I rarely share any piece of my personal life with social media as I am a very private person but after reading your stories, whether you’ve been yet diagnosed or not, I feel like it’s sort of my responsibility to talk about it as I feel for each one of you and what you’re going through.
I apologise in advance for a long read but whether you believe it or not, it was a long journey.
Giving birth to my little boy back in 2014 was the most amazing thing any woman can experience. Being a mother.
I was always super healthy and energetic and never paid any attention to it whatsoever as I had any reason to.
Within three months after giving birth, I lost almost five stone without trying and it continued despite of the fact I ate normal. I drank a lot of water and gradually I was struggling to sleep and my heart was racing.
When I turned into skin and bone I went to doctors and they did some blood tests. Next day I had a phone call saying my thyroid is overactive so my GP put me on tablets to slow it down. My heart was beating almost 200 beats a minute so they had to put me on propanalol which had to be increased over time as my heartbeat was still too high. Two weeks later I had an appointment with endocrinologist. They did a bunch of blood tests and phoned me as soon as they had my results. They took me off tablets for my thyroid as they made it stop working completely so subsequently I was coming off propanalol. I had some trouble with cortisol level but after going through some tests doctors let it be. During my last visit with endocrinologist I was told I have thousands of thyroid antibodies so I was advised to take it easy and that there was a possibility of my thyroid failing completely. I felt okay as my thyroid was slowly recovering and I could feel it. If I knew that the next 4 years of my life would be a walk through hell I wouldn’t have left their office.
My thyroid level was up and down which had shown during my regular check ups at the time. I was soon being discharged and eventually my thyroid level was normal.
Maybe a month later I felt like my bones were breaking. I could feel pain in every single bone in my body, I was losing weight, I felt nauseous. The pain was excruciating so I went back to my GP.
My GP kept asking me if I knew what it could be but I had no idea. All I wanted was for it to go away. They kept doing a bunch of blood tests but never came up with anything. At this point, I asked the doctor if my high level of thyroid antibodies could be the problem but they had no idea.However, they thought it’d be for the best to refer me to a rheumatologist. As far as I remember it took two weeks to get a letter back in 2015. The day my apppintment with rheumatologist came, I was being examined and went through a bunch of blood tests again. Before I left their office I was told about fibromyalgia which might have been an answer to my symptoms. It took a good long month to get my results and they were all normal. I had no choice but to learn to live with it and get over it.
A year after giving birth, around two months after seeing a rheumatologist, I was going through my highs and lows. I had good days, I had bad days. I had days when I couldn’t drive because I felt so nauseated. I just needed to lay down. I prayed for it to be gone, whatever it was.
Every time I felt like I was getting better something else came up. This time it was my stomach. I kept having this pain on the right side of my upper abdomen that one night it was so extreme, it didn’t let me move so my dad drove me to the nearest hospital which was less then 30 miles away. Initially, the doctor thought it was my appendix but after examining me he was convinced appendix was not the case. The night I was there, I was given strong pain killers and I’ve been referred for ultrasound of my upper and lower abdomen. Again, it didn’t take long to get my letter. However, during my ultrasound they scanned only my lower abdomen as the upper abdomen was somehow not requested on the letter. They asked me to go back to my GP so I went. My GP asked me the same as usual , if “ I knew what it could be” and all I could do was to answer back with a blank stare. He noticed they haven’t scanned my upper abdomen but his decision was not to refer me back as he assumed it was IBS. He put me on tablets for IBS believing it’d sort the pain. Unfortunately, I was getting worse so I kept going back to my GP and they kept doping me with different types of tablets for IBS. None of them worked so I eventually gave up.
There I was again, going through my highs and lows,I was stuck in the same circle of good days and bad days knowing there was no point for me going back to my GP as I wasn’t getting anywhere.
Almost two years after giving birth some of my symptoms were gone but there was always something new coming up.
My hands were getting numb. It went on for a few months and just because some of my symptoms went away gradually in the past, I thought I’d wait and live on instead of going back to my GP.
The time came when I had no choice but to visit my GP again. My hands were getting so numb I started dropping things, it was waking me at night, I had trouble cutting veg while cooking. This time it was another GP I saw so they supplied me with a wrist splint and referred me to orthopaedics as they assumed it was carpal tunnel syndrome.
