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 (2.2 lbs). 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. I had to take iron by injections and 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 giving birth twice. 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 heart murmur, but they didn't detect anything initially. At the age of 32, I was diagnosed with medium grade aortic insufficiency... I had to have my uterus removed at the age of 36 due to other disorders and to avoid extra pressure on my heart. Shortly afterwards, due to a hemorrhoid operation, I became diagnosed with type 1 diabetes. At this time my heart was no longer able to function sufficiently. It turns out that as a child my heart valves had stopped growing; therfore, I had to have an operation as an adult to widen my aorta in the shape of a funnel to increase the size of the valves.

The specialist says that I don't have an autoimmune disorder because I am not celiac. 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. I guess everything is being managed... except for type 1 diabetes. 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 blood glucose levels are stabilizing; I have never had to go to the emergency room, except once when I experienced a a slight drop to 50. I did not notice that it had dropped and I began to experience 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 (blood glucose levels). I need to be at about 130 with my glucose level, at 100 I feel down, and at other times at 20, I don't even notice.

How to get out from the bottom and rise from the ashes

Now I’m finally coming out from the bottom. 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 acceptance to what I have and do not have control over. Always face the bad with positivity, is my advice.

Hopefully, someone reading this also has some advice about type 1 diabetes... it would be much appreciated. Thank you.

Do you suffer from more than one condition? Did you ever experience a misdiagnosis or a diagnostic error in your journey?

Do you have any advice to better manage type 1 diabetes?