thyroxine does it work

i was put on thyroxine 4 years ago having suffered from fatigue for a very long time first 25g then 50g i get tested every year and tests come back ok. i feel well some weeks then feel ill fatigue very cold etc,etc i have been taking my temperature every morning it's usually 35.5 i feel frustrated would it be worh seeing a specialist ? or do i just have to put up with it? can anybody help? i am 65

thank you

38 Replies

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  • The GP may say your tests are o.k. but if you are not feeling well, and still have symptoms. NO you are not o.k.

    What you most probably need is an increase in your medication. Dr Toft ex of the British Thyroid Association says we need a TSH below 1 or suppressed.

    First of all, get a copy of your latest thyroid gland blood test results from your surgery. They must state the ranges (figures in brackets as it makes it easier to comment) and post on a new question You are entitled to them and get a copy each time you have a blood test for your own records. You can get better but unfortunately you have to learn more than your GP.

    If you haven't had recent blood test results get new ones, plus Vit B12, Vit D, iron, ferritin and folate and post these too.

    This is part of an answer to a question and the person is taking 50mcg:-

    Moreover, the dose he prescribed, 0.05 mg, is extremely small. It’s so extremely small that it's highly unlikely you'll benefit from it in any way no matter how long you take it. On the other hand, that small a dose may actually slow your metabolism more and worsen your symptoms. Perhaps this has happened, in that you say your symptoms have worsened since you started taking Synthroid.

    It’s tragic that millions of patients such as yourself suffer needlessly for years because their doctors prescribe extremely small doses of T4 products. I advise all patients such as you to persuade their doctors to prescribe a product that contains both T4 and T3, such as Armour or Thyrolar. I also advise them to see to it—one way or another—that they take a high enough dose for it to be effective. Otherwise, the patients are almost certain to continue suffering.

    There are other topics at the top of the page

    web.archive.org/web/2010122...

  • thank you for feed back i am going back to see DR will let you know what happens

  • I cannot agree more with shaws. Please, do not trust your GP. Your GP knows less than nothing. What your GP has been taught is, in some people's case, simply wrong. our medical establishment seem not yet to be sure why but some patients seem to absorb levothyroxin better than others. Some people absorb levothyroxin (synthetic T4 hormone) better with synthetic T3 (at least one clinical study suggests it is due to a gene variation). Vitamin C has also been shown (in a clinical study in Argentina) to improve absorption. In any event, shaws points about dose and reference ranges are no doubt the most pertinent in your case. You're on a very small dose. If you can afford it - try visiting someone like Dr Gordon Skinner.

  • thank you for your feed back its good to know i am not alone going back to DR will let you know how i get on

  • Hi Yes I agree too. First make sure of your results + ranges, then make sure you have had a free T3 test, some GP`s will do it or if you pay about £10 or there are slightly more expensive alternatives, through TUK.

    Jackie

  • yes i agree i am going back for more tests its good to know i am not alone

  • Personally I think that levothyroxine does not work, for anyone. Doctors tell you that it works but then they also tell you 'its not your thyroid' when you are still suffering symptoms. I am so glad I found someone prepared to prescribe NDT. I was so ill on levo I just wanted to die.

  • Well, it obviously won't work if you're not on enough of it! And Dancer is on a rediculously low dose and has been on if for far too long. And I think that is the problem 90% of the time. We see people saying that Armour 'doesn't work' or even T3 'doesn't work' when, in fact, they are on such a low dose that they're bound to get worse rather than better.

    Doctors are so terrified of anything called 'hormone' that they refuse to give you enough to get well on. All this guff they spout about low TSH - you can hear them verbally crossing themselves when they talk about suppressed TSH - they are scared.

    I agree that one should have a healthy respect for such powerful elements, but hormones are natural and we need them to live. So, bigger doses, please docs! And then maybe no-one will ever again feel that their treatment doesn't work.

    That's my opinion, anyway,

    Grey

  • Hear hear

  • thank you its nice to know i am not alone going back to DR

  • thank you for your feed back i am going back to DR to get my full readings will keep in touch

  • thank you for your feed back i didn't realise i would get such a lot of replies

  • Greygoose, this hijacks the thread a bit, but can you possibly explain why thyroid cancer sufferers must have their TSH suppressed and medics do not run around in circles of panic at that suppression, yet when other hypothyroid patients have a suppressed TSH medics talk of osteoporosis/heart problems and want to get the TSH above suppressed level?

    I perceive a contradiction here. Am I right?

  • Yup, the world is full of double standards!

    Cancer patients, of course, absolutely have to have their TSH suppressed in order to prevent the cancer recurring.

    The reason, I believe, that doctors don't like suppressed TSH in other thyroid patients is because they don't understand what the TSH is. They are confusing it with natural hyper - because of Graves or whatever -- where a suppressed TSH indicates high T3. But it is the high T3 that does the damage, not the TSH. I don't think they've quite understood that. lol It has no relation to a suppressed TSH in someone that is taking thryoid hormone replacement, because when you take your hormone in a little pill, the link between the pituitary and the thyroid is broken and the TSH - a pituitary hormone - becomes meaningless.

