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Thyroid Information Sheet Print
Written by Administrator   
Tuesday, 07 March 2006

Dear Thyroid Patient

Thank you for taking part in the largest Hypothyroid Patient Survey ever undertaken in the UK.

Please note that this survey is completely anonymous and the information asked for, with regards to gender, age and location is for demographic purposes only. If you want to give your details and case history at the end of the survey, which may then be used for future reference with your permission, then you may do so but this is not compulsory. Please also feel free to continue on a separate sheet if necessary, numbering the answers as you do. Although we only ask for your current address and place of birth if you have lived for a long period in other areas this would also be helpful for us to consider environmental factors such as pollution, fluoride etc so please state

The purpose of this survey is to raise awareness within the UK of hypothyroidism. We believe that many people are wrongly diagnosed with other conditions instead of hypothyroidism, because of the myriad of symptoms it causes and the width of the reference range, which was set up in the early 1970’s with a group of only 25 people of which at least one was later diagnosed with the illness. In the USA in March 2003 this range was reduced by half and as such many millions more people were treated back to full health, however this has not yet been adopted here. If your initial Thyroid test (the TSH test) is within ‘normal’ range then further tests which show you could indeed be hypothyroid will not be done, and unlike other conditions where patients receive call backs for monitoring if symptoms, persist this is often not the case here, with many patients being dismissed as hypochondriacs or depressives, some even being sacked by their Doctors as time wasters. Hypothyroidism affects 1 in 4 people and is more common in women, due to the affects of hormones in the body, and in the elderly. It can also be genetic. The thyroid gland is situated in the throat and regulates the body’s metabolism, as the hormone depletes then you may experience a slowing down of all functions which is why the symptoms are so varied and often so puzzling.

Even if you are lucky enough to be diagnosed within the NHS, many patients say they are frequently just given their medication, (often without being told they are entitled to free prescriptions) told they will be on it for life and then left to get on with it, without any explanations of the cause and effects and how to manage their illness. Whereas with related conditions, such as diabetes and heart disease you are given diet plans, regular checks for cholesterol etc, all of which are relevant for hypothyroid patients. On our website you will find a list of books which it may be helpful for you to read as well as pages of information. On discovering they have hypothyroidism many patients may realise they have had symptoms for years without realising, this may have led to operations for carpal tunnel syndrome, heart disease, gynaecological problems, obesity etc all of which can be caused by hypothyroidism, Other problems such as long term neurological conditions may also be experienced. If you have had any of these then please state. Many patients may also have visited their GP’s for many years with these symptoms but been told they couldn’t be hypo because the tests ‘were normal’. We are interested in the results of any tests you may have had in order to see just what the actual range for these should be, as opposed to what it currently is, and whether these blood tests are the best way to diagnose patients. There are now some Doctors who believe that anyone with a TSH of over 2.0 and exhibiting symptoms should be considered as possibly hypothyroid and treated accordingly. An FT4 and FT3 of over half the reference range should also be treated with concern, especially after treatment has started as this is the only accurate way to tell what is happening to the body once the TSH is suppressed by medication. It has also been shown that low levels of B12, Iron (Ferritin) and Folic acid can affect your absorption of thyroid hormones as well as low cortisol and DHEA levels due to stressed adrenals, which are also then unable to make adequate levels of sex hormones leading to infertility and other female problems Please also state if after running the gamut of NHS tests you had to resort to private tests and you have been diagnosed by a private Dr in order to get well

Hypothyroidism can also be caused by factors other than the general drop in hormones as we age. It can also be caused by the after effects of the treatment for Hyperthyroidism/ Graves and also by the Auto immune system eating away at the thyroid giving rise to Hashimotos disease. However even though this is the biggest cause of the illness and its effects can alter the way the blood tests work many Dr’s do not test for this. It is therefore extremely important that you ask for this test as it can affect the way your illness progresses and how you manage it. We would urge every patient taking this survey to ask for copies of all their tests results and to become proactive in their treatment. You are entitled by law to have these for your own records and it will be useful for you to see at what stage you are in your illness

