This page is getting long, click below to jump to the section of interest, or just have a read!
- NHS Thyroid Information
- Thyroid Patient Support Groups
- Books for sufferers of thyroid disorders
- Other UK thyroid related resources
- Other thyroid resources (not UK)
Nothing on this page should be taken as constituting medical advice,
if you need medical advice contact a qualified doctor.
The web has much advice good and bad, and you must use your critical
faculties on all the information you receive, even from your own
doctors. My intention is to provide a concise list of UK related
thyroid information on the worldwide web, the author can not control
the content of sites linked to. I will only list sites I believe
contain useful, and generally accurate information, however I will not
exclude sites simply because some of the information is incorrect or
out of date.
NHS Thyroid Information
Patient Advice
NHS information intended for patients is provided via NHS Direct’s
website, the complaint specific pages have a button to perform a search
for more information on that complaint.
Clinical Knowledge Summaries
NHS Clinical Knowledge Summaries (formerly Prodigy) is intended to provide evidence based know-how about common conditions to doctors, to assist them during consultations.
NICE Guidance
National Institute for Health and Clinical Excellence have thyroid related guidance on a few topics of relevance to the management of thyroid disorders.
- Intraoperative Nerve monitoring during thyroid surgery
- Retrobulbar irradiation for thyroid eye disease
UK Thyroid Support Groups
Support group with full charitable status, and interest in research.
Arranges many talks around the country.
Thyroid UK is a leading UK patient support group.
One of the doctors advising the editors of Thyroid UK’s newsletter, Dr
Barry Peatfield, was involved in a controversy with the BMA, and some
of his opinions are not accepted by his peers. However I feel this
organisation, and Dr Peatfield, do a useful job in informing patients
about alternative treatments, and in putting patients in contact with
one another.
Web based discussion forum for those with thyroid problems in the UK and Ireland.
- Contact a Family (Charity for finding others with a similar complaint) Thyroid Disorders page
- RNIB Thyroid Eye Disease Information
-
TED Charitable Trust providing care and support to those suffering from Thyroid Eye Disease.
-
Butterfly Thyroid Cancer Trust Support group for people with thyroid cancer
-
AMEND registered charity supporting those affected by Multiple Endocrine Neoplasia.
Books about the Thyroid
Below is a selection of books about thyroid problems. For the most part these books are written, or published in the UK. Where the author has written more than one relevant book the authors name will link to a search for books by that author. The links direct to AbeBooks.co.uk
which can provide both new books, and books that are out of print. You may want to check that secondhand editions of books are the latest edition of that book.
Understanding Thyroid Disorders – Toft, Anthony
Understanding Thyroid Disorders is a British Medical Association guide for patients. It is well illustrated, accurate, but quite short. So it won’t answer difficult questions, but if you just want a simple explanation of what a thyroid is, what it does, and how it might go wrong, this is the book for you. This book has also been translated into other languages, including German and Italian translations.
Anthony Toft is a consultant physician in the Endocrine Clinic at Edinburgh Royal Informary, and has published many and varied papers on thyroid disorders in peer-reviewed medical literature.
Coping with Thyroid Problems – Joan Gomez
Coping with Thyroid Problems (Overcoming coming common problems) covers both problems of Under and Over active thyroids, and is intended to give practical advice and reassurance to people with thyroid problems. Gomez’s coverage of the topic is especially good on thyroid issues relating to pregnancy, babies, and children.
Dr Gomez has written a number of self help books covering diabetes, Crohn’s disease, gallstones, Bulimia, Asperger syndrome, anaemia, and living a long life. She holds a Diploma in Psychiatry.
Thyroid Disease (The Facts) Vanderpump and Tunbridge
This book has just been released in its fourth edition. The fourth edition lists Mark Vanderpump as a co-author. Older editions list the recently deceased Sir Richard Bayliss, former physician to the Queen, and a very highly regarded doctor in his day.
Mark Vanderpump is a consultant physician at the Royal Free Hospital. Dr W Michael Tunbridge is a Director of Postgraduate Medical education at the John Radcliffe hospital, and is editor of several editions of this book.
Other UK thyroid resources
Simple, clear explanation of the mental health issues that can surround thyroid disorders. Site was supported by the MIND Millennium Award. A good site, but reads like an information leaflet rather than being particularly interactive.
Belongs in the UK section, by dint of Edna beavering away in the
British Library to find everything that doctors have forgotten about
treating thyroid disease.
Other thyroid information, nothing to do with the UK, but too good to omit
Must be the best referenced Thyroid site on the Internet, what these
guys don’t know about thyroids, they add when you tell them about it!
Best suited for doctors, as the material is heavy going. Some of the
worlds leading thyroid consultants will answer your doctor’s questions.
