Levothyroxin

Seriously apart from bringing down my tsh levels to normal range which doesn't really have any physical benefits that I can feel, why am I taking this medicine. I have less energy, my hair still falls out, I'm still always tired, my vision is still getting worse and now I have levothyroxine side effects, headaches real blinders and muscle weakness which I never had before. I'm seriously questioning my sanity because I'm still taking it. Also my weight has increased since my tsh at normal range????? This doesn't make sense to me, shouldn't my weight problem be the other way round ????. I'm so confused. My doctor told me to just take naproxin for my headaches which isn't very efficient so I've been taking zapain. I feel I'm gonna end up like Michael Jackson and become over medicated, how can I stop this, can anyone suggest anything???

56 Replies

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  • Do you have a copy of your test results? 'Normal' can mean anything, and it may not account for what is going on w your thyroid. High in the range isn't good enough if you're on meds, you need to be down closer to the bottom of the range, below 2 - or below 1 for some people - before you're adequately medicated, and your vitamins and minerals should be replete, esp d, b12, iron and folate.

  • Haven't got a copy of results but will ask for them asap. Tsh was at 1 .

  • Great. Tsh at 1 is a good start, so at least they're not leaving you at 4.5. Would be good to know your t3 and t4, though they may not be doing those tests. They need to be high enough in the range to be helping. If you're not converting t4 to t3 you may feel rough. You can also be suffering from deficiencies (often d, iron or b12).

  • Just got print out, my tsh was 1.5 but has gone up to 2.04mu/L (0.27_4.20) ferritin 37ug/L(10_150) B12 402ng/L(191_663) Folate 12.3ug/L. (4.6-18.7) Sodium 141mmol/L(133-146). Potassium 4.2mmol/L (3.5-5.3). Protein 73g/L serum albumin 46g/L(35-50) blood glucose 4.1mmol/L serum calcium 2.39mmol/L(2.10-2.58) adjusted calcium 2.27mmol/L will be filed at 44Ic.11 adjusted serum calcium level serum albumin 46 g/L total alkaline phosphatase 57 u/L (35-105)

  • May I suggest you really need to know your t3 and t4 and that may shed a lot of light on this situation. You may also want to do a separate post on thyroid/levo/headaches to see if anyone has had a similar experience and maybe some advice.

    If it feels like levo is hurting you rather than helping you that may be the case. You may be one of those few people who can't use it.

    You certainly shouldn't be allowed to languish in this awful state of constant pain. No one deserves that. You pay your tax right? You're entitled to find the cause and solution or as near as.

  • How do I get my t3 and t4 levels and if my surgery only give generic versions of levo, how would that help me???

  • I agree with puncturedbicycle. I've read that low iron can contribute to headaches, so I suggest you check that out.

    I also found that taking meds for headache/migraine didn't always work, but they increased in frequency, and could last 2-3 days. So I've stopped the meds for that, and latest head only lasted a day !

  • I have headaches everyday all day, I try not to take painkillers because fear of long term effects but their doesn't seem to be an end I'm so worn out.

  • Get your iron/ferritin levels measured. Low iron can give people really bad headaches.

  • Ferritin 37 ug/L

  • Yes, that is low. You want to supplement, combined w vit c, well away (4 hrs) from your thyroid meds.

  • Doc did prescribe iron a way back but said I didn't need no more. I do take 1000mg hit c thanks it helps a bit with the hair loss.

  • Do you know what the reference range is for your ferritin result?

    It would usually be shown on a printout looking something like this :

    37 ug/L (15 - 150)

    The numbers in brackets may be different though.

    Whatever the reference range is for your result you need to get your ferritin levels up to mid-range. Low iron/ferritin is one of the commonest causes of hair loss.

    You can buy iron supplements of many types without a prescription. You can also buy the supplements that doctors prescribe without a prescription if you go to pharmacies or shop online.

    Many iron supplements have very little iron in them. You need something with a good level of iron since yours is so low. I'm reluctant to give any more information because I don't have the reference range for your ferritin result, and may be giving inappropriate information.

