All alone

Why is so little know about the thyroid when its a major gland in our body, when i was first diagnosed with thyroid problems my husband thought it was ( womans problems)

When i try to explain to work colleagues why i am tired and have no energy and have gained 2 stone in weight they think ( lazy fat greedy miserable ) when i try to explain to the medical proffesion they say i am normal and adequetly medicated all my symtoms are not thyroid related ( have had a tt 18 months ago) i feel abandoned and left to cope on my own, this forum is the only place where i get help support and advice and would like to thank all who have answered my previous posts and questions

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  • Your taking the time and effort to post is very much appreciated.

    What I find utterly inexcusable is that so much is known but never gets from scientific research to shop-floor medical practice that we might receive.

    I take one fragment of an example - it must have been around ten years ago that the idea of taking levothyroxine at bed-time was researched and published. A few medics out there seem to have heard of that, but almost everyone gets told to take it first thing in the morning. The Patient Information Leaflet sticks with morning and no suggestion that anything else could be possible. Of course, like everything else to do with thyroid, not everyone would choose bed-time dosing, but it is a valid and viable option. I wonder how many more years before doctor training and things like PILs catch up? I shall not be surprised if I have to repeat this in ten years.

    Rod

  • Hi Rod another example i recently had an overnight stay in hospital and was given my levo in the morning with a glass of milk!

  • Welcome to our forum,

    I'm sorry you are struggling. My personal opinion is that someone who has had a TT should be prescribed NDT, (natural dessicated thyroid hormone) a hormone which contains all of the ones that was present in a healthy gland. Some people never get really well on levothyroxine and nowadays they don't always get a sufficient amount to alleviate their symptoms. T3 should also be offered along with a reduced T4. I shall give you a couple of links which will be helpful.

    Always get copies of your blood test results for thyroid gland with the ranges (we are entitled to them), so that you can post for members to comment. Unfortunately, GPs and Endos are not always the best if we want to recover our health. We have to read and learn so much. Many GPs believe getting the TSH to a 'normal' level is fine and don't increase according to the remaining clinical symptoms. Instead we are prescribed medication for the symptom but not adequate thyroid hormones.

    web.archive.org/web/2010103...

    There are topics at the top of the page. i.e. synthroid is the USA name for levothyroxine.

    When you get a thyroid hormone blood test, don't take your medication on the morning of the test (it skews results). Take levo first thing with a glass of water and don't eat for around an hour. Any other medications/supplements take 4 hours apart from levo. If your GP hasn't tested Vitamin B12, Vitamin D, iron, ferritin and folate ask for these to be done as we are usually deficient.

    thyroiduk.org.uk/tuk/

  • The only meducs who understand thyroid are those who develop it themselves

    however the biggest problem is their insistance of reliance on blood tests which have no bearing on post TT patients who had Graves Disease

    In fact if all thyroid patients were treated on symptoms and given NDT there would be less problems

    it also has to be recognised that no pill can ever replace what a normal thyroid did

    Equally there is a %of Hashimotos patients who are more severely affected by the auto immune process andvit is these patients who presumably have a specific genetic defect are the ones who never seem to be truly well

  • I agree, there is medication out there that probably will make us feel well, so give it to us, as long as we know and understand any side effects let us have the choice, i cant remember what it feels like to happy and well

  • Tatty, I had TT eight years ago and am still struggling to find the answer to feeling normal. I have tried NDT and it seemed to exacerbate my aching symptoms but it may be perfect for you. I find a combo of T4 and T3 works quite well. I take the T3 in small doses three to four times a day, depending on my symptoms. I would strongly urge you to ask your GP for a referral to an Endo who wil prescribe it. It may be the answer for you but make sure your ferritin and serum iron levels are high in range, as you will find T3 hard to take if they are very low. Your GP should check these and whilst you have your begging bowl out, ask for B12, Folate and Vit D to be checked as well. All need to be high in range for you to feel well. Good luck - keep fighting!

  • There is an awful lot known about the thyroid but its mostly ignored.

  • Yes i agree ,there are all these research papers out there but nothing moves forward its like we are in limbo.And to me its a sheer waste of money if all the research is not acted on.

  • Thanks for the advice, but i am banging my head against a brick wall, my endo says all my results are within range and my other symptoms are not thyroid related, i really dont know why he is a qualified endo he is just not interested will not test t4 or t3 or anything else its TSH and TSH alone that is the deciding factor with my dose of levo .

  • Ask for a referral to a thyroid specialist not a diabetes as this endo seems to be. You can ask for a further referral, I did and luckily I found one who prescribed NDT, unfortunately he is not allowed to prescribe to new patients because of cost.

  • how do i find out who specialises in thyroid conditions

  • Try Dr Foster on the internet, there is a list of doctors at which hospital and their specialities.

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