This site contains excellent algorithmns covering common treatment
regimes, using these as a reference will allow your GP’s to avoid two
common mistakes, undermedicating the hypothyroid (not reducing TSH
below 2 when required), and over medicating Grave’s disease patients
(through over reliance on TSH testing) .
This site is good. Did I mention how much I like this site?
My TSH is ‘normal’ but I have all the symptoms of hypothyroidism -
– sorry we’ve heard this once too often. This site explains
what next?
why the lab normal range for TSH should be reduced to “0.48 to 3.6″.
The American Association of Clinical Endocrinologists recommends
investigating any TSH score over 3, and my GP will investigate any
score over 2, that is accompanied by clinical signs of hypothyroidism.
Quite simply the friendliest Grave’s Support group on the web.
Elaine Moore, author of “Grave’s Disease, a practical guide” is a
regular contributor. Many of the contributors share strong views on the
use of radioactive Iodine ablation for treating Grave’s disease,
controversial as these views may be, I happen to agree with many of
them.
The second friendliest Grave’s Support group on the web. Regular
chats at totally inappropriate times for the UK unless the insomnia is
bad, and also 21:00 hours UK local time on Sunday evenings. A Java chat
application that works on more than just MS Windows and Internet
Explorer.
Where Simon Waters hangs out, let us not draw any conclusions from him hanging out at the second friendliest.
Sounds crazy, but this bacteria, from the Yersinia family (which
include Yersinia Pestis, the bug behind the Black Death), has been
fingered by some as a possible trigger for Grave’s disease, and also
Hashimoto’s disease. Many viruses and bacteria have come under suspicion
but this one keeps turning up.
Hello – my son had treatment for a brain tumour when he was 14 (2008). not surprisingly he was dx with underactive thyroid in 2010 and is on medication. He has an official endocrine appointment in November and i’m anxious to learn as much about how to test for thyroid disorders and how to understand the results. I’ve heard misdiagnosis is not uncommon. my son is tired, finds it hard to focuss and is gaining weight. appreciate any advice, tks Patricia
This site explains all common blood tests.
http://www.labtestsonline.org.uk/
If the tumour affected the pituitary or hypothalamus, then it might affect the control system for thyroid function, but this is all well within the specialism of endocrinology. Failure to diagnose, or late diagnosis is common with hypothyroidism, but because there are blood tests readily available once the condition is suspected it is rare to claim hypothyroidism when it is not present.
I have recently been diagnosed with anemia and low thyroid function, I felt so ill a month ago on every level, and have done for over 2 years, so I began taking chlorella and spirulina, sea kelp and lecithin and for the iron a natural iron water called spa tone the pharmacist said this was better than the tablet version I was being offered as it had no side effects what so ever and is natural, and within a month my hair stopped falling out, my depression and many many other symptoms lifted, and I feel well there is no more chronic fatigue and I feel so much better, however I was shocked to find out that the blood tests this week (1 month later) showed that accordingly I am worse than I was a month ago, yet I feel alive and well and I mean really well compared with how I felt a month ago or actually have felt over the past 2 years or so, I am not a person who takes “conventional” medicine if I can help it, so I was really surprised that my blood results showed such terrible results despite that I am feeling on top of the world. I have to say that I am really confused as is the GP who is trying his best to get his head around “natural” medicine. So my question is how can I feel so well when the results show that I have “worsened”, and what should I do – listen to my body or take notice of the blood results that latter would please my GP no end if I would just take the levothyroxine and the Ferrous Gluconate which is for the iron or lack of iron in my blood.
This has really got me curious and I am now looking for information, views and explanations from specialists and other medical people who can assist with this now bizarre experience.
So if there is anyone who wishes to give their views on this, then I am open and willing to listen, in the meantime I am going to continue to take the “natural” stuff and see what happens.
The Charity, Thyroid Patient Advocacy http://www.tpa-uk.org.uk is in the process of creating a World Register of Counterexamples to levothyroxine-only (T4) therapy. This short survey is applicable only to those who continued to suffer symptoms on levothyroxine (T4)-only therapy, and who found those symptoms disappeared once they were started on a T3 hormone containing product , whether synthetic or natural thyroid extract.
The objective of this Register of Counterexamples to T4-only therapy is to draw to the attention of those responsible authorities throughout the world, the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.
If you fit this category, please will you complete the 3 questions with either ‘YES’, ‘NO’ or N/A here http://www.tpa-uk.org.uk/register_of_counterexamples.php All responses will be collated online, and your email address (if you provide one) will be used ONLY to contact you at a later date should this be becomes necessary.
