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thyroid misery

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  • Registered Users Posts: 3,161 ✭✭✭Amazingfun


    I was like that on Eltroxin Sarah, I slept for long long hours and was still exhausted, plus, worst of all : I kept gaining weight. It was awful, even after 8 months on it my TSH was 12! I am on NDT now and I am so grateful I made the switch.

    Ps: there are a lot of people who don't do well on T4 only meds, you're not alone.


  • Registered Users Posts: 3,161 ✭✭✭Amazingfun


    Did anyone see this yet:

    https://www.facebook.com/photo.php?v=678163542222033


    Woman on Vincent Brown claims fluoride in the water helped give her thyroid disease. She doesn't drink the tap water here now and claims she is better.


  • Registered Users Posts: 17 Sarah_12


    Amazingfun wrote: »
    I was like that on Eltroxin Sarah, I slept for long long hours and was still exhausted, plus, worst of all : I kept gaining weight. It was awful, even after 8 months on it my TSH was 12! I am on NDT now and I am so grateful I made the switch.

    Ps: there are a lot of people who don't do well on T4 only meds, you're not alone.

    Thanks for your reply, that's interesting because I didn't even know there was more than one medication for thyroid problems, I'm not sure what exactly my bloods are as my GP is not the most efficient but I wonder if maybe this could be an option for me too?!

    Anything at all that would help with the fatigue would be amazing!

    Did you see an endocrinologist or is it your GP who looks after you?


  • Registered Users Posts: 3,161 ✭✭✭Amazingfun


    I am going to send you a Pm, but in the meantime I suggest you read this, it helped me immensely :)

    http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/


  • Registered Users Posts: 111 ✭✭busymum1


    Hi could anyone please pm me the name of a good endocrinologist in Cork/Munster area who'll prescribe Armour/Efra. I'd be really grateful. Thanks.


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  • Registered Users Posts: 561 ✭✭✭dollydishmop


    Sarah_12 wrote: »
    I'm not sure what exactly my bloods are as my GP is not the most efficient but I wonder if maybe this could be an option for me too?!

    First thing I'd be doing is asking for copies of my blood test results, so you can see for yourself where you are.

    Best of luck! ;)


  • Registered Users Posts: 5,391 ✭✭✭jozi


    I've had my bloods done over the last month or 2 for a high iron problem I might have. I also have an ongoing cough which the doctor thinks could be linked to my thyroid, or thats how I understood it anyway. I was with her again this morning to give blood and she went over number with me, from memory one of the value's was a little over 4, she said they don't treat until it's gone over 5.

    I've had a read for some of the symptoms, weight gain and tiredness are defo things I have noticed. From time to time I can lack a lot in motivation and feel quite down, I don't know if this could be linked or if they are signs of depression.

    Perhaps I'm jumping the gun a little but maybe I should work on doing something about it. One of the first posts had a lot of info, are there other things in addition to this? My mother also has problems with her thyroid.

    I didn't have a clue about what this was before I read some of the thread and did a search, it might explain some things or at least thats my excuse :p


  • Registered Users Posts: 17 Sarah_12


    Hi Jozi,

    I've never heard of a cough being a symptom of Hypothyroidism but I hear of new things everyday! If your feeling synptommatic you should push for treatment. My bloods were abnormal for a year or two before I pushed for something to be done. Also hypothyroid can most definitely cause depression like symptoms so hopefully once you push for treatment and get your levels right that will fade away :)


  • Registered Users Posts: 5,391 ✭✭✭jozi


    Hi Sarah, now that I think about it, the cough was something unrelated I spoke to the doctor about when I had my bloods taken to check for iron levels, it was from these results the last day that she thought I might have a problem as mam also has it.

    I've literally just moved for a new job after unemployment for months and intend to make some lifestyle changes like getting into shape again and lose some weight. Hopefully this will have a positive impact?

    I'll be speaking with the doctor again in a few weeks when my blood results get back.


  • Registered Users Posts: 17 Sarah_12


    Exercising and eating well/losing weight if you need to will of course help your mood and energy levels, if your bloods are borderline maybe that's all you need but if you find these things aren't making a significant difference you should go back to your doc.


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  • Registered Users Posts: 5,391 ✭✭✭jozi


    ld some one point me in the right direction for finding out what would be a good diet to follow and exercise regimes? I've just moved for a new job and want to get into shape and eat healthier, having the doc tell me my thyroid is on the high side is hoist another incentive for me to see this through and make it a routine.


  • Registered Users Posts: 3,161 ✭✭✭Amazingfun


    JOZI I am doing an eating plan for people with Autoimmune illnesses, it's called AIP.

