Thyroid medications not working - a blog with an explanation of possible reasons

I've just read this interesting blog which explains the relationship between thyroid hormones and factors which may prevent our meds being effective. I've come across these explanations on ThyroidUK and apologise for any doubling up... just thought it was an interesting addition recoveringwitht3.com/blog/t...

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  • Well worth the read Liza, thank you. A very clear and concise account of this issue.

  • Sorry hooper! maybe I am thick! Maybe you have been having thyroid probs for a long time and understand what all these T's FTS mean! I am quite new to all this, and find all these extracts completely foreign, they might as well be written in Latin! (clear as mud)

  • Thankyou for this link, BUT some of us on here are novices in T whatever, T4 T3 T anything.

    Reading this link, as with most of them posted on here, they are mind boggling, totally do not make sense to the newly diagnosed. Is there not a Levothyroxine/T3/T4/ FSH whatever that means! for idiots? That makes it easy to understand?x

  • Sorry LizaSahara, Just want to ask you, do you understand completely, or even slightly, what this link is saying, or what it means, all this T3/4 FT3/ 4 whatever! Can you explain it to me in idiots for thyroid probs!x

  • Hi Dylansmum!

    I understand what you mean - you are not an idiot!!!

    All this info gets easier the more you read but I still get confused with some of it, and I don't fully understand all of the link, but enough of it for it to make sense!

    In short, re the bits you asked about;

    Levothyroxine is the tablet I take each day.

    It replaces the T4 which my body is no longer making.

    T4 is a hormone. T4 is changed into T3 by my body. T3 is another hormone which my body can use to make energy. Some people cannot convert T4 into T3 so they remain unwell even after taking levothyroxine.

    This is the basics... FT3 and FT4 is where I get a bit lost!

    Try looking on this website; thyroiduk.org.uk/tuk/about_...

    I hope this has helped ;)

    Liza x

  • FT4 and FT3 (F = Free) are the names of the blood tests that measure how much T4 and T3 (Thyroid hormones) you have in your blood available for your body to use.

    Hope that helps, Grey

  • Hi Liza,

    Thanks for your reply. I guess all, we all need, is reassurance that whatever we are taking or been prescribed, is the answer to our health, thyroid problem, and will, most importantly work and make us well again or at least back to our pre diagnosed selves! However it seems on viewing these sites, that our wellbeing is cast aside by our GP's, and we are just a nusiance a drain on their budget. Probably see us as boring patients that keep complaining and wanting blood tests and referals to endro's which cost them money. What is the answer? T3 whatever that does, is expensive so I am lead to believe. Just makes me wonder if there are anyone out there, that is happy and well again since being diagnosed and prescribed Levothyroxine. Or maybe these sites stir up feelings of disatisfaction! Maybe we should just accept our lot!x

  • No, dylansmum, we should NOT just accept our lot! How can you say that? You have as much right to be fit and well as a person with, say, diabetes, or any other health problem.

    The problem is that doctors are even worse at economics than they are at medecin! They cannot see that if they gave us the hormones we need, in sufficient quantities, then they would save money by not having us constantly sitting in their waiting rooms, taking up their time, and being prescribed any number of dangerous drugs to mask our symptoms : diet pills, statins, anti-depressants, et al. And, at the root of all this, as I've said so many times, is Big Pharma who are making a fortune out of us at the expense of the NHS, and nobody, apparently, can see it!

    T3 is the active thyroid hormone that does all the action in our bodies. The levo they want to give us is T4, an inactive storage hormone that our bodies have to convert into T3. Not all of us can do that, so we don't get well on T4, we need T3.

    The answer is to educate ourselves to the point where we know more than our doctors and then demand the treatment we deserve. Stand up on our back legs and bray! I want it and I want it now! That's how I've always got what I want in life. We should not allow ourselves to be bamboozled and blinded by science by ignorant doctors and fobbed off with second-rate treatment. But, if you don't want to do that, you can just accept your lot...

    Grey

  • Totally agree Grey. I'm not going to accept second-rate treatment, ignorant GPs or medical centres with alternative agendas.

  • Good for you!

