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thyroid misery

1356749

Comments

  • Registered Users, Registered Users 2 Posts: 388 ✭✭El.duderino


    harr wrote: »
    hi
    i have a underactive thyroid since birth so i dont know what life is like with out a underactive thyroid.I do struggle with my weight and get very tired at times other than that life is pretty normal,just stick to a good diet and get some exercise.My gp does my bloods so far no need to see any body else.
    I have developed arthritis in my knees so my gp is trying to find out if the 2 are linked.I am currently taking 200 mg of Eltroxin daily.
    Can someone tell what one would put in a thyroid diary? I have not seen a endocrinologist since i left the care of crumlin over 17 years ago.The body does feel a bit battered some mornings and i get fuzzy head now and again so i might get my gp to set up a meeting with a endocrinologist at some stage in the near futher.Thanks LimerickBishop you have some good tips in your post.Best of luck tigerb but my sure everything will be fine :)

    Hi your post interests me. (As fellow underactive sufferer from young)

    I recently read this article and I quizzed the consultant in June. If I should be worried myself using eltroxin in the long term. Of course they said i,m grand and sent me on my way. Keep active to promote good bone strength and agility.

    You should ask your GP to refer you to Endocrinologist. They can help you better than your GP. Doesn't cost anything either.


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    Well, there I was thinking I was on the mend, TSH slowly coming up, 0.24 at last test & due another next week, when wham the palpitations, racing heart & tremors have hit again in the last two days. Not feeling good at all. At this stage I think I'll have to come off the Eltroxin totally for a while & see how things go.
    Had planned on going on holiday at the end of September but think that's not going to happen now.

    So tired of this roller coaster, it's been going on for over 6 months now. On top of it all my doctor gave up her practice so I'm facing explaining my woes to a new GP.

    Sorry about the rant, just so frustrated.


  • Closed Accounts Posts: 2 Smokey10


    Hi all,
    I have an underactive thyroid for the for the last 10 years.
    After beginning on the eltroxin I felt great, prob cause I felt so so bad, my TSH was over 580 (this is not a typo!). The endocrinologist said he had never seen a case like it before & could not believe that I was still sitting in front of him as the depression was so bad. I was very young at the time too, about 20.
    Anyway, once on the eltroxin I felt better all round, depression lifted, lost some weight, my body shaped changed also as apparently I haven’t finished developing after puberty due to the hormone imbalance - so life was good :)

    However my eltroxin was 200mg a day & I was starting to become underactive again, after about 2 years of ''lets leave it another 6 months & do another blood test" I discovered that I had coeliac disease (I had been anemic since I was 16). Since going GF, my eltroxin has been reduced to 150mg & I feel great! I get Thyroid Function blood tests ever 2 months. The eltroxin dose has only regulated recently (almost 3 years GF). It took almost 2 years for my coeliac antibodies to come down to normal.

    So my advise to anyone with thyriod issues is get ur bloods done ever 2 months until they are regular, and then ever 6 months after that for evermore. I had to pursue this myself, my experience with doc's is great so I think its better to be informed yourself.

    Also, keep an eye for (unexplained) anemia as this is a symptom of coeliac disease, which unfortunately you are more prone to once you have thyroid problems (autoimmune gene)

    :)


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    To hgm: There appear to be two different camps of how to treat people that are clinically euthyroid, but have antibodies. One camp says lets do nothing and wait and see, and the other camp is of the opinion that supplementing with thyroid hormones will keep the inflammatory process in check, and they will supplement similar to someone who is hypothyroid. Personally, I believe in the second camp. One of my friends falls into this category and she was put on Eltroxin, is now on 125mcg and is feeling reasonably ok. So there are definitely doctors out there, who treat based on antibody count.
    To el.duderino - whilst overdosing with eltroxin is certainly not desirable, it is also well known that we (us hypos) quite often have low vitamin D levels (which is needed for calcium), so without the latter, bone health can be compromised. Often also low levels of other vitamins/minerals are observed, so well worth having these checked out at the next blood test.
    To Wyldwood - hang in there, it will take some time to stabilise. From what you're saying you're obviously still on too high a dose and need to reduce down further. I have also read that sometimes our own glands, although pretty much half dead, occasionally spring back to life for a bit and spit out hormones which can cause chaos. I think it might be better if you went to an endocrinologist, as they might test for a few more things to see if anything else is going on. I find GPs generally don't know all that much about thyroid disease beyond T4 and TSH.

    I've heard of lots of people who feel much better on a gluten free diet and there is good scientific evidence that hypothyroidism and coeliac disease often co-occur, with an increased chance of developing the other if having one of them. For that reason, although I was not diagnosed as coeliac (I did have antibodies but below what is considered coeliac), I went on a GF diet - I figured one auto-immune disease was enough.


  • Registered Users Posts: 110 ✭✭MeganM


    After losing quite a lot of hair for 8 months and an obvious lack of interest from my doctor (He thought I was being a hypochondriac :rolleyes:), I finally pushed for some blood tests suspecting a thyroid problem and discovered that my TSH was 4.2 (0.3 - 3.0) and my T4 level was 12 pmol/L. He didn't seem very sure as to what course of action to follow as he described it as only slightly under active and decided that I should come back for a second blood test.

    I returned today for blood test number two and my doctor prescribed me 25 micrograms of Eltroxin and depending on the results of the blood test, I will have to take it.

