I was trained as a nurse in Germany in the early 90s. The past 13 years of my life I have spent working as a RGN and living in Bristol, UK. In 2003 I was diagnosed with hashimoto’s desease and ever since on my own initiative I went for my annual thyroid test that consisted of TSH –only!
In the past 4-5 years I developed all the classical hypothyroid symptoms including (lethargy, low mood, mood swings, coarse hair, dry skin, cold sensitivity, irregular periods, heavy periods, bad PMS, constipation, weight gain of 4 St in 2 years, abdominal bloating, facial swelling, low, low, low energy, concentration problems, forgetfulness) unexplained lactation of my breasts (my youngest child is 9 years old, breastfed for 6 months). I am still lactating. I truly believe that one does not have to be in the medical profession to realise that this is NOT normal and may require further investigation. I lived in fear of having a prolactinoma( brain tumour) for at least a year before my GP agreed to check my prolactin levels .
My visits to the GP resulted in refusing a prolactin levels check, refusing a thyroid panel test, being told to “ stop squeezing my breasts”, being given Fluoxetine ( an antidepressant), being told to exercise more ( how do you do that if you can barely manage to function trough your day?).
My TSH was steadily increasing over the years:
2007 -1.8,
2008- 2.9,
2009- 4.5 (given antidepressants for symptoms),
2010 – 3.6,
2011- 3.7,
2012- 3.8.
For my GP the TSH was “within a normal range”. Happy times minus picture book symptoms and the fact that no one ever checked my pulse, my BP or put 2 and 2 together. It is all about the TSH (not about the patient, individual approach –at least!). No!- all people in UK are absolutely identical-clones and if the lab result says that the normal range for TSH is 5.0 so there you are! And the even more shocking fact is that the recommendation for treating people in UK is when TSH is >10 !
Just to mention my mother is celiac and has Hashimotos, my grandmother died of brain metastasis secondary to thyroid cancer, my younger sister was diagnosed with Hashimoto’s disease at the age of 23 ( she lives in Germany and her TSH was 2.7 when she was prescribed the initial dose of levothiroxine ). Years on, she is feeling great and never had any symptoms that I suffered with over the years. Her and my qualitiy of life are polar opposites. Same diagnosis, just different medical approaches and treatment!
I also suspected to suffer with celiac disease;. I was recently made aware that in 2003 I had a positive Celiac screen but was never told about it nor was I aware that I was investigated for it 10 years ago or followed up. I was avoiding grains for years because of the symptoms .Now my tTG antibodies were re-tested by my GP and as expected by me - came back negative.
When I started approaching my GP for further investigations because of elevated Liver Function Tests and years of suffering with various symptoms I started an in depth research involving studies across the world done on Hashimoto’s, Hypothyroidism and Celiac.
I am a native speaker of German and Serbo-Croatian language so I was able to investigate and read original scientific papers in these languages as well as in English. What I found is more than shocking!
The following countries USA, Germany, Switzerland, Austria, Norway, Sweden,
Belgium have a upper limit for TSH between 2.5- Germany and 3.2 Switzerland. Anything above it is treatable hypothyroidism. This is 4 times lower then the reference range in UK!
Americans have lowered the range only few years ago from upper TSH normal range of 3.0 to 2.5.How come there is a four fold difference in reference range between other developed countries and the UK alone? Does it really mean that all these other countries are putting thousands or possibly millions of their patients at health risk by giving them Levothiroxine long before any UK GP would even consider it or is it the other way around that possibly the UK’s doctors are putting millions of patients at risk of developing or not preventing progression of a disease by not treating them.
I just found out recently that Thyroxin is free of charge on the NHS!
It is not really rocket science to calculate how many millions of pounds have been saved by NHS with these guidelines. If we take the amount of people in UK that may have a TSH between 3.0 and 10.0, all the regular blood tests and free levothyroxine that they will require throughout their life, it seems a better option to relay on 40 people study done in 2004 and ignore all the masses of evidence around what the normal reference ranges should be. The German National Health Service somehow managed to have 20 billion Euros surplus last year, so they do not bother about going higher with their lab values, TSH laboratory range upper limit is 2.5 and anyone above that level is considered hypothyroid.
