Greg's Story

Greg is 49 years old and has experienced pain for the last 22 years, which became particularly bad about 18 months ago. Here he explains his journey towards finally getting a diagnosis for an underactive thyroid and the treatment that he needed.

I started experiencing problems with my digestion and pain in my Achilles tendons approximately 22 years ago, soon after I moved home: I only started to visit my GP when it started to affect my day to day life. I visited him regularly, but all he ever said was he didn't know what the problem was, and to 'come back if it gets any worse'. After approximately six years of this I was lucky enough to go back when he was on holiday and saw his locum instead, this was lucky because she diagnosed me with an underactive thyroid the first time she saw me (or at least, she said she had a 'hunch' and took some blood for testing, so that must have been her hunch). At the time I was 38. For the next four years or so I wasn't too bad, until I started getting symptoms, including pain, which would come and go at regular time intervals. I noticed that this coincided with taking a particular brand of levothyroxine from my chemist, and so I shopped around to find a chemist dispensing a different brand and the symptoms went away. I was then fine for about a year.

Over time, all of the chemists where I live moved over to this particular brand which I found that I reacted badly to and my symptoms came back again. Four different chemists confirmed that this was a known issue with thyroid medicine, though no one knows why, and I needed to return to my GP to ask for a prescription specifying a different brand as they weren't allowed to dispense anything other than what they receive from their wholesaler without one. I returned to my GP and told him this, but he just said I was talking rubbish; I wouldn't leave the surgery until he gave me a prescription specifying a different brand. Once I was on a different brand my symptoms went away again. A few months later that particular brand stopped being manufactured (the company still produced the medication, but just not with that brand name) and I had to return to the GP and ask for a different brand on my prescription. He did this, but said to come back in a month and let him know if it was still working. It was, but when I went back he said he wanted to try an experiment and stopped prescribing the medication and said come back in a month. When I went back to him after 4 weeks I wasn't any worse, though I was no better either, so he said I was 'cured' and no longer needed the medication. This was despite my blood test at the time showing that my thyroid-stimulating hormone (TSH) count of 5.65 was outside the NHS guideline range (approximately 0.3 – 5.0 depending on testing method), had been climbing steadily for 5 years from 1.26, and the NHS website states it takes at least 6-8 weeks for changes in dose to impact on symptoms.

A few weeks after coming off the medication the symptoms started to return. My GP again said that there was nothing wrong with me, and the pain in my Achilles was due to my running. He said I should stop running and take up swimming instead. When I pointed out I'd had the pain in my Achilles for about 15 years and I'd only been running for one year, having taken it up to try and lose weight, he said that was just a coincidence, 'stop running'.

For the next three or four years I returned to my GP regularly with the same symptoms but he refused to accept there was anything wrong with my thyroid and tested me for everything under the sun, all of which came back negative. I had various diagnoses from him for my Achilles pain (pulled muscle, sprain, running too much) and then last year he decided I had sciatica and asked repeatedly how bad the pain in my back was. I repeatedly replied that I had no pain in my back, and had never had any pain in my back. By this time the pain was not only worse in my Achilles, but I had difficulties with my digestion and the pain had spread to both knees and calves, and to the shoulder, elbow, wrist and fingers of my right arm. Also, the skin on my forehead and chin was getting so dry it was cracking and flaking off like fish scales and was tender to the touch. Despite this, he still insisted it was sciatica and put me on painkillers, which had no impact on the pain but the side effects were horrendous. When I asked how sciatica was causing the pain in my arm, the problems with my digestion, and the dry skin he said it was just a coincidence, and that I had sciatica.

I asked him to retest my thyroid and told him that I'd seen on the internet that the time of day the thyroid was tested impacted on the results and could I be tested first thing in the morning instead of late in the day. He just said I was talking rubbish, but agreed to have it tested. As an aside, my mother has the same problem as me with her thyroid and has been reminded by her GP practice for over forty years every time she has her annual blood test that it has to be early in the morning, on an empty stomach, or it affects the results. When I made an appointment for the blood to be drawn I was given a late appointment, not early morning, despite my request. The doctor also changed my painkillers to a different brand due to the side effects I was experiencing and asked me to return in a fortnight to let him know how they were working. When I returned I told him they were having no impact on the pain at all. He then said my blood results were back. There were several results available, but nothing for my thyroid. A week later when there were still no results online (I'm signed up for Patient Access) I phoned the surgery to ask if there was a problem with them, only to be told the doctor had decided I didn't need my thyroid testing as I was ok when last tested in February. So why did he tell me he would arrange for the test, and then tell me the results weren't there when I went in to get them? It was at this point I decided to change GP as I wasn't putting up with my doctor lying to me where my health was concerned.

