Navigating life with a broken thyroid

In 1992 I caught a nasty strain of flu which kept me bedridden for a month. That was a long time for a flu but doctors said it was quite normal. One of the very first symptoms I had suffered was breathlessness,chest tightness,numbness in limbs and fatigue. Unbelievable fatigue. I was 23 years old and I couldn’t go up a staircase. .But I trusted in the doctors that were treating me who were so reassuring that it was just a cold and that everything would go smoothly,just give it time they said. In the meantime my condition progressed to extreme fatigue,memory loss and severe constant anxiety up to the point I thought I would be losing my mind. At the same time,I had problems with my digestive system and I was totally unable to get up on my feet if I was not assisted.My breathlessness had progressed to a bad case of dyspnoea which made it impossible for me to take a full breath without using an inhaler.I was staying in bed,torso raised,or I would suffocate.

I was shedding hair badly.My vision had gone blur. My skin was pale with red dots all over and a little darker than usual. I developed OCD out of the blue. I was left all alone to die by friends and family. My own father who was a doctor,said that I was a mental case,probably a psychotic personality,and put me on antipsychotics for four years. Which of course made things worse but only

for me.Everybody else was fine.

You see,in these cases,it is always the patient's fault

That cold took eight years to pass. And to be honest,I never actually recovered from that. I had reached a point that I was either waiting for a miracle to happen or to just die. I had lost everything that was important in my life,I had lost my ability to exist as an independent person.I was losing weight fast and I dropped to 70 pounds .I had been tagged as bipolar,anorexic,depressed,psychotic and all the known stuff that doctors use when they are absolutely clueless of what happens to their patients.My entire world had been limited in my bed. And I was just 23.That was no life for a human being.

I don’t know how I recovered. Nor do the few doctors who claimed that were treating me.I hadn't left the house in four years and I was eating every five days.The issue is that by 1998,still like a zombie,I decided that the meds I was being fed with were not for me so I stopped taking them and it felt great to be honest.Sort of disobeying false authority.By 1999 I could move around in the house and by 2000 I had attempted to go out to the world and start working again. I enrolled to a pottery class and I pretended that I could move on with my life that was brought to a halt ten years ago.That same year my OCD vanished miraculously. Not a sign of the darn thing,nothing.Mentally I was back to normal.

In 2004 and 2006 respectively my sons were born.

In 2009 I divorced. That came as a no surprise to be honest.

In 2010 I left town. My past condition remained undiagnosed and shoved under the rug by my toxic family

In 2012 I had one of the wake-up calls but I could or would not identify it.Even though I was a vegetarian since I was 14 and I always had the right weight,if not underweight,I suddenly had a spike in my weight and in my blood pressure. Totally out of the blue. By 2013 I had gained 49 pounds. The more weight I gained the more I was working out and the more I was working out,the more weight I would put on.I was asking the doctors why was that since my diet was unchanged but they shrugged and they told me that it must be perimenopause and to stop binge eating.

Still getting insults but nothing of a diagnosis

By the end of 2013 I was sweating loads on minimum effort and I had trouble sleeping and/or staying asleep. I was waking up at 1am unable to go back to sleep,tossing and turning in bed.Anxiety was settling in and there was a general sense that I was reaching my limits

In 2014,December,I felt a sudden upper abdomen tightness and I couldn’t breathe.Doctors said it is all in my head and that I was stressed  and that I should relax. In January 2015 I fell sick with the flu and after a month I still hadn’t recovered. It was February 21st when I suddenly felt awful,like a buzzing noise in the left side of my head,I couldn’t bend or stand up,my head was heavy with this buzzing noise like a broken circuit,words fail me to describe the horrible sensation. I took my pulse and it came back with a reading of 32 beats per moment.Not possible.I took it again,the same.I was recovering from a prolonged flu that was never going away no matter how much medication I was taking following doctors’ orders. The next day I visited a cardiologist to have a quick check up even though my heart rate had already gone back not to normal but to low of 44 bpm but was way better than 37. She found nothing wrong with my heart and blamed the incident on the medication she had prescribed to maintain my blood pressure to normal levels.

