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Under Active Thyroid

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  • #62
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    goodgodholmes wrote: »
    Hey guys, quick question -

    I suffer from congenital hypothyroidism (the kind you're born with, no thyroid function at all). At 22 years of age, my current dose is 125 mg/day. When I was a kid I used to have my bloods tested every 3-6 months, whereas now it's every 2 years.

    I've only ever taken Eltroxin, however I have pretty much been unable to control my weight my whole life. I have a relatively normal diet and am moderately active - however, no matter what, my BMI consistently remains around the 29 mark. I have been very active in the past and been very conscious of my diet and calorie intake, but my weight always remains around the same. The only time I ever lost a significant amount of weight was when, sick of being overweight, I went on a relatively extreme diet - walking miles a day and trying to eat under 1000 calories a day for about a year. Even still, despite the fact I was barely eating and exercising a lot over a pretty long period of time, the lowest my BMI ever hit was 24.5. As I'm sure you can imagine, the weight crept back on relatively quickly.

    Throughout my whole life, no doctor has ever mentioned T3 or any other hypothyroidism treatments. I only have my bi-annual blood tests and am consistently recommended my 125mcg Eltroxin dose.

    In my memory, I have never been to an endocrinologist (probably when I was a baby, and I often visited Temple Street as an outpatient as a child so it may have been an endocrinologist then), but it's been my GP since I was about 14 and never anything other than Eltroxin.

    Do you think it's worth going to see the endocrinologist? I'm worried the doctors are going to fob me off as I've never really complained about Eltroxin before, as it's all I've ever known. I never knew there were alternatives as Eltroxin has just been a part of my life since the day I was born, and I never questioned it.

    From the perspective of you guys who developed hypothyroidism later in life (and thus, probably had the good sense to read up on your options as opposed to just accept what the doctors told you as the only option for 22 years!), do you think I might need a combination of T3 and T4?

    Did any of you find it difficult to get referred to an endocrinologist on the basis that hypothyroidism isn't that "serious"? Did you ever find you got fobbed off because Eltroxin is what everyone is prescribed?

    I'm only really starting to find out about other options now so any thoughts would be greatly appreciated :)
    If you're interested in trying T3, it might be worth researching which doctors sometimes consider it and which never do. Not sure if there are any thyroid groups in Ireland but the UK ones might be able to help. However, when I was a member of the British Thyroid Foundation around 10 years ago, they weren't into T3. Other groups, such as Thyroid UK, were partly set up because they found the British Thyroid Foundation so conservative.

    The big risk with experimenting with thyroid medication is cardiovascular problems I think e.g. arrhythmia which might then cause a stroke. When I tried them, I felt as a young adult, I should be less likely to get them than an older person. Don't know if there's any evidence for that view though! I also don't drink caffeinated drinks, smoke or take stimulant drugs so thought that would decrease the chances my heart rhythm might become irregular.


  • #63
    goodgodholmes
    Closed Accounts Posts: 237 ✭✭goodgodholmes


    kangaroo wrote: »
    If you're interested in trying T3, it might be worth researching which doctors sometimes consider it and which never do. Not sure if there are any thyroid groups in Ireland but the UK ones might be able to help. However, when I was a member of the British Thyroid Foundation around 10 years ago, they weren't into T3. Other groups, such as Thyroid UK, were partly set up because they found the British Thyroid Foundation so conservative.

    The big risk with experimenting with thyroid medication is cardiovascular problems I think e.g. arrhythmia which might then cause a stroke. When I tried them, I felt as a young adult, I should be less likely to get them than an older person. Don't know if there's any evidence for that view though! I also don't drink caffeinated drinks, smoke or take stimulant drugs so thought that would decrease the chances my heart rhythm might become irregular.

    So I'm guessing that T3 carries a lot more risks than T4... have you used many different medications?


  • #64
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    goodgodholmes wrote: »
    So I'm guessing that T3 carries a lot more risks than T4.
    Well, some doctors would be cautious with regard to trying T4 for similar reasons on people who didn't have definite hypothyroidism.

    However, I think it's true to say that T3 has more risks, as it's the active form. Also, I didn't find a place to compound it in Ireland which would make it a bit more risky.
    goodgodholmes wrote: »
    have you used many different medications?
    I don't have definite hypothyroidism. My problem is severe ME and I have a borderline high TSH (5ish for a number of years), along with a lot of hypothyroid-like symptoms (but they tend to be seen in M.E.). I've tried quite a lot of medications, but not so many with regard to thyroid problems. But I did try T3 only, T4 only and various combinations of T3+T4 to see if anything might do the trick. Unfortunately, nothing really make a huge difference. Anyway, my case would be quite different to yours - mine isn't congenital, etc.


