Jennifer has been through the wringer–weight gain, misdiagnoses, poor treatment…and she’s still work in progress because of Lyme disease, but you can learn from her journey!
My name is Jennifer and I live in Western Ky and I am 46 years old. This is my story.
I think I was born with hypothyroidism and I was never like other children who had the energy to play and was always overweight and obese. I just couldn’t do what other kids could do. My Mom recognized this and took me to my hometown physician (a quack as I now know) and he always said I was too fat and needed to go on a diet. He put me on a liquid diet for about 3 months (medifast) when I was about 12. I gained weight (he accused my Mom of letting me cheat). He then decided I should be on a boiled chicken only diet when I was 13. I ate boiled chicken for 3 months straight (nothing else). I gained weight. Again he called my Mom a bad parent. Needless to say I almost will barf when I eat chicken to this day!
Then when I was 15, I got very, very ill, to the point of a fever of 105 and unconscious for 3 days. He said it was the flu (gosh he is such a quack). No hospital, nothing. I now realize that is when I contracted Lyme Disease…
Progress to 16 or 17 years old, I switched doctors because I could make my own decision. This doctor (still in the same town) ran my TSH only and found I was extremely hypothyroid (duh). So I began the regimen of Synthroid for a gazillion years. It helped some but wasn’t the answer …
Went to college and found out I had Cervical cancer. I had always been religious about getting the “yearly” exam because my Grandmother died from uteran cancer. So, I was getting ready to get married and wanted to be on the pill. I had just had been 10 months before but they insisted I have another Pap before the pill. That is how they found I went to Stage 3 in 10 months. I had my cervix 80% removed. (I was 22) I begged for a hysterectomy at that time but they said I was too young and could still get pregnant, yet they told me I could never carry a child but could still get pregnant so they would not do it.
I moved to Nashville, got married (ended in 10 months), and found another doctor who agreed Synthroid was the answer. I believed the doctors and thought I was just weird. I never felt good, gaining weight if someone breathed on me. Could work out relentlessly and never lose a pound. I had no idea I was destroying my body. Got married again, moved to Dallas, had the lapband procedure done in 2003 because my husband said I was too fat. I found another doctor–she was better–at least she would up my Synthroid which we all know helps for a little bit.
My husband had extra-marital activities with another man, which I discovered after 10 years of marriage A divorce (again) became a 5 year ordeal that was miserable and amazingly stressful. Once the divorce was final I found another job and moved to St. Louis in 2007… found another doctor who was at least listening to me but no additional testing done and still an increase in Synthroid. Hey, at least she was listening!
In 2008, I found out my Uncle was dying (he was like a 2nd father to me and I loved him deeply). Also, my Grandmother (Mom’s side) was 90 and fell over a barbed wire fence and cut her leg while trying to feed the horses. She ended up in the hospital because she had put on rubber boots to feed the chickens the next day which traumatized her leg. I came in from St. Louis to sit with her in the hospital for a week and somehow got C-Diff, a bacterial infection in the intestines. I was so very sick and was on 4 months of the most deadly antibiotics. I developed an allergic reaction to one of them and there are only two that treat it. My primary doctor said, “If this one doesn’t kill you then it will make you better”. Scared me to death, needless to say. I had to be on a liquid diet for a month because I could not work full time 50 / 60 hours a week and run to the bathroom every 2.5 minutes. During that 30 days, I gained 53 lbs on this liquid diet. I really wanted to die. I couldn’t move, could not function but had to because I was single and had to support myself. I was bald. I pulled handfuls of hair out every day.
It was now 2009. I was 253 lbs and gaining. I decided it was my fault (as it always seemed to be). I started working out. I did Zumba 4 days a week, still gaining weight. I looked horrible. My Mom thought I was going to die. I was swollen around the stomach and it looked like I was 9 months pregnant . I was in bad, bad shape.
In 2010, a girl I barely knew at work,but she was hypothyroid as well, found me (a building of 10,000 people) and she said she had FINALLY found a doctor. I called the doctor’s group, Holtorf Medical Group, and made an appointment for July. Finally, maybe, someone to help me. So my best friend from home went with me to that appointment. The doctor looked at me and spouted off the following: “You’re hypothyroid, have Hashimotos, your adrenals are in failure” This was before any tests . He took my resting metabolic rate and it was 600 calories, which meant I could only eat 600 calories a day without gaining weight. I had done enough research before I went to know to take my BBT (Basil Body Temp) for 10 days. It was averaging out to 94 degrees.