    I was hoping to possibly get a second opinion from someone who might know a little more about it than me.

    I'll be 19 next month and I'm moving away to University next week so I'm wondering how the it might have an effect on my day to day life.
    I'm a healthy weight, but I have found it slightly easier to gain a pound or two in recent months and a lot more difficult to lose it, I find myself being exhausted during the day for a few hours and then completely fine a while after (without having consumed food) and I've noticed my memory and concentration has gotten a little worse too (simple words for day to day items seem to just vanish from my mind sometimes).

    I was also wondering if anyone else had experience a lot of hairloss at the same level of under activity I have?


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    Hello All
    an update on my situation. After a not too good week I went to see a new GP today. Her initial reaction seemed to be surprise at the treatment I've received to date, given what I've been through since I shot from hypo to hyper.
    She asked if I'd been tested for anti-bodies, answer no, if I was ever referred to an Endo, answer no, how was my condition managed, answer just by TSH/Free T4 test results through GP.
    When I had the last bloods done in the previous practice, & results were still way off, the recommendation was to do nothing for 3 months and repeat tests. I could see she wasn't impressed with this but kept a professional silence.
    Anyway upshot is I have had bloods taken for antibodies and current TSH/Free T4 and she is referring me to an Endo as I may need beta blockers for the palpitations and radioactive iodine testing to see whats going on with the minute bit of thyroid gland I still have after my surgery many years go.

    While I'm not looking forward to going back through all the investigations once again, I'm relieved that finally I might start to feel better again soon.


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    That's great, I did wonder a bit about the somewhat slow reduction of your thyroxin given the mad symptoms. Seems like this doc is taking your condition seriously. I'm suffering from fierce headaches at the moment, they sometimes come and last for days and I have no idea why. The joys of a buggered thyroid...


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Diagnosed NOV '09 TSH of 75. Put on 75mcg of Eltroxin. 100KG
    Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
    Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
    Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
    Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
    Blood Test JAN '11 TSH of 5. Kept on 125mcg of Eltroxin. 90KG
    Blood Test APR '11 TSH of 4.18. Kept on 125mcg of Eltroxin. 89KG
    Blood Test JUL '11 TSH of 2.40. Kept on 125mcg of Eltroxin. 84KG
    Blood Test SEP '11 TSH of 6.04. Kept on 125mcg(?) of Eltroxin. 85KG

    Free T4 18.8.
    Cholesterol (Total) 5.1
    HDL 1.4
    LDL 3.0
    Triglyceride 1.7

    So, the downward trend of TSH has now ended, and I half expected it since I started feeling very slightly worse off in the period just before I gave the blood sample 8 days ago. This, I feel, was because I was in London looking for work. London was where I was 2 years ago when I started feeling unwell and got diagnosed. I'm just wondering is big city living a no no for me, with the stress and fast paced life unsuitable for my condition? Or was this gonna happen anyway, regardless of where I was. I've also noticed that I feel more angry about being unemployed lately, perhaps that has something to do with the rise in TSH.

    Anyway, I'll find out next week when I visit my GP whether I'll be getting a change in dosage of Eltroxin.


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    LimerickBishop sorry to hear you're not feeling well again, you were doing so well. Stress definitely plays a part in suppressing thyroid function. You may need to up the Eltroxin but please be careful not to go hyper it's so difficult to control.
    While being unemployed is certainly a huge stress to be under your health is top priority.

    Hope you feel better soon


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Hi Wyldwood,

    I may have overstated it, I still feel well in general. Today for example, I swam 50 lengths at 25m per length, that's 1250m in total, all in one go. This is my best ever. I have a feeling the TSH may have something to do with the awful weather we've had lately (can't think of a worse July and August), I found it completely frustrating. I've got a good GP, appointment next Monday, so I'll inform him of my wellbeing.

    I'm heading back to London tomorrow, so I'll keep an eye on how I feel while there.

    Has anyone else got a similar story?


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  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Well, I'm there with you on the weather. Feel a gazillion times better when it's bright, warm and sunny, although I'd say so does the rest of the population :-) And stress is a total killer for me, too. As is lack of sleep. I think in general the body's needs seem to fluctuate periodically, and as Wyldwood said, be careful with increasing your dose, I would just observe this for a while and get a few readings before adjusting upwards, especially since you've been doing so well on it. The whole anger issue is interesting, too. Maybe have a little look into adrenal fatigue. I found myself getting very irritable when my cortisol was low, impatient and easily frustrated - not like me at all, but I got that sorted out again.


  • Registered Users Posts: 66 ✭✭littlesista


    Hi, I've been treated for hypo since June. Had symptoms for 2 years.

    On Eltroxin 25. I felt much better initially but getting old symptoms. A weekend away at a wedding took me 3 weeks to recover from recently, can't keep up with my healthy fit friends !

    Will I always struggle to get a balance ?
    Do I have to modify my very VERY fit active competitive sport lifestyle?
    Will this always fluctuate?
    Where will I be in 20,30,50! years time ?

    I know I need to look at meds level. Was at gp today. Worst I've been is Tsh 7.3

    Thanks, just looking for other people's experiences with day to day life and hypo. Hate it :) but determined to find optimal health !


  • Registered Users, Registered Users 2 Posts: 1,275 ✭✭✭RubyGirl


    Looking for some advice please, diagnosed with underactive thyroid and doc has put me on 50mcg of Eltroxin. I've been on it now for 12 days and no change.

