And It's About Time There Was Some Support For Cushing's!
March 10, 2007
Where to start?!!? My name is Grace and I live in Ohio. I have a wonderful husband to whom I have been married for almost 17 years and we have 5 beautiful children!
As of right now, I am undiagnosed, but I hope I am on my way to getting some answers!
As a child, I fought to take my naps! LOL! I loved to take naps! I still do! Anyway, around Jr. High to High School age, my parents took me to the Dr. They said that nobody should be able to sleep as much as I did and there must be something wrong with me. The family Dr. we had at that time basically just checked my iron and said everything was fine.
Fast foward a few years or so. My husband and I got married when we were 19.
All through Jr. High I weighed 120-125. In High School I weighed 125 to 130. I wore a size 8 and my measurements were 36-26-36! What a dream! Those are days of the past! Anyway, I was this size when we married.
I became pregnant for our first baby almost 2 years after we married. At that time, I was around 140. I had gained 10 pounds in the 2 years we had been married. I don't know for sure if that was the start of it or not, but I figured it was just from being happy, married, a different lifestyle. I was on birth control pills at the beginning of our marriage. After being on them for 1 year, I suddenly had no period, breast swelling and tenderness, stomach swelling, tiredness, nausea. I felt pregnant, but was not. I had to go off of the birth control pills and it took 3 months for my periods to return! Once they did, everything seemed ok. I think that was actually where the extra 10 pounds came in and never really went away, but I did not gain any more. So with the first pregnancy I gained 30 pounds. I weighed 170 at delivery. I could only dream of that weight now!
Back then I couldn't believe I weighed that much! I had never been that high in my life. My pregnancy was easy. I loved being pregnant! I had no complications at all. Great blood pressure, no gestational diabetes or anything. After I gave birth, the weight melted away. I did not diet or exercise. At his first birthday, I was back to my pre-pregnancy weight of 140. I nursed him and while nursing, I did not have my period until he was 15 months old. I continued to nurse until he was almost 2. (He was very hard to break.) Then, sometime around weaning him, my periods messed up! They became irregular. They were late, heavy, lots of clots. I know that is gross... sorry! I was gaining weight like crazy and I was very tired. I went to the Dr. and asked what was going on. I felt pregnant again, but I was not. I really wondered if I miscarried a few times right then.
I was trying to get pregnant, but I had never confirmed a pregnancy, just irregular periods. I had been trying to get pregnant from the time the first baby was 6 months old. I did not get pregnant again until he was almost 4! In the time frame from when he was 2 until I got pregnant when he was a little over 3 1/2 I jumped up to 180 pounds from 140. It is funny how I remember my weights at these milestones of my life. I can't seem to remember anything else these days!
The second pregnancy went great as well. This time though, I lost 20 pounds before I gained anything! I thought that was great! My friends were jealous and thinking it was really weird. I was just happy to be loosing! I thought it was not normal and I mentioned it to my, then, OB/GYN. He said he seen that in his overweight patients a lot. (Great! Another confirmation I am overweight!) I did eventually gain, but just after delivery I weighed 160! I immediately lost that 20 pounds again! I eventually gained it back and then some! I weaned her at 10 months because I did not have my periods and wanted to have another baby. After I weaned her, it took 2 months to have a period again.
Next pregnancy I think I weighed 190 at the beginning. That pregnancy was weird. I was sick like all the time. This baby was small. The others were 8 lb. 7 oz., and 8 lb. 12 oz. This one was only 6 lb. 2 oz. I lost 30 pounds while pregnant with her! I went back down to 160! I think it was then I told my husband I had figured out that maybe if I just had lots of pregnancies back to back I would get skinny again! LOL! He didn't buy that! After having her I weaned her at 15 months old. I still did not have a period for 2 or 3 months. I remember just totally crashing! I felt that my hormones were a mess. I was then seeing that with each pregnancy, I had some sort of cycle. While pregnant, I felt wonderful! Even after birth I felt really good for a while. I would have energy and did not gain weight for a while. Then I would gradually gain and once I weaned, I would gain a ton of weight and be so tired I could hardly function.
On the next pregnancy, I think I weighed about 210 when I got pregnant. I did not loose as much during that pregnancy. I think about 15 pounds, but I did not gain a lot either. After I had him, I was back to my 210... for a while. I had to wean him early so, my crashing symptoms returned sooner. Then on the 5th and last pregnancy, I don't remember how much I weighed. I think around 230 at the beginning. I don't remember loosing much at all that pregnancy, but I did not gain a ton either. It was either 15 or 20 pounds. I know I was like 247 at delivery. I lost 20 to 25 pounds immediately after delivery. I weaned him at 6 months because both of my parents were in the hospital. I gained 20 pounds in one month! I was so frustrated! I had noticed I had times where I felt like I could not get enough carbs. Other times I did not care that much about eating. I can go without breakfast and lunch and only eat supper. I couldn't be getting that many calories when you only eat 1 meal a day. Even if you eat 2 helpings or have a snack in the day! I have those times where I pack on the weight, then I level out for a while and then I start gaining agin. I have acne in bursts too! There are times I cannot get enough sleep, and at other times, I can't sleep!