Finally the bloodwork: 21 vials of blood. He immediately put me on T3 only and kept the T4, put me on Cortisol for my adrenals along with a Bovine Concentrate of 800 mg a day of their adrenal glands. I am leptin resistant and insulin resistant and have Chronic Fatigue Syndrome (which should be no surprise). It took a little bit but I started feeling like a human. Now, with Holtorf you only have to physically visit them once a year but the other times you do a video conference or phone call every other month. It was amazing. Expensive, but amazing. They are out of network for my insurance.At this point, money didn’t matter. I was working only for the insurance and to pay my medical bills.
I had an allergic reaction to the Cortisol and had to stop taking it.
The facility in KC closed and I had to transfer to the California office. Still did the phone visits. All of a sudden, my palpitations were back and my heart would stop and start again. So, the doc in Calif. pulled my T4 all together and it stopped!!!!! Oh happy day! He also started me on a supplement (all natural) that helped.
My medical bills between natural T3 and supplements, etc were running me about $1500 per month. But, finally, someone who helped. I thank God every day for them. In November of 2011, I was able to secure a position with my company to start working remotely. I was going to move back home. My parents are getting elderly and I knew that one day I was going to be forced to come back to the farm or I could do things on my own terms, so I chose to move back. In July my best friend and I flew to California… My adrenals were back in failure. I was hyper one minute and hypo the next. We had never found the root cause. I had tested positive for the HPV-6 virus, Epstein Barr, Shingles, and a few other viruses, so what was causing this? I asked the doctor when I was there: “Can we test for Lyme?” He proceeded to ask me if I had been bitten by a tick? My response was simple: “I was born and raised on a farm and played in the woods my entire life, so of course I have been bitten by a million ticks”. He said the test was not covered by insurance (so what else was new) and it was $650 that I would have to pay that day. I said, “I don’t care… if it is negative then we know.” So I had blood drawn. The test took 12 weeks to come back (pause here for a little more stuff) I was down to 161 lbs by this time!!!!
I had my yearly pap done in November of 2012 … guess what? The cervical cancer was back on the 20% of the cervix I had left. So, I went in for an immediate hysterectomy. In the meantime in August of 2012 I had met this amazing man, the love of my life no doubt and who God had been waiting to send me.
I had a partial hysterectomy, leaving the ovaries only, doctor said that should do it!!! Yee Haw!!!
In December I get the call: I have Lyme Disease and it has done A LOT of damage. The bacteria had coagulated my blood. Immediately had 2 heparin shots a day. My immune system was GONE. I cried for days. Lyme’s has no cure. It is possible to go into remission but no cure. In January 2013, I started 1 year’s regimen of severe antibiotics, as many as 3500 mgs a day of various types. The docs words were “this is going to make you very, very sick.” so what else is new, I thought. This is my life. I puked and I puked and I couldn’t sleep, and the killing of the bacteria was awful. OMG, it was terrible. Had brought my adrenals back to life and it completely sent those into failure again. It has only been by the Grace of God that I have survived. God I was sick. But my gift from God stood by me: we married in August of 2013. He has held my hair when I am puking. He is as healthy as a horse so he has no idea what all this crap is….
During the year of anti-biotic treatment I have gained 40 lbs back, but it was expected. So, I am back on trying to figure this crap out. Had my yearly followup Pap done in November. Guess what–it is now on my vagina walls. I go for a biopsy on Feb 12th.
In December of 2013, the doc proclaimed that I was in remission. There was one more test to confirm though. It takes 8 weeks to come back so I will know in February. I am going to see my new Holtorf doctor in February since she is in Atlanta and much closer to me. So, this story is to be continued as always as I am a work in progress.
I don’t know much about Hashi’s because I have had to deal with more pressing issues. My hair still comes out by the handfuls but at least it grows back. I just came though an attack, but it is better.
Fast forward to February 2014, I had an appointment with my doc. Now in Atlanta as it is closer for me to drive but yet still with Holtorf. I am still experiencing hypo symptoms and cannot figure out why. She decided to do the thyroid reflex test. The results, she said will tell her how much T3 is getting into my cells because, according to the blood tests, I should be running like a well-oiled machine. The number is supposed to come in at less than 100. Mine was 347. There was an answer: the T3 is not getting into my cells from a mitochondrial dysfunction of some sort.
I had been researching (as always seems to be case) and had read Dr. Brownstein’s book on iodine / iodide. I asked her about it. She stated she did not have the test in the office for the 24 hour loading but told me if I got the test and the results came back deficient that she would treat. So, I did: I am 41% deficient iodine. So there is part of the transport problem. I do not have the sufficient NIS transporting needed for my cells. I also have done a 3-day stool sample test (still pending on results) to see if there is any odd parasite, bacteria or yeast preventing my cells from absorbing my meds.
I want to be part of CHANGE. As thyroid patients, we are so misdiagnosed and undertreated. I read stories every single day of depression and at their ropes end. It has to stop. There has to be voices for all of us and I want to be one of those.