Mayo Clinic has not been able to find out what is wrong with me until last week after I have done my research for the past few years. I have been reading up Hashimoto’s disease online for a few years ago and it lines up many of my symptoms. However the Mayo Clinic was not catching it. I went to the Endocrinologist Dr Westphal last week and when she sat down I asked her about Hashimoto’s and she said “Well we have checked your thyroid levels for the past year and 8 months and they always seem to be at the right levels. I broke in and told her, “That is because I am on thyroid medication, my thyroid has been shut down ever since I had my colon removed in 1994.” She was Embarrassed as she hung her head down and said “Oh I’m sorry, yes you are right you definitely have Hashimoto’s then”. Can you believe that? After all of that testing and asking over and over why my skin pigment is leopard spotted all over? I HAD TO FIGURE IT OUT? Mayo Clinic is good, but this just shows you that the patient needs to stay on top of it because Drs. can overlook things sometimes. But I am grateful for Dr. Westphal admitting that she was sorry and FINALLY giving me one answer to a part of the problems I face. However the Rhemy Dr. ay Mayo Dr. Griffing has refused to see me again and monitor me to see if I have Lupus. John’s Hopkins says that a patient has to be monitored for a year or more sometimes to diagnose Lupus or else they diagnose it solely off symptoms. But this Rhemy Dr. Griffing is going totally off blood work and they have not even done all of the blood work needed to make a proper diagnosis. Nor have they done a skin sample or a kidney biopsy. Lupus and Hashimoto’s go hand in hand. If I have Lupus that would explain all of the other illnesses I have had most of my life that are listed below.
Here is a basic journal of my life’s battle with Health Issues so far.

When I was a baby I remember having migraine Headaches so bad that I would throw fits. It felt like my head was going to explode and I still suffer with that today. As well I had such leg pain that I would cry at night while my mother rubbed and rubbed until I could fall sleep. Mom said it was Growing Pains. I must still be having them because the pain has never stopped. I was constantly catching everything that came around me. I had Bronchitis and the flu many times a year. I had psoriasis all over my leg and the back of my neck by the time I was 12. I was also taking laxatives because I was consistently constipated.
I was diagnosed with Ulcerative Colitis at age 16, then Endometriosis at age 24. By age 26 I had to have a COMPLETE Hysterectomy. In between age 16 and 33 I was in so much pain from the female problems and the colon, I was a slave to the toilet. I had 5 miscarriages in my early 20′s and was able to have 2 healthy children by C-Section because my pelvis was too small to have them natural. By age 33 I had to have my whole colon removed with reversal of colostomy bag. Then within 2 years of having that surgery my thyroid shut down and I have been on meds ever since. Within 8 years later I went to an allergy Dr. who did pricks on my back and detected over 90 some food and environmental allergies including wheat, tomatoes strawberries and too many to list here. I also have over 30 to 50 drug allergies.
So I had to go on a chicken and rice/ rice cake diet for years, I have recently just given up and added more things in my diet because I was so tired and weak I could not handle it anymore. But had a horrible reaction so I had to go back to the strict diet. In 2002 I was diagnosed with interstitial Cystitis. I am still a slave to the bathroom between the bladder issues and the pouch problems. In 2003 I began getting vitilago very slightly and it started when I lay in the sun, I got burnt in one spot that looked like a raspberry patch on my right side of my hip. When the blisters went away it turned into a white spot and after that the vitalgo spots started appearing everywhere within the past 9 years. In 2005 I had to have my gall bladder removed there was a gall stone as big as the gall bladder inside the gall bladder.
Then in 2009 I went to a Dr at the Eisenhower Center in Palm Springs and he took one look at my skin and records and said that he was not even going to examine me because I obviously had severe auto immune disease and needed to go straight to the Mayo Clinic in AZ.
So I came down here to AZ first for a visit and they were doing so many tests that my husband and I decided to move here so I could start treatment to re-pigment my skin for the vitalgo. Which has now covered about 30% of my body. I go for treatments and the skin where the old spots are seemed to be re-pigmenting but new spots are developing in other areas every week which I now know is because of the Hashimoto’s! I guess when the old ones go away I will still be going to treat the new ones meaning I may have to eventually buy one of those lights otherwise I may never be done with the session of treatments.
The Mayo Drs.at both Scottsdale and Phoenix including Dr. Westphal, Dr. Heigh, Dr Wolter, Dr. Fowler, Dr Coe, Dr Magrina, Dr. Lewis, Dr Swanson and more (who are VERY credible Drs.and the best in their field) and have literally done what seems like hundreds of tests on me since I have been here in a little over a year can not seem to get to bottom of all of it even though I diagnosed myself with Hashimoto’s recently and brought it to LIGHT with the Endocrinologist last week. I have probably been put under for EXTENSIVE testing what seems like maybe 20 times. Dr Heigh says that I sure am a Trooper! But I do not know how much longer I can have that attitude to be honest. Maybe by the Grace of God he will be strong when I am weak.
I have had a bout with pancreatitis, they have found some kind of mass on the left side that loops around my small bowel that they would rather not touch unless it grows. Which I started thinking about and in the fall (I think) is when they did the MRI of the pelvis and it did not show on that. Then in the winter (I think) they did a CT of the pelvis and it was there. Then Dr. Fowler felt it when he examined me, that is why he send me to Dr. Mcgrina (Onocologist) because he said that it did not feel like a Lipoma. Plus they have found cysts on my kidneys and liver that they are not concerned about. (?) I guess they are not grown up enough to be concerned about. Maybe when they grow up to be Big Bad Boys they will be concerned.. Ha, Ha…. At least I have a sence of humor about it all.