    Does it take long when on this medication to notice a difference?


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Well, it depends on how hypo you are really and everyone is different. I started feeling better fairly quickly, but it ebbed off again soon enough, too.
    It takes approximately 6 weeks until you've reached a steady state of circulating hormone in the body, so that's why in the beginning you have to wait a good 6 weeks inbetween each dose adjustment to go for a blood test to see where you are with it, and I found everytime I had an increase I felt fantastic for about two weeks and then would fall back into not feeling so fantastic. In the end it took quite a few months before I started feeling reasonably normal, then I developed some other problems and everything went totally crazy, but I think I'm very much the exception than the rule here, most people do fine on Eltroxin, but as I said it takes a few months before you'll know what the right dose is for you. I think the majority of people need around 100-125 mcg, but you need to build up to this slowly and have regular blood tests to monitor TSH and FT4


  • Registered Users, Registered Users 2 Posts: 1,275 ✭✭✭RubyGirl


    Thanks, ya I have to take a course of 6wks and go back for more bloods. Will have to be paitent so. Thanks again.


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    The latest on my bloods. My new GP took me off all eltroxin about a month ago and since then I've been feeling remarkably better. Still get the odd palp, racy heart feeling but much less frequently and milder. My bloods are improved with TSH back to 2.3, antibodies & T4 in the normal range. Not going on beta blockers for the moment. Awaiting appointment with endo but don't feel it's urgent now. Have more bloods end of Oct just to make sure I'm not going back hypo.

    Thanks for all the support and encouragement I got here during the last horrible few months. Hope everyone is feeling well.


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Yeah, hope things work out for you Wyldwood. My GP decided to continue me on 125mcg, even though the TSH rose to above 6. He reckons there's gonna be fluctuations, and that a higher dosage may tip me over into hyper territory. I have noticed my weight has gone up a little bit, and that I feel a little more tired in the afternoon than before, but I still feel generally well. Weight gain may have something to do with re-locating to London, where convenience food is everywhere and exercise has been severely limited due to a bad ankle sprain nearly 3 weeks ago, which thankfully has just about healed now. Keeping up yoga anyway, I always feel good after a session, easily done at home in my own time. Sleeping is really good too, which is an important indicator to me for my well being.


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    That's great news, by the sounds of it your new GP knows what she's doing. Just keep an eye on things so don't slip back into hypo. I had to do the same, come off meds altogether and then very slowly build up again as seemed to have developed some sort of sensitivity towards it, so if you feel anything strange when eventually going back on the meds, keep this in mind, just in case it happens to you, too! Good luck!


  • Registered Users Posts: 75 ✭✭happydays5


    Hi all,

    call me very flippiant or similar but heres my story and i would really love your advice/help as u all seem to know your stuff when it comes to underactive thyroid....

    i was diagnosed probably about 6 years ago with an underactive thyroid (actually what my doc told me was my thyroid gland was completely defunct) i was put on eltroxin and had bloods done again a couple of months later and my eltroxin was increased to 125mg which is what im still on. over the years i have had bloods done a couple of times but my GP makes no real issue of the thyroid problem - although i regularly tell her i feel so exhausted/tired/down/stressed/extreme weight gain/hair loss/feeling cold alot etc. also when my bloods come back and i call the receptionist for results she tells me all is fine - i have no idea what T3 or T4 is about or TSH - i have never been told any number in relation to my condition (like my husband when he has his cholestorel test done is told it 3.5)

    my iron levels are exceptionally low - could this be connected?

    what should i be asking my GP for the next time i have my bloods done? which i'm going to do soon as this thread had educated me and encouraged me to feel i'm not gone nuts and also should i be seeing an endocrinoligist?

    my GP was very quick to offer me anti depressants which i dont feel is the answer. In my opinion my GP doesnt think its a condition that needs much attention at all or at least thats the impression i'm getting from him.

    also last time i had my bloods done i had actually not taken my eltroxin for the previous 6 weeks or so (as i didnt really realise how important they are until i read this thread) but when i called the secretary for my results she still just said all was fine but is that possible as i hadnt been taking my medication for at least 6 weeks previous?????

    i live in the midlands and would really really aprecciate any advice u can give me at all as i really need to begin to feel normal again.

    i have 3 young children and need to get back on top of things again.

    i cant wait to hear from you all

    thanks


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  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    Hello happydays5
    you need to get copies of your blood results from your GP. Ask for back copies of them so you can see what way your results have been going.
    With regard to your thyroid you need to see what your TSH (thyroid stimulating hormone) numbers are, normal range depends on the lab your bloods are sent to but usually 0.4 - 4.0. Free T4, which is the measure of the available hormone in your bloodstream, is usually 12 - 22.
    Thyroid sufferers tend to be treated as hypochondriacs by many GPs, if your blood results show that you are hypo, maybe you need to find a new doctor who will work with you.
    If you hadn't taken your Eltroxin for 6 weeks and your bloods were ok I would be very surprised if you are hypo. Maybe your low iron levels are contributing. You need to talk to your GP and explain all this to him.


