Lilian’s Story

I have now had over 20 years of normal living. I would not have had this if I had remained on only Levothyroxine (T4)

About 35 years ago I was diagnosed with hypothyroidism, given levothyroxine and expected to live happily ever after. Approximately 10 years later things started happening. I do not know which started first but over the course of the following two years I had bells palsy, plantar fasciitis, two frozen shoulders, was getting days of constipation and then a couple of days of the runs, I was finding it more difficult to get up in the morning, and other things. I was constantly at the doctor’s surgery, I was sent for all kinds of tests for all kinds of problems.

I got really concerned when it got to the stage I was falling asleep in the middle of talking to someone. I drove a car, what if I suddenly fell asleep whilst driving? There were all the other things like weight gain etc. In fact, I really was disintegrating. I am sure I must have been on the brink of Myxoedema.

I knew there was something wrong but the doctor said it was not my thyroid because my TSH was 1.6. They say things come to you when you need them. A friend who has been persuading me to get a computer finally got her way, and I bought one. Thyroid groups were very young then but I found out more about the thyroid and that the TSH was not the only test, and that I could have a test done privately. So I did.

The results came back TSH 1.6 but the T4 was extremely low and the T3 below range. My instinct told me that it had to be the T3. I took the results back to the doctor, who took one look at them and pronounced they do not take any notice of T3 but would increase the T4 dose. That did not work. I then realised I needed to find a doctor who would prescribe T3.

I live in the UK. It is difficult enough now, but near hopeless finding a helpful doctor back then. I found a doctor in the USA who had a protocol for T3 and his website listed doctors in other countries who followed his protocol. There was only ONE in the whole of the UK. However, even if he was 500 miles away I would have to go.

Did I say things come to you when you need them? In my case, this is an understatement. I searched for where this doctor was. Unbelievably he was not only less than 5 miles away, but he was also one of the private doctors renting a room in the surgery where my husband (accounts manager) worked. I went to see him. He did extensive tests, including a 24-hour urine test. He was very thorough. He came to the conclusion that I was not converting properly and prescribed T3.

I had to go through a long process of clearing T4 out my system and then introducing the T3 very gradually. It took nearly a year for me to find my optimal dose was 100mcg T4 and 40 mcg of T3. As the months went on the symptoms gradually went, The first symptoms to be fixed were constipation and diarrhoea. There were some days I was not so tired, others still tired. But it was great that as time went on instead of 2 days a week awake and 5 asleep, it got to more and more days.

One day about a year later, I woke up, absolutely bright and cheerful and it suddenly dawned on me I was now normal again. I was another year with him on a steady dose.

He then moved out of the area about 300 miles away. He was still providing me with prescriptions but my then GP was quite a nasty piece of work and threatened to report him to the GMC because he was giving me telephone consultations. He said it was bad medical practice – yet it is the only thing they are doing now. Anyway as it was during the time some good thyroid doctors were being hounded, I did not want to add this lovely doctor to the list. However, by then I found out about NDT and how to obtain it myself, so I did just that.

About 10 years later, at a diabetes consultation (I have diabetes as well), the endocrinologist, instead of like all the previous ones moan about my 0.01 TSH, said he wanted to investigate further. He also did extensive tests and agreed I did need it and wrote to my GP to prescribe it. I was not quite sure what to do because the T3 that was being prescribed was only 20 mcg (the most they were willing to prescribe for fear of overdoing it), but I needed more. I was happily taking the NDT. However, I wanted it kept on my records that I needed T3. So I kept takingthe prescriptions for T4/T3. I put them aside and carried on with the NDT. Then the T3 prescriptions were stopped. Mine was stopped right at the beginning of when this started.

I kept taking the NDT. But the symptoms started back. I was very ill (long story). The doctor could not find anything wrong. Said my thyroid was OK because the TSH was 1.83. That made me suspicious because why was it 0.01. I then looked at T4 which was below range and managed to see the T3 before they blanked it out. That was below range too. So I immediately started on the T3 and low and behold within hours (yes hours) I was completely better. I had been in such pain even strong pain killers were not working. I could not stand, walk, and it was indescribable. And there almost suddenly I was absolutely fine. Records said back strain, even though they didn’t even ask any questions to ascertain this.

I am now on 100 mcg T4 and 50 mcg of T3 and am fine on this.

I know I would have probably died a long time ago if I had been left on T4 only. Things were so bad, that my body was winding down. I have had just over 20 years of normal living which I would not have had, even if I had lived on T4 alone.

I am (according to my granddaughter) officially an old lady now, and with other problems from my other conditions, but I still feel younger and better and more alive than I did those 20 odd years ago.

The doctors cannot frighten me with all their scare stories of what T3 is going to do to me, as I have seen what not having it does to me, which is scarier.