Along the way, I had read about Cushing's. I am not sure how I found it. I think by putting my symptoms in the computer. I like to research things, especially medical stuff. I think Drs. are good, but they can make mistakes and miss a diagnosis when things are so similar. Drs. become a source of frustration to me because I don't feel that most of them listen! My mom was told she had Parkinson's. I did not believe it so I did my searching. I found out about Normal Pressure Hydrocephalus. Long story short... I was right, the Dr. was wrong. She had surgery and did well. Then, last year, my ex-sister-in-law developed the same symptoms. I told her to get checked for it. She eventually did and had the same thing as my mom. She had surgery also and is doing well. One point I would like to make here is, these things they say are "rare" in my opinion may very well be rare, but is it because they rarely occur, or because they are rarely diagnosed? I really believe it to be the latter!
On with my story. After the birth of my last baby, I was gaining weight like crazy, ( I gained 20 pounds in one month! ) but then after I started my periods again, they were very bad! I had always had what I called bad periods. My husband laughed one time. He said, "If you didn't like having babies so well, I think you would have a hysterectomy." I said, "You bet I would! I hate these things!" Well, they were worse after they returned the last time. I called my OB/GYN office and told them I had horrible pains that were sharp and stabbing like a knife ripping through my uterus and I had to breath through my "cramps" like I was in labor! I had HUGE clots, pain all month long, not just during my periods any more. I got an appt. My wonderful OB/GYN ( I really love this man and I am so thankful for him! ) walked into the room and told me I had Adenomyosis. I had never heard of it. Apparently the nurse wrote down everything I had told her on that phone call. He knew immediately from my description what I had. He did the proper testing to rule out other things. My husband and I talked about it. I had some options.
I decided the hysterectomy was the best option for me, but I wanted ONE more baby! LOL! My husband said I would always say, "Just one more, just one more!" I told him no, I could not do it much longer, but I did want one more before cutting it off totally. Believe it or not, this really was a hard decision for me! We decided to try for one more, but my pain was getting so bad, I just could not take it any more so I scheduled to have the hysterectomy. Turned out my Dr. was absolutely right. Pathology confirmed it, I had severe Adenomyosis, and my uterus weighed almost 4 pounds! That is the size of a good sized cantelope! I felt so much better afterward... for a while.
Then I started gaining more weight. My husband and I decided to go on a diet... again, (we had tried others) but this time, we were going to be very serious about it. I did some research and we decided to do the Medifast diet. They say the average person looses 20 pounds a month. My beginning weight was 241. We did the diet. I quit loosing after 3 months. I did it for 2 more months and never lost a thing. I was following it to a T and not cheating. I had lost 30 pounds in a 5 month period. I should have lost around 100 pounds! I was doing 800 to 1000 calories a day! I gave up on that. Then I hoped I could at least maintain. I was at 211.
I found a new family Dr. around that time who said I did have a Thyroid problem (thank you, I have said that for years!). I started on Armour Thyroid. I felt better for a while. He hoped it would help me loose weight. I hoped I could at least maintain! Wrong! He moved out of town and I was so depressed. I had to go to someone else.
I decided to go back to my old PCP. I really liked them, but every time I told him how tired I was, that I was exhausted and could not function, he said, "Well, you have little kids and you are up in the night and don't get enough sleep. No wonder you are exhausted!" He just didn't get it and I gave up on it! I figured I might as well deal with it. I had this far. Nobody listens to me anyway! We have talked of moving so I was trying to hold off on going back to them as we will go to a totally new location if we move.
In January, I started feeling really bad, I got to where I was not sleeping at night again, just not feeling good in general. I told my husband I had to figure out what is going on because I just can't stand this. I also suspected I might have high blood pressure because I just didn't feel right. I had always had a reading of 120/80 or right around that. I got an appt. for Jan. 25 and it just so happens that my mom's nursing home called and said she was really bad. She had gotten bad in the night. I knew this was it for her. I was upset, but not majorly surprised either. So, I went to be with her, but decided to keep my appt. because I had been feeling so bad and knowing I would be dealing with a funeral, I did not know when I may get into the Dr. I was prepared to have them check me for Cushing's as well. This was the other reason for my visit. There is a method to my madness!