  • Dylansmum - the NHS policy makers would love us to accept our lot, go away and put up with whatever they dish out. This isn't good enough for me. This site has helped me understand hypothyroidism and helped me understand how I can help manage it myself - up to a point, but I also need help from the GP - correct level of levo, or mixed therapy. I deserve better from my GP and if you're not at optimal, so do you! xxx

  • Absolutely! Grey goose, We do not accept our lot. We do deserve to be treated correctly and I say to anyone out there, Do not give up your right for better health. It takes time to find the appropriate doses and medication whether it be T4, T3 or a mixture of the both. I still on Levo T4. And even though I am not back to full health I am 10 fold better on 125mcg than I was before when My GP kept me on 25mcg!

    Never give up! NEVER

  • Totally agree - never accept less and never give up!

  • Hello I am new to this site , have been hypothroid now since 1997

    I have had periods where I cannot get out of bed or function. four months ago I lost the plot with my GP and told them I wanted to be referred to a specialist , under duress this was done. The specialist tried to fob me off but I said no I needed to T3.

    She didn't want to prescribe it but after me ranting at her she gave in.

    I have been taking T3 for a month now - due to see her again mid April at Tommys.

    But I have to report I feel some what human, have lost 10.5 lbs so far ! Energy levels are up - flagging around 3pm and I get really tired again then. Think my small dose is not enough I need to double it- will talk / scream at specialist in April .

    In order to get T3 you need to be firm, see a specialist. If your tooth needed pulling where do you go ? Dentist of course. You are entitled to see a specialist.

    As far as I'm concerned GP's have no expert knowledge in this field.

    Good luck

  • Thank you for posting your story. I had another blood test this morning - I'll see what direction this takes me in first but if not successful, will do what you have done... so ranting works - may need to try that too ;)

  • Hi Liza & greygoose, Thanks for your reply. I read on here a few days ago a blog from a lady who was prescribed T3 by her GP but then had to change GP's because the original left (think that what happened) anyway the new GP would not let her have T3, so she refused to leave the surgery, whereupon the GP called the police and had her removed, and then she was struck off from the practice. Maybe we think we have more rights than we have these days. I think with my practice, they wouldn't think twice about getting rid of a patient. I feel guilty making an appointment or asking for a blood test, that's the way it is, even though I have worked solidly full-time for 40+ years!x

  • Yeah, I read the same thing, but it doesn't mean that that's right....she had a prescription from her endo which showed she needed the meds.....if anything I think this story highlights how much power the GP's think they have rather than how little we have....if everyone started standing up for their rights to be better rather than rolling over and saying "fair enough, please feel free to kick me when I'm down some more" then who would they have left to kick out?....I think people sometimes forget that we pay the salaries of these people through the taxes that we pay....WE are THEIR employers....if they don't treat us right then WE should be walking away from THEM.....a surgery with no patients won't remain a surgery for very long....how could you even consider saying that "we should accept our lot"? you are a human being with rights!....a person who has the right to live, to breathe, to feel well....and you have to fight for it!.....HOW DARE your surgery make you feel like it's an inconvenience for you to get your blood tests....HOW DARE they make you feel guilty for wanting treatment....if you had cancer would you roll over and die because they told you to?......having problems with your thyroid is no laughing matter, it can and does kill in many different ways...the more you leave it untreated, the more illnesses you get from leaving it be....don't let them drag you down.....change GP's and fight with everything you have to get treated!!!!

    rant over (sorry) :)

  • I had less of a rant Hashoo ;) but I agree!

  • Hi Dylansmum. Thank you for writing again.

    Why do you feel gulity making an appointment or asking for a blood test? You've worked for 40+ years - haven't you paid into this service?

    Re-read your longer post to me - do you think being 'cast aside' and 'treated as a nuisance' is fair? I don't. If this is the way your practice is, it doesn't mean this is fair or right or the way it should be.

    I think you have more rights than you think - but I think it's about how we use those rights. I don't think having a rant is a good idea - even if I joke about it.

    You have a thyroid problem - like me. If this is left untreated, or managed badly, we would become VERY ill. People can suffer needlessly and die from the complications of this condition when it isn't managed correctly. If managed correctly you and I can have a good - even a great quality of life and many years left in us yet :)

    Hypothyroidism can be complex, challenging at times and frustrating. I need a GP who is understanding and willing to help me to manage my condition in the best way for the best outcome. I am not asking too much or being unreasonable and neither are you when you ask for an appointment or a blood test. That's what the service is there for!