I registered with a new GP and while I was waiting for an appointment I had my worst ever period. It was so bad that for several months I could barely walk, let alone run, even when taking painkillers (paracetamol and ibuprofen) every day. For a fortnight in September/October I was almost bedridden as every joint, muscle and tendon in my body was in excruciating pain. In fact I was so bad it was taking me 30 minutes to get down stairs in the morning - the pain and sheer exhaustion of each step meant that I needed to rest after each step for the pain to die down and to recover my energy. The pain in my wrist and fingers was so intense I couldn't open doors, windows, bottles, turn keys or taps with my right hand. When I went to the dentist I couldn't push the door open as it was too heavy, I had to use my shoulder. For some of that period I was actually worried I may not wake up in the morning as I thought I was so ill I may die, which was pretty scary, I can tell you! When I did get to see my new doctor, he said I couldn't stay at their surgery as I lived in a different health authority catchment area.

When I did eventually register with and get to see a new GP in the correct catchment area, the doctor I saw confirmed that every symptom I had was common to an underactive thyroid, but as my previous GP had taken me off the medication he couldn't just put me back on it or he'd get into trouble. There was one other possible cause he would test me for and if that came back negative he'd retest my thyroid and put me on levothyroxine for a month as a trial to see if it worked. While waiting for those blood test results to come back I developed double vision. When I went to see the doctor about it he couldn't find anything wrong with my eyes but suggested I go to the opticians as they had better, specialised equipment, but in the meantime he arranged for a thyroid blood test, even though the other results weren't available yet. When I mentioned I'd seen on the internet that the time of day made a difference he said he'd not heard that before but yes, make an appointment for first thing in the morning, it made no difference to the surgery what time of day I came in (unlike my previous GP who said I was talking rubbish). My appointment with the optician resulted in them giving me a letter for the doctor saying there was nothing wrong with my eyes, but double vision is a common symptom of an under medicated underactive thyroid. Due to the letter my new GP immediately put me back on 25 mcg levothyroxine, even though the results of the blood test weren't yet available. The symptoms started to reduce within two days (double vision, pain, digestive issues, dry skin, lethargy and exhaustion), and as soon as the blood results came back I was called in to the surgery and the GP doubled the dose I was taking, to 50 mcg – they showed a TSH of 9.49, almost double the NHS guideline max. I continued to improve for the next few months, but then the symptoms started to get worse again. Although my next blood test wasn't due for four months I went in and the doctor arranged for another blood test, the results of which showed my TSH was climbing again and he increased my dose to 75mcg, saying I may actually be better off taking 100mcg. I chose to start on 75, saying I'd increase to 100mcg if 75 wasn't enough. My symptoms improved for the next fortnight, but then stopped. I didn't go backwards; I just wasn't improving, so six weeks later I started to take 100 mcg. That was 15 weeks ago, and I'm still improving.

As far as I'm concerned, given my lack of medical knowledge, my previous GP was trying to kill me (the NHS website says the worst case scenario of an untreated underactive thyroid is coma and death), and my new GP has saved my life - the reduction in pain is just a bonus. I'm not 100% yet, but my new GP has said it will take at least 12 months, probably longer, for my body to rebuild itself and repair all the damage done while I wasn't on the medication I needed. At the moment, most of the time pain doesn't affect me too badly and I just ignore it, though most mornings and after long periods seated I hobble rather than walk for a time from a few minutes to half an hour before the pain dies down as my tendons get exercised and start moving/warming up.

I joined Cloudy after reading about it on the BBC website, it seemed to be talking just about arthritis, so I thought maybe you're missing other causes of pain, like thyroid problems, and thought it may be useful for your studies if you had another condition to consider. I do believe in an association between weather and pain: during cold/damp weather the pain increases, especially in my knees and wrist. Unfortunately though, a hot summer doesn't alleviate the pain for me.