I happened to be in Germany recently and was unwell with heart palpitations and weakness. After initial testing in A&E, a Professor endocrinologist was involved who was left speechless that with a TSH of 3.8 and TPO antibodies of 1290 all I had was an annual TSH screen, no treatment and no follow-up sonography for 10 years. To be fair, when I told him that I am unlikely to get any treatment (ie Levothyroxine) until my TSH reaches 10 he thought that I was hallucinating or lying for some reason.
Unfortunately this is just one story among many in this country. It is wrong; it is very bad and backwards medicine. There is so much evidence out there to prove different. My cholesterol is high, anything to do with my Hashimoto’s? I found about 5 recent research papers that prove –YES! Also found that if not treated with Thuroxine, all this fat is going to cause arteriosclerosis, so here I am on a highway to coronary artery disease…angina pectoris…and much more to look forward to. I see the future…
There is ton’s of research end evidence that Levothyroxine treatment in Hashimoto’s patient with even normal TSH has a huge benefit of decreasing the autoimmune response and slowing down of progression of the disease as well as minimising the real risks of developing secondary autoimmune disease ( i.e. celiac disease, rheumatoid arthritis) and thyroid cancer.
Not sure if this is because of my TPO antibodies destroying my brain tissue or pure frustration and anger that for weeks now I can not do or think about anything else but the British unique TSH guidelines!
There are lots of anecdotal stories out there about a disastrous treatment of thyroid problems in UK. There is lot of endocrinologists fighting a war about the guidelines and failure to diagnose and treat the problem by GP’s.
Where is the evidence, that all the rest of the world is wrong and the outdated UK guidelines are single, unique, perfect and right? What are we going to do to stop this madness and give possibly millions of people their lives back?
Even without all the scientific evidence only by looking at my sister who is a picture of health and me - a half way sane person can tell which approach is right!
Rapid Response:
Re: Bad medicine: thyroid disease
I was trained as a nurse in Germany in the early 90s. The past 13 years of my life I have spent working as a RGN and living in Bristol, UK. In 2003 I was diagnosed with hashimoto’s desease and ever since on my own initiative I went for my annual thyroid test that consisted of TSH –only!
In the past 4-5 years I developed all the classical hypothyroid symptoms including (lethargy, low mood, mood swings, coarse hair, dry skin, cold sensitivity, irregular periods, heavy periods, bad PMS, constipation, weight gain of 4 St in 2 years, abdominal bloating, facial swelling, low, low, low energy, concentration problems, forgetfulness) unexplained lactation of my breasts (my youngest child is 9 years old, breastfed for 6 months). I am still lactating. I truly believe that one does not have to be in the medical profession to realise that this is NOT normal and may require further investigation. I lived in fear of having a prolactinoma( brain tumour) for at least a year before my GP agreed to check my prolactin levels .
My visits to the GP resulted in refusing a prolactin levels check, refusing a thyroid panel test, being told to “ stop squeezing my breasts”, being given Fluoxetine ( an antidepressant), being told to exercise more ( how do you do that if you can barely manage to function trough your day?).
My TSH was steadily increasing over the years:
2007 -1.8,
2008- 2.9,
2009- 4.5 (given antidepressants for symptoms),
2010 – 3.6,
2011- 3.7,
2012- 3.8.
For my GP the TSH was “within a normal range”. Happy times minus picture book symptoms and the fact that no one ever checked my pulse, my BP or put 2 and 2 together. It is all about the TSH (not about the patient, individual approach –at least!). No!- all people in UK are absolutely identical-clones and if the lab result says that the normal range for TSH is 5.0 so there you are! And the even more shocking fact is that the recommendation for treating people in UK is when TSH is >10 !