    You can learn about it here:

    http://www.phoenixhelix.com/2013/05/19/what-is-the-paleo-autoimmune-protocol/


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Jozi, like everything thyroid there is no "one size fits all" regarding diet and exercise.
    The best thing is to eat whole foods, preferably home prepared. Avoid junk, processed foods. Include fruit and veg. Don't eat soy based foods and this can be difficult as soy is in many everyday foods including most bread.
    Learn to read the labels. I now make my own bread and sauces, no more pre-packaged stuff.
    Alcohol in moderation.
    Years ago, for a different reason, I gave up tomatoes, peppers, dried beans & citrus fruits and found it made a huge difference.

    As regards exercise, do what you can. I walk 45 minutes a day, when possible and find it makes a difference. Don't overdo it.

    The Paleo diet Amazingfun is on sounds excellent but needs willpower that I don't have but I stay as close to a clean diet as possible.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Well I got my blood results back and am disappointed in them.

    TSH 9.84 (.4-3.8) down from 10.07 in January
    FT4 12.8 (12-22) down from 13.6 in January

    The lab didn't do FT3 in spite of doc specifically requesting it:mad:

    I added an extra 12.5 mcg a week after last bloods in Jan. making my dosage 12.5 x 6 days & 25 x 1 day. The only other thing I changed was switching from taking the meds at night to taking them 1st thing in the morning a half hour before breakfast.

    I was pleased to be able to reasonably tolerate the small increased dose but given that the FT4 has dropped in spite of the increase I'm quite disappointed.

    I have an endo appointment next week so will see what he says before I make any more changes. Damn this illness it's so unpredictable.


  • Subscribers Posts: 683 ✭✭✭FlipperThePriest


    My levels lately are absolutely spot on, i.e. tsh around 2 (can't remember exactly). I'm on 100mcg 4 days week, 200mcg 3 days week. Still feeling the only symptoms I've ever felt though; sudden energy crashes, brain fog, bit moody at times. I've tried to cut down on bread as after I eat quite a bit I think it's triggering crashes.. so I'm in the process of being tested for coeliac (even though I doubt I've coeliac - no digestive trouble) but maybe a non-coeliac gluten intolerance?

    If nothing shows up there I think I'm just going to go for a food allergy test that boots offer, it tests for 90 foods. My opinion is mixed on the merits of this tbh but I'll try anything. Plus, I guess it can do no harm.
    Wyldwood wrote: »
    The only other thing I changed was switching from taking the meds at night to taking them 1st thing in the morning a half hour before breakfast. .

    Did you do this gradually over the course of a few weeks? I take mine at night as my morning routine varies over the course of the week.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Did you do this gradually over the course of a few weeks? I take mine at night as my morning routine varies over the course of the week.

    FlipperThePriest, not sure how I could have gradually switched from night to morning? I just didn't take the meds one night and took it the next morning instead and carried on from there. Think I should maybe go back to night again as the FT4 was higher. Will wait for endo first.
    Post edited by Boards.ie: Niamh on


  • Subscribers Posts: 683 ✭✭✭FlipperThePriest


    Wyldwood wrote: »
    FlipperThePriest, not sure how I could have gradually switched from night to morning? I just didn't take the meds one night and took it the next morning instead and carried on from there. Think I should maybe go back to night again as the FT4 was higher. Will wait for endo first.

    Ok. I just assumed since there is approx a 4 hour window (i.e. 2 hours before, 2 hours after) to take your meds, you could easily make a gradual shift rather than risk the sudden change.
    Post edited by Boards.ie: Niamh on


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    I never thought of that, maybe I should have done it more gradually.

    Glad you're feeling well. I get that sudden onset fatigue as well and it's a killer when it hits.
    Post edited by Boards.ie: Niamh on


  • Subscribers Posts: 683 ✭✭✭FlipperThePriest


    I suppose I am well compared to what some go through around here.. but my point was that I am still getting all the symptoms I was always getting prior to going onto eltroxin (mentioned above), which leads me to believe something still isn't right, even though my levels appear normal. Which is why I wanted to get tested for things like gluten.. and maybe other food intolerance.


  • Registered Users Posts: 4 Amethyst2014


    Hi all, am new to the Boards and this thread. Having been misdiagnosed for 15 years, I have just had my second blood tests to confirm an underactive thyroid. I asked my GP initially when aged 23 if all my health problems could be due to my thyroid and was told it was not possible. So for the last 15 years, I have been receiving treatment for severe anxiety, depression, insomnia, exhaustion and stomach problems. I have been in the care of psychologists, psychiatrists, GP's, Gastroenteroligists, homeopaths, hypnotherapists, chinese medicine, acupuncturists, nutritionists, kinseologists and so on. I have spent thousands of euros trying to get a correct diagnosis. Its over one year since I had to leave my job due to stress, illness and the threat of being fired was the final straw. I am now at breaking point and will do anything to get well, but having read all the posts in this forum and many others, I am terrified that even if I do finally get the correct diagnosis, I will not be able to find a GP or Endocronilogist to treat my condition properly. I also fear that I have adrenal burnout due to 15 years of stress, debilitating anxiety and nervous breakdowns.