By March same year,I was going down really fast. OCD reappeared.My words were coming out slurred or not making sense.My central nervous system was sending crazy signal throughout my body.My head and my chest felt tight.My liver felt enlarged and achy. My bones felt weak.I had vertigo and paresthesias in face,hands and feet. Nothing was real anymore.I had even lost the ability to write.My thoughts were muddled and people were staring at me whenever I was in a conversation.I simply could not form a proper sentence. It was like someone had thrown a black veil over my brain.

So far I had visited nine doctors and they kept saying that I was fine and that it was all in my head,suggesting I should take antidepressants which I refused to take.In July I had severe panic attacks. In August I had severe heart disease signs,extra heart beats and arrythmias,severe dizziness and shortness of breath,severe cognitive impairment and by October I had ataxia.I simply could not coordinate my body. .My mood was awful,even I couldn't stand myself,screaming and yelling to everyone,overreacting,unable to shed a single tear.Slowly,I flatlined emotionally. I had no motivation to get started with something. I was actually doing absolutely nothing during my days .I was just staring life around me with a blanc,apathetic gaze..

I saw a neurologist who examined me thoroughly. She prescribed me antidepressants (sic) and told me I had MS.

Wrong again,said the MRI I had.But by that time I had already visited 26 doctors of every known specialty and had wasted 16,000€ because they kept charging me for an all-in-your-head diagnosis

July the fifth,same year it was obvious that my mind had slowed down significantly and my energy was it its lowest. Everybody I knew and had fallen sick with the flu, had already recovered and only I was dragging my feet trying to keep up with the rest of the world.My knees were aching like hell. The joints in my hands were killing me especially in the morning.My back was stabbing me with sharp pain in the renal area.Vertigo was now a daily situation. I was dragging my feet from the exhaustion I was feeling.I was feeling stings as if I had been stung by a wasp or something.So I was searching my skin for bites like crazy because there was no bite. I thought it might be the stress I had gone through, or the exhaustion,I couldn’t sleep at nights,I was getting up at 2am,unable to go back to sleep and ,again,I blamed it on the increased responsibilities of raising two children on the spectrum singlehanded.Never crossed my mind that my system was collapsing,my body was sending me signals that I couldn’t interpret and those who could,were ignoring my cries for help.

On that very day I thought I had a panic attack on the way to work. All of the sudden I felt my heart changing its beating rythm,like stopping and restarting which is weird,right? A heart isn't supposed to do that. But mine did,leaving mefeeling as if I was burning up with fever and then shivering,freezing cold with jelly-like legs,incredibly weak and in a state of mental blur.

In retrospective,that was my thyroid going hyperactive and my struggling adrenals. I still don't know which one was the first to stop working and it is of no importance anyway.

Since that February I had no good day. My tranquility vanished. I became a nervous wreck who was trying to walk but couldn’t,I lost my appetite,my joy,my spirit,almost lost my mind,I could not remember my cel phone number nor could I recognize the street I was living at,my life became bits and pieces of what I could remember,my heart was fluttering and beating like a drum,my vision was blur and there was a constant buzz in my right ear. I was falling from stairs.My eyelids were black and my eyes inside were red.My skin was pale.I was afraid to eat because I could not swallow anymore.Food was not going through. I had the looks of a zombie.In September I had a severe reaction to dental anesthesia that almost killed me. I was sent to the hospital and I was dismissed an hour later.No diagnosis.But the ER doctor gave me a prescription for antidepressants.

I went back home to suffer more. Nobody knew what was wrong with me,I didn’t know either. Doctor after doctor were dismissing me with the tag of the middle aged lady. On November the 11th I collapsed at work. They took me again to the hospital where an endocrinologist checked my thyroid gland. Nothing there,she said with emphasis.

I made a private appointment to a brilliant endo,or so I was told.It was the first time though that FINALLY someone scanned my thyroid! She said that it was enlarged and ordered a full thyroid panel which came back with high TSH,normal FT4 and very low FT3 of 2,88 but,alas,both within range,so nothing to worry about dear . By November I was still feeling awful and I had low B12 of 109 and high cholesterol of 290

Yet no doctor in sight to run a serious blood test on me.End of November and I crashed in the waiting line in the bank. People around me panicked because I was unresponsive. They called an ambulance,they took me to the hospital where they treated me for the low B12 with an injection and they sent me home .