  • Registered Users, Registered Users 2 Posts: 561 ✭✭✭dollydishmop


    ^^^ Couldn't say it any better than that^^^ ;)


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Happydays, I would find a new GP and I would buy a book on thyroid conditions. But as a crash course - The thyroid gland produces a number of hormones, the main function of which is to regulate the energy household of your body (so hence, no energy = tired, cold, weight gain, brain fog, etc). The body does this by monitoring the amount of circulating hormones in your blood, if it gets low, the pituitary gland in your brain releases a hormone (TSH) that then tells the thyroid gland to get going and produce more hormones. These are mainly T4 (it's the "storage hormone") and T3 (the active form, it's T4 minus one iodine molecule), and very little amounts of T2 and T1 (the exact role of which are still not fully understood).
    So, if your thyroid is defunct (either due to low iodine, or due to autoimmune disease or something else), it cannot produce enough (or any!)) T4 and T3, so hence, your pituitary spits out TSH like mad, in an effort to get the thyroid to produce hormones. So therefore, when your TSH test comes back high, but your thyroid hormones are low, it shows that your gland isn't working. But in terms of how bad things are, you need to look at the concentration of the circulating hormones, T4 and T3. There are two forms in which they are tested, either total T4 and total T3 or Free T4 and Free T3. The latter is more useful, as it tells you how much "available" hormone there is in your blood (the "total" also takes into account hormone still bound to proteins). The majority of doctors will only test T4 (sometimes free sometimes total) and judge your condition by that value, but T3 (as it is the active form) is actually the more important one, so you should ask for a free T3 test.
    Quite often, these tests all come back within the normal range, but one still feels unwell, and there is about a million reasons why that can be, so it would be to difficult to go into all of this here, but low iron is definitely a player in this game, so you need to get your iron levels up.
    As Wyldwood has said, many GPs seem to think (and have told me so!) that thyroid is very easy to treat so if someone like us comes along with complaints we're being labelled as stressed, depressed or hypochondriac.
    Not taking your thyroid meds for 6 weeks is not a very good idea, as these are supposed to remain at a certain level in the blood and T4 gets converted into T3 on demand. Many people I have met/come across swear by taking it very early in the morning and always at the same time. There is some research that shows you get better results taking it at night (that goes for Eltroxin or other T4 only preparations).

    In any case, I would try and find a new GP or an endocrinologist (but some of them are just as ignorant as GPs when it comes to thyroid, so tell us where you are and maybe someone can recommend one. I'm in Dublin, so unfortunately don't know about docs in the midlands.
    There are also different types of treatment, the standard one in Ireland is Eltroxin (T4 only preparation). But there is also a T3 only product, and there are also natural pig gland derived products (these have T4, T3, T2 and T1 in them) - these are very hard to get prescribed, as they are not licensed and most GPs have never even heard of them. But there are some docs here that do prescribe them, so if that's a route you may consider at some stage there are several people on this forum that can advise on where to go to get them.
    What you need to do is get tested for: TSH, FreeT4, FreeT3, TPO (antibodies to see if you're condition is autoimmune), Iron, Vit B12, Folate, Vit D. You also need a kidney function test, a liver function test, blood glucose, and lipids - all of these can go haywire when the thyroid is not working properly. Also good to get your cortisol tested (8AM if possible) - this is to see if your adrenals are working ok.
    When you have all of these you'll be in a better position to decide on your next step.


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    That's an excellent post cltt97


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Yes, excellent post there cltt97. So, if anyone new arrives to this blog and wants to inform themselves about the thyroid function, could you please read the entries on the blogs first, and then ask your questions, as many of the answers you may be looking for are already there.

    I've just noticed in the last few days I'm getting a twitching sensation on my forehead, usually lasts for about 20 seconds, then goes, and I get it maybe 5 times a day. Its unnerving when it happens. I googled it, seems like there's a link between this and drinking coffee. Now, I usually enjoy only one cup of coffee a day, and its always decaf, so I'm a little bit perplexed, is this another little everyday common treat I'm gonna have to give up? I'll be living like a mormon in no time. Anyone else have this before?

    Also, had a little setback with swimming, got an ear infection, which results from swimming a lot and air travel (which I've done a lot lately and noticed my ears aching a lot when descending to land). Now my weight is starting to go higher again. I can't really do much land exercise as I went over on my ankle 3 weeks ago, so I have to be careful with that.


  • Registered Users, Registered Users 2 Posts: 561 ✭✭✭dollydishmop


    I've just noticed in the last few days I'm getting a twitching sensation on my forehead, usually lasts for about 20 seconds, then goes, and I get it maybe 5 times a day. Its unnerving when it happens. I googled it, seems like there's a link between this and drinking coffee. Now, I usually enjoy only one cup of coffee a day, and its always decaf, so I'm a little bit perplexed, is this another little everyday common treat I'm gonna have to give up? I'll be living like a mormon in no time. Anyone else have this before?

    I'd assume the reference to coffee is in regards to caffeine...so the fact that your one cup of heaven per day is de-caff, I'd say your continued coffee consumption is grand. Is there anything else you may have that is caffeinated, eg tea or coke etc.?
    (And, not that its any of my business, but if its decaff and you enjoy drinking coffee- why do you limit yourself to just one a day?)

    However, I do very occasionally get similar twitches, and find its usually (for me anyway) due to lack of sleep or just being over-tired.

    Here's hoping you just need a little more shut-eye and that its not something more sinister.


