I haven't posted anything in quite some time - forgive me. I went to yet another Endocrinologist-packed with all the information I always go to doctors' office's with and my Endo just rolled his eyes at me. He said I was overstimulated based ONLY on my TSH and not on my Free's. My Free's were at the lowest end of the range and most of us know already that when you are on combination therapy (T4 & T3 meds) - your TSH will be extremely low to just about 0 - it's because of the combo therapy and many many doctors know this but this Endo was very concerned. I told him my symptoms and I said I would like him to run an ACTH Stimulation Test, CBC, Cortisol, and a few other tests related to pituitary issues. I have been studying my symptoms and felt very confident that I do have a Pituitary Disorder - not sure if it's serious or a tumor or what but that was the reason I went to this new Endo was to find out! Well - he did NOT want to run these tests and wanted me to lower my Thyroid dosages and I refused and I won my argument about the why's of running these very important tests. He did refer me to the Hospital where I was given all the tests I asked (I did say thank you for him ordering them) but then I didn't hear from him or my results for 2 weeks. He went on vacation and failed to disclose this to me and then I called again and he said he had my results on his desk and to give him a few days to review them and he would get back to me. A week and a half later - still no call. I had enough - I called the hospital and explained the horrible treatment I got and I was faxed ALL my results. It's a big no-no for them to do that because as I suspected - my results were aweful. The ACTH Test result was to double and my results went down - my cortisol was flatlined. My Endo finally called and apologized and said that yes - there are some troubling things and he wants me to go to a special Clinic in Portland, OR where they will test everything - give MRI's and do all the things that should have been done a long time ago. He thinks I have Adult Growth Hormone Deficiency and he can't rule out a tumor so he did send a referral to this special clinic that is just for Pituitary issues. I have yet to hear back.
Anyway - here I sit - sick as can be and still nothing from the special clinic - even after several phone calls - it's "we are the only northwestern specialized Pituitary Clinic and we are very busy and we will get back to you just as soon as we can "fit" you in". So I sit and wait and wait. Who knows what is happening inside my body. I am getting sicker every week. I lost 30 lbs in about 3 weeks and I am a 5'5" woman very thin to begin with. I am down to 100lbs and I have no energy at all. I have Restless Legs Syndrome, Fibromyalgia, Hashi's and now a Pituitary problem? What more can go wrong with my body!
I know I am rambling but I pretty much only have this site to use as a sounding board and I thank all of you for putting up with these types of ramblings!
Anyone have any suggestions on what to do next?? I haven't even told you all that I am also going through a divorce (my husband and I are still great friends and still love each other but it's the right thing to do) and I am moving back to my home state of WI in the next 3 weeks. YUK - COLD WEATHER-SNOW-COLD TEMPS! I swore I would never move back. My advice, never say never. Last but not least - I am also starting a business. Can't keep an old dog down - no matter how sick I may be! Thanks again to you all for being here for me!
Well given the very low cortisol I'd think you should be given cortisone and also increased thyroid meds to get your levels up. This would be the minimal treatment needed even while they get their act into gear and start looking into everything else.
I think that you should go back to this endo (who finally agreed you have a problem) and demand his assistance at least to start treating.
Low cortisol can be life threatening. Please go back to the endo and somehow convince him to start treatment even while you wait to be seen by the specialty clinic. Bring your hubby with you for extra support. Sounds like despite the divorce he could be there as a friend for you.
Sounds like you have hypopituitary. This can cause all sorts of deficiency and problems.
Make sure your hubby knows the seriousness of your condition. If you collapse or are otherwise sick he needs to take you to the emergency room (with a copy of the results from your test) and demand that they give you cortisone. This is very very important.
I agree with Sally. Please call the endo and be firm in asking. I would also call the clinic and get their fax number. Fax your lab results over with a cover sheet with your information....maybe when they see your results it will light a fire under someone to get you in! :)
I was curious to see if u found out anything yet? I have a dr like u did and have reached adead end. My ACTH level was 4 times higher than normal with many symptons of endocrine tumor. When the MRI's all came back clear he said it was depression. I am depressed but that did not change my blood! I feel so bad and can't get answers from my dr so was curious if u found out anything about your high ACTH level. Thank you and good luck.
Just came across your post and have a few questions for you Dawn.
1) Have you started any treatments? Has it helped?
2) I am just across the river, in Vancouver, and am looking for a clinic that will perform the ACTH stimulation test. Who performed this test for you? Did insurance cover it?
I have been recently diagnosed with Adrenal Fatigue. Saliva tests show no cortisol and blood show very low cortisol levels, so my doc would like to have these tests done to figure out why these values do not directly correlate, but says its difficult to find an endo who will do it. I have started taking 10mg of cortisol twice daily and at least I can get up and do things now. But I also am not converting to T3 like I'm suppose to and my doctor doesn't want to work on correcting that until we have figured out the adrenal issue because one affects the other.
Any info you can provide will be most appreciated. Hope you are feeling better.
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