Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Hi Folks! I was diagnosed with a mild hypothyroidism about 2 1/2 years ago. At the time I couldn't do more than about 2hrs a day of anything without crashhing out for the next two days. I was started on 25mcg per day, which made a difference almost immediately. This was soon increased to 50 mcg with another great improvement. I was was up to maybe 60-70% of my previous energy. However, my blood results showed I was on sufficient thyroxine. I struggled on for the next 2 years until I was finding it difficult to control my symptoms with sufficient rest. My GP agreed to try me on 75mcg for 2 months. All my unpleasant symptoms left me and regained 90% of previous energy. However, my TSH went too low and I was reduced back to 50mcg. After a month all my previous symptoms returned. She kindly allowed me to increas to 62.5mcg, by taking half a 25mcg tablet extra each day. That has kept me stable, but lacking in energy. However, my TSH are still just below 'normal' and she says I will have to reduce back to 50mcg. I fear that I will be unable to continue work, as it will not e possible to commit to regular activity. I did see 'a specialist' physician (not endocrinologist) after 14months of waiting, who didn't have my notes, but decided after less about 3mins that I have CFS and there was nothing he could do. I'm not sure I agree with this diagnosis, but at any rate I feel I should be allowed to take the risks which go with an over dose of thyroxine, when I feel I will have no life worth living without it. My blood pressure, pulse rate and body temperature are consistently below normal, even on 62.5mcg, so the only risks appear to be osteoporosis and heart problems. At the moment I'm able to take some exercise (eg cycling to work), but without the extra thyroxine I will not be able to do nearly so much. Is there any work to compare the increased risk of osteoporosis due to too much thyroxine v that due to reduced exercise? Will the heart problems come on slowly or suddenly? Are they reversible? If I'm heading for sudden death I'd rather live first! Well, that's me! I guess my problems are tiny compared to many members, but if anyone has any answers to my questions or advice to offer I'd be delighted to hear it and will look forward to hearing about some of you. Not all as I've been warned I could get inundated if I get everyone's post! Its great to know I'm not alone, so thanks for being there everybody. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Hi, welcome to the group, do we call you Sally, I just had a similar experience with my endocrinologist, I'm on a trial of 50mg levothyroxine, my endo tried going down the lines of CFS but I managed to persuade her otherwise with info supplied by some other group members. She has agreed to more test and up my dose to 75mg. You'll find all the support and information you need here. If you want to limit your post go into edit membership at the top of the page and set your email delivery to only receive important Emails and access post from the messages page. Best wishes keith > > Hi Folks! I was diagnosed with a mild hypothyroidism about 2 1/2 > years ago. At the time I couldn't do more than about 2hrs a day of > anything without crashhing out for the next two days. [Edit Abbrev Mod] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Hi Sally I am so pleased that you have joined us here and we promise that we are able to help you in your situation. You would do well to change your doctor, and I really mean that. She knows NOTHING about treating hypothyroidism and is actually causing you harm. This forum is full of sufferers who have felt the need to join us here because they have been let down so badly by the NHS. The fact is your doctor is treating the lab results and not you. She should understand that anybody who is hypothyroid has been diagnosed because their thyroid function tests were out of the reference range and the idea of giving you thyroid hormone replacement is to take away your unpleasant symptoms which would show by your raised TSH (a pituitary hormone that is released when your T4 and T3 are low to tell the thyroid to secrete more of these hormones). Once your thyroid starts to secrete more T4 and T3 and your body starts to function better, then there is less and less need for your pituitary gland to excrete any thyroid stimulating hormone (TSH). A low TSH result can indicate an overactive thyroid gland (hyperthyroidism) or excessive amounts of thyroid hormone medication in those who are being treated for an under active (or removed) thyroid gland. Your GP should know that you are not exhibiting symptoms or signs of OVER active (hyperthyroidism) and that your low TSH could be caused by too high a dose. The average dose of levothyroxine is around 150mcgs to 200mcgs, some taking doses as high as 300mcgs and more without becoming hyperthyroid, getting osteoporosis or heart disease. What you need to do Sally is to get all of your thyroid function test results from your GP and post them here, together with the reference range for each test, because without the reference ranges, we cannot help. These results are yours by law. Phone the reception of your surgery and tell them you will be calling on such and such a day to collect your thyroid function test results and references and would they have them ready for you at that