I Now Have a Rash, or Something....

I have been told that if you have one autoimmune disease, it can lead to more. I am living in constant fear of getting something else at this point. I know I have TED (Thyroid Eye Disease), but have yet to see an eye specialist for that. Considering I am now paying 120-150 a month in just specialist co-pays ALONE, not including medications, or those kinds of things just for myself...I have put that dr. visit on the back burner for now. However, when I go, I will update you.

For now though, I have a rash. I have no idea what it is, but plan on making a dermatologist appointment sometime this week.
That brings up the annoying issue of when I go to my endocrinologist, he ONLY treats my thyroid NUMBERS, not the patient. So when I mention any other ailments or anything, he blows it over and back to the NUMBERS. So any extra help I have gotten has been me calling my regular doctor and having them refer me to yet another specialist. So I am in control, and I have to call THIS week. I have tried to capture my rash with pictures, and yes, even showed my endo...but alas, I could have been showing him a photo of anything...no acknowledgment at all i was even in the room. So here they are for you to admire...

The rashes, they come and go....very itchy and raised like bug bites in patches all over my arms, and my back is so itchy too I can't stand it. My stomach has it as well. Lotions and bath washes don't help at all. They turn into dry rough patches of skin after a week or two and are scaly to the touch. New patches come and go, this has been going on now for about four months...NO IDEA what it is, but it is so bad I am calling the skin dr. Monday. Will keep you posted on what I find out. 

For list of autoimmune diseases , go to this page:

http://www.aarda.org/descriptions-of-diseases/#Meniere’s%20disease

It gives the names, as well as descriptions...if you have an auto immune disease, please comment and share. OR, if you know what I have...please let me know your ideas. Thanks!!!!

Big and Small and Small and Big...My Weight

As promised, here my story goes with my weight issues. My weight struggle started actually before I was diagnosed with Graves Disease and Hyperthyroidism. As a child, I was super cute, but super chubby :)

Then as I lost the baby fat, I was a slender awkward preteen. Then, due to all the drinking as a teenager, gained some extra pounds, that turned out was hard to lose. Her I am at graduation. 

Then as if magically, after I had my oldest children...the weight seemed to melt off me. I was stick thin. The thinnest ever. I was down from 160 pounds at graduation to 106 pounds. The weight was so drastic, it prompted my doctors to run some tests to see if there was a thyroid issue. I past all the tests with flying colors. No explanation, I was just happy to be thin. Sure it came back, but my new normal appeared to be around 130 pounds give or take 5 pounds a year in my twenties. Here I am the year I was diagnosed in 2010/2011. 

And now hold onto to your hats, because in just a year and a half I gained the most weight I had ever gained (not pregnant)...I now weighed just under 180 pounds!!!

I know!! Shocking!

I did everything to lose this weight. I counted calories and went to the gym with my husband Dale. He was losing, and I was actually finding myself gaining weight after our workouts together. Dale would leave saying, "I am down another four pounds!!" I was up four pounds. I was frustrated, and no matter how much I wanted to feel happy for him (Because I was incredibly proud of him), I found myself more and more depressed and frustrated. So I quit going to the gym. I quit counting calories, I was done. I had to mentally prepare myself to be happy in my new body. This was such a struggle for me, who once gloated I could fit into my twelve year old girls size 16 (little girls) pants. I was to be doomed to be heavy and had to find a way to deal with it. Like it or not. 

I then got my thyroid out in January 2014. It was about two or three months after my surgery the weight started slowly coming off. I am now proud to say that I weigh around my normal 140 pounds. give or take a pound or two by weighing morning or night. I am excited to try to start working out again and being healthy...but what a journey, what a roller coaster for sure!! I am at that point, where I am happy in my skin again, and who cares if I work out and it doesn't produce results...at least I will be doing my best and taking my meds. My therapist suggest gluten free, lactose free diets. She also says to go hiking with Dale and get out there and walk with him. I am not sure about diets, I am still learning, but will keep you posted on what I find out and what starts working for me. Thanks for reading, and sorry it has been so long since my last post. So much has happened....I have so much to catch you all up on!!! Take care my friends! Stay safe and happy!

Follow up to itchy post....

Before I moved on talking about weight, I thought it would be helpful to offer some personal experience with some different helpful products and more information on it.

I wanted to offer you up some common symptoms of Graves Disease and the side effects of the medication that I have been on.

