Can your thyroid function get worse even though you take thyroxine?

Recently i have been feeling so drained and tired with no energy to get up and do stuff. After a day at work i just want to go home to bed. i take 150mg levo everyday but it feels like im not taking any.

i feel very emotional, angry one minute and crying the next and my patience level is zero. please, has anyone got any ideas how i can feel better

14 Replies

  • Have you had any bloods done recently - if so can you post on here (with ranges) for people to comment.

    Are your VitD, B12, Ferritin, Iron and folates all at optimum levels?

    Do you take your levo well away from food, drink (except water) and any supplements you are taking?

    When do you take your levo, if you take it first thing in the morning have you ever considered taking it last thing at night?

    Moggie x

    p.s. This might do better in the questions section.

  • Ive recently had a blood test at my well womans check and have been called in to see the Doctor. I know it sounds awful but im hoping there is something that explains this lack of energy and fuzzy head.

    Emma x

  • Have you had any vitamin tests done, like vitD, B12, iron, ferritin or folates? and at what time do you take your thyroid meds or any supplements you might be taking.

    Moggie x

  • Im asuming they did a full blood count for me, would that include those tests? i also take my thyroxine in the morning. would you recommend trying taking it at night then?

    Emma x

  • I think we need to start at the beginning.

    No a full blood count does not mean you have had your B12, vitD, Ferritin, Iron or folates tested, you will need to ask for these to be done separately. Being low in vitD, iron or B12 can cause extreme tiredness so all the above should be checked (a Ferritin tests shows how much iron is stored in your body so an iron and ferritin test should be done together).

    Do you leave, at least, two hours before and after eating and drinking (except water) before you take your thyroid meds. If you don't then the body will not be absorbing the medication to the best of its ability and you will not be getting the full benefit from your meds. You might want to swap to night time dosing, again leaving it two hours after eating before you take them. A change in med times can sometimes give you a headache for a few days but it can also have a huge benefit in how you feel.

    When you have ANY tests done at the doctors ALWAYS ask for copies (with ranges) so that you can post on here for people to advise and comment. It is your legal right to be able to obtain copies of your tests so don't let the receptionist or doctor tell you otherwise. If you do come across this problem then get back to me and I will help you sort it out.

    I have, and still am, low in iron and the tiredness I was feeling was dreadful, that dragging tiredness you get when you are having a period or just finished one (I don't have periods so knew it wasn't that) and the massive difference iron supplements have made to me is amazing so please make sure you get this tested. Also iron, vitD and B12 can make a huge difference in how your body uses (or more importantly cannot use) your thyroid meds. If any of the above are low then your body could be unable to covert your T4 (levo) into the T3 it desperately needs.

    If you need to ask anything else just shout.

    Moggie x

  • Thanks, im really grateful for the advice you are giving, its fantastic. When i return to the Doctors i will request a blood test for the ones you suggested.

    Regards to taking my medication i take it then have a cup of tea. But from tomorrow i will take it just before bed to see if that makes a difference.

    When i get my results on Monday i will post them for you to have a look if thats ok.

    emma xx

  • Milk is a big no no when taking thyroid meds - even in tea and coffee - as it contains calcium and calcium should be keep, at least, four hours away from meds.

    Will look out for your results post.

    Moggie x

  • These symptons can be a sure sign of adrenal dysfunction please insist on referal to endo and ask for synthacen testing for cortisol levels. Doctors know virtually nothing on this and will mis diagnose also tsh tests would be in normal range with adrenal or pituitary issues.

  • Thank you for your advice, ive had underactive thyroid for 16 years and not once seen a endo. I think i need to now. I hope the Doctor is understanding because sometimes that is half the battle.

  • There's (as i found from experience) potentially quite a few reasons why we can still be very hypo when taking T4 on it's own EJ.

    At the most basic level the theory suggests that we need to be able to convert it to the active T3 form for it to be usable, and then various cellular/enzyme based processes throughout the body and in e.g. the gut and other major organs need to be working properly too.

    The above deficiences have become recognised as common causes of these issues, but there are others too such as e.g. toxicity, hereditary factors etc. They may in turn be also related to and worsened by associated gut and immune problems etc.

    The stock T4/TSH blood test pretty much by definition doesn't seem to detect much beyond simple unavailability of T4 - it doesn't (based on frequent patient reports - being told all is 'normal' but still feeling very unwell is a common scenario) for example do a very good job of detecting conversion and use issues.

