It has been a while since I posted. I have been going through some “stuff.” After months of waiting, my Endocrinology appointment came. The weeks preceding, I was having terrible nightmares, waking 3 times a night, only to still get up at 3 a.m. I know it was the fear of seeing another doctor. Another doctor who would probably treat me like I was crazy and again for the millionth time offer me anti-depressants. After 18 doctors in almost 3 years, you start to get a little PTSD about doctors in general. There have been a few good ones along the way, but their answer was always, “I’m sorry I can’t help you, this isn’t my field.”
So I take along to my appointment my two page documentation of what life has been like in this chronic limbo of no real diagnosis. It has pictures, lists of symptoms, lists of diagnoses I have received, lists of medications I am on and I added a fun little list of “test results of interest” After awful traffic that I was sure would cause my blood pressure to soar, I found the doctor’s office. The nurse was incredibly nice! I gave her my documentation and she entered everything in the computer. Oddly enough for the first time ever, my blood pressure was great! She handed me the doctor’s card and put her own cell phone number on the back so that if I have any questions, I can call her directly and bi-pass the reception desk – WHAT?!?
The doctor finally came into the room, with my documentation in hand. “WHOA!!! WOOOOWW!! This is some major documentation!!!” She spread my papers out on the exam table and pulled her chair up next to mine. She said first pointing at the pictures of my blood filled boils, “What is this??” I shrugged my shoulders. She said, “No, seriously! What IS this?!?” I said I didn’t know. It was something that was happening to me in the beginning. It would fill with blood each time I menstruated and then go back down until the next month. I had it about a year. And she asked, “but it is gone now?” I said that yes, it stopped after I started the Depo Provera shot. I told her that I had thought it was skin endometriosis but my Gynecologist wouldn’t even look at it.
So she moved down to the “test results of interest.” She started with my A1C. Interesting that my GP was like, “all your tests are good,” when my test results clearly showed I was pre-diabetes. The Endocrinologist said it concerned her, especially because I have diabetes in my family. Then she pointed at my cholesterol. That also concerned her. She talked a little about something called Metabolic Syndrome and told me she also had suspicions of PCOS. She put me on Metformin and drew out a plan that I would start with one pill, working my way up to 4 daily after a month. She was convinced that the 30 pounds I have gained in the last two years would just fall off. That sounded good to me! Sign me up!!
Then we discussed my thyroid tests from a year ago. I explained that my mother had been diagnosed with Hashimoto’s and that I asked my Rheumatologist to test me for it but he refused. He would only test my TSH and T4 and since there was nothing “out of range” with those, he would not test me for the antibodies. She said she was going to test me for everything. She said if I have the anti-bodies, she would start me on a low dose Synthroid. She asked, “how is your daughter’s thyroid?” I said I supposed it was good for now, but I can see the path she will be following. She also said she would test my cortisol and ACTH. I asked about growth hormones and she basically said that is pseudo science and she’s not going there. She said treating that can be dangerous because if you have some underlying cellular changes, it can increase the growth and basically cause cancer. She sold me on that and I didn’t ask further!
She looked at my vitamin d and said she didn’t think 2,000 a day was enough to get my levels up from a 15. I told her that no one had ever re-tested that for me so I had no idea if I was taking enough or not. Again she said she would re-test that as well. If it comes back low, she will prescribe me a higher dose. She asked, “Who diagnosed you with Fibromyalgia?” I said my Rheumatologist had. She gave a sideways glance. She said, “Looking at all of this, I definitely think you have something autoimmune going on!” She said, “Looking at you, talking with you, you are clearly NOT depressed, but this, all these symptoms,” she circled my pages of documentation with her hand, “and the fact that no one is helping you, THAT is depressing!” I had kept it together so well, but with that, I started bawling. Through my tears I asked, “Could you tell my Rheumatologist that???” She handed me a tissue. She told me that as far as the Empty Sella goes, just “put that out of your head. It’s nothing.” I laughed ’cause it’s already out of my head! A literal hole in my head! HAHA! She said, “We are going to take care of you. Take the Metformin like we discussed, I will call when all your tests are back, it will take 3 days. I want to see you back here in 6 months. If your levels are down and your weight is down, I will turn you back over to your GP so she can monitor you. Any questions? I can tell you already know a lot about this stuff.” I said, “well, I’m practically a doctor these days.” She laughed and said, “I bet you are!”
Before I even got to work the pharmacy called to say my prescription was ready. I took my first pill with dinner. The next morning I sat cautiously waiting for the terrible stomach symptoms my mother had told me about – she had tried this medication once too. Nothing happened. Well, this isn’t so bad! I had given up coffee creamer again in hopes to lose some weight, even before I had gone to my appointment I knew that 30 pounds is way past my acceptable limit to myself. At work I noticed my pharmacy had called again. I listened to the message and it said I had a prescription ready. I thought, well this must be a mistake because I picked it up last night. I called them back. It was a prescription for vitamin d. My levels must have come back deficient again. I said I would pick them up the next day (Saturday). When I got there, I gave them my name and they asked, “two prescriptions?” I was like, um that must be a mistake? She read off, “vitamin d and levothyroxine” I started laughing. Three prescriptions in 3 days and I hadn’t even heard back from my doctor yet. They couldn’t believe she hadn’t called me. I explained that she had already gone over the if/then with me so I already kind of knew what the plan of treatment was. The pharmacist went over the prescriptions with me. I said I would just wait to start the thyroid medication until I had a chance to talk to my doctor on Monday. She said she thought that was a good idea. They do make mistakes sometimes.