Again :)

Along with the new year,2016,the hypoglycemia arrived. I was swinging between extreme lows to unbelievable highs,from 25 to 340 . At night I was waking up every hour to snack on nuts just to stabilize my blood sugar because I wasscared that I would fall in a coma in my sleep.My children were waking up in the middle of the night to wake me,can you tell how much family fun we had during those years?

Did I mention that since February 2015 I had lost another 55 pounds?That too.

And then a revelation happened: I realized that something is triggering these incidents,that something was missing and that something was exactly what the doctors were failing to see.That I could die because of them and I didn't want to die. That simple.So I stopped asking them for the answer.

I started researching. Nothing serious,just reading articles here and there,that kind of stuff. I joined a couple of health forums,subscribed to newsletters and followed patients, so I limited my search to the endocrine system.My symptoms were matching.Funny thing the white coats missed it.

I started asking for adrenal hormones labs.But I wasn't heard. The contrary I was mocked by the doctors I was seeing,that I was clueless and that it was not my place to ask for specific bloods blah blah blah.True enough,I am clueless and I never claimed that I am not.

Late 2016,I saw a different endo,who prescribed me synthroid.I took it just for four days before my thyroid got swollen. I was told to stop the medication.A couple of months later I was prescribed a different brand of levothyroxine. Again,it didn't go well. The dr said it might be the fillers and she prescribed Tyrosint. Yes,I took it,the first six days I had energy and feeling good and I wasn't dizzy,it was great.Then,on the seventh day,something happened. I was sitting at my computer writing a blog post when something "heavy"hit my brain and my chest felt tight and my muscles very tense and everything changed in a split second.All of the sudden,my mind started racing incredibly fast.I felt very jittery and anxious and there it was,OCD showed up again.

Thyroid medicine was not the medication I needed at the time,hydrocortisone for my adrenals was.Somebody should have ordered the proper labs because my adrenals had suffered a huge blow in order to help me go through the years of severe illness.But,again,isn't the body an amazing well-oiled machine,so much hardship and still not giving up.

Back to the tyrosint thing,I called the dr. on the phone and explained what had just happened and she told me to stop the medication right away and then she stopped returning my calls. Can you believe that,she just ignored me.

So I decided to educate myself.I developed my personal recovery protocol based on information I found online shared by other patients.I tried,I failed,I crashed,I tried again and again and found what is working for me. While researching, I stumbled upon the many thyroid diseases that can actually make someone very sick . I was always asking,why I got two times so ill right after a virus infection,but I was getting no other answer than that of an alleged mental disease which was never medically established ,so why was it that I got so severely ill with exactly the same symptoms and in the same order and almost died twice?

Subacute thyroiditis,a short but dangerous period of hyperthyroidism following a viral infection before crashing into hypothyroidism.And yet,no doctor thought of this.And I wonder why,aren't doctors supposed to get all the knowledge before they leave medical school and start treating people instead of misleading and torturing them?

And my endocrinologist,even though she pointed out that it cannot be proven now -and she's right-since my thyroid is slowly gaining back some function somehow and the acute phase is gone,said that this is the most possible explanation for my mystery disease

She also ordered the adrenal hormones tests I had been asking for and the results finally justified my concerns.But it was the new heart doctor I found who helped me put the pieces of the puzzle together by ordering the proper bloodwork. Seems that my adrenals absorbed the shock and were left struggling. Some people go back to normal,some remain hypos.I don't know where I am landing now,my TSH is back to 1 something.I'm not hyper anymore,nor hypo,my bloods are coming back almost normal yet my weight gain tells a different story. I've gained back 32 pounds. Those ups and downs are far from healthy,I can tell something is off balance.But it's not for me to say what the diagnosis is,I am just telling my story.They,who should have provided the diagnosis decades ago,have sent me looking the other way all those years.

Almost 30 years since I fell ill the first time and I haven't recovered fully.I don't think I ever will.Just being realistic In four years' time I lost my relationship,my friendships,my job and my 40,000€ savings in harmful to me medical appointments and irrelevant tests. But it was last month that I had a chest x-ray because I was having trouble breathing again,and it showed that the dyspnoea I had in 1992 was in fact a bad case of pneumonia and that was what triggered the  rest.Was it the doctors who didn't care or didn't have the proper training to recognize the signs of pneumonia or of a thyroiditis that costed me 30 years of damaged health and a wasted life?.. or was it the indifference of my own family.. I'd say both

Ignorance is not a bliss but it's a hard task accepting that