  • Oh, the range is (10-150). Now I'm starting to see. Thanks for opening my eyes. I've took an iron tablet today and will continue too with vit c. Thanks again. I decided not to take anymore because my gp said I didn't need any. I didn't buy my own because with hypothyroidism my body functions are really slow and I thought if I took over the counter iron I would become toxic.

  • It is true that people supplementing iron should be tested regularly because too much iron is toxic. But that isn't a good reason for avoiding iron altogether if your levels are low.

    There are lots of different iron supplements available. Two of the commonest ones used on this forum are :

    1) Iron bisglycinate - available online without a prescription. It is also known as Gentle Iron. There are several makes/brands to choose from.

    2) For a higher dose of iron, people often take ferrous fumarate 210mg. Each tablet contains 69mg of elemental (pure) iron. The maximum dose is one taken three times a day, giving you 207mg of iron per day. It is sold in boxes of 84 - enough for 3 per day for 28 days. It can be bought in pharmacies in the UK without a prescription, but it is at the pharmacist's discretion. Boots will often refuse to sell it without a prescription, but other pharmacies are usually happy to sell it.

    Each iron pill (of any kind) should be taken with 500mg - 1000mg vitamin C. Iron causes constipation, vitamin C in high doses causes diarrhoea. The idea is to get the balance right so that you don't suffer with either.

    Thyroid meds and iron supplements must be taken at least four hours apart.

    Don't forget to get tested regularly. Depending on how well you absorb the iron this might need to be after about 3 months to begin with until you know how fast your ferritin goes up.

  • I still have some ferrous fumarate so will now continue with those. How will i know if i become iron toxic, gp have not said when they gonna check bloods next?. Is there a definate indication which cannot be confused with unrelated causes? Do you know what will help the rough dry skin, I've tried e45 don't work, I don't know what will stimulate my body to produce oil. I used to take evening primrose with cod liver oil but should my own system be able to make it on its own.

  • Unfortunately there is no obvious indication when you are overdoing the iron. The only way to know is to test.

    You can get testing done privately, but of course it costs money.

    thyroiduk.org.uk/tuk/testin...

    bluehorizonmedicals.co.uk/

    There are various ways you can find out your ferritin level.

    You could do the Thyroid Check Plus Eleven which currently costs £99 and includes lots of things besides ferritin testing, or the Plus Ten (which doesn't include vitamin D testing). Or you could test just ferritin on its own which costs just under £60.

    Or from medichecks.com you could order the Iron Status check for £49 :

    medichecks.com/find-a-test/...

    or just order a ferritin test for £39.

    There are lots of different options. It all depends on what you are prepared to pay for and what you want to know.

  • On the subject of your dry skin, I'm afraid I can't help. All I know is that it is a common hypo symptom.

    You could ask a new question specifically about dry skin and see what people suggest.

  • Thanks humanbean.

  • Hi. Just been reading long list of replies here. I agree with puncturedbicycle, you shouldn't have to put up with feeling so awful. I suggest you find another GP.

    I was googling this earlier: healthcastle.com/iron.shtml

    It's about how much iron you need, and how to find it in food. It says that the body struggles to absorb non organic sources. I'm exploring this, as also have low iron levels, and body didn't like the prescribed iron filings - which doesn't seem natural to me anyway. You never see anyone sit down with a plate of iron filings to eat.

    You may find that if you increase your iron levels, your headaches will diminish.

    It may also be worthwhile having eye test, to make sure it's not just eye strain.

    I really hope you feel better soon.

  • Site really helpful will use it frequently. Thanks have considered changing gp few months back but think problem is the NHS.

  • I agree there is a problem with NHS, but I changed GP this year, and regret not doing it sooner. I gues it all depends on whether or not you're well enough to make the change....

  • Well not had levo for third day and I'm actually capable of thinkig and maybe even making a educated decision. So Im hopefully on my way to good health.

  • Thank goodness for that. There's nothing like hope to keep you going.

  • Angelic69 that sounds awful, you have my sympathy. Has this ever been looked at? Do you know why you get the headaches? Can you identify a source (hard to do I guess when they never stop)?

    You shouldn't just be allowed to remain ill like this. Steps need to be taken. I don't care if they say 'Oh yeah, everyone has headaches' you can't just live on painkillers and be in pain every day unless they've exhausted the options for treating you. Even if that was the case then you should be referred to a chronic pain clinic. Honestly, I despair.