Sheila
Thyroid Patient Advocate
http://www.tpa-uk.org.uk
i suffer from seizures or epilepsy. my eeg scans are not conclusive. I was speaking to a Doctor friend of mine and he told me that eegs are 99.9% accurate and told me it is the Thyroid. I did a bit of research and found a link with coeliacs and thyroid disease. Coeliacs disease is very hard to diagnose. up to 2% of people have it and most do not know it. I am one of 35000 who get also Dermatitis Herperiformidis(skin rash), so it was eventually diagnosed. for the other 99.9% of people the only way to diagnose it is by endiscopy. Moral of the story is that before you take the pill check to see if you are allergic to gluten. if you are a woman its is vitally important. A friend of mine in portugal lost her baby because she had abnormal Thyroxine levels. She had the surgery to remove it and during the subsequent pregnancy everything was fine. My wife took the pill, and during her two pregnancies she had to have her Thyroxine raised. Be aware also that if someone in your family has problems with the Thyroid it is important to get yourself tested since there is a genetic link.
I hope this is helpful
Hi
great site, Im enjoying mooching, but have to let you know I cant find NPTech site, and I just get some internet training company or whatever it is. Nothing to do with blood tests and thyroid. Have they gone out of business? Maybe an update is needed?
Carole
Thanks Carol, I believe the owner of NPTech retired and sold his business to a larger company in the same line of work.
Couple of the thyroid groups (Thyroid UK, and TPA) have links to people doing private testing, but they don’t have attractive enough pricing to make them stand-out in the same way NPTech did. In most cases the groups have been offered a discount which I dare say is available to anyone who asks for a discount.
Hi,
I need urgently to find a top surgeon who specialises medullary carcinoma and Hurthle cell neoplasm and has done many thyroids operation.
I need a second opinion fast, but cant find anybody
preferably in Essex or London
Many thanks for you help
I have been an under active thyroid patient for 19 years now and have never been stable, is there something that is being missed in my treatment. I have all the classic signs and symptoms depression, hair falling out, brittle nails, dry skin, lack of concentration, pains in my muscles.
I feel so down about this each month I get my blood checked and each month it is a change in my medication, when it is reduced I sink even lower, then the following month if it is increased I never get to catch back up before it is then put back down again.
Any ideas out there??
Sonja
I have had my thyroid removed because of papillary cancer & can honestly say that I never feel well, I am always tired, depressed, over weight & suffer a lot of muscle pain. My blood Reading always comes back fine. I take 200mg of thyroxine but still I suffer all the above & because my blood results are fine the GP & Consultant will not change the dosage. What can I do?
I have the below symtoms: Puffy skin under eyes.
Loss of eyebrows
Intolerance to cold
Constipation
Weight gain
Sparse, coarse, dry hair
Dry, shiny scaly smooth skin on shins and calves, total hair loss on shins and calves.
Constant dry chapped lips.
Confusion
Depression, sudden freezing cold hands and feet. Fatigue -chronic fatigue
Aches in joints, hands and feet
Moodiness, unstable moods
Difficulty concentrating
Feeling sad
Forgetfulness
Loss of interest in activities, no motivation, too tired to work, depression, sex drive is zero, total loss of libido, only able to obtain an erection for short time.
My stupid doctor tells me my thyroid tests are normal. Doctors are paid far too much money for the help they give. Can anyone recommend a doctor who knows how to diagnose this condition correctly? Thanks
Hi Tony,
know what you feel.
I have exactly same symptoms as you and my last TSH test ( done a month ago) shows 3.33 – my stupid gp said that was nothing to worry about despite the fact that I saw my blood test results in his monitor and tsh result was in red!
I have been trying for a baby for over 3 years – and cannot get pregnant. Except that – I had 2 early miscarriages in the past – probably caused by thyroid.
Every single day I am sleepy and tiered , cannot concentrate . First time I noticed these symptoms 2 years ago but I did not realize that i could be cause of thyroid. At first I thought its anemia which I had 7 years ago ( was vegan for 13 years but I have been eating meat for about 4 years and my hemoglobin level was ok ) . I did jogging and work out for 2 hours every single day, was on law carb diet and guess what : i gained ;/
Currently dont go to the gym (i was very fitness person) because dont have enough strength – all i want is sleeping but eat very healthy small portions – 5 times a day , no fast foods etc 2-2.5 litres of water and cannot lost even 0.5 kg . I am sleepy and tiered few hours after waking up – even if I slept 8-9 hours. really dont know what to do . I have done some research and learned that when someone is trying for a baby should check tsh level – because during pregnancy must be under 2.0 to prevent of brain damage of the baby and others fetal defects .
I am going to different gp next week and if nothing changed – I will have to change my medical practice ;/ and find someone who treats people and their symptoms not the numbers only ( was told that 0.33 is nothing ).
Feel awful every day get worse and worse ;/