Some of the skin changes that I was experiencing are quite common with Graves, as well as hyperthyroid problems. Common side effects include,
"unusually smoother, younger-looking or velvety skin (due to rapid cell turnover.) Some people experience worsening acne, bruising, spider veins on the face and neck, blister-like bumps on the forehead and face (called "milaria bumps"), flushing in the face, hives, itching, vitiligo."-About.com

Some of the common hair and nail changes include,

"Excessive hair loss from the head and body is a common symptom. Other signs include thinner and finer hair, nails that easily break. Thyroid acropachy, where fingertips and toes swell and become wider, even clubbed, and onycholysis/Plummer's nails, where the underlying nail bed separates away from the skin, are also symptoms of Graves' and hyperthyroidism."-About.com

Although, some of the changes in each person may differ. I found many other helpful informative links online that are there to help thyroid patients with information on a wealth of problems. Many forums provide people answers to some of their common questions. If you have any questions, I hope that you find some good factual advice and answers right here on the world wide web.

The medication that I was on to help control my overactive thyroid was Methimazole. The side effects from taking the medication in relation to my hair and skin was,
"Methimazole is generally well-tolerated with side effects occurring in 3 out of every 100 patients. The most common side effects are related to the skin and include rash, itching, hives, abnormal hair loss, and skin pigmentation. Other common side effects are swelling, nausea, vomiting,heartburn, loss of taste, joint or muscle aches, numbness and headache."-Medicinenet.com

Again, many experience a wide range of problems, it tends to vary in each individual. 

The relief that I have found for my hair issues was using moisturizing shampoo and conditioner. The brand that works best for me and helps with my dryness is Aussie Moist. I find it to be cheap and effective, although there are many other moisturizing brands that are more costly and probably work better, I find this to be the best for my budget. There are also brands of shampoo that you can buy to help with hair loss, although they tend to be pricey, and hard to find in any drugstore. I have also found a few vitamins that can help and different herbal remedies to help with hair loss as well. I use a hair, skin and nails vitamin, although when I asked my doctor, she shrugged her shoulders. 

For my skin, I use any moisturizing lotion, I have been using Olay, but there are many different brands that help when used daily and often. Avon offers a good hand lotion that I recommend, it helps tremendously with cracked dry hands. Especially when my hands are washing dishes, cleaning, and stuff around the house. Along with lotion, I also use Dove Deep Moisture in the shower to help keep the dryness down. It works awesome, and again, for my budget is very cost effective. 

I also learned from the dermatologist that my son goes to, not to use chap stick on your dry lips. If you are looking for moisture, chap stick will only dry them out. She recommended using Aquaphor for your lips, I tried it, it works amazingly. I highly recommend!! 

These are just some of the products I find helpful to get through my days. You may try these out, or try by trial and error on your own. Products work differently for everyone, so find what works best for you!! 

If you do find a GREAT product and want to share, please comment on the post and let me know. I love every one's idea's, and would love to try something new!!

Itchy, Dry and Bald Spots...OH MY!

Let me start by saying in the last post, I don't know where I am now...Currently I feel I am somewhere in between with my weight. I gave up trying to figure it out. Right now I am happy just staying happy. Happy just trying to maintain a balance in my moods, health, and overall wellness. My profile pic and surgery photos, pretty much say it all about my CURRENT status.


Growing up and in middle school/High school, I never really put much thought into my skin and hair.  Other than trying not to get picked on in middle school for having greasy short hair with over grown bangs that is. Pretty much as a child I had stick-straight locks, that if I went without washing every single night would turn into a mess of greasiness...OH the years of sweet adolescence!! My face went thru breakouts, some weeks were worse than others, I had terrible skin throughout school. So yeah, trying not to get picked on and hide behind others was a daily struggle. Blending in with scenery was hard most days, cuz my problem seemed to hit before all the other kids did...so here I was a broken out fury of zits while all my peers still had smooth baby-glowin' complexions....yay me.

It wasn't until ninth or tenth grade I began to clear up a bit, with only an occasional breakout. I maintained my oily skin with a heavy layer of powder and this helped my self esteem. I also tried to keep up with my showers and started growing out my hair. I found that if I permed it, it helped with the oiliness, and gave me a softer less harsh look. Pretty soon I blended in pretty well in my high school surroundings. I wasn't much more than average looking to say the least, I admired those girls in school who could spend five minutes in the mornings getting around and look amazingly beautiful. It took me about an hour just to look presentable.

I then had kids, and found my hair growing and chose to experiment a bit with different looks. Once I even bleached my hair a nice tonka-truck blonde and raced to the store to buy some brown to tone down the nice orange aura I had created for myself. I would change it up, go from short to long, and always seemed to have pretty nice hair, despite the abuses I put it thru.

After being diagnosed, all hell broke loose on my hair, nails, and skin. Holy Heck did it ever!! At the time, I had really long hair. I started taking my meds daily, we were also living in a new double wide that held a really nice sized tub in the master bathroom, so I would often take nice hot baths daily, instead of just jumping in the shower.