  • I think its the levothyroxine that's giving me the headaches.

  • Keeping in mind that I'm only a layperson, not a doctor, in my opinion under the circumstances it doesn't seem unreasonable to stop your levo for a day or two to see if your headaches lift. Of course eventually you'll need to use something, whether it's purified levo, ndt, t3, whatever. Have you ever stopped before to see if you feel better?

  • Levo has never suited me but our surgery only prescribes generic levothyroxine there's no alternative available I've already asked after the first month on levo. I definitely need to weigh up the pros and cons I'm just a little scared of thyroid crisis and coma. I have alternatives for the symptoms it does address but after being on 125mcg I don't know if my gland is capable of making any now.

  • T3 and ndt are available, though your surgery may not prescribe them. Levo will stay in your system and reduce slowly for weeks, so coma isn't a thing that happens after a day or two of missing your tablets. I should stress I don't mean stopping your tablets for longer than a few days. But obvs it is a decision you'd have to make on your own terms knowing what it might teach you and what your next step might be.

  • How can I get hold of that other stuff and does it work?

  • Some people get it from practitioners who may or may not be doctors, some people buy it otc online.

    A large percentage of people here get their meds this way so yes, it works.

    Have a good read of this forum and it should give you a better idea of what you might go on to do next should you choose to change your meds. When you've decided what you want to do you can always post here asking for people to pm you their source of meds. Ideally a prescription is better for many reasons but a lot of people self-treat if they get no joy any other way.

  • I need to stabilise my tsh, 125mcg brought it to normal levels but has started to Creep back up within a month. What will it be next month. I don't know why my body keeps demanding more to become In range. I know max dose is 200 but 125 already gives me splitting headaches. Dont know what will happen if dose goes up and headaches get even worse or muscle weakness gets worse I wouldn't be able to function. That outlook looks really grim.

  • Some people just have trouble stabilising. I'm one of them. I went from 150 levo, added 10 t3, then reduced and reduced levo until I was on 50, then alternated 50/75, then 75, now 100 levo and 10 t3.

    I think that living in constant pain is no option at all, esp if it's due to your levo. If that's what's causing your headache you will have to find an alternative. And I can't see any doctor worth their salt compelling you to be in pain if it's the levo causing it.

    Has the doctor ever referred you for these headaches?

  • Only got severe over this last month, so probably waiting to see whether they'd go on there own. Think it is the levo though.

  • Didn't take levo and still have headache but doesdnt feel as intense. I leave it one more day and see if its gone.

  • Angelic69 did you know you don't have to take levo every day? You could take a higher (double) dose every other day, but then take nothing alternate days. Or a triple dose every three days if you see what I mean.

    I understand this is no solution if it means feeling worse on the high dose days, but it might be worth experimenting with.

  • Didn't know might be worth suffering double dose for a headache free one. I'll give it ago.

  • In theory you can take your whole week's meds once a week, but some people are v sensitive to levo and get palps or other side effects if they alternate.

    If you want to try the alternating day thing, maybe for the first time you try it don't take a full double dose on your levo day, just to make sure you're not going to have a bad reaction. I say that because we already know it doesn't agree with you.

  • If this is how I'm going to feel the rest of my life then gz life really sucks.

  • I think the thing is to find the cause of your headaches. If it is your levo then yes, I imagine the outcome will not change unless you pursue alternatives. But there are other options.

  • Second day without levo and bead feels so much better. I didn't realise how bad it was until today, I feel that my brain has been released from captivity.Didn't sleep a wink last night which I feel is to the fact that several months of thinking free thoughts have been trapped and so I enjoyed a sleepless but mindfull night. So glad I took your advice.

  • Angelic69 sleeplessness can be a hypo symptom.