    Getting better tends to be mostly about trying to figure out from tests and from symptoms what may be going on, and seeking to in a pretty holistic manner find fixes.

    There's a broader medical picture that needs consideration, so most of us try to find ways to apply our own insight with a doctor or endo.

    It's hard to comment at this range on what might be needed, but some have found that cleaning up the diet, supplementation (4Rs therapy - lots of references on the web but this paints the sort of holistic picture described: )and if it proves necessary starting some T3 hormone can help.

    The latter while helping quite a few is not a magic bullet - it can turn out that the break in the chain lies elsewhere. e.g. restoring gut health can resolve hypothyroid symptoms at times.

    Which is why the various questions as asked by the guys quickly follow.

    It's well worth starting to read here and across the many thyroid support sites on the web - there's some excellent sources of information that compared to years ago can fairly quickly paint a picture of the scenarios that can arise, and how they may be treated.

    It's important of course to apply judgement and discretion at all times...


  • Thank you ian, i signed up to this site yesterday and am finding a lot of advice really helpful and wish i had joined a long time ago.

    I have been to the Doctors a few times about bowel problems and he said i could have ibs, i seem to not be able to eat many foods at all without a reaction. this has been going on about 6 years. Maybe if that is sorted out then i might feel better.


  • I didn't know you had some gut issues EJ. Lots of thyroid trouble starts with gut issues, or so the story goes.

    As in when the gut is disturbed our ability to take up key vitamins, minerals and other nutrients essential to thyroid function becomes compromised - which can quickly lead to primary hypothyroidism. (the gland not producing very well)

    This further worsens gut function.

    The gut is also heavily involved in conversion of T4 to the active T3 form, so this also can contribute to hypothyroidism.

    Eventually if badly enough disturbed inflammatory processes lead to gut problems and leakage - and all may set off auto immune disturbances, disease (Hashimotos seems to be a common result) and multiple food sensitivities.

    Modern lifestyles and diets what with their stressful habits and processed, additive containing and nutritionally deficient foods exacerbate the situation in many ways.

    Lots in this condition having been tested using the stock T4/TSH tests and told they are thyroid 'normal' (they won't necessarily have low enough blood levels to fall outside of the very wide stock ranges, or may be producing the hormone but not be able to properly use it due to downstream problems) are left to slide into a steadily worsening scenario where not only do these disease processes get established, but other bodily processes also run down.

    It eventually ends up so that there's multiple factors out of balance, meaning that it can a be a difficult and long road to recovery involving many twists and turns and cul de sacs.

    I'm starting to sound like a stuck record, but my own experience and that of many others tends to suggest that it's important to catch this stuff early - before the imbalances becomes too severe, and before disease processes become established.

    The other dimension that matters very much is that most of us find we only start to progress when we take responsibility for ourselves - we of course work with thyroid friendly doctors and the like (the practicalities of access to medication and the like if nothing else dictate this), but in the context of doing everything we can to become knowledgeable on the topic.

    Experience suggests it's often wiser to walk away from doctors not inclined to work co-operatively, or that are not open to more progressive views on metabolic medicine - to seek out individuals we can work with ....


  • I agree. We have enough hassles dealing with the condition without enduring extra issues from GP's.

    What is the most common saying heard. No stress! So why do the GP's do jsut that stress us out.

    The main problem I see is Drs try to put thyroid in one box and treat as such one problem. Thyroid isnt one solitary item and forms part of a highly complex body function that varies constantly as per out bodies need or not need.

    Its like saying you need glasses to see then sticking them on the back of your head. Not helping at all.

    Sometimes we are not always on our own side, by not standing our ground and saying no or I need this not that.

  • Hello .... just found this site and am absolutely blown away by what i did not know and how i have been feeling ,,, After Thyroid cancer 4 years ago i have been up and down but recently had a change from 150mg to 125mg and this week to 100mg of Lyvothyroxine ,,, I have felt absolutely wretched with fatigue ,,,, cant get it together and really struggling the tiredness is dibilitating ,,,, i wonder do i need to wait and see if this passes whilst my new dosage kicks in ,,, ????? what is the take on taking meds at night time ???

    Many thanks for any thoughts !!! Linda from Leamington Spa

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