A very negative patient experience
The other day I had what was, without a doubt, the worst medical experience of my life. The occurred when I went for an appointment with my Sanitas endocrinologist, here in Barcelona. This was actually my second experience with a Sanitas endocrinologist – the first one had been bad enough for me to refuse to see that endocrinologist a second time and I had demanded to see a different endocrinologist for my next appointment. Needless to say I will not be. using Sanitas services anymore.
Let me first provide a bit of perspective before going into the details of the poor service. I was diagnosed nearly two years ago with hypothyroidism. At the time it was a huge relief. I had been putting on weight despite swimming up to 10km a week and dieting, and I had been suffering from bad depression (partially diagnosed by my continual exhaustion). My diagnosis explained both issues and I was happy to hear that on proper medication things would go back to normal, and I would not notice any effects from the hypothyroidism. This has only been true to a certain extent. Initially I struggled to find the right dose and brand, but in Switzerland I finally got to a stable, if very high dose, of thyroxine, which seemed to work. My life – and weight – started to return to normal and all was good . . . for a while. Then about six months ago I suddenly put on 10kg and started to feel lethargic, exhausted and depressed again. Initially I put this down to stress and work problems, how ever the symptoms persisted once I moved to sunny, chill and relaxed Barcelona. Again, despite dieting and regular swimming, I was slowly putting on yet more weight. I had a relatively relaxed lifestyle (one of the benefits of being self employed) and yet was constantly exhausted and I started to get aches in my joints (and I really am not that old!).
Like so many patients with chronic diseases I turned to the internet and social media for advice and support. It looked like, based on my research, my hypothyroidism was no longer under control. I also was surprised by how many people I knew who also suffer from thyroid problems. More worryingly was the common theme that was coming out through my friends and the support groups on Facebook. It looked like Thyroid disease is hugely under-diagnosed but also poorly understood, and many physicians are rather bad at handling the disease. As I had good private insurance with Sanitas I decided it was time to go see a specialist. An endocrinologist would after all understand my disease, the implications it had for me as a person, and be able to provide me with expert advice. I also wanted to find out, if possible, what was causing my hypothyroidism.
So it was with this in mind that I, a highly educated patient with plenty of support and information from other patients, went to see my first endocrinologist at Sanitas. I had specifically asked to see an endocrinologist specialised in thyroid disease so I had high hopes. You can then imagine my total shock when, after I had asked her about my weight issue and concerns, she promptly replied, without asking me any questions on my diet or lifestyle, that I should eat less! Anyone with hypothyroidism will tell you weight is a prickly issue and it can be very hard to deal with. What we hypthyroid patients do not expect is to get told that our weight it totally down to eating too much! Had this doctor even bothered to take a minute to ask me about my eating habits she would have found out that I would be hard pressed to eat less – I had been living off salad, sushi and very healthy food and I exercised nearly every day. A more appropriate response would have been to have a discussion with me, ascertain if eating “too much” was really the primary problem, and discuss the option of seeing a nutritionist to identify an appropriate diet.
Based on her inappropriate approach I decided to ask to see a different endocrinologist after I had had my blood test results. I walked into the consultation room and handed the doctor my blood test results. After a very brief, cursory, introduction she glanced at my results, asked me what dose of meds I was on, and then told me she was going to reduce my dose and promptly started writing the prescription. Done. Dusted. In less than five minutes. Next!
Except I pushed back and questioned her response. I asked her how she could reduce my dose when I still felt so bad? Her response was swift and blunt – if I did not like her opinion I should go talk to another doctor. End of discussion. Again I pushed back – this time on the verge of tears. I told her how desperate I was and how I could not go on with things the way they were – I needed help with this disease. I told her that something was very wrong and I could not cope anymore. Her response was very cold and disdainful, “it’s not my problem” and that I should go see a “head-doctor” as it was clearly a mental issue. I was flabbergasted. Here was a patient in clear distress – with very physical symptoms typical with thyroid problems – and a medical “professional”, specialised in thyroid conditions, was telling me to go away and that is was not her problem. She also showed no regard for my distress and handled me with total utter disdain – she had no regard for me as a patient, my health or indeed my safety. I took my prescription and left in floods of tears. I have never left a doctors office in such total, utter distress and so distraught. Had I been suicidal I would without a doubt have killed myself – I was so devastated by not only her response but the inhuman way she had treated me.
I went home and cried and cried – alone at home. It was only hours later that I was able to briefly post to my Facebook page and the support group. I got an overwhelming outpouring of support, sympathy and love. I was not alone and it turned out that as horrific as my experience had been others had also had dreadful experiences. How could a medical professional be so callous with someone’s life? I then also checked my results online – doing my own research and found out that my results actually suggested I may have Hashimotos. The endocrinologist had not even mentioned these results – purely focusing on my TSH results. I also contacted my brother, who is a GP, and he responded very rapidly telling me under no circumstances should I up my dosage as my TSH levels were dangerously low and a higher dose could actually be very dangerous. Again the endocrinologist, knowing that I had been asking about increasing my dose, had not even bothered to warn me about this. Without my brother’s response I would have gone ahead and increased my dosage and possibly ended up having a heart attack!
I am aware that there may be cultural differences in how Spanish medics deal with patients, and that traditional Spanish doctors have been more paternalistic, if not dictatorial, with their patients. However cultural differences aside a doctor has a duty to patient’s safety and a duty of care. Even if this endocrinologist did not appreciate my challenging her response, she should have informed me of the dangers I faced if I did increase my dosage – failure to do so endangered my life. Also given the link with depression that this disease has, and having a patient sitting in front of you saying they can no longer go on and they cannot carry on living like this, should raise flags. Again duty of care should have resulted in her making sure I was not suicidal. Ignoring my mental state and telling me to get out of her office could again have had severe results for my personal health and safety. As it is I am fortunate to be health literate, mentally resilient, and to have access to great health support and advice online. Another patient may not have been so lucky and this doctor’s negligent attitude could have cost a life. Even if a doctor does not personally like a patient or takes umbrage at a patient challenging them they should never, under any circumstances, endanger a patient’s life, deliberately or through negligence.
Unfortunately I have very low expectations that Sanitas will do anything against this professional negligence – and I will not risk my health, and my life, with such poor care. If I am going to pay for private insurance then it will now be in the UK or Switzerland where I am confident of the level of care I will receive. But I have to say thank God for social media – my thyroid support group provided me with the information, support and hope that I needed. I just wish that my endocrinologist had done the same.