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thyroid misery

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  • Closed Accounts Posts: 631 ✭✭✭RoadhouseBlues


    Cheers blingy. Thanks for the info. The barley water has been a great help to me so far. I added some fresh ginger to it to make it a bit more tasty. The future is bright:-). This is a great thread for thyroid sufferers. And related illnesses of course:-)


  • Closed Accounts Posts: 364 ✭✭lovelystuff


    Got my latest bloods today and they are worse than ever. I'm so grateful to have a brilliant consultant,at least I have faith that she will sort me.out. it's hard to feel optimistic when you have put on a stone and can barely get out of bed in the morning though! I think aip is worth another shot,I failed spectacularly the last time I tried!


  • Registered Users Posts: 37 MistySky


    I haven't been on here in a while, but just saw your post lovelystuff. Sorry to hear you are not feeling well. I really hope that you will get sorted soon, as I know how it feels not to be able to get up in the morning and have barely enough energy to function.

    I found out about a month ago that while my TSH, T4 and T3 levels are all 'normal' - my Free T4 levels have always been low. Also I have low potassium levels - not sure if that's a factor. Anyone else come across this?

    That would explain why I've never had any energy on combined Eltroxin / Thybon meds (I can only take a low dose of Eltroxin without feeling wretched). My moods etc. had been stable enough until earlier this year, but now I'm getting bouts of depression / anxiety again which is awful. And I've become so forgetful that it's embarrassing.

    I've been pushing hard to try NDT but I haven't had any luck yet. Maybe it's not a miracle cure, but I have high hopes given people's feedback.


  • Closed Accounts Posts: 631 ✭✭✭RoadhouseBlues


    Its funny. I've been noticing the forgetfulness for the last few months. Its just small things, but it can be embarrassing in public. And names. Feckin' names. Even though I know the person. Sometimes it takes a few minutes to register:-)


  • Registered Users Posts: 1,326 ✭✭✭Blingy


    Its funny. I've been noticing the forgetfulness for the last few months. Its just small things, but it can be embarrassing in public. And names. Feckin' names. Even though I know the person. Sometimes it takes a few minutes to register:-)

    This happens me all the time and it can be very embarrassing. Anyone any recommendations to boost memory power? Eltroxin certainly isn't helping.


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  • Closed Accounts Posts: 631 ✭✭✭RoadhouseBlues


    Blingy wrote: »
    This happens me all the time and it can be very embarrassing. Anyone any recommendations to boost memory power? Eltroxin certainly isn't helping.

    Sorry I have no idea. I find that it catches me off guard. I could be grand and then something stupid happens. Like last week. Was in the post office and decided to put money in my bank account while I was there. Took out the card, left it on the counter and then like a feckin' idiot, put it back in my pocket. Couldn't remember if the girl had taken it. In the meantime the girl behind the counter is waiting for the card. I know how it sounds. Feckin' stupid. And a line of people behind me. Arghhhhhhh:-)


  • Registered Users Posts: 735 ✭✭✭cltt97


    Names! Yes I have that, too... And film names, and actors, absolutely useless! Or putting stuff somewhere "handy"... What everyone here should do is eat two Brazil nuts every day (single best natural source of selenium) and take vitamin D supplements. Also iron supplements. These are usually very low and hard to get up, especially the iron.
    Also for those ones that haven't been diagnosed not that long ago - it takes absolute ages to get better, up to a year really and you might think you need a higher dose or the meds are not working, but remember, it took ages before the illness actually reached a level where you noticed symptoms, it takes equally as long for the body to really recover. If you try and rush it, it will mess up your system even more, so patience is really important. We are not like "normal" people, we are energy deficient and we need to be careful not to overdo it. It's really frustrating at times - I see people 20 years older than me being twice as energetic.... And what works for one, doesn't for the next. Some of us have adrenal issues as well, it's really complicated and the best thing to do is to educate yourself about everything and find the thing that works for you.


  • Closed Accounts Posts: 364 ✭✭lovelystuff


    I'm diagnosed 2.5 years and still struggling, thanks for the tips! I think part of it is accepting that there will be flares and bad days and it's not our fault.


