This short post arises from the emails and comments that I have been receiving from thyroid patients over the last months. The emails were about endocrinologists and doctors and their advice (also known as ‘orders’). It is not just about the ‘advice’ that the patients received, but also about the lack of empathy that came along with that advice in many cases.
I have personally not seen an endocrinologist about my thyroid hormones for many years (thank goodness). So, any views I have formed are entirely based on the experience of thyroid patients. In most cases, these patients contacted me for the first time to tell me of their experience.
My conclusion is that the advice/instructions being given by endocrinologists and doctors is getting worse – not better. I naively thought that things could only get better. I am a pessimist by nature, but the situation with thyroid treatment has even gone beyond my worst fears.
The advice being given to many thyroid patients is not only poor, but it often appears to come in the form of orders, or aggressive positioning, which makes it very hard for sick people to really have the energy to argue with. Some of the poor patients who have contacted me, sound like they have been bullied. It is not right.
I have collected some of the recent statements from thyroid patients together and will list them here. Clearly no names of patients or endocrinologists are mentioned.
If any of you experience any of these comments from your own doctor, then it is time to be wary and on your guard. Be prepared to try and find a new physician. Try not to be bullied – but I know it is difficult when you don’t feel well.
A short collection of comments to watch out for:
“Levothyroxine (T4) is all you need. It works. It always converts well from T4 into T3 for every patient.”
“You don’t need any T3 added to treatment. T3 is just a placebo. It might make some patients feel a bit better for a while, but that is just in their heads.”
“Your laboratory test results will all be fine when you are just on the right dosage of Levothyroxine.”
“Getting TSH, and FT4 into the lab ranges will be completely enough to make you well. Even if we tested FT3, then it will be in range. No, it doesn’t matter if it is not high in the range – being in range is enough.”
“Don’t read books or go on the Internet. This will just confuse you and give you the wrong ideas.”
“I had high over-the-range TSH and loads of hypothyroid symptoms but my doctor just said, ‘Well, what can you expect for a woman of your age!’. I am not even 50 yet.”
“Your laboratory test results are all in range on this dosage of Levothyroxine. You are well treated. If you have some symptoms, these are not related to thyroid hormones at all. I suggest you discuss them with your family doctor.”
“Any remaining symptoms are actually just in your head, and you may need anti-depressants.”
“You need to listen to me and follow medical advice. “
“If you are still tired and overweight, then you really need to do more exercise.”
“My doctor said I was addicted to T3 because I would not lower my dose, as I knew my symptoms would come back.”
“Everyone converts T4 to T3 well. There is no such thing as bad conversion. None of the studies that have been done show this. So, there are no good arguments to prescribe any T3 for you.”
I have heard all of the above and more over the past months. Thyroid patients write to me on email all the time. You would not believe some of the rude and bullying comments they have received from doctors and endocrinologists. Often, this is because the doctor involved simply wants to get their own way and put the patient on the treatment that they want. This treatment is often Levothyroxine, and by this stage the patient invariably knows already that T4 alone simply does not work for them.
The comment(s) are often accompanied by a very un-empathetic approach. This is why I genuinely feel that things are getting worse. I have no idea what they are doing inside endocrinology training these days, but it feels like they may be equipping them for battle rather than being empathetic physicians.
So, if you receive one or more comments like the above then please do be on the look-out and be prepared to consider changing doctor/endocrinologist. There are still a few good ones but they are very few and far between nowadays. You may need to ask on forums (yes, the Internet) and try and get some input about a competent and empathetic endo.
I also would recommend any of you that have not read my books yet to consider reading:
- The Thyroid Patient’s Manual (covers diagnosis, proper treatment of hypothyroidism and other related aspects) – it will help you a great deal. This is a great book to start with.
- Recovering with T3 (essential for those who need mostly T3 treatment).
- The CT3M Handbook (a companion book to Recovering with T3 if you have low cortisol).
- Articles on Hypothyroidism (a large collection of articles on various related topics).
Best wishes,
Paul
