Wednesday, March 25, 2015

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


  1. Hi Susie, I have followed you through all of this --but reading it all in one post truly makes me ANGRY... So much of what you went through was caused by the DOCTORS. I hate it when doctors don't 'care' enough to follow through and believe us when we talk about how we feel.. So many of them make us feel as if we are nutty and like you said, it's all in our heads... There's truly no excuse in that.

    Glad you finally got some help --even though your journey is STILL not over. AND I'm glad you have shared this with others who might be suffering from something similar.

    I have had a terrible time with my Primary Care Physician... I had a fantastic one and she moved away... I'm very unhappy with this guy... He won't listen to me and what I want/need... He is very uncaring... I really need to find another one.

    Susie, You have been and will continue to be in my prayers... God Bless You.

    1. Thank you Betsy. Yes the doctors really did me in but I will overcome in God's time. Hugs to you.

  2. Hello Susie,
    I'm so sorry you're going through this. It makes me want to take my vitamins today when you talked about vitamin D. I just said a prayer for you, Susie. You are a wonderful and special person to keep us informed with this information. Thank you.

    I hope you feel better, Susie, I truly do.

    love, ~Sheri

  3. Susie, my heart just breaks for you. I felt like things were still bad because you hadn't written. I know very little about the thyroid gland so this post was informative. I haven't been to a doctor, other than the dermatologist, in about 30 years; I just keep going on luck I suppose. May God give you strength to endure. Love you ~~~Charlotte

  4. Susie, I read this with great daughter Karen is having her thyroid removed this May. Her twin had hers removed because it was cancerous. Which after being removed and getting check ups she was found to have breast cancer. She had chemo and a lumpectomy. I am going to have Karen ask her Dr about that full thyroid panel workup. In the mean time dear Susie, you are and will be in my prayers. Love you, Susie

    1. Thank you Susie. I'm sending up lots of prayers for both of your daughters. They may do very different then me. They are both in my prayers. Love you too.

  5. Dear Susie, you are always on my mind and in my prayers daily...I can't answer why God is allowing this in your life, but I do know that the Lord Jesus makes anything bearable...Right now I have several friends who are suffering through various illnesses, and all I want to do is encourage them all that comfort comes to us when we need it...and it is indescribable how the Lord can bring blessings out of our trials. (All things work for the good for those who love God and are called according to His purpose).
    I hope you do find some comfort and relief from this terrible disease, my sweet friend! Thank you for helping us to understand all about it...It certainly looks like you have been diligent to stay proactive in your treatment...You are a smart lady!
    Blessings and love...and restful days ahead for you~ ((Gentle hugs))~ Lisa

    1. Thank you Lisa. Yes, God is in control of everything and we will prevail. Lots of Blessings and hugs to you as well. I know you've had a rough battle yourself. xo

  6. Susie, I am so sorry you have had to go through all of this. I know it has been such a difficult time for you. I will keep you in my prayers. Thinking of you.

  7. Thanks, Susie, for the comment on my "friends" post today. It was nice to see your face this morning. She lives in another state and I don't get so see her that often, maybe twice a year, but it's always fun when I do - it reminds me of the good old days.

    Have a good weekend.

    love, ~Sheri

  8. I did not realize that you had to go through so much. You must be really really tired. It is not really fair that patients have to go from doctor to doctor before they can find for sure what the problem is for their symptoms. When you said that you get really energetic sometimes and then sometimes you can barely walk, I realize that I used to feel that way before I was diagnosed with diabetes. Now that I am on medication, I feel an average amount of energy and I am careful as to how much exercise I do.
    Thank you for visiting my blog. I did not turn the computer on for .the last couple of days. Really got busy at work.
    Please take care of yourself. My family's nd my prayers are with you.