a poor understanding of the diseases in their area of "expertise" It is incredibly worrisome to me.

Endocrinologists are among the most arrogant and irritating of the specialists and I am not sure why this is. As a part of their training, one would have assumed that they were taught to look for waxing and waning symptoms of broad range and odd presentations. And that baseline hormone testing is of little value for any endocrine disease-especially pituitary forms.

My heart goes out to you for what you have suffered all of these years and I am very angry on your behalf!! I know the feeling of being a fighter but then not having the energy to fight when you have a doctor appt. go bad. The idea of taking your hubby is excellent. I have always been assertive and well-spoken in situations like doctor appts but lately I just crumble unless my husband is with me. I find it frustrating to need him there and yet the doctors DO seem to respond more with him there.

It seems highly unlikely that you have chronic fatigue syndrome--your symptoms are not consistent. I agree with you that it sure sounds like you have some sort of pituitary issue. Lacatation can be caused by more than just elevated prolactin. Hypothyroidism is likely the second most common cause of it. But you clearly have issues that go far beyond hypothyroidism.

I am so happy that they did finally do the MRI-I am anxious to hear your results. I do not wish for you anything bad to be found and yet I almost hope the tumor is there staring at them so they are forced to listen a bit more!!

Please know that even if no tumor is seen-you still likely have pit issues and need appropriate biochemical tests for it. Has anyone done a full pit work up on you....including LH/FSH/estrogen/testosterone, IGF-1 (for growth hormone), ACTH, cortisol, TSH and free T4 and T3? My guess is that some major abnormalities will come to light with those tests.

From there, though, almost every pit patient needs stimulation testing. This would include growth hormone stimulation, cortisol stimulation for Addison's, and possibly TRH stimulation for central hypothyroidism (with this your TSH is low at the same time your T4 is low). These are complicated tests and ones that very few endos perform or know the indications for.

You desperately need to find an endo at a pituitary center. I know you mentioned having financial concerns but if there is any way for you to travel, I hope you might consider it. There are pituitary centers on your side of the US that will likely be far more responsive to your concerns. Do a search for Cushing's help and pituitary, there is a site that has many recommendations of doctors that CAN help you.

Pituitary issues are likely one of the most challenging issues to try and get help for and I am so sorry for your experiences. But-YES!! you are on the right track and you will just have to keep pushing hard until someone listens.

If you can't travel right now, then I would start seeking out the help of malleable doctors that are willing to run the tests you ask for. Go in with a smile on your face and insist that you wont feel comfortable until the tests above are run. Take in print outs from reputable sites of symptoms of pituitary diseases (oregon health science university has a whole write up of how to get your doctor to do the right tests and what to ask for). You may get one test at a time from each doc-but you can usually get in quickly over seeing a specialist. Be sure to always get copies of all of your labs and MRI results to take on to the next doc.

If it does end up that you have a large tumor up in your pituitary gland (a macroadenoma, 1.0cm or close to it) please consider seeking the help of a pituitary center for surgery. Surgery done right can give you your life back. Surgery done wrong the first time makes your challenges even more serious. There ARE surgeons who can get tangled and difficult tumors out even when others say it can't be done...but you need the right doc doing the surgery. Research and travel for the right person---I cannot stress how much this matters.

You are very sick and I am so sorry that at this juncture when you need doctors to help you-you are having to look at them as the enemy. They aren't all like that and you will find the one who will help. It may come from a least expected resouce (like the ophtho doc) but take whatever you can from each doc and don't be afraid to move on quickly.

Let me know if I can offer any help. Feel free to post any blood results or MRI results and maybe we can help you decipher them.

Hang tough...you will get there and you have already made huge strides in getting on the right track,

Sadie





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