My Journey

I want to tell you about a very long journey I've been on. It started just after Christmas ,2013. 

I started having these very, strange symptoms that I'd never felt before. I would absolutely burn up without a drop of sweat off and on all day long. Then other things started happening. My body was in over drive one moment and the next I could barely walk. I went to my Primary Care Doctor for my six mos. checkup and I had my usual Labwork done before my appointment like I usually do on my Thyroid, Cholestrol, etc.. Since everything looked ok he brushed it off by saying it was my nerves. In other words I took it he meant all in my head. I've had Thyroid Disease (Hypothyroidism)  for 23 years and made sure it was always checked and over the years they've adjusted my meds. accordingly. I noticed in  my copy of the Labwork they had done my T3 and T4 was off some. I questioned him about it and he said it wasn't bad and not to worry. 

Meanwhile my symptoms got worse and worse to the point I was getting very worried. I called him and asked him to do more Labwork. He decided to send me to a Rheumotoligist to see if it might be some kind of Autoimmune Disease. The Rhumetoligist did his own Labwork and everything came out good except my body was virtually empty of Vitamin D. He said that can cause serious problems alone and he put me on 50,000 Units once a week for 8 weeks but nothing improved.
 During all this time I kept doing research on my own. I goggled every Web Page I could, trying to find a solution. By that time it was the middle of July, 2014 and I was getting more sick by the day and what I found about the Thyroid was very scary so I asked my doctor to do more Labwork on my Thyroid, Hormones and anything connected to it. He did the Labwork and uncovered that my Antiobodies connected to my Thyroid was extremley high and my hormones were showing I was in Full Blown Menopause. I said, "Hold it and back up here. I had a Hysterectomy 17 years ago, how can that be and further more what in the heck is Antibodies and why are they so high? " His answer was to send me to an Endocrinoligist and let her figure it out. I traveled 2 and a half hours to an Endo that checked the TSH only on my Thyroid and never even bothered to check the Full Thyroid Panel, FT3 ,T4, TSH, and the Antibodies, TPO (Thyroid Peroxidase), Thyroiglobulin Antibody, and Thyroglobulin. 

The only other thing she was interested in was my Adrenal Glands and she gave me several plastic jugs to collect urine in 24 different hour periods and turn them into my local hospital lab and they were to send her the results. 

I waited for results and all I got was that my Adrenal Glands were ok and my TSH was good but she was gonna lower my Thyroid Med. ,and for lack of a better excuse she told me that as we grow older it looks like we may need more Thyroid Hormone but we actually need less. 

Needless to say, I was back to square one and fired my Primary Care Doctor and hired another one. She did more Labwork and run an Ultrasound on my neck and finally I got answers. She told me I had one of three types of Thyroiditis and the worse being Hashimoto's . She sent me to another Endo and she confirmed it was Hashimoto's and there wasn't anything to be done. 

I took more matters into my hands and set up my own appointment with another Thyroid Specialist that I'd heard nothing but good things about and got in with him. He told me I had the worse kind of Hashimoto's and my Thyroid was so inflammed that it was burning itself out in my neck and had to come out. He said the TSH is your intake. That means how much meds. you're taking in and although most primary care doctors like to see it at a 5 and there should be enough meds. going in to support that crippled and diseased Thyroid. He said he liked to see it stay at a 3 and no greater than 4. He raised my meds. some more till he could get the surgery set up. I asked him how long it took to get balanced out on meds. after the surgery and he told me not to long. I came away with the best feeling of peace I'd had in a very long time. But oh my goodness what lay in store for me was torn out of the book. It seems another horrendous chapter had just begun..

I had my thyroid Gland removed November 6th, 2014 (Full Thyroidectomy). I was on 100mcg. Of Synthroid at the time of surgery and I went back to see him a week after surgery for my Post-Op and he raised my Synthroid to 150 and went high as a kite (Hyperthyroid)  I've sled down the ladder all the way to 50 and now I'm on my way back up the ladder and still feel nothing but Hyper. When you have your thyroid removed you're considered Hypothyroid the rest of your life but I've yet to feel Hypo (low) . My doctor that did the surgery and worked with me till a month ago gave up and sent me to another Endo and he's finding out he's got his work cut out .
To top all of this I was supposed to have my Gallbladder removed the 17th of this month and when I went for my Pre-Op my numbers were running extremely high and they refused to do it till the Endo could work with me some more. So now I'm dealing with that as well and wondering how on earth they'll get it out. The ones I've talked with that has had their thyroid removed tells me it can take up to 9 to 12 mos. and the rate they're going with me even longer.

So... to say this has been a journey is an understatement. I call it a Living Nightmare and ongoing. I never know what to expect from one day to the next. I know this post is awfully long and might not even be of interest to some since they don't have Thyroid issues. I've found out that well over half the population has it and doesn't know about Antibodies or what the Thyroid tests mean... But I wrote all of this for several reasons ... Many people have been praying for me and still many prayers being lifted everyday and they are being felt and answered. For that I'm humbly grateful to each one. The second reason is I want to let people know what this terrible, horrendous disease can do . It takes away so much of your life and you can never get it back. I tell everyone I come in contact with to be sure and keep a watch on your Thyroid. If you have Thyroid Disease make them check the Full Thyroid Panel  including the Antibodies every time they do your Labs and Educate yourself as much as possible. Look up anything and everything and read and more read. The best Website to go to is The American Thyroid Association... When the Antibodies go so high it means something has went wrong with your Immune System and it attacks that little, vulnerable Thyroid Gland. Maybe it's something as simple but yet so important as lack of Vitamin D.. For 23 years I never knew about Antibodies and they had never been checked. If I can help one person and keep them from going through what I have it  means the world to me. Take it on yourself to do what's right for your body, cause we're the ones that have to live in it. Doctors only do so much and you can never depend on them to tell you what you need to know.

Many thanks for reading and most of all for your prayers and understanding. I will be back to visit ya'll soon as possible. I can't stay on the computer for long periods of time and it has taken me several attempts back and forth to write this.

 May God Bless each one of you. ~Susie