  • #65
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Diagnosed hypothyroid start of December.
    Tsh 4.8, t3 and t4 within range, antibodies >1,000

    Doc says I'm not being treated until tsh >11

    All was good until 3 weeks ago, had been doing exercise and feeling energetic...
    Now, feels as if I can barely make it through the day...
    Exhausted, depressed, concentrating for any length gives me a headache
    Even too up drinking coffee, although it's stopped giving me any energy

    Wondering if I should go back and get tested again? Seriously broke from tests before though, can't afford to be told no again...
    But want to be happy again...


  • #66
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    goodgodholmes wrote: »

    From the perspective of you guys who developed hypothyroidism later in life (and thus, probably had the good sense to read up on your options as opposed to just accept what the doctors told you as the only option for 22 years!), do you think I might need a combination of T3 and T4?

    Did any of you find it difficult to get referred to an endocrinologist on the basis that hypothyroidism isn't that "serious"? Did you ever find you got fobbed off because Eltroxin is what everyone is prescribed?

    I'm only really starting to find out about other options now so any thoughts would be greatly appreciated :)

    Hi there,

    I would recommend you read the thread on thyroid misery, which discusses, describes and recommends all alternatives to Eltroxin, the difficulty of getting a good diagnosis and finding Endos who are a bit more willing to prescribe alternatives.
    It's difficult to say if you would benefit from T4/T3 - everyone is different. I'm talking Erfa dessicated thyroid, which contains T4/T3/T2 and T1. A lot of people report they feel better on this. Besides the weight, do you have any other thyroid related complaints?


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  • #67
    El.duderino
    Registered Users Posts: 388 ✭✭El.duderino


    FYI

    Eltroxin was costing me €14 a month. 100+50mg packs to make up doses.

    Got 2 years worth for €42! Proper brand Merck. They make single 150 and 125 tablets too. If you can get somebody to pick up your prescription in Spain/Europe its really worth it.


  • #68
    El.duderino
    Registered Users Posts: 388 ✭✭El.duderino


    i-feel-good.png


  • #69
    hadepsx
    Registered Users Posts: 1,503 ✭✭✭hadepsx


    would a bad tyroid cause injuries to take ages to heal????


  • #70
    goodgodholmes
    Closed Accounts Posts: 237 ✭✭goodgodholmes


    cltt97 wrote: »
    Hi there,

    I would recommend you read the thread on thyroid misery, which discusses, describes and recommends all alternatives to Eltroxin, the difficulty of getting a good diagnosis and finding Endos who are a bit more willing to prescribe alternatives.
    It's difficult to say if you would benefit from T4/T3 - everyone is different. I'm talking Erfa dessicated thyroid, which contains T4/T3/T2 and T1. A lot of people report they feel better on this. Besides the weight, do you have any other thyroid related complaints?

    Thanks! Will have a look at that. I don't think I have many other problems in excess based on the apparent symptoms - I do get tired quite a lot, but as I've been hypothyroid since I was born it's hard to tell whether that's to do with the hypothyroidism or not. I also tend to feel either warm or cold temperatures in the extreme, getting very cold in winter, but again, because I've always been like that it's hard to tell if that's what it's down to or if I'm just a bigger wimp than my friends!


  • #71
    redmal09
    Closed Accounts Posts: 5 ✭redmal09


    Hi Guys,

    I have recently been diagnosed with an underactive thyroid, about 3 weeks ago now!! My doctor told me my tsh was 21 and started me on 150mcg eltroxin for the next 3 months!! Looking forward to feeling the effects of this, so hopefully in the next few weeks tiredness etc wont be as bad!!

    What i wanted to know was when i go for my repeat bloods, where the thyroid panel is marked, does this automatically mean I will be tested for t3 and t4 or do i have to specifically ask the doctor to test me for this? I want to be armed with as much information as possible regarding this as going on other posts people seem to have had problems with docs in relation to how they were feeling etc, im hoping im not too bad with the doctor i have because he actually said in not so many words he was glad that we have found out what was wrong and did spend some time discussing the details of this with me, however if i ever have to go to another doctor i dont want to look like some kind of mad woman complaining and sounding like a hypocondriac....:)

    Thanks in advance!!


