Why is Thyroxine the only answer?

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All we are offered is Thyroxine which can only address low T4. But it is low T3 that usually makes you feel unwell. Your body should change T4 to T3 but not everyones body does...hence you still feel unwell. There are alternatives to T4 but Dr's aren't allowed (as a general rule) to prescribe them. They don't even test your blood for low T3. Just not good enough really.

 

4 likes, 15 replies

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15 Replies

  • Posted

    I quite agree.I can't get my T3 tested in my area.Have you looked at 'the unacceptable side effects of levothyroxine' discussion on this site? Also the 'thyroid problems ' group on facebook?.They're very informative and supportive.Gill
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    • Posted

      That doesn't sound good. Ever since I started with thyroid issues they test TSH T3 T4. Sorry your on the journey with thyroid issues too. I feel like I need spare body parts. ūüė®
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  • Posted

    I saw an endocrinologist who flatly refused to accept that there are any side effects whatsoever to Levothyroxine; he also decried fora like this as causing unnecessary distress and worry to people - he even apologised to me on behalf of the internet for all the distress and worry I had apparently been caused, even though I made it quite clear to him that I simply wanted to be more informed. 

    There are a few crackpots and people who talk of self-medicating, but what they cannot seem to accept in the NHS is the side effects of Levothyroxine.  So why do they make all our other medication free of charge? - Is it because they do recognise the side effects and the fact that many of us end up taking other medications as a direct result of those side effects?

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    • Posted

      Oh dear..so not only did I have to have radioactive iodine treatment..now I might have to take medication that people, "professionals", suggest is just a pill once a day and you can carry on with your life as before. It seems though that actually it could be a long road for me to finally feel better.
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  • Posted

    good advice on facebook thyroid group,I wasted years of my life not being diagnosed with screaming thyroid problems,I now self medicate & although my GP keeps an eye on my bloods he refuses to prescribe a medication that has allowed me to come off antidepressants,stomach tablets,BP tablets,Statins & morphine patches for excruciating knee pain that kept me ill for years,Now I can walk up stairs normally with no pain,I can turn my neck which has been agony for years & prevented me from driving & many more things so why do thousands of us have to suffer so much when an alternative is available,It all comes down to lack of funds & pressure from drug companies,The WWW has allowed thousands of us to dicover other alternatives & if we all make demands for better treatment eventually the medical proffession will have to listen,its disgraceful that GP's are not allowed to prescribe what we need.
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    • Posted

      Hi,have you seen the e-petition on thyroid problems on facebook? We need so many more signatures to get the government to consider looking at research on T3 and NDT.

      I would love to be able to self-medicate,but have hypopituitarism,history of thrombosis,and hypothyroidism,and all the medications that go with them.

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    • Posted

      Hi Gill,yes I have seen & signed the petition,also been in touch with local MP as I thought he might be of help as he will be looking for votes,ha ha.I keep on at my GP every visit and though he can see I am much improved I do not expect him to risk his job,Wrote a letter to him the other week & stated that I wanted it put in my records,saying I was very unhappy with the way I was being denied what both he & myself knew was making me better.I think we just have to keep complaining until the penny drops.At the moment I am having problems getting NDT from the USA because the card companies will not let you use a card to buy medication,they annoy me now as well because its me who pays the bill so why can I not choose what I want to buy.
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    • Posted

      That's awful.

      Great about contacting MP,though.

      Out of interest,when you said your GP keeps an eye on your bloods,are you able to get T3 tested? Gill

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    • Posted

      Yes Gill I get t3 & ft3 tested now.I saw every GP in the practice & was ill for years being treated for lots of things seperately which had I known all the time were all classic Thyroid symptoms,having sorted that out I asked for NDT because Thyroxine was not helping,in fact I was getting worse,He refused but sent me to an ENdo who again would not prescribe but was happy with me taking it.Saw her 4 times but eventually we disagreed about the dose which she insisted that I drop,I did drop it but felt ill again so went back to the dose I feel well on.Saw another GP in the practice who looked at the blood results & agreed I should stay on the dose where I feel well.The problem is the general medical council will not allow it to be prescribed on the NHS & GP's can lose their jobs if they defy this ruling.Some but very few will prescribe.I learned all I could from self help groups & books & then took matters into my own hands & have not looked back.NDT was used very succesfully for over 100 years.It is your personal choice,your life ,Please apply to join Thyroid Problems Uk-Patient to Patient Advice & Support ,it may take a while as lots are waiting but well worth the wait & you will be able to interact with other people with the same problems,very supportive when GP's do not take you seriously
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    • Posted

      Hi brewster121044,Do you mean join the facebook page of that name?

      Unfortunately I can't get my T3 tested here,I've asked for it to be done.Gill

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    • Posted

      Yes gill,look for the group on Facebook or if you PM me I can recommend you but will need your e mail address,Hope this helps but even if I apply for you to join it may take some time as the administators of the group are all vollenteers & thyroid sufferers & only add people as they have time .
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    • Posted

      Hi,it's ok,I was just checking which group you meant,in case I'd misunderstood.Not difficult with me nowadays,it seems!

      Anyway,I became a member about a month or so ago,when my problems really started becoming worse.

      Assume you're a member,but guess you're not Brewster on there?

      Gill

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    • Posted

      No your right,I am not Brewster on there I use my correct name as its a helpful place & we all help each other,We are all in the same boat & it's a closed group.My initials are MA, that may help you see my posts & my profile is not me but a pet.
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  • Posted

    All doctors have to take the Hippocratic Oath which I believe says that they will do everything they can to make you well. How come then that were thyroid illness is concerned they chose to ignore what their patients tell them their sympoms are?The real reason we can only get T4 is it's all about keeping the pharmaceutical company that makes Levothyroxine sweet.They are making billions from Levothyroxine.We are merely collaterole damage . Perhaps hipocites would be more appropriate! 
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