This time, it took months to see orthopaedics and my condition worsen and new symptoms added up.
My hands were so numb I struggled to hold umbrella in my hands so I felt lost and useless. I wasn’t giving up though. When the letter came I had my appointment two weeks later. The specialist examined me and referred me to Edinburgh for some nerv test. The doctor wasn’t convinced it was carpal tunnel syndrome as at the time, I experienced numbness in my feet as well so they referred me to Neurology stating that if they won’t find anything they’ll send me for surgery to relieve numbness in my hands.
A month later I drove more than three hours to Edinburgh for a nerve test. It was inconclusive.
It took more than eight months to get to neurology. But those months were months of pain, tears and many sleepless nights.
My stomach bothered me more than it ever bothered me before, i was getting so nauseous that I could not walk up the stairs at times, I spent hours and hours on the living room floor not being able to get up because I felt so sick. I kept getting ulcers In my mouth which were super painful. Whatever I put down my stomach it kept coming up, even when I drank water. I had problems with my eyes, my skin, my hair was falling out so much I could not wash it In the shower, my throat was always so painful and I could just go on and on. I felt so old despite of my very young age. It literally felt like my body was falling apart.
Due my stomach problems I had to go back to my GP a good few times to get help. I felt so embarrassed paying these visits but I didn’t want to live like this. Eventually, my GP decided to refer me to Gastroentologist.
The day came when I saw gastroenterologist. For the first time after seeing all these doctors, nurses and other specialists the tear literally ran down my cheek as I felt so lost.
The lady listened to me so she thought she’d refer me for more tests but they returned normal and told me to come back in two months time.
So I did and I wish I never. It was a different gastroenterologist I saw. As soon as I entered the room I felt something was not right. Instead of asking me about my issues, the man was more interested in my name, where I’m coming from and it all felt so confusing. Eventually he let me speak but he did not listen. What he said was “ I could run some tests but I’m not going to because I don’t think there’s something wrong with you but I want you to come back in one month time” Around that time I was seeing neurologist and he did listen to me. He examined me and referred me for MRIs to see if the problem is in my spine or neck. He insisted I had to go back to gastroenterologist so I had no choice but to go back adding it’d be either something too simple or something too complicated.
A month later I was back at the clinic seeing the same gastroenterologist as I saw the last time I was there. He sat me down and said things like, “ what a shame we met in such circumstances but unfortunately , I am not going to run any tests on you as there is nothing wrong with you” he told me he believed I needed to see a psychiatrist and psychologist as the problem was supposedly there. He suggested to ask my neurologist for happy tablets as they were able to prescribe them. I was in shock so It was very hard to fight back. I felt like I was going to break down and cry. And I did. The tears came out and all he said was that he was going to see me in one month time.
I instantly knew I wasn’t gonna be back.
As soon as I left the hospital I got in the car, drove to nearest parking lot in Dumfries and as soon as the engine stopped, I broke down in tears. I cried and cried and cried. I never felt so low in my life.
I’ve never chosen any of this. Deep down I knew it was not in my mind even if he tried to convince me otherwise.
I stood there at the car, I gradually calmed down and drove myself over fifty miles back home.
A few weeks later I was back at the clinic seeing neurologist. After reading letters from gastroenterologist he labelled me with Functional disorder and advised me to see a psychiatrist or a psychologist and offered me antidepressants. I was told not to go and see any doctors but he still asked me if I could go and see a rheumatologist so that they can repeat the same tests again just to make sure.
I could sense from him that he knew this was not in my head but logically he played his part and did all he could.
My body was taking over my life and they were telling me the problem was in my head. I wouldn’t have thought that someone would try and make me question my sanity over my body.
All letters from specialists were sent to my GP so I went to see them. I never read any of the letters that gastroenterologist sent at the time, but he pretty much convinced everyone that I was crazy, hypochondriac, anorexic etc. It was pretty obvious I could not fight back and somehow, I started to question my own sanity so I agreed to be referred to a psychologist. I was put on antidepressants which I’ve been taking for months and months.
Things didn’t improve. I was getting worse. I ended up at the rheumatology clinic like I was asked to do so and they said pretty much the same thing as everyone else “ I advice you to see a psychologist”
During those months I have accepted myself that it was all in my head and try to live on. There was still not a word from Psychology at this point.
