Amanda Jackson Amanda's Journey

First post: 8/7/2017
Welcome to my CaringBridge website.  I am  using it to keep family and friends updated in one place and to tell my story in hopes it will help others to advocate for their own health and not rely on doctor's alone to diagnose/cure/treat.  Last summer I was in probably the happiest place I've been in recent years, yet I wasn't my normal energetic self.  I will try to explain it in chronological order, but to be perfectly honest I didn't pay attention to a lot of those first "little" symptoms and I certainly didn't tie any of them together for months.  So here goes:


At some point last summer I started gaining weight.  I thought it was simply that I was in a relationship and was very happy and you know how people always say you get "fat & happy"...well, I just thought that was the case.  We were cooking out and eating more, but I was still very active and wasn't eating enough to justify that type of weight gain.  I know me, and I have struggled with my weight before, but looking back on it I have had these types of weight gain in only three other periods of my life - both pregnancies (bed rest included) and at age 19 when my thyroid went haywire for about a year in college.  Other than this, I've typically not been more than a 10-12 pound fluctuation when I get lazy - so I know when I 'deserve' a gain and how much... and when it's not realistic.  However, I fully understand that doctors hear this regularly and we humans have a hard time accepting responsibility for our actions so I am not blaming this as an oversight.  I should have fought harder when I gained 30 pounds in 4 months...that was absurd and not typical of me.  


Additionally, I had bleeding gums.  I went to the dentist and mentioned this and was told I need to be sure to floss well and was given a rinse.  This was one of my bigger errors in not advocating for myself. I have an amazing dentist and I call myself the floss nazi...I have floss everywhere, I floss more than anyone I know.  Why I didn't say anything is beyond me.   Fortunately, my dentist is amazing and when I mentioned the issues again, he was a huge influence on me advocating for myself.


Also separately, I was feeling tingling in my finger tips.  Just one to start, then to others on the same hand, then both hands and my toes.  Initially I thought I just had a pinched nerve so I was going to the chiropractor.  So in my mind I'm thinking I have three separate issues and am seeing three different doctors and I didn't let any of them know about the other issues.  The tingling and numbness just continued to get worse over the coming months.


On top of these things I was losing a lot of hair, to the point I felt the need to wear it in a ponytail daily.  I was also incredibly tired, sleeping 16 hours a day and unable to go to work.  Those who know me well know this is NOT ME!!!  By December I began having numbness and tingling in my face along with a few other strange sensations (cold water running down my scalp) that really scared me.   I also had an episode of Raynaud's (blood flow constriction turning my finger tip completely white).   My body temperature was 95.7 - 96.3 consistently for 6 weeks....I just could not get warm.   I began doing research of my symptoms and I really felt like the combination of them pointed to thyroid.  Not typical, but still there were so many symptoms that pointed to it.  And along with my history of female problems it just pointed to something hormonal.


It was around this time I talked to my dentist again about my gums continuing to bleed and the other issues and he was the first healthcare professional that was adamant that it was very likely hormone/endocrine related.   I think I only had the nerve to talk in this depth because he was my friend as well and he knows me.  This gave me the encouragement to push this theory even more with my doctor.    My GP was willing to do blood work, but just the normal TSH.  I should have advocated more for myself, I've read so much stating you should demand getting the other tests for T3 & T4.  I mentioned it, but as soon as I was told TSH was the gold standard test I didn't want to question my doctor a second time.   I did however get a little kick in the butt from a dear cousin who is an RN and she (not very patiently) told me to march myself back into the doctors office and ask for what I wanted.  This is so unlike me, but she convinced me that if I don't advocate for myself no one else will.  I don't ever want to be THAT patient, the kind that thinks their issues are worse than anyone else's or that I am somehow special, but I do know me and I knew something was wrong.  


Obviously my doctor and I were primarily concerned with the neuropathy symptoms and he went down the path of checking for MS and said we would look at a referral to an endocrinologist alternately.  I did ask to go ahead and get on the books for the endo because it takes months to get in and my doctor had the full blood workup ordered.   After a CT scan, two MRI's and several months wait to get into a neurologist I was given the all clear.   Unfortunately I had another 4-6 week wait for the endo appointment and I won't even go into that here (yet), but he bordered on negligent.  My symptoms weren't "exciting" to him so he spent all of 5 minutes with me and drew me a pretty picture of a thyroid and told me why it wasn't my thyroid and why he "hates doctors that want to blame everything on the thyroid."   I can't even talk about this healthcare fail yet, but I am in the process of writing a letter to him, his employer and the medical board so that he hopefully learns that all cases aren't texbook and people can have issues even if their bloodwork isn't exciting (read "easy").  Needless to say I felt that I had hit the end of the road and all my hopes lied with this "professional" so I sat in the car and cried before heading back to work.  To go back to the office and tell them again that nothing was wrong with me was a huge let down.  I looked fine, I sounded fine, but I was far from fine.  I didn't want them or my family to think I was just being a hypochondriac or worse yet, lazy.  Fortunately, they know me and believed me.  That's the only thing that kept me going, but at this point, I was done with trying to figure it out. 


I was about $4000 out of pocket for medical bills and I just didn't want to keep trying.  The symptoms were subsiding and I was productive enough to get through a work day again so I didn't want to continue on, but I did talk to my doctor again about the thyroid things I had read.  Again, I know many doctors probably think "oh another person who read it on the internet and now they think they can be a doctor."  I hate being a patient that annoys the doctor, but at this point I didn't care, I said what I wanted to say and what I thought and guess what???   He was so receptive!!!  Why hadn't I done this before?!  He told me he was stubborn and wasn't giving up on this and he sent me to a different endo and while she agreed that my results weren't screaming thyroid disease, I did show changes in previous levels and I did test positive for autoimmune (though just one single number above the limit).  


This doctor was soooo different!  She didn't send a form in the mail to read before seeing me and make up her mind.  She explained things.  She listened.  She felt my thyroid and felt the nodule warranted an ultrasound.  It showed 4 nodules over 1cm (5.2 in total and your thyroid is only 4-6 to begin with) and she ordered a biopsy with one yielding enough cells for a result of suspected carcinoma.  Within two weeks I had my thyroid removed and a diagnosis of papillary thyroid cancer.   I go through Radioactive Iodine Treatment after Labor Day so I'll update more of that later, but that's my plan of action for now.


No one wants a cancer diagnosis, but it is very curable (the cancer part) and I was thrilled to have an answer and a plan so that I can make my way back to normal.  I miss my energy level....thyroid disease can keep my hair, my skin can be dry & my nails brittle, I'll stay cold (and hot)...just give me back my energy & enthusiasm for life again.   I am so glad people know that it wasn't just me being lazy and getting fat for no reason, I hadn't lost my love/passion for my job, I hadn't turned into the antisocial person I appeared to be...I am still me, and I WILL BE BACK!


Thank you's don't seem enough for the amazing family and friends I have, but I do want to thank my doctors who listened and didn't give up and everyone who visited, called, wrote, texted, sent food/flowers/gifts.  There are so many people who just simply checked in and let me know they cared and it meant the world to me.  A simple gesture means more than you can imagine.  





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