Stopped meds they don't work

There's no rhyme or reason to this so called thyroid issue. I have no real idea what's normal or what isn't. My bloods are all over the place the docs are clueless and I've spent a year of my life suffering at their clueless hands...... I'm clueless, in fact I'm more confused now than I've ever been....t3 t4 reverse this and that, don't eat this eat that.....and I'm still no further down he line....I'm waiting to see an endocrinologist at end of May. I've been off armour now for 3 weeks, I'm seeing a nutritionist and have to say things have improved more in the last 3 weeks than the last year! She's managed to get both iron and vit D up! That's a start.....I so feel better now that my iron levels are up and I'm still battling to keep that up!! It's a constant struggle and I, taking a multitude of food supplements and enzymes etc to help.

I have tried levothyroxine but felt dire on it...I spent 6 months on armour and all that did was make my hair fall out and I felt dire.....so all I can do is plod on with diet.....I've not told the doctor he's simply not interested and said I need to see endo and see what they say

To be perfectly honest I do not trust doctors full stop....none of them seem to have any Idea...go away for 3 months and suffer then try this for 3 months and suffer then try sis for 3 months and suffer....

People are great they all have a story to tell but all are so different and I've not managed to feel better following their advice....

I simply give up now 

27 Replies

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  • I can totally relate to all you've said with regard to doctors I don't think they have a clue at times. I am feeling like you and at my wits end with it all. I feel like I'm going mad some days as there seems more questions than answers. I have posted questions on here but not getting any replies so don't know where to go or what to do at the moment.

    I hope you can find answers and if you do pass them on to me! Please X

  • I've had conflicting advice since i started to research this whole thyroid thing. I don't think perimenopause helps and i don't think chronic vitamin deficiency helps! I have had more help from seeing a nutritionist just once! can't wait to get back to see her again next week to find out what her advice will be....obviously she won't be able to advise on medical stuff, but she will be able to help me to make the right food choices because i know that my gut has been suffering for a long long time....ive made a LOT of lifestyle changes, diet and exercise and lowering stress levels, I'm 51 and I'm not in tip top condition despite my sterling efforts! i haven't had a drink for 16 years or smoked for 7 i do yoga 3X week and gym 2X week, i am now totally gluten free (started to leave out most glutinous foods last year but now I'm completely gluten free) and I've gone dairy free this last month and already i feel the benefits...i believe that i am healing my gut and that is where i need to start really.....i don't know what else to suggest really as I'm no further down the line than i was this time last year.....im getting loads of palpitations and i feel ropey....but ill have to wait now and see what happens......ill keep you posted xx

  • Is your free T3 in the (here in Finland) recommended range 5 to 6?

  • Low thyroid is the most usual cause of symptoms, but there are others too:  bit.ly/1QdB0i9

  • What did she do to raise your iron levels in just 3 weeks! It surely takes around 3 months to increase blood level and renew?

  • i have been taking iron supplements for a year! but everytime i went for bloods it was going down and down....it wasn't just 3 weeks, sorry dint mean to give the wrong impression! she suggested using  a different supplelment and I've done that....as well as change diet....so maybe over the last few weeks the gut is finally healing and more iron is simply getting absorbed? i don't know

  • ps its still very low but at least its going in the right direction which is more than act happened taking vile ferritin tablets for a year

  • It is such a complexed thing and everyone is different with it. You try and take control of it but you are not medically trained to know what's what properly but then even the doctors don't seem to be either. I totally understand where you are coming from. 

  • yeah i know, I've had some great support form a couple of really nice well informed people who are battling with their own health issues but i am more confused than ever...my bloods are not right, they haven't been right for months! I've been off the meds for nearly 6 weeks now and the results show this...it makes no sense to me at all

    Pathology Investigations

    Serum free triiodothyronine level 8.4 pmol/L [3.5 - 6.2]

    Above high reference limit

    Serum free T4 level 10.0 pmol/L [8.0 - 16.0]

    Updated thyroid hormone reference intervals based on local

    population data (1st September 2015)

    Serum TSH level 7.10 mU/L [0.54 - 4.25]

    Above high reference limit

  • i sid i was off meds for 3 weeks but i was on 1/4 grain of armour for 3 weeks too! so pretty much off armour...it was making my hair fall out...

  • I am sorry but I am useless at interpreting results as I am really new to all this.There are a lot of other helpful people on here who may be able to make sense of these results. It doesn't make sense to me either. My last results didn't make sense to me as my T4 was super low but my T3 was a lot higher but still in the low range. It's all so confusing! 

  • I read your recent post but find it easier to reply to this post.

