This is a guest post, written by a thyroid patient. Mel wants others to be aware of just how life threatening hypothyroidism can be and the implications it can have.
I have tried everything possible as of right now.
I am on 700mcg of Levothyroxine daily, that I have to give to myself as a shot in the thigh, along with 200mcg of Tirosint and 120mcg of Cytomel orally. I also take NDT on top of this. My latest TSH reading was 218.71, despite such high thyroid medication dosage and my Free T4 level was undetectable, with a Free T3 below 1.0. I am not ready to give up but it is such a struggle to keep going daily. The only reason I have found is because of my husband and our seven children.
My thyroid was removed in May 2016 due to being hyperthyroid and having Graves Disease. A fine needle biopsy showed cancer, so it seemed the most sensible option to have my thyroid removed. I will not lie to you, nor try to pretend that I am not scared as hell. My thyroid issues have lead to the stage 3 kidney failure, congestive heart failure, extremely high liver enzymes which has caused irreversible liver damage and severe anxiety.
Plus more, just because we can’t control my thyroid hormone levels.
It has also caused my cholesterol to skyrocket to 487, so I have to do a special dialysis for my cholesterol and I have to do another dialysis for my kidneys. I had to have a port put in because they were doing 400mcg of levothyroxine infusions daily and my veins could no longer handle it. A few weeks ago now, I ended up in emergency surgery due to staph infection in my port, so they had to remove it. Two days later, I was back in the hospital with a secondary infection, so my incision had to be reopened and drained again.
I got my latest last lab results back recently and they sat me down together with my husband and told me there is nothing more they can do for me. They said that my body is slowing down because of my uncontrollable hypothyroidism. They said my life expectancy is anywhere from six to eight months and all they can do is continue my current treatment plan and hope by some miracle that something may change, but at this point their only goal is to keep me as comfortable as possible. On top of my thyroid medication, I also take pain medication, muscle relaxers, beta blockers, two different cholesterol meds, diuretics medication for the fluid retention due to the stage 3 kidney failure and congestive heart failure and what feels like a ton of vitamins and anxiety medications.
I have insurance but it does not cover all of my medication. My husband and one of my sons work so hard to pay for my medications and it makes me so sad to know that my nineteen year old son puts his life on the line every day, working in the army, just to help his dad pay for my medication. I could never ask for a better family or a more understanding son. We have to pay the portion the insurance does not cover and that is $5,481.04 every twenty-eight days, just to keep me alive, though body struggling. We have filed every grant possible, every financial aid there is available out there and even went through the pharmaceutical companies for the grants they offer as well.
Please don’t think I am telling you this just to make you or anyone else feel sorry for me. I just want people to know that there is always a story behind why someone might feel negative or down and out, or maybe that person is just feeling overwhelmed and does not want pity or to be told to quit whining. Sometimes it helps just to vent or get it off your chest.
I also want Rachel, who writes The Invisible Hypothyroidism blo, to know that if it were not for her website here, I don’t know where I would be today. I was not going to share this because I was not sure if you would even really care, but a few months ago when I stumbled across your blog, it saved my family so much pain and sorrow. So thank you for saving my life in more ways than one.
If you found this article informative, useful, helpful or in other words are grateful you stumbled across it, please consider helping me keep The Invisible Hypothyroidism running, so that we can carry on building a strong community, spreading awareness and helping each other. Running the site comes at the expense of my personal time and money from my own pocket. You can make a one-off or monthly donation to support me keeping this website going, by clicking the button below.
To get notified of all my posts, blogs and articles, like my Facebook page here: https://www.facebook.com/TheInvisibleHypothyroidism/
And follow me on Instagram.
I run a Facebook group, called Thyroid Family: Hypothyroidism Advice & Support Group. This group is for underactive thyroid/hypothyroidism patients only, and not medical professionals or anyone else. If you have any questions on living with hypothyroidism, or want some support, help or advice, please join us.
I also run a group for the spouses, partners and other halves of hypothyroid patients, called Hypothyroid Patients Other Halves – Support & Advice Group. This is for the other halves only and not patients.