Monday morning came and I waited until 9:30. I knew the doctor didn’t get in until 9. I pulled out the card the nurse had given me with her cell number on it. I called. She answered!! I totally expected voicemail! I said who I was, that I had been there Thursday and that 3 prescriptions had been called in for me. She said that my vitamin d was 30 so the doctor wanted me to get my levels up. She also said that I had tested positive for the anti-TPO antibodies so I do have Hashimoto’s. I asked if I should stay on the Metformin as well and she said yes, just as the doctor had discussed with you. She said because the thyroid medication can’t be taken within an hour of eating nor could it be taken within 4 hours of iron, multivitamins, etc, etc, I may want to take it before bed instead of first thing in the morning. I asked if it was ok to take it with my Gabapentin at night, she said yes. “Come back in 6 months. Do you already have that appointment scheduled?” I said yes.
I was kind of in shock. They seemed a little laissez faire with it. On the other hand, the doctor had spent a lot of time talking about everything in the office. I was overcome with emotions. Elation – finally a real diagnosis that I have been waiting for! I knew it was autoimmune!!! Anger – I asked my rheumatologist to test me for this a year ago! Where would I be right now had he done it?? All my co-workers who had laughed and mocked me! Especially my “Frenemy,” I will never forget her words to me last year, no matter how much apologizing she has done since! Fear – what does this really mean for my health? Hope – maybe I can get my life back???
I sat there going over the ever-growing list of medications. NINE. Nine pills a day, that doesn’t include the regular shots, 9 months of allergy pills a year, Tylenol for headaches (I have taken a whole bottle since Christmas) and Tramadol when needed for pain. Of course I’m going to lose weight! Who has room for food when they are stuffing themselves with pills from morning to night!? Speaking of shots, I had mine the day after seeing her.
Tuesday was my dreaded Rheumatology appointment. I hate him. He is nothing more than my drug dealer, but I need my prescriptions renewed so I have to see him. I told the nurse of all I had been through in the last six months since I was there. Empty Sella Syndrome, the bone loss my dentist had noted in my jaw, Metabolic Syndrome, that I am still vitamin d deficient, Hashimoto’s, all my new prescriptions. She typed everything in and then said the doctor would be in. He must have already fired his last new nurse because I had never seen this one before. I could tell by the last one’s attitude about him that she wouldn’t last long.
He came in the room. I found it interesting that he didn’t look all smug like usual. He sat down and asked me a bunch of questions about everything. He never once said the word “Fibromyalgia!” What a dick! That was all he wanted to talk about in all my previous appointments! I asked him if all these new medications start working, could I cut back some of my other prescriptions? He said that yes, if I lose the weight – here we go – I will not experience as much pain and it will relieve my joints and I may not need them all. Interestingly, he couldn’t sing the praises enough of Metformin! He said that his wife suffers from PCOS and that they were finally able to have a baby after she had been on that for 6 months. Well, that was interesting! I knew I had to tell my infertile endofriend. He called it a “miracle drug.” He was also very concerned about bone loss all of a sudden. Hmmm. He said he sent a note to the lab to see if he could justify a DXA scan with the insurance company. The length of time I have been on the depo and the length of time I have had a vitamin d deficiency, coupled with the bone loss from the dentist, had him worried. Oh, all of a sudden he cares?! He refilled my prescriptions for Meloxicam and Gabapentin and I made my re-check with him for six months. He said he would let me know if we can do a bone scan.
The first night I took the Levothyroxine, my eyes were wide open at 1 a.m. UGH! The second night it was 2:15. Ok, maybe we are working our way up to normal hours. The next night, 2:30. Finally back to 3. Well, at least I have made it back to my “normal.” I had been having stomach aches since starting the Metformin or maybe it was upping the vitamin d. Who knows? I had only gone to the bathroom twice in a week. I hate constipation! Thursday I added my second Metformin with dinner. The next morning the diarrhea began. Here we go. Peeing coffee out my butt!! I was nervous so I wore a pad in the back. We have been super short-handed so I didn’t want to disappoint my co-workers by not being there. With the cramping and my bowels back to their bipolar state, I was really in no mood to put up with their shit! I told one co-worker off on Wednesday and another on Thursday. Lord, let me get through this week without being suspended!!! I couldn’t seem to hold it back!! I just had no patience for ignorance this week! I’m still trying to process everything! I sent notes to my GP and GYNO letting them know about my Endocrinology appointment and new medications. I haven’t heard back, but I really didn’t expect anything. I feel like I have lost weight, but I got rid of my scale years ago. Maybe I will check at the gym on Monday. Until then, just popping pills and getting by.