levothyroxine is not working for me...

hi, i am currently on 175mcg of levo, and my doc and specialist both say i should be ok now , as my bloods are all in the 'normal' range... i have never felt worse, the mornings are a nightmare, swollen hot hands and feet, puffy face, then there's the exhaustion. Overwhelming to the point where i just sit and cry. my workmates think i am mad. i have gone from being bubbly and happy, to miserable, snappy, and withdrawn. i can hardly climb the stairs never mind jog and do cardio in the gym. i feel i am fading away, and no one will listen! my hair is falling out rapid now, bald patches, my beautiful hair going going ....i have become so self centred, because only I will listen to me now!

Is anyone else going through this? anyone read stop the thyroid madness? and how can i get an endocrine doctor that will listen to me? i asked mine to test my T3 and he hasnt!! i really would like to try the dessicated thyroid, but am guessing its hard to get prescribed?

am sure many more people are the same as me, its hard to explain to someone that doesnt suffer with their thyroid, so i would be glad of feedback, thanks

23 Replies

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  • Why not contact Louise Warvill for a list of Thyroid friendly Private Docs :-)

  • hi marz... how do i contact louise warvill? i am new to this and not very clued in yet lol... thankyou x

  • louise.warvill@thyroiduk.org - her e-mail address. She is one of the Administrators of the this Forum.

  • Martine1234,

    How long have you been taking Levothyroxine?

    Normal is a very broad range. It is important to know what your results are and where in range your results are. Ask your GP receptionist for a copy of your recent thyroid results and ranges (figures in brackets after results) and post them in a new question and members will advise whether you are optimally medicated. If you have had any of ferritin, vitamin D, B12 or folate tested include those results and ranges too.

    If your TSH is >1.0 the NHS lab probably won't analyse FT3 as they are looking for signs of hyperthyroidism not low FT3 in hypothyroid patients. If you want to see how well you are converting T4 to T3 so you can order private thyroid tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    Email louise.warvill@thyroiduk.org.uk for a list of member recommended endocrinologists and private GPs. You should check with their offices whether they prescribe NDT before booking a consultation.

  • thankyou for reply. i have been on levothyroxine for 10 mnths, i was a severe case as i was ill for a long time before goin doc..my figures were extreme, and my anti bodies are through the roof.. i shall get my figures to put on here. i have been steadily upping my dose, and now doc says i am upper limit, slightly over t4 limit, i think he said21, the other is 0.03, not sure which is which? i do know as we replace, then the figure of tsh goes down ? and thet4 goes up?

    He is now testing me for alsorts, bowels etc.. grrrr its so frustrating. all my other levels, vit d, iron, zinc etc normal.. i even asked to check me for menopause and lymes disease... but no t3 test was done!! am i going insane? i cant up my meds but feel worse than ever!! not one sign of hyper like he insinuates...i am so cold my body temp fluctuates between 35 and 36.8c ... i even get my son to check the thermometer is working i go so cold... ..thanks again, i shall get my figures and get back on ssoon x

  • Martine1234,

    I'm surprised the lab didn't automatically test FT3 with TSH 0.03 high in range FT4 21.0. You appear to be optimally medicated with suppressed TSH and high FT4. Increasing Levothyroxine dose is likely to over medicate you and that can be as unpleasant as being under medicated. Without the FT3 it isn't possible to say whether you are converting well and it is possible that low FT3 may be contributing to your unwellness. You can order a private thyroid test to check FT3 level from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    "Antibodies through the roof" means you are positive for autoimmune thyroid disease (Hashimoto's) which causes 90% of hypothyroidism. 100% gluten-free diet may improve symptoms and reduce antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    What were the results of the other tests? Normal simply means results are within range but hypothyroid patients really need optimal levels and supplementing to get them optimal can really improve wellbeing.

    ______________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • thankyou for reply.. yes believe this is what is happening... i am to the max on t4, i cant go higher, and tsh gone right down... i have done alot of reading and i suspect , though i am no doctor, that maybe i have a conversion issue? i mentioned this to my doc, AND my endocrine doc, and both ignored me and didnt do the test i asked for, ... my T3 ...grrr i am so frustrated, i feel it is a start by doing all these tests..my wellbeing is zero...and i feel so selfish and self obsessed atm... my personality has gone... is this normal? i shall get my results frm my doc and also try and get private testing.. its sooo expensive, as i am a single mum ... just took on new job n dont think i have the energy to work nights... thanks again xx

  • Martine1234,

    It's pretty usual to feel you're obsessed and going mad especially when doctors tell you "bloods are fine so it's not your thyroid" as if telling you what's not wrong makes you feel better :x

    I'm afraid the only way to tell whether or not you are converting well or poorly is to have a FT3 test. If you are a poor converter your endo might agree to prescribe some Liothyronine (T3).

  • i agree... though i asked my dr to test my T3 and he said it was the endo that does that, so when i did see him, i requested it, he said ok but hasnt flippin tested me .. i feel he deliberately made a point of not doing what i asked, .... he blocked every suggestion i made, i wont give up now, that is for sure... thankyou x

  • For thyroid hormones to be able to work, we need very good levels (not just average) of B12, vitamin D, folate and ferritin. Has your GP checked these?

    If so, do you have actual results with ranges (the figures in brackets)

    Also do you know if you have high antibodies. There are two types, (TPO and TG) they both need testing. If either or both are high then this means you have autoimmune thyroid disease - called Hashimoto's. Most common reason for being hypo. Medics don't seem to consider this aspect of thyroid issues.