However, some time in mid summer of 2018, four years after giving birth, my stomach problems did not get better and the pain on the right side which had continuously worsen since it began was giving me bad nights sweats and waking me at night.
The time came when I changed my GP and saw someone completely new. My records were not transferred at the time I saw my new GP at the new clinic so they had to go with what I had to say to them. That day I was so lucky as he was the only doctor who made his own opinion because they listened to what I had to say. As soon as I told him my story he made it clear that I could do with going back to endocrinology and they referred me for an ultrasound of my upper abdomen that was cancelled back in 2016.
The ultrasound clearly showed my gallblader was causing me so much trouble so I was referred to General surgery. My referral was urgent so I had my letter pretty much straight away.
The specialist I saw that day went through my records, read through letters from gastroenterologist and other specialists and made it clear with me and stated I need to go and see a psychologist despite of the fact the results showed the problem was not in my head but in my gallblader. I was devastated and my new GP could not understand what was going on but one thing was crystal clear, I had to prove it was not in my head.
I was on the long list to see a psychologist through NHS so I decided to go private. I found an experienced psychologist which was based in Ayr so it didn’t take long for me to see them.
My appointment lasted around an hour and the lady came to one and only conclusion.I was not the one who needed a psychologist. She never took any money and told me to go back to my GP.
There I was, back in my new GP’s office.
My new doctor did not hesitate and referred me for a second opinion so that I can get tests done in order to get the right treatment.
Around that time, January 2019, my throat was getting very painful. Just like I have mentioned above, I had problems with my throat but doctors believed it was just a cold. This time it was different and the pain was more intense. I struggled to swallow and it didn’t let me sleep So I had to go back to doctors. I was told to take paracetamol and then come back if it wasn’t getting better. Unfortunately, it turned worse so they put me on antibiotics but they didn’t help either so I was referred to throat and neck clinic I’m Dumfries.
At the same time, my body felt like it was shutting down, I slept during the day and felt like I had no energy at all so while I was still sat in the doctors office one thing went through my mind and that was my thyroid as somehow doctors stopped paying attention to it long ago.
I asked my doctor to check on it and so they did. As soon as I had my results I was put me on the lowest dose of thyroxine.
February came and so has my appointment with ENT clinic.
I remember myself standing outside the new hospital in Dumfries, scared, anxious as I really didn’t want to go in In case I was told again it was all in my head but somehow, something told me to go.
The nurse called me in to see the specialist. I told her about my issues with my throat as well as my stomach and I admitted my throat was a lot better than it was in the past two months prior to my appointment.
While I was there, the doctor put camera up my nose. It was uncomfortable but the result shocked me.
The doctor went back on her chair and said “ you need to see a gastroenterologist” I instantly had a ball in my throat and said no. She obviously wondered why I was so reluctant so I told her my story and she was pretty shocked even though the bigger shock came a minute later. The nurse at the ENT clinic used to be a nurse for the same gastroenterologist I was seeing back in 2017. I was reassured not to be afraid as the man that caused so much trouble was being let go by NHS as there were too many complaints.
We all stood there looking at each other and I was left speechless. The tear ran down my cheek but this time from this some sort of relief. The doctor advised me on vitamins to take for my thyroid which I am grateful for to this day and reassured me there will be no more trouble when I go back to gastroenterology clinic.
around this time, my antidepressants were stopped and I finally felt like I was getting somewhere.
In between my appointments I finally I had a good few sessions with psychologist through NHS and they eventually discharged me, admitting there was nothing to treat.
Prior to my appointment with gastroenterologist I was back at general surgery seeing a consultant.
He came up with a couple of tests that could have done but the MRI department refused it as they didn’t think it was necessary which he stated in the letter sent to my home.
He came up with the idea of doing two ultrasounds. One ultrasound would be done on an empty stomach and one after I had something to eat
Some time in May of 2019, the day came and I was standing outside Dumfires hospital again to see gastroenterologist. At this point, it was obvious I was not crazy but after what I have been through, I was scared as I didn’t want to go through the same thing again.
Once I was called in, the doctor asked about my symptoms. They told me that after putting camera in my nose at ENT clinic discovered I had a lot of acid in my stomach as well as in my esophagus which caused my sore throat during those years. They put me on tablets and I soon felt a lot better.