Environmental factors such as high levels of fluoride in water, natural or artificial, radiation and poisoning with heavy metals such as lead or mercury fillings and other chemicals may also cause problems, please also state if you work with these. Some foods such as Soya, foods containing fluoride such as tea, over consumption of kelp and other seaweeds and cruciform vegetables such as broccoli are also considered goitregenic and have an effect on the thyroid gland, and as such may need to be avoided. Because of its effect on the metabolism it is now believed that diet should be similar to that of other endocrine disorders such as diabetes so that the highs and slumps of energy swings experienced can be avoided. So sugars and refined carbohydrates should be avoided. Many long term hypothyroid patients may also have damage to their immune system causing an overgrowth of candida (thrush) in the gut and elsewhere. This diet will help with that. You may also experience high cholesterol levels, prior to the TSH test this was one of the main ways to diagnose hypothyroidism, but seems to have been sidelined now. If you have high cholesterol then once on hormone replacement this will drop naturally with out the need for statins, many of our members’ experenineced dramatic reductions with 3 months of starting treatment of many of their symptoms including this one. They also noticed a drop in blood pressure without the need for medication once the metabolism started working properly again

Since the 1970’s the standard medicine for the treatment of hypothyroidism has been synthetic T4 replacement with Thyroxine. This gradually replaced the desiccated thyroid extract which had been in use for many years previously. To such an extent that many Dr’s do not know of the existence of alternative medication or only know of them by the urban myths put out by the drug companies. However a large minority of patients cannot convert T4 to T3 the active hormone and which is essential for brain and tissue function. Test have been done which show that patients have a greater sense of well being if T3 is added to the Thyroxine although this is not acknowledged by many dr’s and is not common practise. Other patients who have requested and taken desiccated thyroid extract (armour) form pigs, also improve drastically as it naturally contains not only T4 and T3 but also other thyroid hormones such as T1 and T2 and calcatonin which helps improve bone density. Thyroxin alone can cause osteoporosis whereas our members on armour who have had tests show bone density of someone half their age. In order to maximise your body’s ability to convert T4 to T3 then it is advisable to take care of the liver, where this occurs, by taking supplements such as selenium and milk thistle and members experience relief when taking several supplements and alternative therapies. When taking thyroxin it is important not to take it with certain foods containing Vitamin c, dairy or iron, It also needs swallowing to break down the coating and should be taken in one dose. Armour thyroid is better taken sublingually (under the tongue) and as it is then directly absorbed into blood stream is not interfered with by any foods. It is also better to split it twice a day as T3 has a short half life.

As well as the long table of symptoms experienced by hypothyroid patients there are a number of common lesser problems such as excess ear wax, blood in nasal mucous, scaly elbows often just one) in growing hairs etc. we are trying to collect numbers for these so please indicate if you think of anything

Thyroid disease can be genetic. You are more likely to get it if another family member has it or has a related condition. This is particularly true of the Auto immune component of the disease. Auto immune illnesses include cancers, pernicious anaemia, ankolysing spondylitis, Multiple Sclerosis, Lupus, Sogjerns syndrome, rheumatoid arthritis and many more; it is also due to its effects on the brain that many mental conditions such as dementia and auto spectrum disorders such as autism may fall into the same group. Although not widely recognised patients of Hypothyroidism may experience a poor quality of life, particularly if not diagnosed for many years, due to depression, exhaustion etc and may have to give up work or have marital or family breakdowns. This has a huge cost to the country and we would be grateful if you could list any benefits you may have been in receipt of due to this so that the costs can be assessed. Also if you have been undiagnosed for a long period of time insurance policies may not have kicked in as the seriousness of your condition is not believed.

Please feel free to write down anything you may think has triggered your illness such as post partum, trauma, stress, excessive intake of foods such s Soya, iodine etc

Please note the Survey is now closed. However please read the information contained in the covering letter which may prove useful to you

Last Updated ( Thursday, 04 August 2011 )
 
 
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