    You and I deserve to be treated with respect and being treated as a nuisance is deeply offensive if all we are doing is wanting some answers to some pertinent questions about our health.

    Please don't let your practice behave badly towards you or manipulate you into not asking for help if you want it!

    Best wishes

    Liza

    x

  • Bravo!well said!

    And Dylansmum please don't misunderstand my rant...I'm just so appalled that you have treated so badly by your GP that you feel that that is all you deserve....I really hope you don't read my comment as an attack on you as that is the last thing I wanted to do...I just get a bit enthusiastic with my replies sometimes :)

  • And I'd like to add that I wasn't criticising you for having a rant... I'm learning more about the challenges the NHS present to us which can be so frustrating. As if thyroid issues weren't enough already!

    Where I'm at right now with my 'journey' I need to try all other ways of getting my GP on board first. Having said that, a full-on rant isn't beyond me if I'm ill, I've tried everything and the GP isn't listening or is agenda driven :)

    The great shame is that anyone should feel driven to this point over these issues, or to the point of avoiding asking a GP for help because they feel they don't deserve that help.

    The behaviour of the surgery Dylansmum was writing about was shocking. A decent surgery would have found more compassionate ways of managing that situation.

    Enthusiasm is good :D

  • Oh yeah, don't get me wrong, I know :) ...I've ended up changing GP's 3 times in the last 3 years through shear frustration...comments I've had include the following:

    "so you use 3 boxes of tissues a day and blow your nose constantly through the night and have done so for 4 years straight with no break.....well...everyone get's colds"

    "you want me to do something because you're suffering and have done with no answers...well...I did send you for a chest x-ray 5 months ago which came back clear....so I have done something..goodbye"....that one was with breathing difficulties

    etc. I suffered with symptoms getting worse and worse for 5 years before going to Poland and having a doctor touch my neck to say I have a goitre and testing me for antibodies showing I have hashimotos.....I refuse to let them fob me off any longer...and though I rant on here...when I go to the doctors I make sure I'm armed with evidence/printouts/reports from the internet (from specialists including thyroid.co.uk) to show that I need treatment....all I can say is the only person who can ultimately help is you unfortunately....anyhow, good luck :)

  • You are so right. It's shameful to cover up for doing very little. I totally understand anyone who needs to have a rant!

    You're also right that we must stick up for ourselves. I'm just so sick of the patronising comments - these GPs really need to 'grow up'! It's not a competition.

    Collecting evidence is a good idea - I'm building this up now I've realised how important this is.

    Things are better for me now - just knowing more has been a big step forward!

    Good luck to you too.

  • Knowledge is power as they say!...how long have you been diagnosed for?...I only got told last November so am fairly new but thanks to this site am picking up things to help as I go....I think sometimes we get treated in this way by GP's because they themselves know nothing about the condition and they prefer to treat what they know (hence why people get antidepressants, weight loss tablets etc. instead of what we actually need)....just depends on the person you get as to whether or not you can get somewhere with getting treated by presenting them with evidence to show that you need one tablet instead of 20 unfortunately. It can get incredibly frustrating though and some of the stories you read on here are aweful!....just reminds you you're not alone in this, which I find helps.

    Good luck to you too :)

  • Hi Hashoo.

    I was diagnosed in January 2012 and things were awful for about 8 months. Then settled and I was ok - in comparison to 2011 I was really good, but I think I could have been better. I also had some patronising things said to me by a GP, and was told I was depressed and given anti-depressants and propranolol... which I didn't take for longer than two weeks.

    I think some/most GPs simply do not know very much.

    Like you, I'm quite new to the site but in the past few months, I've learnt so much - knowledge is indeed power.

    I had a bad flare up of symptoms after flu several weeks ago and am on a new increased dose of levo. Just this week, at last, things seem to be settling down again.

    My treatment seems to be fairly simple especially in comparion to many here - its just about finding the right level of levo and being more aware of the flare-ups - I wasn't expecting that to happen!

    The support and help on here has been amazing :)

    What's your time since diagnosis been like?

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