As months went on, the doctor soon increased the dose of Levothyroxine to 50mg a day which I have been taking diligently with tablets I had prescribed from gastroenterologist.
Slowly but surely, I felt better. I felt like the old me. My stomach problems were gone as well as other symptoms.
Around this time I had an appointment for my ultrasounds and I kind of hesitated as I finally felt great. The last thing I wanted was to waste any more of my time running about hospitals again.
Despite of me being reluctant, my new doctor advised me to go so I attended my appointment back in September 2019. It was a surgeon who did the ultrasound as he knew what to look for but I was being very sincere with him and told him I feel no pain anymore. Whether you believe it or not, it was a very strange thing for me to say after all I’ve been through, I finally felt okay.
but.. not for long
My energy level was slowly going down and my body went completely crazy again. My hair was falling out badly, I was tired, gaining weight and even when I went to gym I felt so weak and dizzy I could not do a thing so I went for a blood test to check my thyroid level again.
The doctor that checked on my results made a decision to increase the dose of thyroxine to 75mg a day.
In spite of that, I felt like my body was taking over my life again. No matter how hard I tried I could not carry on.
My gut was telling me there was something not right so I decided to see my new doctor. After he looked at my latest results he was pretty much shocked I was only on 75mg of Levothyroxine so he gradually increased it every four weeks to get my thyroid level stable. I’ve been on 125mg since then.
In the past 6 years I traveled all around Scotland to see many doctors, specialists, consultants, and nurses. I underwent many unnecessary tests. I was given tablets I was not meant to take in the first place.
I was being labelled with many psychological disorders and shut down by doctors.
I am extremely grateful for people around me who helped me to keep my head up, people that encouraged me not to give up when I was at my worst.
I am very grateful for the doctor who took time and listened and made his own opinion in order to get me better.
All the credit goes to them.
Here I am today, July of 2020. I feel like the old me. My body was taking over my life for far too long but now I am finally in control. And all it took? It took only one doctor who’d listen and two types of different pills.
He’ll never know how grateful I am he did not give up on me. Sincerely speaking, if it was all up to me I’d let the whole world know what a good doctor he is but I respect his privacy.
My experience reminded me of something very important in the end which I have forgot about in the middle of my journey to diagnoses. It reminded me of who I am, I learnt not to doubt my instincts. It surely made me a stronger person.
Perhaps to some people my story might be just another story. Some people possibly gave up reading it while in the middle of it and didn’t make it to the end as they found my story too long. But to those people who did, this is not just a story.
This was my life in the past six years.
I am telling you now, I know what it’s like to be sick, bedridden and helpless.
I know what it’s like not to be able to attend certain occasions or make plans with your friends because you don’t know how you’re going to feel and that you’re just too ill and embarrassed to explain yourself. I know what it’s like not to be able to get off your bed because you feel numb and weak which refrains you from doing things you love doing the most.
My intention to share my story with the world was not to seek attention. To me it’s a message to all of you not to give up even though it’s very hard when you feel sick. I am telling you to remind yourself of what you were when you first got sick, you know your body. Remember when you’re sat in your doctors office during those 10-15 minutes that they don’t know you. You are the one who knows your body the most so listen to it and to what your gut tells you and go with it. Don’t let it get to the stage when you start questioning your own sanity or let doctors think you’re crazy. Don’t be afraid to stand up for yourself. Do not make my mistakes.
Even though all of these doctors made me question my sanity and I eventually believed it myself, I’ve never lost my faith. I turned to God and the bible but mentioning that, I don’t intend to preach. I am only trying to tell you how important it is to have hope and believe in things you believe the most.
Most importantly, never doubt yourself.
When you finally find the doctor who listens and you’re on your way to recovery, take it easy. Take it day by day and I am not going to lie, there are going to be bad days.
When you can’t get off the bed, don’t. Dishes and housework can wait. I learnt we all have different bodies but one thing is for sure; recovery takes time, even growing up goes slow so trust me, it will be worth it in the end.
When you feel like you can’t go on read my story again, share it, spread it just to remind yourself and to show other people that there is hope and that everything is possible. Don’t let yourself go through what I’ve been through.
No matter what your health condition is, no one deserves to suffer like some of us do. All we can do is to get together, support each other and refrain it from happening.