Reclaiming My Health : Part 2 "Hashimotos Hypothyroidism Is More Than A Cool Sounding Name"

This is the second in a continuation of a series of blog posts, on the before, during, and after, of getting healthy again. Since I do not usually talk about my personal medical issues on this blog, I am hoping that in explaining my symptoms and sensations, this may help others get their medical conditions checked earlier. This series which will only be three posts, will also contain tips, and cautions when dealing with medical staff and our healthcare system. So here goes...
 
I suppose this "story" begins three years ago, about 5 months before our wedding. I just couldn't explain exactly what it was, but I did not "feel" like myself. I was often fatigued and the hot flashes were non-stop. Plus I started to have a buzzing and crawling sensation in my legs at night. Eventually this feeling increased to the point of keeping me awake. After a couple of months of having these weird sensations, I gave in and finally called a doctor friend. I have to explain that at that time I was not a person who talked about sickness, or even went to doctors. I have no insurance and avoided medical visits unless as I have said before, it was my last resort...as in a really bad flu that morphed into bronchitis. I may call this person once or twice a year to get a prescription.

During the in person doctor visit my blood was taken for some lab work. I was told my blood pressure was up, but I could be nervous about the visit. I said I was not nervous at all because he was a friend, and asked, "what exactly does that mean?"  No answer. The doctor scheduled a check up with a vein doctor friend of his for my legs to check for clots, at no charge. A blessing. That doctor found the circulation in my legs was fine. Since I seemed to have the symptoms, I read up on RLS and found a small percent of people respond to taking daily vitamins. I started to take a good multi-vitamin along with wearing support stockings. This combination has pushed those buzzing crawling sensations, that appear during the day now too, in my legs back 80-90 percent. Do-able.

The lab work came back that my thyroid levels were low, meaning I was hypo-thyroid.  The doctor gave me a prescription of 100 mg of Levothyroxine. He said I should start to feel better in two to four weeks. Sounded good to me. I was having a wedding at home in two months. Since I was doing everything myself I needed all the energy I could get to make the wedding decor and get our home in order.

I looked 'thyroid' up on the internet and found that here was the answer to another problem I was having with my body. Weight gain. I was slender when I met my husband, but then the weight continually came on and try as I might to diet, exercise, and even do Atkins, nothing changed. It was frustrating! Everybody gives you that,"Oh you must be content in your relationship" line. After I got engaged, I knew I had a year and five months to look good in my wedding dress, but nothing I tried did a dang thing. I kept gaining. I would say to Ben, "it is as if I have no metabolism." Well people...I was right! That is exactly what your thyroid regulates. Hypo-thyroid means low metabolism. So many of those heavy people you see in the world, are not sitting around eating all day, they are suffering from not being able to burn off anything they eat, and not having the energy to move. We are very tired people too. The thyroid problem causes a weight gain of 50-60 pounds, and contributes to getting high blood pressure. Hmm what the doctor said I had, but did nothing about.

This also explained why I had to stop my mural and faux-finishing business. I did not have the energy to go up and down ladders all day anymore. And I thought it was just the weight and getting older, making it difficult to get down onto the floor to paint, then get back up again. On the long drives home from my clients homes I would be nearly passing out in  my car from fatigue. I just could not do it any more. Planning a wedding and taking care of my grand baby at home seemed like a better option. In my downtime I began to learn about the computer and photoshop. I would have to figure out how to make money at home in the future. Ben was perfectly fine with all these changes. He is the most understanding person ever!

One thing I forgot to mention during this time is the effect of my menopause. I was having it hot and heavy since it had begun, a year or so before. Hot flashes averaged every 30 minutes and woke me up during the night with a vengeance. That buzzing would start in my feet and vibrate up my body, dizziness and hot sweats ensued. During the months surrounding my wedding I had days where the hot flashes were ten minutes apart. I can remember during the fitting of the wedding dress my sister made, her saying I could not take it off. "Here they come!" I lamented, as those pouring soaking sweats dripped all over my gorgeous wedding dress. I would roll up paper towels and place them in my clothing to catch the river.  Poor Ben would have to pat my back down a couple times a day. Now that is true love! Spending my day wiping sweat from my brow and sitting in a fog was normal. But hey it is just sweat and I was tough! I was not going to be a wimp and complain about the change of life. So I dealt with it. We had a tall fan placed at the wedding reception just for me to get relief when ever I needed!

Not getting much REM sleep at night my body crashed, and I napped often. Oh, I forgot to mention that now I was babysitting my grand daughter during the day. She was an infant and came over at 7am. (I am not a morning person, so I must really love my daughter, to do this for her.) Luckily Aowyn was good and I napped when she slept.

