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

Published 22 Jul 2019 • By Andrea Barcia

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

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.

entrevista93

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?

avatar Andrea Barcia

Author: Andrea Barcia, Health Writer

Andrea specialises in managing online patient communities and writing health articles. She has a particular interest in the fields of neuropsychology, nutrition and sport.

Andrea holds a master's degree in... >> Learn more

1 comment


avatar
Unregistered member
on 19/08/2019

OMG

Your list of pathologies is nearly as long as mine??? See my testimonial.

I take 40+ tablets per day and a minimum of 6 insulin injections per day, an extra tablet on a Saturday and four extra tablets on a Sunday, an extra injection an a Friday lunch time and an extra injection every 28 days for my arthritis. Apart from that young lady I am fine. My philosophy is that "I won't let the B******d's beat me". STAY POSITIVE.

I suffer from Type II Diabetes, initially controlled by diet then with medication, and now with insulin thrown in as well?? Yes I am supposed to do this and do that and all will be fine?? Not on your nelly girl !! My blood/glucose used to be all over the place but I have eventually found that eating a diet with very few carbohydrates I have been able to cut my 'fast acting' insulin almost nothing. Maybe 30/40 units per week? It used to be up to 120 units per day?? My advise to you my dear friend is to be careful how many carbohydrates you eat. Living in Spain you should have very little trouble finding a diet that suits you, most consultants here say that a 'Mediterranean Diet' is the best for controlling your glucose levels. You can adjust the amount of bread and such like to keep you blood/glucose under control, because of the great variety of vegetables and salad products that are available in Spain?

I sincerely hope that I have been of some comfort to you and that you find that happy medium?

Myself and many others are available to chat to you and offer advise, or 'point' you in the right direction for help.

Warmest Wishes to you My Friend.                                                                                                                                                              Richard.    x                                                                                                                                                                   

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