    Therefore, I would be so grateful if anybody could recommend a good GP or Endocronologist in the Cork area that will takes Thyroid and Adrenal problems seriously and would be willing to perform the relevant tests and offer the correct treatment. I am on a medical card, but will try and find the money if I have to go private.

    Thank you so much for allowing me to voice my issue and I would greatly appreciate any replies from those that have any information on Thyroid/Adrenal health professionals in the Cork area


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  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Amethyst2014, you have been through the mill you poor thing.

    I see an endocrinologist in the Cork Clinic, Western Road. He is private and came highly recommended by a friend in the medical field. I don't know how he is with adrenals but is happy to treat me based on symptoms rather than blood numbers, however, I'm not a typical thyroid patient as I have trouble tolerating Eltroxin. I can PM you his name if you wish. I do remember hearing about a female endo in CUH who was supposed to be good but can't remember her name, somebody else may be able to help you on that.

    As regards a GP, I have a female doc who seems pretty good with thyroid problems. Whereabouts in Cork are you?

    Problem is most endos specialise in Diabetes and thyroid problems take a back seat. I went to have bloods done recently with the nurse in my GPs and when I said I wanted tests done for the Endo she looked at me and said "oh, you're diabetic". That says it all.


  • Registered Users Posts: 4 Amethyst2014


    Hi Wyldwood,

    Thank you very much for your quick reply and advice. I would be very grateful if you could pm me the name of your endocronologist.
    I am due to get my blood tests back next week and my GP said that if they show underactive thyroid, then she will put me on a daily tablet, which I believe will be Eltroxin and she will leave it at that. I don't even think she will give me a referral to an endocronologist, that is why I need to find one myself. I am in West Cork. Thanks again for your help


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Amethyst, I think you need a referral letter to see the endo, unfortunately, but give a ring and ask anyway.

    Make sure you get a copy of your blood results from the GP so that you can track your progress (or lack thereof!). It's good to know where in the lab range your results fit when you feel good so that you can aim for that sweet spot longterm. You're legally entitled to them.

    I'll PM that name now.


  • Registered Users Posts: 3 ludobites


    Hi All,
    I am a newbie here, I am hypothyroid. I came across this thread from goggle as I am trying to find a good Gp/Endo, and it is just incredible. Yes I read up and use internet but you cant beat peoples own personal experiences.

    I had my bloods done and I managed to get my T3 checked (this was not easy) the results are below
    I could write up how bad I feel and all the symptoms but it really would take up the entire page and you all seem to experience them also. Summary.... Life is S@*%E

    I am hoping to find an excellent gp/endo I dont care at this stage what part of the country I will go there I am at the end of my rope.


    TSH 130 Labs own indictor is lower 0.27 upper 4.20
    FT4 4.2 lower 10.50 upper 22.00
    Total T3 0.67 lower 1.08 upper 2.90


  • Registered Users Posts: 735 ✭✭✭cltt97


    Ludobites - I'm not surprised you feel crap with those readings, you're severely hypothyroid. Are you on any medication? BTW Total T3 is not a massively helpful reading, it's free T3 you want, which is hard enough to come by... but in any case the other markers are sufficiently bad in your case!!!


  • Registered Users Posts: 3 ludobites


    Thank you for reply.
    Sorry this is so long winded.....
    Im on 100 Thyroxine. Those readings were from Jan. I was with gp yesterday and got current blood results back TSH 9. Free T4 20.4 Total T3 1.16.
    Gp had me armed with all my results so when i went to Hse endo (appointment was for today) that I could say " I understand my T4 has improved significantly my tsh is still down, my question is does my T3 need replacement"
    so appointment goes as this nurse takes weight and bp. then registrar calls me
    we go into room reg is very pleasant and asks me how is my form,I start to tell how Im feeling im in the middle of this when Consultant walks in introduces oneself registrar gets up to let endo sit down " yes your on 100 thyroxine im happy with that your tsh has come down well make appointment to see you in 6MTS time"....."Oh ok "
    I ask about t3 reading it's completely dismissed by endo everything on the internet is lies (I did not bring up internet) I then say what about symptoms Endo proceeds to give me a very fast paced speal on biochemistry and no they do not go by symptoms. I say I Don't and have never felt better on t4. Endo says gp will check fatigue levels I say Adrenal fatigue is it? Im then told there is no such thing it is made up by xyz to make money (I presume from idiots like me as this was very much endos intention on making me feel like one) and that was basically it endo instructs registrar to give me request form for cortisol and he leaves. 5 minutes in n out. Nothing else was asked of me other than when registrar started asking me about symptoms but that was not finished as endo had walked in......... is this normal scenario. Sorry guys about long post and I only just on here, I am thankful and grateful to all that I found this thread. Ill never write one as long again