The wedding and honeymoon were wonderful despite the hot flashes! For the next months, I had renewed energy! I worked in the garden during the summer, and the winter brought a Christmas party at our home before the holidays. I took naps with the baby, and also later in the evenings. Still I was able to do things around the house. Although I was dealing with constant strange sensations my body was having, I just got on with it! Must be that old age and menopause thing causing this stuff. Little did I know what was lurking inside of me.

A week after Christmas it started happening. My body started literally rumbling. I was shaking inside. Plus I started being unable to walk down the basement steps. Each step hurt my knees and I held onto the walls. I would slowly shuffle across a parking lot to a store like I was 90. I felt awful. After I took the holiday decor boxes up to the attic, I collapsed on the sofa. My face was red for hours and I was in a daze. The next couple of months these sensations and situations increased. I was out shoveling after a blizzard and had to sit down in the snow and stare, while my body freaked out. Eventually I came inside, fell onto the sofa, red faced and dizzy for hours again. Lying in bed at night I felt like an old lawn mower that kept jerking and sputtering. I really was rumbling inside all day and all night! Going to bed was scary, as I lay in bed hoping I was not having a heart attack. No...I would think...not now when I am finally with the love of my life. I kept saying...I am not my body...I am not my body...I am spirit having a human experience. 

I gave in and called the doctor, in tears I told him that I was just not right, and explained some of the awful things that had been going on with my body. What happened next I did not expect.

It was the weekend and he had just come in from golfing all day. In a very nasty tone this doctor said, "You sound like a very sick person! I can't do this anymore! Why don't you get the new Obama health care and go find a doctor in your area! (This happened to be the day they announced that some possible form of nebulous health care bill had passed). I said there is no such thing at this time. He said. "Well I have changed my practice to a subscription practice. You have to pay $7,000.00 a year to see me." I was in tears and could hardly speak as this was someone who was a guest at my wedding yelling at me. I thought this person was a friend. I thought they were a doctor. There was no advice, no compassion, no understanding towards a friend except... go away! I was extremely ill, vulnerable and weak. I was confused and hurt. I did not bug this man. I only called him once or twice a year. At the end of his tirade he said I could come in the next day if I wanted for one last time. I mailed him a Thank-You note for all the years he had been kind to me, and looked for a local doctor. I cried for a week over the loss of this friend, as his wife was a very dear person to me. 

Now as life would have it...this was a blessing in disguise! I went to a woman doctor who immediately rolled in an EKG machine to check my heart. Whew! I was still alive! Seems my blood pressure was very high and I was being overdosed with levothyroxine. I was put on heart medicine and blood pressure meds as well. I had to return every week for check ups during the first month. The doctor even called me at home that weekend to make sure I was doing okay.  Amazing!

I have had a team of doctors working on my medical problems ever since that day, and everyone has said the same thing. I could have died from this overdose. If you read the medical info with the drug it is all right there...too much can cause a heart attack! I thought my friend was a doctor. He was not, he was a golf player. My new doctor ordered me to see an endocrinologist who specializes in thyroid problems. I was told that every doctor knows a new thyroid patient needs to be monitored every three months with blood tests to see how the drug is affecting the body! These drugs build up in the body over time. I had been on this strong medicine for a year and never told to have any testing. All my new doctors stare in disbelief when they hear this is what I was prescribed, and then left on my own. I don't explain that I was also yelled at, for getting so ill from this golfing doctor's overdose and negligence. From this series of lab tests I was told I had Hashimoto's Hypothyroidism which is an autoimmune disease. My body is attacking my thyroid. WTF? Body why are you doing that to me?

So far what have we learned? Number one make sure you have a good doctor who listens to you, takes their time during your visit, and cares about your wellness. Do your own research on the internet so you have a list of questions the doctor can answer. Very important to gather all your medical records and keep them sectioned in a Medical Records Binder (I have some designs for these). This is to organize and track all your lab tests, procedures, medicines, bills, appointments, and doctor information. Buy a hole punch and pocket section tabs. Just as you must keep up on your doctors, keep on the lab people as well. Mistakes have been made and things lost at labs too. Read all the literature that comes from each new prescription, even the scary parts! Keep this info in your binder too. My husband has put together a similar binder for his father, and himself. This has proved invaluable at noticing things that have gotten overlooked with his father's cancer protocol, lab test results, and the many prescriptions each doctor throws into the mix.

Check with your pharmacist every time a doctor prescribes a new medicine, to make sure it does not have bad interactions with what you are already taking. If you or your spouse has high blood pressure, buy a blood pressure cuff, and learn how to take each other's blood pressure readings. We asked one of the nurses at my Endocrinologist office, to teach us how to use the cuff. This is an important easy skill, that has come in handy when things in the body are going badly! Place the log of your home BP readings, and the dates taken, into your medical notebook to show at your doctor visits. If you are hypo-thyroid keep a log of your weight as well in your medical binder. Everything is in one place and easy to grab when you are going to the doctors, lab tests, or the hospital. You never know which information about you they may need! Doctors and nurses have thanked me for keeping such thorough records. Once when the computers were down in one office I was still able to continue my doctors visit, because I had copies of the lab tests my doctor needed.