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  • #72
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    T3 is not standard. Usually a TFT (thyroid function test) means T4 and TSH. You need to write down FT3 and FT4 to make sure you get both free T3 and T4 tested. Make sure you get tested for antibodies as well (TPO) to see if your condition is auto-immune.


  • #73
    redmal09
    Closed Accounts Posts: 5 ✭redmal09


    Thanks for that...thank god for these forums!!! :)


  • #74
    Little_miss_syn
    Registered Users Posts: 26 ✭Little_miss_syn


    cltt97 wrote: »
    T3 is not standard. Usually a TFT (thyroid function test) means T4 and TSH. You need to write down FT3 and FT4 to make sure you get both free T3 and T4 tested. Make sure you get tested for antibodies as well (TPO) to see if your condition is auto-immune.

    Where can you get these tests? My gp doesn't do them and I can't afford an endo.


  • #75
    Wyldwood
    Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Usually a GP tests for TSH, FreeT4 and antibodies if autoimmune problems are suspected. Very few labs now routinely do FreeT3 tests even though it's very valuable information to know if you're converting the T4 to T3.

    An endo will probably run a lot more tests than a GP but you need to be referred and this is usually done on the basis of test results.

    You can order private tests but they can be expensive. Check out http://www.thyroiduk.org.uk/tuk/ for further info.

    If you aren't happy with your GP you could try another doctor.


  • #76
    Monetta31
    Registered Users Posts: 5 ✭Monetta31


    I do my full blood test including 20 point and Tsh and T4 on Abbey Medical Center , Dublin city center . Full blood test is 70 euro


  • #77
    lynnsback
    Registered Users Posts: 174 ✭✭lynnsback


    kangaroo wrote: »
    The big risk with experimenting with thyroid medication is cardiovascular problems I think e.g. arrhythmia which might then cause a stroke. When I tried them, I felt as a young adult, I should be less likely to get them than an older person. Don't know if there's any evidence for that view though! I also don't drink caffeinated drinks, smoke or take stimulant drugs so thought that would decrease the chances my heart rhythm might become irregular.

    The above is one of the big myths about T3 and is unfortunately one of the myths that even endos seem to fear. T3 is an endogenous hormone produced by the human body. The human body would not make it if it were so dangerous. T3 is only dangerous if given in doses too high or to a person who does not need it, thus making them hyperthyroid. It is however slightly more complicated to dose as a person needs to make sure they have good ferritin/iron levels and also enough cortisol to support its use.

    In fact synthetic T3 has been shown to benefit heart patients:
    http://www.researchgate.net/publication/5630937_Triiodothyronine_(T3)_effects_on_cardiovascular_system_in_patients_with_heart_failure


  • #78
    lynnsback
    Registered Users Posts: 174 ✭✭lynnsback


    goodgodholmes wrote: »
    So I'm guessing that T3 carries a lot more risks than T4... have you used many different medications?

    As mentioned, T3 does not carry inherent risks unless it is given to a euthyroid person. I compare it to insulin. At my last fasting blood test my glucose was 4.4 (80 for those using US units), so my glucose regulation system works a-okay. If I personally were given insulin by a doctor now I could very well die. However, if I were a Type 1 diabetic it would be dangerous to withhold insulin.

    Sucks that doctors don't seem to know any of this. In your shoes, I'd definitely be pushing to get further testing and combination therapy. My weight was a nightmare until I went on T3. I used to be 12.5 stone and had an eating disorder from it all. Now I am eating disorder free and am a normal BMI.

    There aren't many docs around who prescribe it, but feel free to pm me if you would like a few names.


  • #79
    fro9etb8j5qsl2
    Closed Accounts Posts: 2,391 ✭✭✭fro9etb8j5qsl2


    Hi all. In the last 10 years, my thyroxine dose has gone from 25mcg a day to 150mcg a day. I recently had a baby and went for full bloods 2 weeks ago to make sure all my levels are ok and it turns out my thyroid is slightly over. The doctor adjusted my dose down to 100mcg a day which I started doing on Saturday and I have felt wiped out since. It's the kind of tired feeling I get when I forget or am late taking a dose. I'm also mentally sluggish and have that tired scratchy feeling in my throat. Is this my body just adjusting to the new dose I wonder? Not due back for more bloods until January so I'm hoping this evens itself out in the meantime.


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