    T3 (triiodothyronine)) is the active hormone which controls the metabolism (and symptoms) so the Free T3 result is the more important and your's is above the normal range. T4 is a storage hormone and needs to be converted to T3 to become active.

    You also have a TSH level above the normal range.  This is very unusual.  If hyperthyroid the free T3 would be high but the TSH would be low.  With hypothyroid the free T3 would be low and the TSH could be highish.

    Your hypothyroid symptoms with the high free T3 and high TSH levels could be caused by thyroid hormone resistance (impaired sensitivity to thyroid hormone). This is a genetic condition which means that the body needs high levels of T3 to function normally. If there are other close family members with hypothyroid/fibromyalgia/chronic fatigue/depression this would support the possibility of thyroid hormone resistance.     

    I will send you a personal message about a book on thyroid resistance. 

  • Hi i tried to reply in private message but couldn't for some reason....

    are you a doctor?

    is it realistic to ask for cortisol tests (this affects the bodys use of t3 conversion doesn't it?) 

    how does reverse t3 work what does that mean?

    i don't want to go to this appointment and feel totally overwhelmed and bamboozled!!

    i had so many other issues with absorption vitamins...is this the same?

    what tests do i need in order to find out if my body is resistant 

    god I've read stuff and i feel more and more confused and i must sound really really stupid

    I'm going to buy your book xx

  • your book is great, I've skim read a lot of it and a lot of it makes total sense to me...however as usual my heart sunk when i read about doctors not prescribing t3 only medications....

    i have all of the symptoms you describe and I've been taking my temperature every morning before i get out of bed it has been as low as 35.7, I'm constantly cold and have had hideous perimenopausal symptoms and periods are horrendous! I've felt better on meds than off but the hair continues to fall out...i though it was the armour that was making come out in handfuls but I've been off meds now for 6 weeks and its not slowed down...im so gutted i don't know what to do..what is the point in learning about all this stuff if doctors won't listen :-( xxx

  • One of the reasons for learning about your condition is so that you can avoid wasting time and money on doctors and treatments that will not work.  Many people on this forum have spent years going round different doctors and alternative therapists, trying various supplements etc.

    If you know what is wrong and your doctor won't help your choice is to look for another doctor who may help or else self-medicate.

    Self-medication is a last resort for many on this forum, but when you have chronic bad health and no help from doctors it becomes the only option. 

  • would you send me your email so you can look at my test results? I've been reading STTM today and I'm desperately trying I'm TRYING to understand my condition....all i can think is that i have adrenal fatigue, low cortisol? how do i go about talking to this endocrinologist on Friday or should i cancel?

    I honestly do not know what to do i feel so utterly helpless!..i still have access to armour thyroid i still have medications here...but with that high T3 i don't know what i need to do????

    I'm frightened, I'm feeling overwhelmed and i don't know what to do...

    I am trying absolutely EVERYTHING to feel better....i honestly think that my gut was a major issue and that i HAD to start to heal that first so that i could start to at the very least absorb some iron....my iron is still chronically low at 11! i understand it needs to be at least 70 to keep hair growing and in!!!

    its my hair that is breaking my heart its getting thinner and thinner....im feeling worse and worse i was suicidal before christmas and i honestly feel like I'm slipping towards that again....how can i find a sympathetic doctor?

    so may people say they self medicate..how on earth do i even start? where do i begin? I'm overwhelmed I'm frightened and I'm at the end of my tether if only i actually KNEW WHAT THE HELL is going on and what i could do???

    should i test or am i wasting my money should i see an endocrinologist or am i wasting my time and money? what should i do to get my chronic iron levels up when they tell me they are in range???

    if only i knew what to do.....

  • I've looked at the doctors list on here, i already have a doctor who will prescribe armour the trouble is they don't know how to interpret the test results!

    which is why they referred me to the endo in the first place...they didn't know how much levothyroxine was in the formula and over calculated....hell they can't even get blood recall dates right! what aim i going to do? i don't know what to do next...im trying I'm really trying...

  • Don't panic - the worst thing to do is to rush into something which you are not sure about.  You may be best to delay your endo appointment until you are properly prepared.

    I am not a doctor any my expertise is purely in relation to thyroid hormone resistance.  If you have this condition it needs to be treated first - trying to fix the secondary issues without fixing the main cause will not work.  Dr John Lowe felt that if the thyroid issues are fixed the adrenals will fix themselves (others may not agree with this).

    I don't think that STTM book covers thyroid hormone resistance.

    If you can trial the T3 treatment for thyroid hormone resistance it will soon be obvious if it works.   

    Draw up a list of your symptoms and a history of close family members with thyroid/fibromyalgis/cronic fatigue/depression etc to show the genetic factor.  Take this with you to your endo appointment and see if he is open to this idea. 