They say the cause of my severe pain in my bones and muscles is from Fibromyalgia. I am unable to tolerate all the drugs for the IC and the Fibro so I am taking the same meds I was given when I was in Tn. for the pain in fact I have the same bottles they gave me because they are addictive so I make sure that I do not take much of them. Meaning I do not even take one whole pill at a time. I cut them in half and just deal with the rest of the pain so that I will not get addicted to those too.

Oh I forgot to mention that they found an E-Coli infection that I have had for years. They treated it and that cut down on the trips to the toilet from about 15 trips a day to 10. They have found that I do have mild pouchitis in the J-Pouch off and on. It gets better than worse and back and forth.They gave me Flagyl to take when it is bad.
But I have been poked and prodded SOOOO much that my veins are literally scarred over and the only veins left are ones I have purposely saved for emergency those are the ones in my neck and ankles.
The Drs. here ALL say that each and every illness are ALL isolated instances! I am SOOOOO FRUSTRATED I can hardly see straight! This is supposed to be the best place in the WORLD to go to and they have found some things that other Drs. did not. But I feel that they are even ready to throw in the towel very soon. I can always feel when that is getting ready to happen. Yes they are very good here and I APPRECIATE everyone here. I think they have taken care of a lot of things that could have shortened my life-like the E-Coli Bacteria. I REFUSE to give up on my life ever-changing and just accept that my body could have SOOO many Immune Related diseases going on without there being a ROOT cause! I mean look I found out I had Hashimoto’s and that is one root cause of the vitalgo and THEY DID NOT EVEN FIND THAT I HAD TO!
So I believe they need to dig a little deeper here, this is MY LIFE and I have a lot to give to the earth. I am a very talented person who has a lot to talk to people about to help them go through their own lives victoriously.
But this does not make sence to me!
I JUST KNOW INSIDE that there is a root cause they are not finding! Some sort of rare disease or something, I feel it!
I am literally so sick I can not get out of bed from pain some days and I am sooooo sick of being sick! I do not know where to turn now. I pray that a Dr. or someone who has been through the same things will read my journal here that I will continue to write on and send me an email saying hey you sound like you have __________ and I am or I know a Specialist for that!
Sort of like on Mystery Diagnosis!I need a Dr. who does not care that I have Medicare will not just throw his hands up and say this same thing! I need one that will roll their sleeves up and dig in there and do WHAT EVER IT TAKES to save my life!! It would be great to have a Dr. in Calif or here but I will go anywhere at this point I have NO quality of life. I am a Singer, Song Writer, Author, Certified Massage Therapist, Manicurist and Interior Decorated but I can only take one or two clients about 3 days a week and I have to dope myself up to do that because I can not live off disability alone!

Oh I forgot to mention I had the laparoscopic Surgery 5 weeks ago and Dr Mcgrina burnt out some tumors (he said) in the vaginal cuff area but was unable to get to the mass on the left side die to scar tissue. He did NOT biopsy for some reason. The Dr. told my husband that they were tumors the size of a hair, then when the PA came in the next day she told me that they were NOT tumors but only small granulosa, then when I got home I called again and another Dr. told me that they were small masses. I have asked why a biopsy was not done since they could not get to the other mass on the left side and they had seemed to be sheltering the Dr. from talking to me until yesterday. I turned them into Patient liason because I needed to speak with the Dr. himself since he told my husband something completely different. The appointment scheduler called today with an appointment for Dr. Mcgrina to see me on Dec 6th so I can get to the bottom of why he did not biopsy and if they were tumors or not. What he intends to do about the left side and so forth. Also I forgot to mention my triglycerides are staying about 440 they went down to 260 something and now they are back up again. I have high calcium in my blood and urine and they tested me for parathyroids disease which came back negative. But those are things they are sweeping under the rug because they are “Not High Enough Yet”. Oh that makes me feel SO much better! Hey it was a joke!

I want to make it known that I am very happy here at the Mayo Clinic they are so much better than any doctors I have ever been to, but just so very frustrated because they have not found the whole root cause of all of this illness even though the Hashimoto’s explains a lot. The Drs here are THE BEST in their field. But after over a year with no real answers on WHY so many diseases, any human would get frustrated. That is the reason I started this blog so that I could share with the world my journey either to health or to the grave so that in the future it may be of some use for medical professionals or for people who are sick to be encouraged with what all I have gone through and how I fought to stay alive. I need some answers I do not want to just accept that I am deteriorating and will have to tolerate the horrible pain all of my life because they can not do anything about it due to it supposedly being all Isolated instance.