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

Discover the testimonial of a member of Carenity Spain. She has made us a part of her experience through this very sincere and emotional testimonial in which she tells her story of different diagnoses.

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.

entrevista93

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?

avatar AndreaB

Author: AndreaB, Community Manager

Andrea is a marketing and communication specialist who has worked in the wellness, tourism and health sectors. Now the Community Manager of Carenity Spain, she wants to help patients find answers to their questions or simply get support.

Comments

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on 7/31/19

I am sorry you have gone through and continue to go through all of this. I have rheumatoid arthritis and hope this is not what you have. I am in chronic pain... so I guess I have more than one condition... but my rheumatoid arthritis is the reason I am in chronic pain.