so says Diane Holmes, she suffered for 23 years mis diagnosed 6 times , treated for illnesses she did not have which at best did nothing to alleviate her dibillitating symptoms and at worst made her even more ill! Diane eventually went to see dr Barry durrant peatfield who was recommended to her. Within a week she was diagnosed with under active thyroid although her blood tests were normal leading GP s to eliminate that as a diagnosis. Dr peatfield did not go by blood tests . Diane was prescribed thyroid hormone and was back to full health in a matter of months. ! Diane has worked tirelessly to try and change how thyroid disease is diagnosed but so far does not seem to have succeeded . She worked together with dr Gordon skinner for two years and was shocked at how many patients suffered from misdiagnosis of hypothyroidism . Many many hundreds told they had CFS have since been treated and cured with thyroid hormone of one kind or another . The name of her book " tears behind closed doors " was my incentive to find a doctor who would ignore normal blood tests and give me a trial of thyroxine which is what I did and within a few weeks I was 60/ 70% better . It is a case of trial and error finding the right hormone that suits your needs some T4 some T3 some T4 + T3 some natural desiccated thyroid . Hope this helps some of you suffering with pain and the most awful symptoms approach your doctors with this information and hopefully get the help you need . As Diane says , misdiagnosis of hypothyroidism is " the gravest faux pas in medical history" best wishes sy
There should be evidence from properly conducted research before people assume that diagnosising and treating thyroid problems in this way is useful.
Very interesting Sylvia! You don't mention how Peatfield diagnosed it though. Do you know?
I have a relative who is ill like myself...we have read Dr Peatfield`s book, and agree with you, and him, "normal" thyroid readings are not enough to diagnose with....there are many people who have seen him, and become well again...there is also a website. My point is, my relative saw a consultant, but mention, more in depth tests, or Dr Peatfield, and they don`t like it!....so it`s pay private, which is disgusting.....with the symptoms displyed like Diane had....why can`t doctors try a short course (of very cheap) thyroxine to see if there is improvement....no, hopefully we won`t get the help we need, not while doctors are so blinkered! NORMAL is not normal for everyone!...and more tests are needed!....
Please may I ask how you went about finding a doctor who ignored normal blood tests??
if you look. Into thyroid , fibromyalgia and CFS you will see how much research has gone on , dr peatfield is not alone in saying the standard blood tests are unreliable. Re dr John Lowe dr Gordon skinner dr David Derry . Doctors were taught in training , before the TSH test was " invented" to go by signs and symptoms and basal temperature which had been used since 1945 . Nowadays if the bloods are normal thyroid is discounted no matter how many symptoms the patient has ! All these doctors have treated and cured thousands of people many "diagnosed" with ME/ CFS and fibro with no ill effects in fact they are so grateful for giving them back their lives!
What is the TSH test Sylvia?
Thyroid stimulating hormone it comes from the pituitary gland its purpose is to stimulate the thyroid gland to make more hormones . TSH rises when the thyroid is struggling T 4 lowers if it is struggling . If a person has autoimmune thyroiditis it can be years before these tests show hypothyroidism . It is not just a case of dishing out hormone replacement , T 4 ( thyroxine ) is the usual one but each individual's needs are different some need T4 some T3 ( T4 must convert to T3 which is the active hormone ) some need T4 + T3 some T3 only some are better on natural desiccated thyroid .
Oh thank you for explaining.
I really want to know how these doctors diagnose it without tests?
There's been a few bits of research, but none of it leading to good evidence that supports this more alternative approach. There's some evidence that those who results are on the edge of normal/abnormal would benefit from treatment when they often do not recieve it in the UK, but not that those with completely normal results and just symptoms do benefit from these treatments over placebo.
PS: I may have missed more recent research, but that was the state of play until recently, and I've not been able to find news of any breakthrough since then. I think that people should be cautious about paying for treatments that do not have good evidence of effectiveness.
Well said Fidd. I wish someone would explain to me how they diagnose without tests?
Dr peatfield recommends reliance on the basal temperature , which has been used since 1945 , also adrenal stress test. He says its function needs to be restored in order to help the thyroid in some cases if the patient has been ill for a long time, also importantly signs and symptoms and a trial of thyroid replacement hormone , as you know there is no test for CFS it is a diagnosis of exclusion . Because your thyroid bloods come back from the lab normal, hypothyroidism is dismissed . How do you know all the right tests have been done ? Do you know about autoimmune disease ? Do you know that tests are more often than not ,normal for years before they show the thyroid is struggling !? Doctors rarely ask for thyroid anti bodies tests they just go by the TSH tests they come back normal , diagnosis CFS ! The symptoms for CFS and hashimoto disease which is the main cause of hypothyroidism are much the same! Dr Lowe dr skinner who sadly have passed on , treated CFS patients with thyroid medication with great success and thanks from grateful patients you can research for your self and make your own conclusion sy
Thank you Sylvia; I appreciate that.