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  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    I sometimes get this very central concentrated tightness in the center of my forehead and it feels like a magnet is pulling, and for me it's also due to lack of rest and more so, dehydration - if I don't drink enough (and I never feel thirsty, so it's a real chore) I end up getting this. Never had this before my thyroid saga began... also experiences some weird twitchy waves inside my brain when I went hyper about two years ago, thankfully haven't had that again since, that was truly awful.


  • Registered Users Posts: 75 ✭✭happydays5


    hi cltt97 and wyldwood
    thank you so much for your brilliant advice - cltt97 i hope you didnt find it too cumbersome posting that very detailed reply to me, but boy do you know your stuff. i really do appriciate it and am going to ask my doctor for my past results as i have had bloods done 3/4 times in past 6 years so would be interesting now i know what i should be looking for to see what they say. i am now taking my head out of the sand with regard to this problem! I just hadnt time to as the children were so young and there was no time for me!
    thank you both again so much and i will keep you posted


  • Subscribers Posts: 693 ✭✭✭FlipperThePriest


    Is it common with Hashimoto's to feel what I can only describe as a sudden blood sugar drop? I feel this regularly, I wouldn't call it fatigue, just total energy abandonment, the inability to carry out whatever you were concentrating on at the time and the urge for sugars, even though this doesn't always help. I even bought a blood sugar monitor to test this and when I do hit the slump and test myself my blood sugar is actually normal. Before I started on eltroxin my tsh was at 25, after a few months of 100mg it's at 5.4, so the endocrinologist during the week told me to take 200mg one day a week and 100mg the rest. I've only started with this adjustment... will a step down from 5.4 to say 3 or 4 make the big difference, because I haven't noticed much change yet. I plan to request a lot of the tests cltt97 mentions, have always thought maybe it was Iron deficiency or something.


  • Registered Users Posts: 12 mama3


    Wow!! Cltt97 you are a mind full of information on this subject and I only wish I had found this thread before now but hopefully someone here will be able to help me..

    I was diagnoised with underactive thyroid when I was 12 years old which is 31 years ago now and have been on various levels of Eltroxin for the past 31 years but tbh in the last year or so the side effects of the Eltroxin have become more troublesome than the hyprothyroidism so asked my GP about Armour after doing some research on the internet but he had never heard of it, he did look it up but said he was unable to prescribe it to me, and that was the end of that. I have since moved GP's for other reasons and the new GP also said he couldn't prescribe Armour. I have got to a point now that I only take the Eltroxin for a week or so every 6-7 weeks when I become so fuzzy and slow I have to iykwim. I would really really be grateful if someone could tell me of a Doctor/Endo in Dublin that will prescribe Armour or even consider it - Thank you.

    This is a great thread :)


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Zippy - I get that, too, this total energy zap - but for me this only happens with certain foods and I have to be careful what I eat - especially at lunch time. If I eat the wrong thing or give in to chocolate temptations afterwards, I'm doomed for about 2 hours. I find carbs are very bad and I do much better with proteins. I've also been on a gluten free diet for ages, although honestly I haven't noticed all that much difference, but since there seems a well evidenced link between Hashimoto's and coeliac disease I decided to come off it anyway. The TSH levels don't really tell you all that much, only how well your galnd is (still) working, better to look at your FT4 levels (or even better FT3, but these are hardly ever included in routine testing and you have to specifically ask, and even then might not get!)

    Mama3 - may I ask what type of side effects you are experiencing (I've been there myself, so asking out of curiosity and also to increase the pool of information). The thing is, you're not doing yourself any favours only taking it every 6 weeks or so, as it can have a serious knock-on effect on a lot of other functions. I came off Eltroxin altogether for a lengthy period and although I felt reasonably ok energy-wise, I could really see the effect on other things, like triglycerides, kidney function (you do not want to mess with your kidneys!!!), cholesterol, etc, etc.
    The thing with Armour, etc is, that it is not licensed here, but if a doctor decided that you need this medication they CAN prescribe it for you, on a named basis (i.e. the pharmacy can only get it for you specifically and only dispense it to you). My GP had never heard of it and didn't want to know and I think no GP would go anywhere near unlicensed medicine without the instruction of a consultant.


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  • Subscribers Posts: 693 ✭✭✭FlipperThePriest


    cltt97 wrote: »
    Zippy - I get that, too, this total energy zap - but for me this only happens with certain foods and I have to be careful what I eat - especially at lunch time. If I eat the wrong thing or give in to chocolate temptations afterwards, I'm doomed for about 2 hours. I find carbs are very bad and I do much better with proteins. I've also been on a gluten free diet for ages, although honestly I haven't noticed all that much difference, but since there seems a well evidenced link between Hashimoto's and coeliac disease I decided to come off it anyway. The TSH levels don't really tell you all that much, only how well your galnd is (still) working, better to look at your FT4 levels (or even better FT3, but these are hardly ever included in routine testing and you have to specifically ask, and even then might not get!)

    Makes sense.. because the day I posted, I only realised a few hours later - I had soy sauce (about a table spoon) in a stir fry the night before. Probably wouldn't help at all. I've asked the gp a few times do I need to look out for anything in my diet and he said - if there was something you needed to look out for they would be obliged to mention it in the medication leaflet... obviously not. I've since had my blood tested for iron, b12, folate, vitamin d, and cortisol and am awaiting the results. I'm also going to do a dietary experiment over the next few weeks to see how I get on - cutting out things like dairy, soya, alcohol unnatural sugars. I don't think I could cope without bread. Dairy's going to be pretty tough, not to mention alcohol. My GP reckons I'm spending to much time "looking at these things on the internet" to which my response was "I wouldn't be looking only I'm feeling so crap?" he pretty much said "point taken".


