Summary - Overdosed on Levo for two years, suffering severe hypers. These stopped when dose finally corrected but now, I have had to leave work, sell my house, and give up my pass times having been diagnosed with Heart Failure, are they related? Full Story Below......
Having suffered acute memory loss after brain infection I changed GP's to get the level of attention the hospital told me I needed. During the transfer, my Levo dose was accidentally increased from 150ug to 250ug. For the next two years I suffered regular hypers, nausea and sweating etc. but every few months I would collapse and be taken to hospital by ambulance. I have no idea what was done with me but I was usually released the same day, a few ideas were considered such as seizures, I lost my licence until I could get this cleared by a private specialist who basically considered the hospital doctors suggestion preposterous. Unfortunately, he had no answer for me. After two years and a lot of stress, pain and suffering I went to a different hospital when I felt similar symptoms starting. On this occasion it turned out to be a stomach bug but the doctor asked me if I was on Thyroid medication, I confirmed this and he told me to stop taking it immediately and see my GP as my levels were through the roof. I did this and on investigation the mistake was uncovered, my GP insisted this was not responsible for the symptoms I was having and even suggested they might be caused by Huntington's disease, I had chosen many years ago not to be tested for this. I changed back to my original GP and have not had any further instances of said hypers since lowering the dose.
I noticed however that my health did not completely recover. Although there was a massive improvement after getting the dose correct, physically and mentally things were gradually becoming harder to do and I eventually had to quit my job and sell my house. By the end of 2019 I could barely breathe and was taken to hospital where a specialist kept me in and wanted to do some tests on a shadow on my lung. Unfortunately, before he could do this, a night doctor decided to move my bed at 4am thus disturbing my rest and due to the change of environment (it was much colder) my ability to breathe. This is another story but basically, I was forced to sign myself out to avoid a dose of oral morphine to which I have a severe allergy. He forced me to do this despite me having a BP of 220/120 and I was discharged into the winter cold with untreated Pneumonia, no means of getting home and before 5am. The police eventually brought me back to the hospital as soon as my wife found out and alerted them, but I was given an antibiotic and sent home, no test on my lung shadow.
This brings me to a couple of weeks ago. Still feeling very unwell I finally got up the courage to contact my GP and get some tests done due to the Virus threat. It was Friday and I had an appointment for Monday morning, but I decided to order a new BP Monitor as mine was broken. The Monitor arrived from Amazon on Sunday afternoon and I checked my blood pressure several times. I had thought my blood pressure at the hospital was due to the anxiety I suffered at the hands of the hospital doctor that morning and in any case was not in any fit state before now to even look at a doctor. It was only the fear of Covid 19 and my love for my wife that convinced me to make this move.
My BP was 208/137, I phoned the out of hours service and was in hospital that evening. They spent a week doing tests and discovered the shadow was still there and that it represented fluid on the lining of the lung. This was to be dealt with at the outpatient’s clinic and, with my BP satisfactory, the hospital had me ready for discharge that Friday. Before discharge however I suffered a spell of dizziness and spots before my eyes. A quick ECG was ordered, and I was rushed to the cardiac intensive care. You can imagine my face as I was told I was having a heart attack. The Cardiologist held my hand as she told me and asked if I would like to contact anyone, I phoned my wife but I had to get the doctor to talk to her as I couldn't tell her.
The rest of the evening passed, everything was a blur and I was having gadgets, needles and stickers put everywhere. I don't know how much time had passed but we were well into the next day when another Cardiologist came and told me that there were no markers for me having had a heart attack but that I was suffering heart failure and had lost a third of my heart capacity. They wanted to keep monitoring me and said they were now going to keep me in and do the tests on the fluid in my lung. Due to previous experience, not just the one in December last, I have a fear of hospitals and my anxiety was rising. This got worse when they moved me onto the lung ward I was in before Christmas, and I really struggled. I spoke to the lead nurse and explained my circumstances as well as what they could do to make life easier for me, this is something I have learned to do since my brain injury back in 2014.
The fluid was to be taken from my lung at my bedside, the needle would be going into my back and local aesthetic was to be administered. The first attempt failed when the needle collided with a rib resulting in great pain and me apologising for my sudden movement because of said pain. The second attempt was a success with several vials of fluid removed for testing. Unfortunately, the fluid was not what the consultant was expecting so we are still barely over the starting line. Something to do with the wrong proteins I think they said. I did have a discussion with a couple of doctors about a possible relationship between my two year overdose on Levo and my heart failure but they were adamant it was not related, following my experience at this hospital over the past 5 months I am not convinced they are being entirely truthful.
I would love to know what others think!