    All TSH does is stimulate the thyroid. It has no other purpose. It does not turn into anything else or affect any other gland. It's absence is not harmful.

    And that's all I know about it! lol

  • That's plenty! Thank you for making things so clear and confirming I actually am right though did not know why, precisely, and giving me the exact words to use. GP in my practice wanted to lower my T3/T4 dose as TSH is suppressed, warning of osteoporosis, heart problems, incipient hyperthyroidism, but I adamantly refused any lowering of dose as feeling good, and while arguing, challenged him with this incongruity of approaches and he was floundering even to grasp what I meant by "this incongruity" as he had never questioned usual medical dogma.

  • lol Oh, I wish I'd been a fly on the wall!!! Yes, that is the problem, they never question anything! They just take what they learnt at med school as gosple and set in stone. Personally, i can't understand this unquestioning attitude, I question everything. Why, why, why! It will be engraved on my tombstone! (Except that I want to be buried at sea...)

  • It very much depends on the cause of your hypothyroidism whether Levo works or not. Also, as others have said, NOTHING will work if you're not being given a sufficient dose.

    I have noticed that some people who are very well meaning take their own personal experience as a guide for others. It may well be valuable, but we need to be careful not to step into the same cowpat that the doctors are stepping into by assuming we're all the same.

    I have found that, with a sufficient dose, levothyroxine is fine for me. I know there are going to be a few things that need sorting - I may well find I need supplements even though I am back to the level when I felt well, since I am now 8 years older than when the doctor reduced my dose.

    What I will say, though, is that this support site has been a godsend in giving me the courage to challenge my doctor and demand better treatment. Thanks to everyone who has given their time and energy to input their experiences and the benefit of their research. :D

  • yes i agree with you its nice to have this web site it makes me feel i am not the only one. going to make another appointment to get the full readings my DR wants to help me because hes new and young so i might get somewhere will let you know thank you

  • thank you for feed back as i dont feel alone any more i have felt very ill at times and wondered if i was mad or something going back to DR will let you know what happens

  • Hello dancer7 you don't mention if you are on other medications.

    A glaring example is, if you are hypothyroid and under-medicated your cholesterol is likely to be high, and the doctor will cheerfully give you statins to lower the cholesterol, rather than simply up your thyroxine which in a good number of cases will be equally effective in lowering the level but without causing the devastating side effects which mirror and magnify the hypothyroid symptoms.

    You are on a very low dose at 50mcg and it is no surprise that you are not feeling well.

    It IS possible that the Levo is not working but before assuming that, you do need to get your test results and also check for other deficiencies mentioned by Shaws. Low B12 is very common in our age group (I'm 68)

    The fact that you HAVE been diagnosed at all is encouraging. Beware, though, of doctors fobbing you of with: "You're getting old!" Or: "Are you depressed? Take this little pill and go away!" (Personal experience when I asked for a Levo increase).

    We all look forward to seeing you get yourself sorted, there is an answer, and you are in the right place.

    Marie XX

  • yes my cholestrol is always high and they give me a diet sheet every year i dont use any marg and hardly any butter my weight is ideal for my height. thank you for your feed back i am making another appointment to see the DR and get the full readings he is very nice and is new to our surgery hes young and interested hes just there on a 6 months place ment i will let you know it's good to know i am not alone i kept thinking i was mad

  • Just a quick illustration: I was on 150mcg Levothyroxine for 23 years and had a healthcheck from BUPA in Jan 2005 at age 60. (For my job).

    Cholesterol 4.7, clean bill of health, slightly overweight, work on it. Heart strong.

    Doc changes Levo on the basis of TSH test from 150 to 100 in November 2005.

    January 2006 3 TIAs, cholesterol 9.7, heart under strain and 1 stone heavier despite no lifestyle change. (my husband has the same diet as me and his is 4.5)

    Possible connection? Not according to the doctor, it is 'Familial Hypercholesterolaemia'. Go on statins! I was fooled for a time. Now I have an enlarged heart.

    I came off the statins 2 years ago because they almost killed me, and now working on increasing my Levo so we'll see what happens...

    Cholesterol being high used to be recognised as a symptom of under-treated hypothyroidism, until the 'magic' TSH test became the normal diagnostic tool.

    I am pleased you have a good doctor, may you get the help you deserve. Keep us posted won't you?

    Marie XX

  • To Glynisrose - your statement that "levothyroxine does not work for anyone" is somewhat provocative and incorrect as it DOES work for many people, but obviously not for you.

    I understood that this blog was intended to be helpful ( which it is ) not to worry people further.

  • Hi Glynis, it was a rather sweeping statement but I feel the same as you did like I just want to die. I'm seeing an NHS endocrinologist soon and I'm going to ask for T3 and if I don't get it I'm going to purchase it off the internet. just to make this clear I am not suggesting anybody else does this, I'm sure you've all got a mind of your own, its just I'm not prepared to go on feeling like this. Just needed to say that before somebody has a moan. X

  • This is a great video and which has just been posted and link to Dr Lowe re problems with T4 therapy.

    thyroiduk.healthunlocked.co...

    web.archive.org/web/2010122...

