I’m 21 and sitting in front of yet another GP explaining how tired I am, how I can’t focus on my work and feel depressed, anxious and tearful all the time. The doctor looks at my blood results perplexed and says that my T4 and TSH is normal so she doesn’t think it’s my thyroid, but will increase my T4 medication slightly as I’m showing symptoms of low thyroid function. As per usual the increase in medication was to make no difference to my ongoing health problems.
I was diagnosed with hypothyroidism (low thyroid function) at the age of 10. It was my dance teacher Cheryl who noticed I was putting on weight and had a swollen neck also known as a goitre. My parents took me to the doctors and the GP referred me to a specialist. I was diagnosed with hypothyroidism and given thyroxine (T4) medication to be taken for life. I was to have a blood test once a year to check my levels were right. That’s about all I can remember.
I was a dancer all my young life and absolutely loved it. But when I look back I was always fatigued. I remember struggling to get through my lessons, especially a demanding ballet class that required so much strength to hold positions.
Step forward 18 years and I was still taking my medication and had started to study nutrition. This involved learning about the thyroid and understanding the abnormal blood markers involved when doctors diagnose problems in this area. I was still feeling tired, depressed and generally below par most of the time and this was worsened by my intense schedule of working full time and studying at weekends. I have always needed a lot of sleep but this was getting worse and I was struggling to cope with everyday tasks.
In 2012 I visited my GP again and was told that my blood results were normal, but was referred to an Endocrinologist at St Barts Hospital after I continued to complain that I was not feeling right. A GP will usually only request T4 and TSH blood tests. They do not request the other thyroid markers T3 or thyroid antibodies, which would indicate an autoimmune disease if antibodies were high. When I visited the Endocrinologist in February 2012 she did check all these markers and more. My blood results showed that my T4 was high but my T3 was very low. This was not mentioned at my appointment and I was sent off without any change to my current medication and without the need for a follow-up.
I was aware that my T3 was low but didn’t have the confidence at this stage to challenge the Endocrinologist. After a few more months of feeling depressed and fatigued I decided to book an appointment with Dr. Nyjon Eccles, a private doctor who specialises in bio hormone replacement. Later that year in August 2012, I attended the appointment where he informed me that I was not efficiently converting T4 to T3. This should always be investigated but unfortunately, as my situation demonstrates, it is not something that is/was considered, most likely because the prescribed T4 medication would not differ as this is the only option offered on the NHS.
Dr. Eccles prescribed Armour Thyroid (a desiccated thyroid extract that combines T4 and T3 hormones) and within a short time I started to feel better. I describe it as the dark clouds parting. My depression lifted, I stopped sleeping as much, I felt like I had more motivation for life and I was happier and much more hopeful.
What’s shocking is that for years and years I clearly had either poor conversion, or some other aspect of the T3 process was dysfunctional, and yet the doctors just kept prescribing more and more T4 medication without investigating any other possibilities.
I have since spoken to many people who experience the same problem and also pay for the medication themselves as it’s not offered to them by their GP or Endocrinologist. I simply cannot understand why care for thyroid disorders has not progressed since I was diagnosed in 1992. One of the problems with T3 medication is the short half life so the hormone is rapidly absorbed and metabolized. This is used by opponents of this medication as one of the reasons not to prescribe. I don’t agree as the solution is to take the medication twice a day in smaller doses to maintain consistent blood levels.
The New England Journal of Medicine published a study in 1999 detailing the positive effects of combined treatment of thyroxine (T4) and Triiodothyronine (T3) in hypothyroid patients.1 The combined treatment showed an improvement in cognitive performance and mood. When asked at the end of the study which treatment they preferred, 20 patients preferred thyroxine plus triiodothyronine, 11 had no preference, and 2 preferred thyroxine alone. This shows that a one size fits all approach does not work and not everyone benefits from the same treatment protocol. As such, I’m not suggesting that T3 medication is right for everyone, however, options should be provided to the patient rather than the standard T4 medication before being sent on your way. The one size fits all approach is clearly not working.
Having thyroid problems is difficult enough without having to fight to get the care we deserve and which should already be available.
It was only because I started to study the subject of health and nutrition and deepened my understanding of my condition that I uncovered the problem. I know there are many people who are suffering with ongoing symptoms and not being listened to because better training isn’t being given to GPs and Endocrinologists, or their hands are tied and they cannot prescribe the medication their patients need.
I wrote to my NHS Trust to ask why T3 medication isn’t available for patients and asked for financial assistance with my private prescription. They wrote:
NHS Hertfordshire does not recommend the use of unlicensed Armour Thyroid because of the lack of evidence to demonstrate its safety and efficacy compared with currently available licensed treatments.
Clearly the available treatment of T4 was not efficacious for me, and many others, so maybe it’s time the NHS challenges its old ideas and attempts to provide current and more patient-centered approaches. All the hypothyroid patients I have spoken to who take T3 say that it has greatly improved their quality of life. A friend I met at a health retreat, who also takes Armour Thyroid, couldn’t obtain her prescription for a month and reverted back to T4 only medication for this time. I spoke to her shortly afterwards and she recalled how all her old symptoms returned. Luckily she’s back on her Armour Thyroid and feeling much better now.
Thyroid UK completed a patient experience survey in 2015 which clearly displays the inadequate care for people with thyroid disorders. In the report the cost of seeking a private doctor is high with 17% spending more than £500, 13% more than £1000 and 10% more than £2000. I know I spent over £2000 in 4 years to see a private doctor, pay for tests and buy my medication.
A quote from the report reads:
“I lost 15 years of my life to thyroid disease, mainly because I was diagnosed very late, in part due to GP not fully understanding thyroid testing; in part because thyroxine didn’t help me at all and I had to fight to get alternative treatment. I am now very well on Natural Desiccated Thyroid (NDT) but only because of the invaluable help that I received from Thyroid UK”.
Unfortunately synthetic T3 medication and Armour Thyroid is unlicensed in the UK, so getting a NHS prescription is extremely difficult and is at the discretion of your doctor. An Endocrinologist can prescribe it but this is at their own risk. From my experience, most GPs are not even aware that T3 medication is an option and mine hadn’t heard of Armour Thyroid.
The other issue here is the lack of dietary advice provided to patients upon diagnosis. There is much that can be done to support the thyroid with the aim of reducing the reliance on medication and/or preventing the continued atrophy of the thyroid gland so patients do not have to increase their dose of thyroid medication as they get older. If the patient has Hashimoto’s Disease, this is an autoimmune disorder and therefore should be approached in a different way. As usual, getting to the underlying root cause of a condition is always a priority rather than blindly prescribing medication that may or may not help the patient in the long term.
To conclude, I encourage all patients who have ongoing thyroid symptoms and have not seen improvement from taking T4 medication, to keep pushing for further investigation and better treatment. Have more tests, seek out a different doctor who will listen and keep searching for the treatment where you see and feel improvements. Good luck!
1. Bunevičius R, M.D., Ph.D., Kažanavičius G, M.D., Ph.D., Žalinkevičius R, M.D., Prange AR, Jr., M.D.. (1999). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism. The New England Journal of Medicine. 340 (0), 424-429.Tags: energy, health, hypothyroidism, nutrition, nutritious roots, thyroid health
July 7, 2016 3:11 pm