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Maybe try and keep a food diary, write down everything you eat and note down if you feel good or bad, after a while you will be able to see what has an effect. And re bread, just try and avoid white bread, try go for wholemeal breads, rye breads, breads with seeds, or basically something that is not just empty calories. The prepacked sliced white breads are really just nothing but glue without any nutrients.
    Dairy is really hard if you go full throttle, because so many things have dairy as a hidden ingredient, like dried milk powder, etc... so always read the label!


  • Subscribers Posts: 693 ✭✭✭FlipperThePriest


    Thanks for the tips! No I never eat white bread... food of demons!! I probably won't go super strict with the dairy, I'm just interested to cut a lot of it out for a few weeks to see if there's a difference as I eat so much of it - I'll be using lactose free milk with cereals, cutting out cheese, changing to oil based spreads, no yogurt or cream, things like that.


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Just like to share a few things.......I've been feeling really well lately, and I think it has something to do with eating spelt bread. Spelt is related to wheat, infact in roman times, all their bread was made from spelt. However, somewhere between then and now, wheat became dominant, and harvesting wheat became dominant, maybe through the mechanisation of farm machinery in the USA.

    So, anyways, you might find spelt bread in your local health food store, but don't buy it there since it won't be fresh and it will be expensive. Try your local supermarket or bakery, or even better still, your local market. Spelt and honey bread is my favourite. It fills you in, no burping afterwards, and is high in fibre. So, check it out. I've noticed I'm not hungry at all in the evenings, and this is really a blessing I've been looking for for a long time. I no longer view eating nice food as comforting. Maybe it has something to do with practicing yoga a lot too, but I feel really well in body mind and soul. Considering I was such a mess 2 years ago, there is hope for everyone.


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    Great news that you are feeling so well LimerickBishop. Long may it last.
    I have to say I'm feeling quite well also since I came off the Eltroxin. I'm sure I'll have to go back on it again in the future but I'll certainly monitor myself much more closely.


  • Registered Users, Registered Users 2 Posts: 1,275 ✭✭✭RubyGirl


    I was diagnosed with an under active thyroid recently. I want to go on the pill but I heard there is a problem with taking the pill and eltroxin. Is there anyone that is in the same predicament as I am?
    Can I take the pill and eltroxin together???? I mainly want to go on it to see will it help with my skin breaking out?

    Also anybody taking iodine? Has it helped?


  • Registered Users Posts: 12 mama3


    Hi Cltt, Sorry for not replying sooner, I understand what you are saying about going on and off the eltroxin but untill I find a doctor that can come up with a soloution am not to sure what else to do.

    Without the eltroxin I suffer with
    the constant feeling cold,
    foggy head
    dry skin
    crazy tiredness....

    however when I take the Eltroxin I get rid of most of them but gain
    diahorrea,
    stomach cramps,
    muscle cramps in legs,
    pin & needles in hands (or as ds3 calls it fizzy fingers)
    headaches that feel like someone is trying to push my eyeballs out. !!
    and blurry vision.

    So as you see the side effects are now as bad if not worse than the original symptoms, when I am taking the Eltroxin for a while and all the above side effects disappeared but the cronic tiredness and foggyiness take over so I go back on them untill I can't stand the side effects. Its a catch 22 situation, I have been tested for lots of other things, ceoliac, diabeties, cronins, ibs, and all come back clear.... so the only reason for the cramps and diahorrea is the eltroxin... I have actually gone for a whole day without eating if I am going out because if I even have a cuppa tea it runs through me. I know that there are a lot worse things in life but it does impact on your everyday life - tis a pain in the rear (pardon the pun Lol)

    I am also overweight, sometimes I wonder how as I eat very little, tbh the weight doesn't bother me at all I have always been heavy and happy with it, but have started a food diary since reading this thread and have noticed that the twice I have eaten beef I felt yucky in general the next day so going to continue to keep the diary and see what it shows up. Thank you for that suggestion. And a suggestion for anyone else thinking of keeping a food diary its easy to do on the diary mobile app for iphone/smart phones.

    hope your all feeling well.


  • Registered Users Posts: 12 mama3


    Hi Rubygirl as I said before I am on eltroxin a long time and was on two different pills at different stages in my life, before kids I was on minulet (I think that was what it was called) and inbetween kids I was on celest both times I would have been on substantial doses of Eltroxin (up to 400mg per day) and took the pill with no problems or complications. Hope that helps.


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Hi ladies,

    To Rubygirl: I have no idea about the pill to be honest, but I have never really heard anything about not taking it, but I suppose that's a question for an endocrinologist... Re the iodine, it depends on whether you have Hashimoto's or whether your underactivity is due to iodine deficiency. If it is the latter, it would help, but if it's the autoimmune form it is generally not recommended, as it can aggravate the inflammatory process. This is due to an increase in activity of TPO (it's an enzyme in the thyroid gland) - and in Hashimoto's the body forms antibodies against TPO, so the more of TPO, the more antibodies and more inflammatory process. If your underactivity is not due to an autoimmune process, then it can be helpful, however, you need to be very careful with the dose, as you can end up making the situation worse. This is called WOLFF-CHAIKOFF'S EFFECT (The thyroid gland has a capacity to reduce thyroid hormone production in the presence of excess iodine by reducing the organification of the iodine. This Wolff-Chaikoff effect is observed after 48 hours and protects the organism from excessive synthesis of the thyroid hormones). So things like Kelp can actually be quite dangerous as the concentration can be highly variable and in some cases dangerously high.