  • To be honest my mother and grandmother are dead, there's no family on my mothers side and my father side scattered I have no history. I have to start somewhere so I'm keeping the appointment. There's so many conflicting ideas and advice I don't know where to start...so I have to start with what I have which is blind...lot tally blind.

    How on earth am I supposed to consider a thyroid resistance thing? How can I tested for it is it going to be another dead end or three months of my life waged trying to fix something I know nothing about....

    The onlynpersonwho has given me any iota of hope is the nutritionist. I am trying to heal my gut right now I believe this is where it all started

    I believe that high stress over the years has caused my body to go awry....add into the mix the age and perimenopausal stuff and hey how you have a mosh mosh of dead ends to walk up..could be this could be that

    All I know is that my guts have not been right for literally years, I went grain free last summer and this year totally gluten and dairy free there Is improvement

    I believe a lot of my symptoms are down to ongoing chronic vitamin and iron deficiency..despite stupid lab ranges I am simply deficient and have been for years!!

    When the body is under that kind of stress it's hardly any wonder it overcompensates and struggles

    I HAVE to start somewhere I have to keep my appointment . You are probably right it will probably be a total waste of time but I I can get some basic tests done and use this private healthcare fund I will I simply need a platform from which to start.

    How on earth am I going to even convince an endocrinologist to consider hormone resistance? When they can hardly get to grips with the t this and the t that?

    How on earth am I supposed to make an informed choice when looking for an endo or doctor when there is little evidence or patient reviews?

    I'm simply wandering around blind and I have to start somewhere.

    I'm having a chroniclly bad day today and I feel like I'm slipping into the abyss again

    I have to get on and see what happens ..if it's a waste of time the. At least I've tried...at least I know that's one road I needn't go down again.

    Feeling gutted, literally hollow and to be honest? Pretty hopeless

    For something that is so common and with the hundreds of thousands of people suffering with it I'm astounded that there aren't more solutions....seems to me we keep clutching at straws unto

     There is only one straw left....

  • I understand how you feel. My father went off levo because his bp was terrible. His doc is working with him to get the blood pressure under control and said stay off levo for now and maybe for good. I'm thinking about stopping mine too because I'm starting to feel worse again. I have other things going on so I'm not sure if it's anything to do with that or not but my bg has been a lot worse. 

  • I see what you mean about your blood test results. Your FT3 is well over range, but so is your TSH. No wonder Levothyroxine made you feel worse. Seeing an endocrinologist is a very good idea. I only hope you see a really good one who knows about thyroid issues - many of them are experts in diabetes not thyroid.

    The trouble is that GPs are trained to only check the TSH (many won't even test the FT3) and give Levothyroxine if the TSH is too high (usually high TSH means hypothyroidism). However it will be the high FT3 that is giving you symptoms (high FT3 usually means hyperthyroidism), and taking Levothyroxine will probably only make that worse. Have you got any results for antibodies? There are two or three different sorts - TPO, TGAb and Graves (something like that anyway). 

  • if you can message me your email i can send you the whole lot of results from the last year, I've prepared them for this endocrinologist so could ping them over to you...any help would be AMAZING!!!

  • For what it's worth, an awful lot of what you've written could have been written by me! I was on a get fit campaign and doing really well for the first 18 months and then everything ground to a halt. All the research and reading into thyroid and vitamin deficiencies started back in July/August last year for me. I had to do it myself as my GP didn't see any problems and I've made steady but slow progress since then. I'm currently on 3 grains of Thiroyd and have got my B12 and Vit D levels up to where they should be.

    I went to see a private doctor in January who put me onto a course of probiotics and gave me a couple of vitamin and mineral infusions and I'm now starting to feel like my old self again.I'm more cautiously optimistic than I was a few months ago and I've finally got enough mental and physical energy back to start exercising again although I'm still a little disheartened at the amount of supplements I'm still taking every day.

    My take on it that it's probably taken a lot of years to get as run down as I was so it's not going to be any sort of quick fix. On a bad day I still just want to punch the c**p out of something though ;)

  • you have really given me some hope! yes I'm on heaps of supplements but I'm religious about taking them....some of my levels are improving!! its so slow...and I'm still feeling so run down...totally hollow!

  • I so know how you feel!  I felt like an empty shell for months and frustrated because nothing seemed to be working as quickly as I'd liked.  It's only now that I look back I realise how much has changed over the last 9 months.  Feel free to PM me if you need a rant ;)

  • can you give me your email or is that not allowed, I've not activated my email on here yet but can do so. Ive had a bad night and can't stop crying it seems this is my daily routine! ill look into activating my email x thank you xx

  • I've sent you a PM.  Let me know if you don't see it.

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