  • Closed Accounts Posts: 141 ✭✭redcatstar


    Is anyone here taking any other thyroid meds or are we all on eletroxin , I can't even get my T3 tested , I live in the north west , any advice welcome I just want to vegetate all the time no interest in anything anymore


  • Registered Users Posts: 735 ✭✭✭cltt97


    I know what you mean, I felt indifferent about everything. Lost all interest in anything really, any hobbies I had... I just managed to get up, go to work, get home and watch soaps and sleep... thankfully this is in the past for me, but again it took a while, it's important to eat well, sleep well, take additional nutritional supplements (my iron was very low, my Vit D deficient,...) and find the meds that work for you. Now the biggest hurdle is finding a doctor that will work with you, I had to go through a few, the trick is to move on. You go to one, you don't get anywhere, you just keep going to another one, until eventually you'll find one that'll work with you. I am now on a combination of natural thyroid hormone (pigs gland really), synthetic T3 and a low dose of hydrocortisone. Works for me now, but I had a very long journey to get here. I went off gluten and dairy for a year, but it didn't make much difference really, I got myself tested for coeliac and thankfully I don't have that, some people really benefit from it and feel much better, some people here really are doing well on the paleo diet, I haven't tried that one yet.... I feel brilliant on raw fruit/veg juices... but as I said, you need to figure out what works for you. If you read through some of the previous posts (I know it's a really long thread!) there is lots of advice on the type of blood tests one should get and the type of things one should watch, some people do better on taking the tablets at night, some measure their body temperature to keep track of their progress, there is a lot one can do to simply "self-monitor". But whatever you do, never accept someone making you feel like you're a hypochondriac, that you're imagining your problems and that you're just lazy and it's all your fault, and blablabla and really you should feel near perfect because your tests are in normal range....


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  • Closed Accounts Posts: 141 ✭✭redcatstar


    Hi thanks for that, wat doc did you go to pls,
    Also I had a cortisol dexamethasone suppression test done
    Normal range 171-536
    Mine was 16
    I don't understand wat it means, have you any ideas


  • Registered Users Posts: 735 ✭✭✭cltt97


    I don't know much about this test but from googling it, it appears it's done to see if you have Cushing's disease (too much cortisol), but in order to interpret the findings you'd need the before and after results to the specific dose of dexamethasone given and also your ACTH levels. Did the doctor not explain the results to you?

    I had an ACTH stim test to see if my glands are capable of producing cortisol - this is done to test for addison's disease (not enough cortisol).


  • Registered Users Posts: 4,055 ✭✭✭Emme


    I have adrenal fatigue at the moment and I am very low in cortisol. People with thyroid problems should routinely get their adrenals checked.

    Can anyone recommend an endocrinologist who is happy to prescribe armour? My GP treats my thyroid but I need to see a good endocrinologist for adrenal issues and to be sure it isn't anything else. Thanks :)


  • Closed Accounts Posts: 631 ✭✭✭RoadhouseBlues


    So just an update. They are reducing my Eltroxin from 150 daily to 100 one day and 150 the next. I didn't feel any different being on the 150 daily, so it will be interesting to see how the reduced dose affects me. Hail to the thyroid sufferers. We will get there eventually:-)


  • Registered Users Posts: 4,482 ✭✭✭harr


    Hi
    Quick question does anybody suffer from bad constipation,I could go a week or more before having to use the toilet and often end up having to use Dulcolax because nothing else works and Dulcolax are not the nicest product to use.
    Doc did put me on fibre supplement but no joy with that also taking lactalose and movicol.
    Doctor is just putting it down the under active thyroid, can't go on taking laxatives forever as they will make the problem worse in the long term. :o


  • Registered Users Posts: 1,326 ✭✭✭Blingy


    harr wrote: »
    Hi
    Quick question does anybody suffer from bad constipation,I could go a week or more before having to use the toilet and often end up having to use Dulcolax because nothing else works and Dulcolax are not the nicest product to use.
    Doc did put me on fibre supplement but no joy with that also taking lactalose and movicol.
    Doctor is just putting it down the under active thyroid, can't go on taking laxatives forever as they will make the problem worse in the long term. :o

    Here are a few things which might help:
    Big cup of Hot water and lemon first thing in the morning
    Some linseed on your breakfast (porridge, cereal)
    I didn't find prune juice helped but some people do.
    A very strong coffee sometimes works for me (I am not normally a coffee drinker)
    Fybogel - don't taste great but better than laxatives.
    A healthy balanced diet with lots if fruit and veg!
    I never found a magic potion!!


  • Registered Users Posts: 4,482 ✭✭✭harr


    Will try the hot water and lemon and the coffee in the mornings , my diet is spot on I need to keep that in check because I tend to gain weight very quickly if my diet is not watched.
    Have tried fybogel did not work for me.
    Thanks for the suggestions.


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


    Drink lots of warm water through the day. Eat prunes, it's the skin that's the best part. Dried apricots. Oranges, pears and grapes. Magnesium supplements, I use a spray that's applied to the skin. About a 2" square of at least 70% dark chocolate daily it loaded with magnesium.

    Avoid too much dairy, white bread, white rice, pasta and bananas. Wholewheat versions ok if you tolerate wheat.

    Plenty of exercise, a brisk walk is great for getting things moving.