Soon, after washing my hair, I would sit in the bathroom covered in my own long locks. Literally COVERED from head to toe. My hair was falling out. I could sit there and pick out all the hairs floating at the top of my bath water and off my legs and arms for twenty minutes and still not get them all out. I then would dry myself off, pick off more hairs to lotion, wrap my head in a towel and get dressed. Then began combing out my hair. My brush would have a big huge gob of my hair, so I cleaned out the brush with my hand and threw it in the trash. Goodbye hair.  After that, I would have to take my fingers and run it thru again just to get out the loose ones that still hanged all over from the comb-out, throw them in the trash and pick off my shirt (front and back). This was a daily routine.

Forget blow drying...I found if I blew my hair dry, it would be so dry by the end of it, I couldn't find enough hair oil to get it to look normal. I GIVE UP. So air drying would have to do, this would become my new habit. Some would find it embarrassing to go out in public with still wet hair, not me...embarrassing would be to go out someplace and have my tumbleweed hair. Most stylist even assumed that I was over dying my hair. So NOT the case. I found myself having to explain to everyone who came in contact with my hair to pardon the dryness, but I have GRAVES. Then I would have to explain to most...because they never heard of it.

Embarrassing to me most of the time, was cooking, cleaning, or being in public and having my hair fall over the place. In food, on them, on chairs I would sit in, what a mess.

Long story short, I cut it all off.

My nails, have always been dry, but I have found that they are dryer now and flake off easily. Like the top layer...so no manicures for me. I really don't feel like having to explain, yet again to another professional...why Jenn is such a mess. I will just lotion up everyday, paint them myself, and deal with it.

My skin is now very dry. Especially my legs. Most of the time I itch so bad they bleed, so summertime shorts are out of the question, unless I have been very generous with the lotion. My face is patchy, it varies so much from dry to oily, I give up and just use soap. If I use anything other than that I get flaky spots on my nose, around my nose, under me eyes, and on my cheekbones. So I try to keep it minimal. I don't dare use moisturizer, or I would be sure to get zits like nobodies business.

So there you have it. I have avoided being bald, literally cried over my hair while sitting in the tub, and sometimes look like a leper. I envy those days I took those things for granted. I also wish that more stylists and professionals in the field were more knowledgeable about those things. For now, I will say good bye for today....tomorrow I will talk about weight. Enjoy your day!!!

Hair, Skin, Eyes, and of course...Weight....

For my next topic, I was going to talk about a few noticeable things. Hair, Weight, Skin, and Eyes. However, there is so much to say about all of these things, I will be breaking them down into different topics the next few days. In the meantime, I have some photos to share with you in a timeline sequence, so you can get an idea of what the past few years have done to all of these for me.

The photo above was taken a few months before I was diagnosed in 2010. 

The photo above was taken in October 2010 before I was diagnosed.

The photo above was taken in the winter of 2012, "Remission"

The photo above was spring 2013 "Remission"

My Story, up until recent...

In 2011, I had a regular physical scheduled with a new doctor in my area. The original appointment that I had, I wanted to cancel, just because I simply had so many other obligations that week. If you have a family of 4 or five, you can understand when I say that usually your own needs come a close second to that of others in the family. I felt that my health was good, and would reschedule for a later date. The day came and I went to my appointment, as my activities allowed me a few hours to kill, and the encouragement of my husband of course made me go. I got to the office early, as suggested by the nurse on the phone, filled out my packet of information and handed her my health insurance card. Just a regular visit, I supposed.

I had not gone to a doctor, other than my gyno the last couple years since the birth of my youngest in 2009, so I was a little anxious to see about other issues. I needed an epi-pen for one, My husband camps in the summer so I figured I could go my often with him if I had the safety net of an epi-pen for my allergy to bee stings. I had also wanted to talk to the doctor about some nicotine replacement options for myself, I was eager to quit my bad habit. So other than that, I figured smooth sailing.

They called me to the scales, and then onto the room for my blood pressure and temperature readings, and told me to wait a bit and the doctor would soon be in. I had never been here before, and they all seemed pretty nice upon first meeting everyone. The office was nice too, just recently built and still had the "new" smell. As soon as the doctor came in, he asked me a few questions about what brought me in, and then he began his exam. Routine stuff really, then he came to my thyroid exam. He felt my glands, as I has done to me many times before, and he stopped. He asked me if I had always had a thyroid issue. I said no, and he became alarmed. He told me that my thyroid had a pretty good sized goiter, and was enlarged, he was sending me for tests.

A week or so later, after all my blood work came back, the doctor called me on my cell. My thyroid levels came back as zero. He told me he suspected that I had Hashimotos, and was the lowest thyroid levels he had seen. He was sending me to a specialist right away for further testing and treatment. He set me up with an endocrinologist in my area.