  • Registered Users Posts: 254 ✭✭ttoppcat


    Are you in Galway by any chance ludobites? that sounds exactly like the conversation I had with the last consultant I saw there :(


  • Registered Users Posts: 735 ✭✭✭cltt97


    Yes I had my fair share of ignorant endos as well - I sat through an hour of talking to a registrar + endo trying to explain that despite all my "normal" readings I felt absolutely crap, but that didn't register with them at all. I left there after an hour of fighting with them thinking to myself, this was the greatest waste of my time ever! The trick is not to give up and not let them convince you that this is all in your head and that really you should be feeling wonderful so the fact that you aren't is totally your fault! Just keep switching endos until you find the right one.
    Also, again, the total T3 won't help you, you need free T3 readings - these will tell you how much is available to the body, the total is bound and unbound floating around but it's not all available to your body, so you really don't get an indication of what's there for the body to use.
    Also a word of wisdom - if you were diagnosed in Jan with those levels I think it's a bit fast for you to be already on 100mcg, I'd be very careful to not increase again too soon. Can cause all sorts of havoc. It will take the body considerable amount of time to adjust and it will also take a good while before you will actually feel better. Thyroid meds are no immediate cure, when you present with readings like the ones you had it will take some time for the body to repair itself... we all tend to be impatient... patience is virtue number one the thyroid sufferer needs to acquire on the long road of recovery :-)


  • Registered Users Posts: 2,462 ✭✭✭Orla K


    ludobites wrote: »
    Thank you for reply.
    Sorry this is so long winded.....
    Im on 100 Thyroxine. Those readings were from Jan. I was with gp yesterday and got current blood results back TSH 9. Free T4 20.4 Total T3 1.16.
    Gp had me armed with all my results so when i went to Hse endo (appointment was for today) that I could say " I understand my T4 has improved significantly my tsh is still down, my question is does my T3 need replacement"
    so appointment goes as this nurse takes weight and bp. then registrar calls me
    we go into room reg is very pleasant and asks me how is my form,I start to tell how Im feeling im in the middle of this when Consultant walks in introduces oneself registrar gets up to let endo sit down " yes your on 100 thyroxine im happy with that your tsh has come down well make appointment to see you in 6MTS time"....."Oh ok "
    I ask about t3 reading it's completely dismissed by endo everything on the internet is lies (I did not bring up internet) I then say what about symptoms Endo proceeds to give me a very fast paced speal on biochemistry and no they do not go by symptoms. I say I Don't and have never felt better on t4. Endo says gp will check fatigue levels I say Adrenal fatigue is it? Im then told there is no such thing it is made up by xyz to make money (I presume from idiots like me as this was very much endos intention on making me feel like one) and that was basically it endo instructs registrar to give me request form for cortisol and he leaves. 5 minutes in n out. Nothing else was asked of me other than when registrar started asking me about symptoms but that was not finished as endo had walked in......... is this normal scenario. Sorry guys about long post and I only just on here, I am thankful and grateful to all that I found this thread. Ill never write one as long again

    That sounds better than mine, didn't get to see the endo(who is friends with my gp) but instead the first one I saw seemed to be an intern and was a complete bitch with the I'm better than you because I'm a doctor attitude. Appointment was at about 2/2.30 and she finally decided to pick up my file I was the last one there and the reception desk had closed. The second time I'm pretty sure it was his first day. It was utterly useless and in my head I picked out the main points that they were going to say before they even said anything to me. I should have an appointment coming up but because the reception desk was closed the second time I'm not even sure if I'll get it. They'd turned off all the lights in the corridors too, it was a day wasted.

    Also on the nurse thing, she presumed I was there for diabetes when I told her I was there for my thyroid she went off to make sure she didn't need to do any different tests. It didn't fill me with confidence.

    Also I'm getting really tired in the afternoon. I started a human genetics and health course, it's just a short term distance learning one but I think that's what has me tired and I'm not in the heavy bits yet! It's just about cells/chromosomes dividing now.


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  • Registered Users Posts: 5,391 ✭✭✭jozi


    Just spoke with my doc after she got my bloods back. Have to try and get into her when I get a chance, she wants to talk me through/over this as she said she might put me on a small amount of eltroxin (or a tablet or is this the same?). I think she said my tsh was high but close to borderline for treatment, she said under 10 - from memory.


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