When I first got involved in the world of thyroid, I was in a position to hear a doctor, supposedly IN CHARGE and caring for a patient with a severe thyroid issue in an emergency situation, saying words like:
It could be because your doctor prescribed too much levothyroxine for you. Oh no! It must be too little. Umm, I'll be back in a minute...
No - she never did get back with anything of any use whatsoever.
I have seen doctors who have seen a TSH result rise - and so reduced the patient's levothyroxine dose! And vice versa. (Not talking about complicated cases - dead straightforward, really obvious results.)
When I was diagnosed I was put onto 25 micrograms of levothyroxine. I had to ASK for another test and an increase to 50. I had to ASK for another test and an increase to 75. I had to ASK for an increase to 100. When the product I was taking was withdrawn from the market for failing to deliver its claimed dose, I had to inform my doctor and pharmacist because they had no idea it had happened. I had to ASK for a replacement prescription so I could get some levothyroxine tablets that delivered their full claimed dose.
Given that, if we are lucky, we get ONE test a year, how can a doctor actually recognise when we need a dose adjustment?
By this time, I put my own dose up to 125 myself. I found it too much. I dropped to 100 again. Too little. I alternated 100 and 125 and it felt the right dose but something was till wrong. I tried 112 every day - and that has been my dose for two, three years (something like that). I recently changed doctor and said I was doing this, she saw my test results, and was happy. She was even happy after I had told her I was getting my 12 microgram tablets from abroad (because they were not available in the UK at that time). That could have taken several years if I had simply allowed the system to meander along as it usually does.
We are all indeed individuals with our own health issues and sensitivities, intolerances, allergies.
Hang around for a while and you will see that people are always advised to stick to the same makes of medicine - unless there is a positive reason to change. Once you find what is best for you, stick with it. On the other hand, where people are having issues, they usually have explained to them what options they have.
You know, in areas such as cholesterol and diabetes, the health system encourages people to know their numbers. Medics are legally obligated to seek informed consent from their patients. Just how can anyone grant informed consent if they have not been informed? Thyroid patients need to understand. We need to take responsibility so far as we are able. Half the NHS tells us this while the other half prevents us getting the information we need.
A ludicrous number of people here have never even been told to take levothyroxine away from food. Yet that can can a considerable impact on their absorption.
I suspect that the majority of people here are in much the same boat as me - chances of seeing the same doctor twice are minimal. How can anyone build up a relationship with their GP when that is how it works.
Even if you do build up an excellent working relationship with your GP, how can he/she help when they are prevented from prescribing the medicines that are often required? New prescriptions for liothyronine (T3) are next to impossible to obtain and maintain.
Finally, this NOT an NHS site. It is hosted by a private company, known as HealthUnlocked, overseen by the charity Thyroid UK, moderated by volunteer administrators and contributed to by many thousands of patients.