If you do not have insurance tell that to your doctor, as sometimes they can lower your bill, especially if you pay in cash the full amount at the time of service. Save all billing info in your medical records binder. Also try to get your doctor to order your meds from the $4.00 list at Walmart where possible. Apply to local clinics and state programs if you qualify for assistance. Yes, (to all the haters and non-compassionate people) even those of us who have lived the 9-5 corporate life may one day get sick, be unable to work, no longer have insurance, and need help.

What was found in the lab tests that were taken by my new team of caring professionals?

My thyroid was turned from a HYPO-thyroid into a HYPER-thyroid from the over dose. Hyper-thyroid people tend to be skinny and have heart problems. My thin sister who has the energy to exercise at a gym has this form of thyroid issue. No I did not lose any weight from this happening to me. I am a true hypo-thyroid, as I continued to gain weight through this episode! I sometimes wonder if the golfing doctor put me on the high dose of levothyroxine on purpose, because he personally looked down upon heavy (fat) people, and thought it would force me to lose weight. When I was in his office he pointed to my belly, and asked what am I doing about that? He had also asked if I was going to a gym to exercise. When I received my medical records from his office, I noticed in his notes that he had written, that I don't care about my health, because I don't go to a gym. ????? Hmmm maybe I am hypo-thyroid and have no energy to get off the sofa, let alone go exercise mister. My high blood pressure was right there in his notations as well, and nothing was ever done about it. For a year I walked around with hypertension needlessly, on top of the rattling effects of the drug overdose. My body was so beat up. I would eventually learn that all systems were now going haywire.
 

My endocrinologist took me completely off the levothyoxine and told me to come back when my hair started falling out. Oh did I forget to mention the hair thing? Just when I am trying to grow my hair out like an old hippie, it starts falling out from the thyroid problems, and then again later, temporarily from the new medicine. Actually as I write these recollections a few years later, I am having a severe bout of my hair falling out again. Fun stuff! It's everywhere! So in a couple of weeks after stopping the bad thyroid meds, the shaking and vibrating was gone. The blood pressure meds were helping me feel better too. I started to feel more like myself. I still was very fatigued. Eventually the hair started falling out and the fatigue increased. Time to go back to the endo!

My body had to come back to its own balance which meant HYPO-thyroidism. Then my endocrinologist would do what is normally done with hypo-thyroid patients and start a low dose of meds and see what happens to my body, by testing every 2-3 months. After this occurred I was started on 25mg Synthroid. Another important bit of information was found by my blood tests, and that was that I had extremely low Vitamin D levels. Vitamin D is not a vitamin, it is actually a hormone that has been misnamed. Normal is around 40-80. I was a 12. I was started on 50,000 units a week. In a couple of weeks I no longer had a problem going down steps! Low vitamin D hormone also causes fatigue and depression. Between the thyroid, the menopause, and the lack of Vitamin D effects, I am getting a triple dose of fatigue! No wonder I am always falling asleep! I am also supposed to be really depressed from all of these ailments. I was not, although I was frustrated, and extremely tired. I recommend highly that more people should get their D levels checked. Unless you live at the equator and spend a lot of time outdoors in the sun you probably need a little Vit D boost. Most people after checking with their doctor find improvement with the over the counter 1,000 unit dose of D3. So please look into this with your doctor and get the appropriate blood test. You will feel better!

I was told by other 'Hypos' that I had met since receiving my diagnosis, that in a year I would feel like myself again and my body would be in balance. For me it took two and a half years. For those two years, every week I had been to doctors, had lab tests and procedures. I am not kidding, every week there was something. So you see the need for a binder notebook to keep track of it all. I took off two weeks for the holidays! I needed a break from medical world! Because... Hashimoto's Is More Than A Cool Sounding Name.

During this year I also had a Colonoscopy. Loved the anesthesia. I am IBS inclined, but they cannot tell that from a colonoscopy. They learned I have diverticulitis which will come to everyone eventually with old age. No cancer in the colon is very good. Oh the recommendation from the digestive specialist... fiber, fiber fiber for anything that ails you in that area, and come back in ten years. Personally I also like using pro-biotics like "Pearls." I have now found something that works even better which I will reveal in Part 3 of this series! Looking back I can tell you that getting a colonoscopy is a really good thing, just for the horrible day before. The stuff they give you cleans you out thoroughly! Gets rid of a lot your toxins! A fresh start. 

