Hello, sorry if this isn't the right place to ask about this. I do not have a Turner syndrome diagnosis. Trigger warning too for discussions of health including mental health problems and also fertility and children.
I have recently discovered from reading my medical records that I was suspected as having Turner syndrome in my infancy. A Buccal swab was negative and that was the end of it.
I was born prematurely and had a number of health issues through childhood including:
Constant and debilitating ENT issues that were eventually mostly resolved by intravenous antibiotics in my mid twenties. I do have a perforated eardrum to show for it and hearing loss on one side. I concurrently had serious issues with thrush from childhood until my mid twenties but that could have been the repeated antibiotics.
I didn't start my period until I was nearly 17 ( which noone every told me maybe wasn't that ususal!) and they have been irregular ever since, masssively at first with 6 month gaps, although that has inproved with age weirdly (anything between 23 and 160 day cycles, 260 days after a miscarriage).
I have issues with managing my weight and disordered eating, anorexia in my 20s and now binge eating disorder.
I have had long term low T4 between 8 and 10 picoml (confirmed by medical records although this has been largely ignored as my TSH is normal, trying to get anyone to listen that im freezing all the time and have a beard and clearly have a hormonal imbalance has been an actual nightmare).
Behavior and social issues and have recently been diagnosed with ADHD and the practitioner at my assessment indicated I should also be assessed for Autism, not sure i'm up for the fight to get onto a list though and medical settings make me deeply uncomfortable.
I also got diagnosed with Fibromyalgia at 37 due to repeated dizziness, palpatations, headaches, ankle swelling, pins and needles and a variety of other unpleasant symptoms like bleeding between periods etc.) which feels a lot to me like uh, we don't know what causes all your issues ( that we think are largely invented) and so we will stick you with a fibro diagnosis and send you on your way.
I did eventually have children, two in my late 30s, which is amazing as I had always been told i would struggle to carry a pregnancy because i have pcos and struggled with obesity.
I have recently been trying (again) to get answers about my health and so requested and read my full medical records and discovered these discussions from childhood, I recognise that i am most likely grasping at straws but is there any merit to asking about Turner syndrome? Is it even a possibility after all this time? From what I have read some of my experineces (those i have chosen to describe in this post) are potentially similar to the on paper experineces of people with this diagnosis but recognise there's more to that lived experinece than 'symptom matching'.
My periods have been much more regular (28-36 days) since having children but my hormone imbalance, mood swings and thyroid related symptoms are if anything worse.
I get I sound like an absolute joke trying to appropriate diagnosis when i'm likely just projecting my need for an answer to the lifelong question of why am i the way i am(at least this is clearly what my GP thinks). Totally prepared to be told that i'm looking in the wrong places for these answers.
If it matters, i'm 42, 5ft 1 and totally exhausted.
Hello, sorry if this isn't the right place to ask about this. I do not have a Turner syndrome diagnosis. Trigger warning too for discussions of health including mental health problems and also fertility and children.I have recently discovered from reading my medical records that I was suspected as having Turner syndrome in my infancy. A Buccal swab was negative and that was the end of it.I was born prematurely and had a number of health issues through childhood including:Constant and debilitating ENT issues that were eventually mostly resolved by intravenous antibiotics in my mid twenties. I do have a perforated eardrum to show for it and hearing loss on one side. I concurrently had serious issues with thrush from childhood until my mid twenties but that could have been the repeated antibiotics.I didn't start my period until I was nearly 17 ( which noone every told me maybe wasn't that ususal!) and they have been irregular ever since, masssively at first with 6 month gaps, although that has inproved with age weirdly (anything between 23 and 160 day cycles, 260 days after a miscarriage).I have issues with managing my weight and disordered eating, anorexia in my 20s and now binge eating disorder.I have had long term low T4 between 8 and 10 picoml (confirmed by medical records although this has been largely ignored as my TSH is normal, trying to get anyone to listen that im freezing all the time and have a beard and clearly have a hormonal imbalance has been an actual nightmare).Behavior and social issues and have recently been diagnosed with ADHD and the practitioner at my assessment indicated I should also be assessed for Autism, not sure i'm up for the fight to get onto a list though and medical settings make me deeply uncomfortable.I also got diagnosed with Fibromyalgia at 37 due to repeated dizziness, palpatations, headaches, ankle swelling, pins and needles and a variety of other unpleasant symptoms like bleeding between periods etc.) which feels a lot to me like uh, we don't know what causes all your issues ( that we think are largely invented) and so we will stick you with a fibro diagnosis and send you on your way.I did eventually have children, two in my late 30s, which is amazing as I had always been told i would struggle to carry a pregnancy because i have pcos and struggled with obesity.I have recently been trying (again) to get answers about my health and so requested and read my full medical records and discovered these discussions from childhood, I recognise that i am most likely grasping at straws but is there any merit to asking about Turner syndrome? Is it even a possibility after all this time? From what I have read some of my experineces (those i have chosen to describe in this post) are potentially similar to the on paper experineces of people with this diagnosis but recognise there's more to that lived experinece than 'symptom matching'.My periods have been much more regular (28-36 days) since having children but my hormone imbalance, mood swings and thyroid related symptoms are if anything worse.I get I sound like an absolute joke trying to appropriate diagnosis when i'm likely just projecting my need for an answer to the lifelong question of why am i the way i am(at least this is clearly what my GP thinks). Totally prepared to be told that i'm looking in the wrong places for these answers.If it matters, i'm 42, 5ft 1 and totally exhausted. https://ift.tt/W9s2cvq https://ift.tt/LAJf9D8
Comments
Post a Comment