    To mama3: 400mcg Eltroxin seems a crazy high dose, normally people take somewhere around 120 mcg. So if you needed that high a dose it would suggest that maybe your body doesn't convert the T4 into T3 sufficiently and you may even produce a lot of reverse T3 (which doesn't work), so you end up with all the T4 pooling in your body and not being able to make any use of it. Many sufferers have reported that this makes them quite ill, so in your case it would be vital to get free T3 levels tested. It might also be way better for you to even try a T3 product only. Again, very hard to find someone willing to prescribe T3 products.
    I had problems with Eltroxin myself, my side effects were more of the brain shockwave variety and racing pulse and heart and a general feeling of being close to collapsing. The headaches I know very well, too. To me it always felt like there was too much pressure in my head.... Very unpleasant indeed. I came off Eltroxin altogether for several months and then switched to Erfa Thyroid (similar to Armour) but also found that I had serious troubles tolerating it. So I started at minute doses and increased very slowly and at very tiny amounts until I got somewhere into the normal range. I think once you've gotten sensitive to the hormone it's very hard to get the body to tolerate it (again). However, this is total speculation on my part and by no means scientifically substantiated. I also did an adrenal saliva test which showed that my cortisol rhythm was a bit all over the place so I started taking very small doses of Hydrocortisone, because if the adrenal glands are worn out, and cortisol production is low the body can't cope with the thyroid hormones. All very complicated really...
    So, if I was you, I would get myself an adrenal saliva test, see what comes out there, if it indicates a problem, I would go for an ACTH stim test (to check if your adrenals are actually working ok), I would get my FT3 tested and also Cortisol (in the blood), get a renal profile to make sure your electrolytes are in the normal range, Ferritin, B12 and Vit D and I would consider trying a T3 product only. For all of the above you need an endocrinologist (apart from the saliva test - that you can order from the UK and do it yourself). Armour or Erfa work quite well for some people, as it has a bit of T3 in it, but if you have a conversion problem it will again not solve the problem. So you need a bit of investigative testing to see what the root of the problems you're describing is.


  • Registered Users Posts: 12 mama3


    To mama3: 400mcg Eltroxin seems a crazy high dose, normally people take somewhere around 120 mcg. So if you needed that high a dose it would suggest that maybe your body doesn't convert the T4 into T3 sufficiently and you may even produce a lot of reverse T3 (which doesn't work), so you end up with all the T4 pooling in your body and not being able to make any use of it. Many sufferers have reported that this makes them quite ill, so in your case it would be vital to get free T3 levels tested. It might also be way better for you to even try a T3 product only. Again, very hard to find someone willing to prescribe T3 products.

    Omg Cltt, that all sounds very possible tbh, I started on 50mg at the age of 12 and gradually was increased in line with blood results over the years and by the time I was in my late twenties was on about 200mg daily however having babies seemed to interfere with thing (lol) and went up to 300mg on the first two and 400mg on ds3, the last endo I saw said it was the second highest dose he had encountered personally but agreed that it was what I should be on, he also believed that my cramp/diaorrah problems were caused by something else, hence the tests for all other ailments, and he passed me onto a stomach/digestive specialist (she was lovely but found nothing) and she recommended me going back to endo..... at this point I am totally disillusioned by all the medical brigade and really wish I could find one that would actually LISTEN to me and maybe try something different... Actually my old GP was good but hard to get to see, but might give him another shot and talk to him about T3 only products.
    Also do get the heart racing thing but its only now and again so can cope with it, although it can be quite frightening at times. Thank you so much for taking the time to reply to me


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  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    yes, all sounds like a bit of too much hormones! When I went a bit hyper, I got the whole diarrhoea thing as well, coupled with non stop hunger! Well, if you have no joy with your GP PM me and I send you the details of my endo. xxx


  • Registered Users, Registered Users 2 Posts: 1,162 ✭✭✭Wyldwood


    mama3, have you got hold of your historic TSH, Free T4 results? Are you sure that you're not over-medicated? I have just come down from almost a year of over-medication and had diarrhoea, racing heart and palpitations among other symptoms (not a nice experience). 400mg of Eltroxin is an extraordinary dose, as cltt97 says, half that would usually be top of normal dosage.

    oops posted while cltt97 was posting so duplicate message!!


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Can never have enough personal histories here :-)


  • Registered Users Posts: 12 mama3


    Haven't been on 400mg daily since last year as came off all Eltroxin after yucky feeling christmas last year and have been on and off 100mg daily since and I do know how silly I am being self medicating but suppose I just gave up ifykwim.

    This thread has spurred me into action though and am going to try again as am fed up being either "Foggy tired" or "crampy/toilet bound" which seem to be my options, would like to just find a happy balance... have no idea why my thyroid started playing up in the past few years as it was stable for a long time prior to that. , maybe it was turning 40 and the body/hormone changes that brings in itself.