    Very common for Hashimoto's patients to be low in some or all these vitamins/minerals. Again medics don't seem to understand this

    Many with Hashimoto's and ongoing unresolved issues, seem to have leaky gut and/or gluten issues. Adopting 100% gluten free diet can help reduce symptoms and lower antibodies. Supplementing selenium can also help reduce antibodies.

    If you can not get blood tests via GP then, like many of us, you can get private testing - Blue Horizon - thyroid plus eleven is good option.

    thyroiduk.org.uk/tuk/testin...

    (I am not a medic, just fellow thyroid sufferer.)

    Lots more about underlying issues of Hashimoto's on thyroidpharmacist.com

    Or ChrisKresser.com

    Etc etc

  • Ahh thankyou, yes i suffer bloating ... tried going gluten free, i didnt stick at it as i was so stressed and it was too much like hard work at the time to continue, but my stomach bloating went away. i only tried it for a couple of weeks, and i know it can take months to start helping. i have to have the camera up the bum lol... dreading that but i know it has to be done... thankyou for reply x

  • Hi Martine1234

    Sorry you are feeling so poorly. Most of us on here can identify with your frustration. Definately get your results with the reference ranges and the vitamins etc, it could be a conversion issue for you but without the precious FT3 result we wont know sadly so as others have said you could get this done privately and re-post on here. It has been said/written that thyroid problems can or do start in the gut, and i am experiencing gut related problems right now but i was diagnosed with underactive thyroid 6 years ago and i have trouble getting or staying regulated on thyroid meds so i want to get my bowels checked out if anyone could wish for such a thing! lol! It may be that they find the answers when you have this done, e.g. absorption issue or coeliacs for example. Dont give up hope, i have good and bad days and am still trying to figure it all out too.

  • thankyou for your reply. i know this sounds selfish but i am glad i joined here to share experiences.. i have been going mad on my own with this. i am sick of doc trying to push anti depressants on me... no thankyou!

    do i just ask my doc for my results? he is a great man, just lost as to what next! ... and do you suffer hair loss?? i have hair nearly to my waist, and its going so thin.. have lost 50% and its getting harder to hide... so you are still not well after 6 years? am so sorry to hear that , truly i am xx

  • Ask the receptionist at the practice to print your results off for you, my practice dont mind doing this infact they prefer to print it off rather than someone who doesnt know what they are talking about reading them off for you! i have over time been offered antdtidepressants which i didnt want or need too! its quite a common story on here, at one point i was told i must have M.E as it was felt every other avenue had been explored. I dont have M.E.

    My hair is thinning and breaking and my hair is long like yours, but mine is mostly noticeable where it frames my face, and i dread washing it because that means brushing it! (mine tangles terribly too) my hair used to be one of my better features but im almost embarrassed by it now, might even get it cut! I have in the past had low ferritin issues, that coupled with low thyroid has taken its toll in my opinion.

    I am taking some T3 with the levothyroxine to try and improve conversion as at one point i had a relatively high FT4 like yours and low TSH (low meaning high if you get what i mean as in 0.03), but it all takes time and blood tests to try and get to an optimal level. im still functioning but i cant run or do anything particularly energetic which i used to be able to do as i just dont have any ummff but everyone is different..i dont want to try and paint a gloomy picture!

  • i am so sorry that you feel bad too.... truly i am. i shall go to my docs monday and request my results printed. They are very good so shouldnt be a problem.

    As for your hair, yes i understand totally, and the exact same is happening to me..all round the hair line, and at the back, so that when i wear a platt it looks ridiculous. i use nanogen thickening treatment shampoo and cond from boots. it doesnt stop the hair falling out, but straight away your hair feels thicker... its a proper treatment, not like tresemme or loreal... try it, its 9 quid but you wont need to wash your hair as often, and softens the blow when you look in the mirror... i have hair envy and look at everyones hair wishing it was mine lol

    one day we may get our umfff back eh? or die trying lol... i shall post my results on here as soon as i get them... take care x

  • Yes, i definately want some ummff for sure! Good luck with everything and post your results in a new post when you get them.

    Have a lovely weekend.

  • thankyou, and you too x

  • Martine, you didn't answer about the nutrients. Vit D, B12, folate and ferritin etc. are so important, and need to be optimal, not just in range, or you body will not be able to use the hormone you are giving it. And 'normal' is meaningless. You don't want 'normal', you want 'optimal'. So, if you can get the results and post them here - with the ranges - members will be able to advise you. :)

  • thankyou, will do for sure.. my doc said 'ok' for my vit D, zinc iron oestrogen , i agree normal is not a good enough answer... i shall be straight down my docs mon for a print out... thanx again x

  • You're welcome. :) Doctors just don't know enough about it.

  • well, to be fair, he admitted he was stumped lol.. not good for morale ....he is scanning my spleen as i get slight pain under left rib, and he is sending me for camera up bum lol... so he is trying... but i dont want to go down that road where they run out of ideas n start testing for any old thing, just to fob me off.... i trust my instincts. i was going to ggive up til i saw this site... now i have got confidence to make sure i get proper testing.... thankyou x

  • I do not understand it. They go to all the expensive of tests like that, when a simple FT3 would tell them what they're looking for. That's what I mean when I say they don't know enough about it. If they understood thyroid and nutrient tests, they could probably reduce their work-load by half!

  • hi greygoose, yes i agree... if us mere mortals can gain such knowledge just from reading up on things, then why oh why do the experts not do more and know more? i think the main problem of thyroid problems being hard to treat, is because some doctors and specialists make it hard for us by going all round the houses and making us beg for it.... meanwhile, our symptoms get worse...it seems they are obsessed with T4 and not much else? i think mine is defo a conversion problem...

    take care

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