I had to wait about a month to see this specialist, and didn't quite know what to expect. She was kind, and personable. She looked at my records my regular doctor had sent over, and suggested no diagnosis yet, she wanted to do more testing. She had a Thyroid Uptake test ordered, with radioactive iodine in pill form, and also more blood work. She said that we would then see what the tests said, before she diagnosed me.

The tests came back, and she had a chance to see the images from my thyroid scan (ultrasound). It was then that she said, it was not Hashimotos, that I had Graves Disease, and my thyroid levels were now thru the roof...hyperthyroid. I was sent home with pills and so many questions. How could it be that? My levels were ZERO, then to be skyrocketed??

I was on methimazole 5 mgs a day and returned back to see her once a month. During this time, I was also busy being a mother to my three kids, enrolled in college classes online to earn my associates, as well as trying to hold down a job. EVERYTHING was suffering. I began my college classes with a pristine grade average, and my grades and concentration fell to flat lined status. My work life also suffered, trying to juggle a million things with no arms, will do that.

Soon, I returned for a normal visit with my endo, in May 2012, she told me I was in remission. Remission??? I felt like crap, had a million symptoms, my brain was still scattered, and my energy was still a zero, yet she said remission. She told me that I would not come back to her, and to stop my meds. I was good to go according to her. Should I feel happy? Should I feel relief?? I was numb.

So, I was told to follow up with a regular doctor if anything came up, and sent on my merry way. Days came and went. I had quit my schooling with just two classes to go, I could not concentrate. I quit my job to try to focus more on family and school work, I was scared. I was at home, but my housework was falling behind. The messes and oils were piling up. My moods went from heavenly to hell daily, sometimes more or less. I was sleeping on the couch, and not with my husband. With his work routine(he was lucky enough to have a routine), he went to bed at 10pm every night, no later, no sooner. Myself, I would literally lay on the couch wide awake, with a remote in hand till 5 or 6 am...alone watching bad reality TV, or whatever movie I could find. Finally falling asleep at that time, then wouldn't wake till 2 or 3 in the afternoon. I'd get up putter around for an hour or two, dishes, make food, pick up, thats it. Then at 7 at night...back on the couch. This was my new self. I was depressed, crazy, and alone...maybe not in a physical sense of being alone, but alone with my grief over the death of myself.

In January 2013, I couldn't take it no more. I was either to go back to my regular doctor or lose everything. I was in remission tho, so YAY??
The new regular family doctor told me he would run some tests, after I told him my problem, he was quite concerned. I was to follow up with him in his office a week later.
At the follow up visit, he told me that my thyroid levels we extremely high, he himself had never seen levels quite that high. He went ahead and prescribed me more methimazole, at 10 mgs a day....until he could get me into see a new endocrinologist. GREAT.

I went to my new endo appointment filled with hope. I left to a drive home in tears. Why is it that endocrinologists, come in, talk about numbers, then walk out..and send you on your way?? UGH!!!
I was going to just take my meds, and I would call him with my questions. I called when I got home right away. Did he have a plan for me?? What did he think?? Idk, I was frustrated. He answered a few questions for me, so I was happy I guess.

My time with this new endo was good, so I am still seeing him. In October of 2013, he sent me to a cardiologist because he said he thought I was having atrial fibrillation...The cardio did some testing too, and sent me home with a plan to have a heart monitor on for two or three weeks to monitor my heart rate all day, everyday. I wore it to work, in sleep, everywhere..except the shower. A few weeks went by, and I could finally take it off, and I would soon get the results.

The cardiologist told me, I was ok. My heart was structurally good, and he could see no reason why, I would not be okay. I just had an irregular heartbeat which is common with Graves. My endo seemed happy about that news, and suggested I have RAI or my thyroid removed cuz as he put it, "You only have one heart." He was right. So after much discussion with my husband, I was soon scheduling my thyroid removal surgery.

I had my surgery on January 31st, 2014. It was okay, but I had some sickness associated with the anesthesia. My calcium levels were down, and had to stay in the hospital for a night. They staff tried to have me take some pain meds, but I opted for just some Tylenol. (I am also in recovery for addiction, and opt out of anything that I deem a danger to that). I did fine, no pain, just down for a couple days is all, tired...very tired and hard to breath.

                                                            (me the day after surgery)

So here we are, its now April 2014, and I am now thyroid free, hypothyroid permanently, on Synthyroid 150mgs a day, taking calcium supplements daily and still have Graves Disease raging in me. I also still do not have a voice, and liken the effect I feel in my neck as someone walking around with me all the time with a tight squeeze on my throat. My last visit with the surgeon he said I might now have a voice for up to a year, and go back to him in 6 months. I see my endo in two.

(Me one week after surgery)

(Me two weeks after surgery)

(Me two months after surgery...today)

So that's my story, I am anxious to discuss many topics on here with you and share some photos too. It is so nice to not feel ALONE, I would be happy to have you come along with me and my family......