Anemia, Hashimoto disease, aortic insufficiency, type 1 diabetes...just to name a few. This is my story of misdiagnosis

One life, one diagnostic story

This is my story: I almost did not survive the first day of my birth as I was born prematurely and weighing barely 1 kg. I remember being a few years old, less than 5, and going to the doctor and telling my mother that I wasn’t in pain so I didn't know why I was going. When I was 15 years old, I was found to be extremely anaemic and I was injected with iron, I spent the whole summer in bed. Anemia has accompanied me almost all my life. When I was 23 years old I was diagnosed with hypothyroidism due to Hashimoto thyroiditis and 2 births. I was not supervised properly with my medication until I told my doctor that 100mg of levothyroxine is a lot. Finally, with a dosage of 88mg, it became manageable.

I had a murmur in my heart, but they didn't detect anything at first. At the age of 32 I was diagnosed with medium grade aortic insufficiency... my uterus is removed at the age of 36 due to disorders and to avoid extra pressure on my heart.. Shortly afterwards, due to a hemorrhoid operation, type 1 diabetes was detected. My heart can't stand it anymore. It turns out that, as a child I had valves, but they stopped growing and they have to widen my aorta in the shape of a funnel to be able to give me a bigger valve. The specialist says that I don't have an autoimmune disorder because I am not celiac too. It appears it could be genetic as I also have 2 sisters with hypothyroidism and another with rheumatoid arthritis.

Personal situation: total incomprehension

Well, now it's the mitral valve that's failing, they hoped it would be better but soon I'll have to go into surgery. Everything is being handled except for the DT1. It is upsetting because I feel my friends and family don’t understand what I am going through and now I'm finally filing for a divorce. 

However, I am in a very good mood and I have a lot of desire to live. My glucose levels are stabilising and I have never needed to go to the emergency room, except once I gave a slight drop to 50. I did not notice that it had dropped and had spasmodic movements. I've had 3 episodes like this. However,  coca-cola has a quick effect on me. I think my state of anxiety makes the diet not work, they put me on a very strict diet and I was always low. I need to be at about 130 with my glucose level, at 100 I feel down, and at other times at 20 I haven't even noticed.

How to get out of the well, how to rise from the ashes

Now I’m finally coming out of the well. I believe I also have arthritis or osteoarthritis in my fingers but I am only seeing my GP about it. I am strong, I can admit that. I endure the pain, scoliosis, polyps in the colon, lazy eye...However, I continue on. I don’t deprive myself of anything, everything I have is forever.

"The spirit is the most important thing, when I don’t have it, everything gets worse".

When I'm in a good mood, I can handle everything. I always think that I won't develop another condition, that I've got the quota covered, but who knows... as I still can deal with more... in short, I am the personification of the phoenix, always rising from its ashes, I will have done it 8 times. At the same time, I'm 52 years old and I feel I can go through another forty years. Sometimes, I feel the doctors don’t take me seriously.

Well. This is my testimonial. Courage, patience and resignation to what I do and do not have control over. Always face the bad weather with positivity, is my advice. Hopefully, someone reading this also has some advice about DT1, it would be much appreciated. Thank you.

And you, what advice would you give to better manage type 1 diabetes? Do you suffer from more than one condition?