    Am going to go back to my own gp armed with a bit more information and tbh he really is a very good GP but as is often the way, by being so good it also means he is very buzy so not easy to get to see and I hate taking up his time on ramblings, he did look into Armour when I asked about it but just said that he wouldn't be able to prescribe it as it wasn't available in Ireland. Am going to ask him to do the bloods you mentioned and also discuss T3 only meds, think he will want to send me to another Endo *sigh*.

    cltt might take you up on that pm, thank you.


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    Hi mama3, sounds like a good plan. I wonder have you ever tried just taking say 25 mcg every day for a while? I'm thinking if you take it on and off and occasionally "whack" the system with 100 mcg I can only imagine that the body goes into shock. And I think what happened to you was that you did go hyper, and from my own experience and also Wyldwoods, the only way to go then is to come off it altogether and VERY slowly start up on it again. It's like starting up a car, you need very little gas, you don't go full throttle, but steadily increase till the motor is running smoothly. the thyroid hormones are the same, very powerful and the body needs to adjust to it slowly (after having been deprived). Re the armour and erfa, it is not licensed here, but a doctor can prescribe it if he feels you need it. The pharmacy can then order it in. That's what I do, I have to order it in when I need it - Boots have done it for me and one of the Clery's pharmacies, too. No bother at all. Armour is cheaper than Erfa, but I find Erfa much better (different fillers).


  • Registered Users Posts: 12 mama3


    God am kicking myself here, of course I am probably going to full strength to fast, why didn't I think of that, tbh because I was on 400mg for a long time 100mg is like a small dose in my mind iykwim. Thanks again this thread is just fantastic, as you all speak english and not in numbers and letters, have been on one or two dedicated thyroid sites but they just get so bogged down in science that I get lost and tend to give up trying to make sense of all the rates, afaik for years the levels that I was monitored on were T4, TSH and free T4, don't think that my T3 levels played a big part. Also going to try and get a copy of my blood over the past few years and see if there is any pattern to them.
    Lol I am a bit of a "Monica" so love doing spreadsheets and lists, will be happy to chart my bloods history!!! :rolleyes:


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    yeah I've been on a few "thyroid" forums as well, but they are too hardcore there for my liking, you leave them more worried than you were going on in the first place! And I found that a lot of people think because something works for them it MUST work for you. If I've learnt one thing with this thyroid malarkey is that everyone is completely different, reacts very differently and what works wonders for one half kills the next. It's a totally personal ride, we can just help each other by sharing experiences and knowledge.


  • Registered Users, Registered Users 2 Posts: 737 ✭✭✭cltt97


    To bored.com - your post got lost somewhere, but in response - the main symptoms of underactive thyroid are usually (singly or in combination)
    - feeling cold
    - feeling tired to extreme fatigue
    - brain fog, bad memory, bad concentration
    - loss of hair (sometimes outer eyebrows)
    - slow digestion/bloatedness
    - joint aches - quite often carpal tunnel syndrome or tendonitis in the feet
    - irritability/getting stressed easily
    - insomnia
    - gaining weight
    - and others, but the above appear to be the most common

    Not all of these always occur and are very different for everyone. I for example never got brainfog or never felt very cold (which appear to be the most common). The whole weight gain thing is also I think if you get diagnosed quite late and at that stage your metabolism has slowed down big time and then it's hard to lose it and often people will find they finally have stopped putting on weight, but hardly ever lose any just by taking the meds. One of my friends got diagnosed very early and never had any weigh issues, I on the other hand had already put on about a stone and a half at the time I got diagnosed. Also, uncommon but not unusual is that people with overactive thyroids put on weight, when the opposite is expected. So with hormones, nothing is every predictable. Do you know if you have an underlying autoimmune illness that causes the underactive thyroid? It also depends on how "dead" your gland already is, if it is still functioning reasonably well, then it can still even out the "dry spells" (from not taking the hormones) but that might aggravate the autoimmune reaction, so try and stick to taking them regularly - first thing in the morning or last thing at night, it's a bit like playing roulette with the body when following an on/off medication regime. When did you have your last thyroid function test, and do you have your readings?


  • Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    can anyone tell me if they suffer really bad mood swings mine really scare me (phyco)but only when my tsh is high my levels swing up and down really quickly..last few 6.4 to 58.2 in 3 months then 0.5 now 9.8 in 6wks..i have been on 50m eltroxin then 150m now 50m..which will have to be increased 2morrow..i have been like this for 3 yrs now up and down..only once in three yrs was it 2.3 and its the only time i felt well..not for long..cant seem to get my levels close 2 normal..my joints ache really bad legs back arms fingers..headaches ..freezing..fuzzy brain..tiredness is unreal i drag myself through most days..hair falling out again..you name it ive had it or have it..i put reminders in my ph for everything..not much joy left in me dont laugh as much as i used 2 nothing excites me..seem as if my life is just a chore..i could scream right now i get so angery and its not the old me..and i dont like this new me..sorry but 2day is a really bad day...if someone could say try this it worked for me..


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  • Registered Users Posts: 80 ✭✭LimerickBishop


    bridgy67,

    Look at your diet. I noticed a huge difference in my feelings when I starting eating more fish. Eat fish 4 times a week. I really love fish so it was easy for me to choose to eat more. Cut back on red meat. Don't eat fried food. Cut back on caffeine, take herbal teas and green teas instead. All I can say is that it worked for me.


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