  • I don't know if I am picking this up wrong but it seems that too small a dose can make a person feel worse? How is that please? If I EVER manage to get any medication I was intending to take the smallest dose possible but it seems like that may not be the best idea?

  • Everyone needs to take enough to give their body the right amount of hormone - whether this is T4 only, T3 only, T4/T3 combination or an NDT. If this turns out to be only 25mcg all well and good, but for some people it turns out to be a lot more.

    I think some of the problem comes from people thinking of thyroid replacement as being a drug or medication. If they could shift their thinking a little and think of it as an essential 'element' for their body to work, it may help.

    Just my thoughts - not medically trained...

    Louise

    xx

  • Infomaniac, I don't know how that is, I just know it is. Not for everybody, but it was for me. I think what it is, is that the small starter dose - 25 or 50 mcg - is just enough to reduce whatever output your thyroid is still capable of, but not enough to meet your bodies needs. And because it supresses your thyroid's output, you end up with less hormone than you had before you started taking the starter dose.

    But it is only a starter dose. Doctors who leave their patients on a starter dose for years and years and years, should be considered guilty of criminal negligence! The theory is that you start at 25/50, have a test six weeks later and an increase of 25 mcg, then wait another six weeks, etc etc etc until all your symptoms have gone. In reality, doctors let you increase (or not) until your bloods are in the so-called 'normal' range and then leave you to it telling you that you are now 'normal' and any remaining symptoms are 'nothing to do with your thyroid'. They are wrong.

    How high you have to go before all your symptoms disappear is highly individual. There are some people that are OK on 50 mcg (or they think they are). But others need a much, much higher dose. What you need is the right dose for YOU. Not what your doctor thinks is right, but what you feel good on. And don't forget that a failing thyroid is going to continue to fail so you will need more and more. Especially if you have Hashi's. So, no, your idea of taking the smallest possible dose is probably not the best idea. We're not talking about aspirin here, we're talking about hormones, the source of life. Without them - without enough of them - we die. So...

    Hugs, Grey

  • Ah right-I get it now! Thanks for that. You and Louise hit the nail on the head by saying that it's not a drug it's an essential hormone.

  • well my Doctor told me my thyroid results were'nt too bad when my TSH was 5.95, considering I was only awake for 6 hours a day and had a goitre it just proves that those TSH levels prove nothing. x

  • Hi there, I think blood tests once a year is not enough, I would ask for them every 6 months. I have recently tried the T3 but i didn,t like it, and didn,t feel any benefit, infact, I had a few side effects with it, so im back on Levo, and I take 125mcg one day 100mcg the next. I still get very fatigued, but I have other health issues as well. Worth asking your GP to refer you to an Endocronologist, see what they say, they will test your blood for Vit D, B12 folate, and adrenalins etc, which you could be lacking. This old age malarky is no good is it (im 60), but its better than the alternative!!! Try to keep your spirits up, I know its hard sometimes. Take care, Kath x

  • Cookiemonster, they test the adrenals. Adrenalin is a hormone made by the adrenals, but we don't ever put it in the plural.

    To test the adrenals they usually test cortisol, DHEA and testosterone, but I don't think they ever test adrenalin.

    I agree with you that blood tests once a year are not enough, and think they should be don't every six weeks until you are feeling well (I hate that word 'stable' because it doesn't mean anything. You can be stable with a TSH of 10, but it doesn't mean you're well). And then every three months. A lot can happen in a year!

    Hugs, Grey

  • Hi Grey, I have to admit to be a bit green around the ears regarding all the different tests. thanks for enlightening me! Best, Kath x

  • :) Just so you don't go to your doctor and ask for the wrong test! Best to look knowledgable. lol

  • As I said it was a PERSONAL: thought, doctors are really too good at telling us its not our thyroid and

    we are fat because we eat too much

    we are in pain because we can expect this as we get older

    there is nothing wrong, its all in your mind.

    I have never met anyone in real life who got well on levo, they still suffer horrendous symptoms and realistically? If you were on the right medication at the right dose you would not need supplements, thats what your body can do for itself when its working properly.

  • Totally agree. X

  • I felt well when the thyroxine was (gradually) upped to 225mcg. My friends who feel well are on 285mg and 275mcg.

  • Hi I'm new to all this but glad I stumbled across the website earlier today. I was finally diagnosed with hypothyroidism back in 2006 had my levothyroxin upped to 175mg daily last jan and felt great finally lost some weight was due to have a knee op beg of feb so drs took my blood & reduced it back to 150 in my pre op was informed there was no need to reduce it. Since then I have piled a stone on in weight 10lbs since the op 7lbs since being mobile and attending the gym four times a week plus aqua therapy twice a week as part of my physio. I'm exhausted and it is starting to effect my mood. Has my bloods done and when you don't up for results receptionist says your thyroid is fine yeah your on the correct dose had d12 etc done & they say its fine . I'm at a loss and really deflated a stone is a lot in 6 months

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