Unfortunately my pap test at the gyno came back with pre-cancerous cells, and I had to have a LEEP procedure in the hospital to remove them from the uterus. Again loved the anesthesia and hot towels!  Like a spa treatment in the hospital. So I will be checked every 6 months for the next two years to make sure the cancer cells are gone. I started taking Remifemin for the hot flashes, and although my endo wanted me to go on estrogen therapy, he left it to my gyno to decide what to do. The gyno suggested starting with herbs and making the hormone therapy the last resort. Alas, the natural method would not work out for me.

For nine months the medical visits became every other week, instead of every week. Sadly things began to go out of whack again, and we had to address my known issues one by one. After two years of constant medical bills, we had a monetary issue. So I had to wait three weeks to get into the clinic, for the tests needed on my thyroid. Each day I waited... my body went downhill a bit more.

I am not complaining, as there are people with far greater medical problems than myself. A sweet friend had a brain operation over the past holidays and had to relearn to talk. That is serious. She also had to get married quickly to get on her hubby's insurance, because her insurance dropped her after this operation. Nice. Great system we got here in America. Not.

After a year and a half I hoped to have better news. I was unable to do the most normal tasks around the home. When I tried, my body had a freak out. Ben had to do everything. Now I could only sit... remain calm, or sleep. Here is a list of activities I tried to do that triggered my blood pressure to go way up... Swifer mop the small bathroom. Cut back a few rose bushes without bending over. One day I took a shower and washed my hair. Once I walked out to the yard to photograph a flowering tree. I walked around the house with my granddaughter. That Spring I walked across the parking lot into the flower department in Walmart, only to have to go back to the car as I became exhausted from that activity. Stopped at a food store with my husband to pick up a few items. Unable to do it and must find a chair, and then pay for it when I get home. Every time after each of these normal chores, I had to lie on the sofa with my feet up for hours, to calm my system down. Something is wrong with this picture. I was forced to be house bound. I could go out to eat because it is sitting in a car, then sitting in a restaurant. But I could not stand out on my porch with out experiencing extreme fatigue. I could make a quick dinner, and sit between items I was cooking, and that is the only thing I could do that was useful around our home. I also could not attend my husband's shows, or gig practices. I suppose people thought I was disinterested, because we were not telling most people what was going on with me. Just did not want to dwell on the topic, and give it any more power over my life.

We went to one of my new doctors about my blood pressure and twice she has made changes to my meds to try and improve my situation. Ben talked with a doctor on call one weekend during one of my severe episodes, and that doctor strongly suggested I get the estrogen therapy. The reason was I hadn't had a good night's sleep in 3 years. Sleep is very important and your body must go into deep REM sleep to make repairs. I was being woken every 1-2 hours by hot flashes. My quality of life was sucking. I didn't know what it was to get sleep at night. I called the gyno and he told me that yes I was the perfect candidate for the estrogen therapy, which he uses as a last resort. The doctor explained I would see relief in two weeks.

In about two weeks I only had a few hot flashes a day, and they were mild. Yeah! I had started to get 3-5 hours of continuous sleep. You know, It almost felt odd. Eventually I started to get 7-8 hours and my world changed! The REM sleep started doing it's job! Right now as I write this post, it's almost a year later, and I can say these pills have been wonderful. We have to go off of them now to see where my body is with the menopause thing. None of my doctors want me on these for too long, because of the breast cancer risk. We shall see... (NOTICE! My advice now is 'not' to take these estrogen therapy pills because I did end up getting a breast cancer diagnosis. That will be an entirely different story.)

The only lesson I could think of that I was learning during this time of stasis was letting other people do things for me. This did not feel normal to me. I was the eldest of 5 kids and the mom of the family. I had been a single mom that raised two children. I had my own business because I could only rely on myself. I was the man of the house doing the chores that needed to be done, since I was on my own, and my home looked beautiful inside and out. Now with my ailments the house got a bit messy and totally full of dust bunnies. With a toddler everything got piled upward, and out of reach, and not put any where. I had to let others take care of any outside work I would normally do.  

The effects of thyroid disorders produce a mind fog. Ben has learned all the meanings of "thingie." My mind could never complete a sentence, because it felt like I was always unable to fill in the blanks.  

What I needed were tests on my thyroid levels and Vitamin D levels. What happened next is a cautionary tale about modern medicine. I will write that information in Part Three. Please note: I will also be making a special announcement in that blog post!!! Oh, and a few of the people whom I told about my illness said..."Wow Hashimoto's is a cool sounding name for a disease." So I got that going for me!

Go To Part Three: A Victory Garden For Success

Go back to Part One: "The Unknown"

Disclaimer:I am not a doctor and this series is not to be taken as medical advice, so please consult with your medical professional about any medical issues you may be experiencing.


Digital Artwork; "Hashimoto's Sleep" at top of blog post and the detail from artwork near bottom, by Crystal Visions Art. Textures: Shadowhouse Creations, Model: Janna Prosvirina Kuoma Stock at Deviant Art.