I might just add dr utiger who developed the TSH test which became the ' gold standard ' for diagnosing hypo and hyper thyroidism states , I hope doctors are still being doctors and using signs and symptoms for diagnosis , and the best way is by giving a trial of thyroid hormones .
With great difficulty Linda , I can understand why GP s are reluctant to prescribe medication for something the blood tests say are not needed but going back over the years the only thing doctors diagnosed hypothyroidism with was basal temperature and touch and symptoms. They were given NDT ( natural desiccated thyroid ) if the patients symptoms disappeared they stayed on for life if the patient did not get any better other causes were looked into. In 1973 thyroidoligists decided that the TSH test would be the best test for diagnosing thyroid problems so all medical students were taught this is the way we diagnose hypo and hyper , gp s and endocrinologists followed this and to this day they stick rigidly to this test. !! Dr Derry states " 7 years later in 1980 two new illnesses appeared that had never been heard of up till then, chronic fatigue syndrome and fibromyalgia . Is this because the TSH test is unreliable were thousands of patients with all the awful symptoms of hypothyroidism being told there is nothing wrong with your thyroid , because the TSH test says so!!! Dr Derry who has practiced for 30 years believes so !! He in his lectures states , " I still diagnose and prescribe the old way that I was taught signs and symptoms and all of my patients symptoms disappear ! If I stop their treatment or they do , for various reasons , their symptoms return. It is a pity most of us don't have a dr Derry or a Lowe or skinner . As I have said before I was " diagnosed with CFS as all my tests were repeatedly normal my life I can only describe as a nightmare until I found a doctor who thought outside the box and went by symptoms . He started me on a low dose of thyroxine and upped it over time the relief to be free of those awful dibillitating symptoms since then I have been diagnosed with hashimoto disease ( autoimmune thyroiditis) which is the biggest cause of hypothyroidism . I am not saying every one has been misdiagnosed and everyone has a thyroid disease I do not want to insult or annoy anyone suffering with such a dibillitating illness I just want people to know that if it happened to me and it happened to Diane and thousands of patients treated and cured by doctors such as Lowe skinner and Derry it could happen to you . Sy
I am sorry to disagree I know of many people myself included who had absolutely normal results for years which is why we were not treated with thyroid meds . The answer was always THERE IS NOTHING WRONG CONNECTED TO YOUR THYROID! But something very wrong with there diagnosis , CFS ! Fibromyalgia! There was a study done to see if there was a link between CFS / thyroid in 2010 . Fine needle aspiration ( FNA) is used usually if there is a possible cancer in the thyroid but it can be used to see if there is inflammation eg autoimmune thyroiditis ( hashimoto disease) . A number of patients with chronic fatigue syndrome and normal thyroid blood tests for hypothyroidism were given this test where a sample of the gland is taken and analyzed . The results were a large percentage had in fact autoimmune disease they were given thyroid replacement hormone and recovered from their symptoms . Dr peatfield remarked ' there is no need to go sticking needles in patients necks a diagnosis can be reached by looking at signs and symptoms and a trial of hormone replacement, but if we did there would be a lot less people walking around with hypothyroidism !!
Would you be able to post the title of that study? If there aren't serious flaws with it I'm surprised I've not heard of it. Thanks.
I've had the TSH test, and it was normal. Stil sick after 11 years.
I always think that thyroid issue is a symptom. I mean, your thyroid wouldn't suddenly goes whack without anything would it? There seems to be lots of chain in CFS conditions that could burdens thyroid functions. Except, for autoimmune conditions such as Hashimoto's in which TSH check clearly shows the deficiency.
During the initial onset of mine, at some point I do thought it was hypothyroid symptoms. I was 3 months during my smoking cessation. Some stories pointed thyroid issues due to quitting. However, later I found out that those complaining are 50-60 years old, not a 34!
Out of curiousity, I was checking on how thyroid hormones has any possible relation in CFS remedy, even without any sign of thyroid deficiencies. Then I found these researches:
- Nerve regeneration and thyroid hormone treatment
- Role of thyroid hormones and their receptors in peripheral nerve regeneration
- Thyroid hormone in biodegradable nerve guides stimulates sciatic nerve regeneration: a potential therapeutic approach for human peripheral nerve injuries
- Thyroid hormone promotes transient nerve growth factor synthesis in rat cerebellar neuroblast
- Role of thyroid hormones in different aspects of nervous system regeneration in vertebrates
Now does that ring a bell?