It’s the charity Thyroid UK‘s Thyroid Awareness Week from the 30th September – 6th October 2017. Continue reading “Thyroid UK’s Thyroid Awareness Week 2017”
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.
Thank you so much Mel for your story. I really do wish you the best in your journey and hope that by selflessly sharing your story, it will open the eyes of others.
Today is the 1st September, which marks the start of Thyroid Cancer Awareness Month, an annual event that is the prime opportunity for us to spread awareness of the effects and the importance of early diagnosis and treatment of thyroid cancer.
It sounds mad doesn’t it? That medical professionals across all species, may know more and do more for animals with thyroid problems.
In July last year, I completed the 5k Color Run course, raising money for Thyroid UK, a charity that campaigns for and provides information and support to those with thyroid disease and related disorders. I wanted to help them in their mission to provide information and resources to promote effective diagnosis and appropriate treatment for people with thyroid disorders. As someone with hypothyroidism, it was really important to me.
The 5k went well and at a pub in the evening, while having a drink to celebrate my achievement (having hypothyroidism made the course difficult to complete), I visited the toilet. After coming out of the cubicle and washing my hands in the sink, I commented on the pair of amazing shoes the woman standing next to me was wearing. They were mega high and bright pink and sparkly. She explained that she was here for a wedding and asked what I was here for. I replied that I had done the The Color Run that day, going on to explain what it was.
As well as cold intolerance, where you are extremely sensitive to cold temperatures, heat intolerance can be a symptom of thyroid disease, too. With the summer upon us, this symptom can be made worse by rising temperatures outside. Continue reading “Heat Intolerance and Thyroid Disease”
On Sunday just gone, I completed The Colour Rush course in aid of Thyroid UK.
The 25th May marks World Thyroid Day, which is a great opportunity to be raising awareness on thyroid disease.
A few weeks ago, I explained how I’d decided to fundraise for Thyroid UK again this summer. Last July, I completed The Color Run and raised £437.50 including gift aid. This year, I’ve set a modest target of £100 and am being joined by four team mates, for The Fun Colour Rush, which looks very similar to The Color Run, but has a cheaper entry fee as well as being much closer to where we live.
After letting Thyroid UK know, who were very thankful and appreciative for it, they offered to send us some free Thyroid UK vests to wear over our official Colour Rush T Shirts, as well as some temporary tattoos, wristbands and trolley keys, which was really kind of them.
We’re going to look so geared-up when we hit that start line!
The Colour Rush will be a real challenge for most of the team, due to various health conditions, but we’ll be supporting each other round the 5k course, which sees participants showered in a different coloured powder at each 1k, meaning they finish looking like a rainbow with big grins on their faces!
You can sponsor me and my team here – https://mydonate.bt.com/fundraisers/teamfabulousforthyroiduk#.WLa64TlvZjE.facebook
I have used BT MyDonate over JustGiving, as they give the charities a lot more of the money raised. JustGiving take a big chunk of what’s donated.
One year ago today exactly, I took a photo of me holding a piece of paper that simply said ‘I am the face of thyroid disease’ and posted it online. Underneath the photo, I had a bit of a rant about doctors misdiagnosing thyroid disease, often inadequately treating us and explaining that thyroid disease affects people of all ages, sizes, ethnicity and backgrounds.
I’m doing it again this year, not only sharing that post in the hopes that it will raise some awareness on the symptoms, and mismanagement of thyroid issues, but also with a new post, that I hope expands on the issues I touched on a year ago.