Just to mention my mother is celiac and has Hashimotos, my grandmother died of brain metastasis secondary to thyroid cancer, my younger sister was diagnosed with Hashimoto’s disease at the age of 23 ( she lives in Germany and her TSH was 2.7 when she was prescribed the initial dose of levothiroxine ). Years on, she is feeling great and never had any symptoms that I suffered with over the years. Her and my qualitiy of life are polar opposites. Same diagnosis, just different medical approaches and treatment!
I also suspected to suffer with celiac disease;. I was recently made aware that in 2003 I had a positive Celiac screen but was never told about it nor was I aware that I was investigated for it 10 years ago or followed up. I was avoiding grains for years because of the symptoms .Now my tTG antibodies were re-tested by my GP and as expected by me - came back negative.
When I started approaching my GP for further investigations because of elevated Liver Function Tests and years of suffering with various symptoms I started an in depth research involving studies across the world done on Hashimoto’s, Hypothyroidism and Celiac.
I am a native speaker of German and Serbo-Croatian language so I was able to investigate and read original scientific papers in these languages as well as in English. What I found is more than shocking!
The following countries USA, Germany, Switzerland, Austria, Norway, Sweden,
Belgium have a upper limit for TSH between 2.5- Germany and 3.2 Switzerland. Anything above it is treatable hypothyroidism. This is 4 times lower then the reference range in UK!
Americans have lowered the range only few years ago from upper TSH normal range of 3.0 to 2.5.How come there is a four fold difference in reference range between other developed countries and the UK alone? Does it really mean that all these other countries are putting thousands or possibly millions of their patients at health risk by giving them Levothiroxine long before any UK GP would even consider it or is it the other way around that possibly the UK’s doctors are putting millions of patients at risk of developing or not preventing progression of a disease by not treating them.
I just found out recently that Thyroxin is free of charge on the NHS!
It is not really rocket science to calculate how many millions of pounds have been saved by NHS with these guidelines. If we take the amount of people in UK that may have a TSH between 3.0 and 10.0, all the regular blood tests and free levothyroxine that they will require throughout their life, it seems a better option to relay on 40 people study done in 2004 and ignore all the masses of evidence around what the normal reference ranges should be. The German National Health Service somehow managed to have 20 billion Euros surplus last year, so they do not bother about going higher with their lab values, TSH laboratory range upper limit is 2.5 and anyone above that level is considered hypothyroid.
I happened to be in Germany recently and was unwell with heart palpitations and weakness. After initial testing in A&E, a Professor endocrinologist was involved who was left speechless that with a TSH of 3.8 and TPO antibodies of 1290 all I had was an annual TSH screen, no treatment and no follow-up sonography for 10 years. To be fair, when I told him that I am unlikely to get any treatment (ie Levothyroxine) until my TSH reaches 10 he thought that I was hallucinating or lying for some reason.
Unfortunately this is just one story among many in this country. It is wrong; it is very bad and backwards medicine. There is so much evidence out there to prove different. My cholesterol is high, anything to do with my Hashimoto’s? I found about 5 recent research papers that prove –YES! Also found that if not treated with Thuroxine, all this fat is going to cause arteriosclerosis, so here I am on a highway to coronary artery disease…angina pectoris…and much more to look forward to. I see the future…
There is ton’s of research end evidence that Levothyroxine treatment in Hashimoto’s patient with even normal TSH has a huge benefit of decreasing the autoimmune response and slowing down of progression of the disease as well as minimising the real risks of developing secondary autoimmune disease ( i.e. celiac disease, rheumatoid arthritis) and thyroid cancer.
Not sure if this is because of my TPO antibodies destroying my brain tissue or pure frustration and anger that for weeks now I can not do or think about anything else but the British unique TSH guidelines!
There are lots of anecdotal stories out there about a disastrous treatment of thyroid problems in UK. There is lot of endocrinologists fighting a war about the guidelines and failure to diagnose and treat the problem by GP’s.
Where is the evidence, that all the rest of the world is wrong and the outdated UK guidelines are single, unique, perfect and right? What are we going to do to stop this madness and give possibly millions of people their lives back?
Even without all the scientific evidence only by looking at my sister who is a picture of health and me - a half way sane person can tell which approach is right!
Competing interests: No competing interests