As I said earlier, I had seen it before, but felt I did not have enough of the symptoms and dismissed it. Then, when I had my hysterectomy, the lady they put in my room was talking with me. She was in her 60's or 70's. She told me she had Cushing's when she was younger raising her kids and how she was so tired, etc. I thought to myself then... this is so strange. I have read about it and wondered if I could have it. Then I dismissed it, you know it really is so rare. Now I have a lady in my room in this huge city who is telling me she had Cushing's. She could have been in any room of that huge hospital, but she was in mine! Is this God's way of bringing it to my attention again? I tucked that in the back of my mind. Here I am, a year and a half later checking out Cushing's.
So, I go to the Dr. armed! I had pictures of my old self, pictures from the internet of people with Cushing's. I told them everything. I pulled my skirt down and showed my nurse practicioner my huge stretch marks and my mammoth stomach! She was impressed! LOL! It's a wonder she was not in shock! All she could say was, "Wow!" LOL! I told her I had bursts of weight gain, and I had gained as much as 20 lbs. in a month. I don't know what she thought, but she soon found out I was not lying! She agreed to test for Cushing's with a 24 hour UFC. I found out that day my blood pressure was 180/102! The previous year at my check-up it was 118/79! She knew there was a problem. She said, "We can't have this blood pressure like this." She knew my mom was dying and we did not know how much could be from stress, but I felt that most of it was not as I was half expecting my mom to die. My mom had been in a nursing home for 4 years and battled pneumonia off and on. I knew the next time she got it, that would be it, so I was upset, but not devestated. The nurse practicioner told me to come back next week and we would ckeck it again. She took it again before I left and said it was still right up there.
Next week after things settled down a little, I stopped in. It was 150/101! They would not let me leave this time without a script. So, I did the urine test. In the mean time, I had to keep going back to check on my BP to see how meds were doing. I gained 11 pounds in 3 weeks! The UFC came back normal. She ran it all by the Dr. to make sure she was not missing something. She told him all that had been happening. He said, "She has Cushing's". ( Thank God, at least this time they are paying attention! ) She told him that was what we thought, but my UFC was normal. He said, "Well, whatever! It is not right for anyone to gain that much that fast!" So, I now have the appointment I wanted with an Endo who specializes in Cushing's at OSU in Columbus, OH. It is April 12. In the mean time, they had me get a CAT scan with contrast of my head ( I assume because of my headaches), stomach, and pelvis. They said a tumor could cause drastic weight gain and BP fluctuations. It came back normal as well. I also had my eyes checked. I knew they had gotten worse. That Dr. said, "Oh yeah! They are way worse. Now you have to wear glasses all the time and this is a lot stronger prescription."
Then I got to wondering if maybe I could be diabetic too. So, I had blood drawn for that just the other day and they decided to check to see if I have Hashimoto's as well. I quit my thyroid med for now because I had so many side effects with BP meds and I did not know if they were working against each other or not. I want to get my BP under control first. Then worry about the thyroid. My NP was thinking maybe I was hyperthyroid now because my TSH was supressed on my last blood work at the other Dr. I thought she was wrong, but who knows. I decided to drop that med for now.
I expect to hear results Mon. or Tues. on the latest set of tests. I really feel like I could have Cushing's. I do have cycles that are very distinct. I have all of the signs now of Cushing's except the buffalo hump. I am developing a fat "pad" across the back of my neck, but not at my shoulder area. It is directly on my neck. It never use to be there. When I went back, I had lost 2 or 3 pounds, but I now weigh 255.
In May of last year I was down to 211 on that diet and now in Jan. I was up to 255. I had bee 257 the week before and 11 pounds of that was in a 3 week period! I look about as Cushing's as you can get, however, I am worried that this will all be a dead end. I feel like I am so close now to finally getting someone to listen and get it figured out, but I have a fear of them saying, "No, you are just fat. Go loose weight!"
I am sick of living like this. My kids really need a healthy mom! They deserve more than this! My kids are wonderful! I homeschool them, which is really hard sometimes, but we plug away at it! My husband and kids help me a lot. I don't know what I would do without them! I really feel like God has helped me get this far. And if I do find out I have Cushing's I believe God is letting me, not making me, but letting me go through this so that I can help others! I am an optimistic person. I try to see good in all situations even when they seem bad. I am just to the point that I feel like I can't deal with it any longer! I have to get to the bottom of this and get it resolved! I need to move on with my life and get out from under this dark cloud! I think I have a great sense of humor and don't know what I would do without it! I think it is a gift from God to help me cope with the stresses in my life.
I'm sorry this is so extremely long! I will update when and if I find out more! Thanks for listening!