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


    I second the magnesium suggestion , but getting optimized on the right thyroid replacement med is essential ;)

    http://valene.hubpages.com/hub/5-Ways-to-Relieve-Constipation-Naturally


  • Closed Accounts Posts: 141 ✭✭redcatstar


    No endo did not explain it , or do a baseline test or an ACHT test ( think that wat u wrote)
    Just did the dexamethasone suppression test , so I don't know if that normal because I suppressed or too low, seeing her on Tuesday, will let you know , also going to c will she give me armour or another T3/T4 combination


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


    I'm having a few "deep thoughts" today :p and as a result now have a couple of questions. I thank you all in advance for your attention and time.

    I've been wondering about the following:

    1. If there were an Irish thyroid (NDT) product available on the market, would you be interested in purchasing it?

    2. If there were such a thing as Thyroid Coaches, or something like it, persons who had successfully navigated the crazy and frustrating waters of recovery from this illness, would you avail of their services?

    Thank you! Have a good weekend.

    ***Just for the record my answer to both is a big YES ;)


  • Closed Accounts Posts: 364 ✭✭lovelystuff


    I say absolutely yes to both! I'm having a bad time at the minute, was meant to be going away this weekend with friends but had to cancel it. I actually tried a dietician who was very good and suggested paleo type eating and gentle exercise but nothing seems to help. It's all very frustrating!


  • Closed Accounts Posts: 141 ✭✭redcatstar


    Big big yes amazingfun


  • Closed Accounts Posts: 141 ✭✭redcatstar


    Hi
    If anyone is on Facebook there is an Irish group up and running , its called thyroid Ireland, it's pretty good and easy to follow


  • Registered Users Posts: 834 ✭✭✭Stationmaster


    Just recently diagnosed with hypothyroidism due to hashimoto syndrome. Started in early June on 50mg eltroxin, then went to 100mg and this morning it's been upped to 150mg's. My endocrinologist is in the galway clinic. Is there anything else out there I should be aware of/considering etc? It's a minefield of a subject to even start researching. Great and very honest thread here and i've already picked up a lot of info.
    Thanks.


  • Closed Accounts Posts: 141 ✭✭redcatstar


    Hi
    You are probably seeing same endo as me Dr bell,
    I have only seen her once and am going back tomorrow
    I intend to find a new one if I don't find her good tomorrow
    I know there are some good ones in Dublin, so will let you know
    I want to be tested properly TSH FT4, FT3 RT3 but she only did TSH and T4 , FT3 is the active hormone , so a lot of people with hashimotos still have hypo symptoms and joint pains etc cause right tests are not been done and we end up on eletroxin which is only T4
    We need a combination of T3 and T4 to be well
    Look up stop the thyroid madness , it has great info
    If you want to pm me pls do
    uote="Stationmaster;91894169"]Just recently diagnosed with hypothyroidism due to hashimoto syndrome. Started in early June on 50mg eltroxin, then went to 100mg and this morning it's been upped to 150mg's. My endocrinologist is in the galway clinic. Is there anything else out there I should be aware of/considering etc? It's a minefield of a subject to even start researching. Great and very honest thread here and i've already picked up a lot of info.
    Thanks.[/quote]


  • Registered Users Posts: 834 ✭✭✭Stationmaster


    No, different doctor. I asked her this morning was there any other options/remidies etc and she said no, this was it.
    I have very little research done yet myself to be honest as I think I was avoiding the issue a bit but must get working on it now.


  • Closed Accounts Posts: 141 ✭✭redcatstar


    [Hi there are other options , will get back to in few weeks, good luck
    quote="Stationmaster;91899020"]No, different doctor. I asked her this morning was

    there any other options/remidies etc and she said no, this was it.
    I have very little research done yet myself to be honest as I think I was avoiding the issue a bit but must get working on it now.[/quote]


  • Registered Users Posts: 4,482 ✭✭✭harr


    Hi all,
    A little worried today,last night in the shower I felt a lump in the left side of my neck swollen glands I taught but I don't have a cold or feel unwell so off to the GP this morning she checked ears,mouth and then neck she went straight to the lump as she could see it ,ruled out swollen glands and she noticed I had a tightness in my throat. So quick feel around and looked up my last bloods which were all fine my thyroid function was all good and eltroxin dose was good.
    Called in another doctor who also had a feel and then they left together for about 2 minutes. She comes back in asks if I have health insurance because I need a ultrasound and some other scan done early next week and might need a biopsy done depending on results . They think it is nodules on the thyroid but can't be fully sure till after scans :eek:
    She told me not to worry but to tell the truth I am scared ****less and very afraid to google thyroid nodules :confused:
    Now it's not a small lump or massive but a definite raised lump about one inch x one inch.
    Anyone experience this before ..?


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  • Registered Users Posts: 735 ✭✭✭cltt97


    Friend of mine had them, they were surgically removed and all is fine... try not to stress... have you gotten an appointment yet?


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