time. Giving a diagnosis of CHS in such a case is what we call a " dustbin diagnosis " . A diagnosis that has arisen since the invention of the blood tests. Before blood tests, people were treated via symptoms, signs, basal temperature, clinical examination and their dosage of thyroid hormone replacement was titrated until they reached a level of hormone replacement that took away their symptoms. Now, many doctors treat the patient by blood results alone, and if symptoms remain when taking thyroid hormone replacement - the doctors say you are suffering from CFS, ME, FM or 'functional somatoform disorder' meaning, it's all in your head. This is simply not good enough. Once you have been given any of these diagnosis, you are then left to get on with your weary, troublesome life - without further care from your doctor. I would write to your doctor and tell her that you now wish to be referred to a thyroid specialist - and one of your choice. You can choose any specialist throughout the UK since last April 2008. This is called Choose and Book. I will try to remember to send you a list of 'good' doctors to see if there is one that you would like to be referred to. Some of the doctors on my list are private, and some are NHS - the NHS one's I have typed in bold. You may have to be assertive with your GP about this, but put this request in writing - it always helps. Ask also that your request be put into your medical notes. This is important - in case you need to refer to this later if it is ignored. Your health is your number one priority and you must do everything you can to regain it, and if your GP refuses to help you, then you have to take your health into your own hands - but we can help you here. First, read everything that you can. Go to our website www.tpa-uk.org.uk and click on 'Hypothyroidism' in the Menu and read everything there is there. Read also (in the drop down menu) the Symptoms and Signs, the Associated Conditions, and about the different treatments. The more you read, the more you will understand - and also remember, knowledge is power. You will learn lots more than your GP is even aware of. When you write to your doctor, ask also if she will test your ferritin level (stored iron) as a low ferritin often stops your levothyroxine from being absorbed. So does having candida and low adrenal reserve (read about these on our website) but doctors sadly, are not even aware about these conditions. List all of your symptoms and signs and mention the one's that have gone away with your increases in dose and the one's that came back when she lowered your dose. Have you had a test to see whether the cause of your hypothyroidism was Hashimoto's disease. Hashimoto's is caused through having antibodies to your thyroid. There are several causes of hypothyroidism, but having antibodies to your thyroid is one of the main causes. The antibodies see your thyroid tissue as public enemy number one and set about its destruction. The more your thyroid becomes destroyed, the less hormone it is able to excrete. The less thyroid hormone you make, the more thyroid hormone replacement you need. Whatever your GP tells you, there is NO evidence or clinical studies to show that being on thyroid hormone replacement is a cause of osteoporisis and she will not be able to back up what she is trying to tell you. This is an ugly rumour put out by some ignorant doctors. Neither is there evidence to show that decreased exercise alone will cause osteoporisis. There is, however, much research to show the main cause of osteoporisis is menopause (I can let you have many references to these studies and research if you need to show them to your GP). Heart problems can be caused through a lack of thyroid hormone replacement and not taking sufficient replacement. However, taking VERY high doses of thyroid hormone replacement could cause osteoporisis and heart problems - but at 75 mcgs, this is considered a small dose. Has your GP told you that you are risk of sudden death if you have a low TSH? If this is so, she should be corrected, and quickly. She is frightening her patients unnecessarily. If, when you registered, you opted to receive 'Individual Emails' then yes, you might well be inundated with messages because you will receive messages from all our members on many and varied subjects to do with hypothyroidism. This forum has some very heavy traffic. However, you can opt to receive a Daily Digest where you get up to 25 messages in just one Email, or you can opt to receive NO Emails, and you can read and write direct from the website. If you have any questions at all, just shout, and somebody will be along to help try to find an answer. Luv - Sheila Is there any work to compare the increased risk of osteoporosis due to too much thyroxine v that due to reduced exercise? Will the heart problems come on slowly or suddenly? Are they reversible? If I'm heading for sudden death I'd rather live first! Well, that's me! I guess my problems are tiny compared to many members, but if anyone has any answers to my questions or advice to offer I'd be delighted to hear it and will look forward to hearing about some of you. Not all as I've been warned I could get inundated if I get everyone's post! Its great to know I'm not alone, so thanks for being there everybody. Quote Link to comment Share on other sites More sharing options...
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