    I think this is evidence that your levo doesn't agree w you. I'm not a doctor (just a fellow hypo layperson) but I had some ideas of how you may want to go forward (if you've already tried any of these just disregard):

    1) ask the pharmacist if you can try a different levo brand to the one you've been taking

    2) tell your gp of your findings and say you need to find a solution which addresses both your thyroid needs and your headache issues w levo

    3) find a different gp who will work w you on this basis

    4) try the alternating days approach to see how you feel

    5) add in some t3 and decrease levo and see if head improves

    6) try otc ndt and see if it is any better

    So you have a number of options. :-)

  • Will do, I've booked an appointment for2nd sept, will ask for t3/t4 levels to be checked. Will try alternative days. Don't think I will be able to get different brand till these are used but will try. Don't know what OTC or ndt are. My gp surgery only prescribe generic levothyroxine. Will check other surgery's in area to see whether they offer an alternative.

  • Thanks for this info puncturedbicycle. I had to miss several days t'other week (due to illness), so was wondering whether or not to take extra on re-starting it. I was tired the following week, but didn't know if it was due to missing levo, or illness.

  • Greenwall in theory you can just make up the difference when you feel well by taking what you missed in addition to what you normally take, though I should add that not everyone feels as well when they take 'extra' on alternating days. I suspect it is a very individual thing. I have done different doses on alternate days (50/75 and 50/100) and didn't notice feeling any better or worse on 'high' or 'low' days but I hear some people feel jittery on higher than normal doses, even if the total levo is the correct dose. (Hope that makes sense.)

  • Yes it makes sense, thanks.

  • Private consultant Saudi don't always worry about blood results as my tsh was 3.1 and my doctor wants me to up my dose but I can't as I get headaches .he said some off his patient not nanny he pointed out need a higher tsh than normal and feel fine so doctor tells you one thing and some consultants tell you differ ,

  • Maggiemay12 everyone really needs to be allowed to find the level that will restore their health, which is why no one should be compelled to keep their tsh at 5, nor at .5, unless they feel well there. It doesn't sound to me like the op is feeling v well on this dose. That doesn't mean that more will help, it may mean that less is the answer, but it may mean that levo just doesn't suit.

    The problem most people encounter is that the doctor (endo, gp, whatever) is keen to keep the tsh high in the range despite them feeling unwell, and that is the only test they pay any mind to. It is a generalisation, but we see it over and over here.

    I can't remember anyone who was compelled to keep their tsh below 2 and refused a reduction because they didn't feel well on so much thyroid meds. I'm sure it may happen somewhere, but it isn't usual or commonplace the way it is to keep someone undermedicated and feeling awful, which seems to happen routinely.

    It's also true that some people just don't do very well on much levo if any at all, in which case it would be good if they could try ndt or t3 alone. Keeping your tsh at 3 is fine as long as you don't get the health problems associated w a slightly raised tsh. If your cholesterol is high and you have no energy but every time you increase levo you feel ill (headaches or palps or what have you) it would be great if you could have a go at something that might make you feel better rather than just lower your tsh.

  • Yes that would be heavenly

  • If your tsh was slightly high then and energy fairly good ,bowels were fine ,as when under medicated constipation is a problem and your temp is usually good then one shouldn't worry too much would that be true ,

  • Had to take acidophiles for bowls as constipation was big problem and maintaining temp was also problem. Muscle tone was good though.

  • Just wondering as even though my tsh is 3 31 I don't have those problems , the symptoms you have said I start with when I feel undermedicated so I know straight away my medicine is too low no matter what tsh is ,

  • I have thought that maybe this medicine doesn't contain active thyroxine because when I was first diagnosed read some books that were written by american endocrinologists and they said refuse to except generic versions of thyroxine something to do with licensing and what generic versions contain, apparently they don't have the same standards as branded version which I think relates to containing thyroxine in an adequate quality to containing a placebo type. That would explain that why I'm on 125mcg I have symptoms of being non medicated. They said that people that get the proper treatmernt (lucky buggers) feel back to normal very quickly. I've had a rare occasion where I've felt so so but usually I feel bedraggled. I just wasnt to feel well. Someone asked whether I pay my taxes?? What's the connection. I'm on employment and support allowance due to I'll health. Woulkd like to work but carnt until I'm well.

  • I know when I was over medicated I felt really ill and temperature was low but when I Reduced Levothyroxine my temp went up and I felt better so over medicated doesn't always make you full off energy ,other times I felt brilliant when I was slightly over medicated ,I was walking about 4 miles and it was great but sadly I started being to hypo at bedtime so reduced ,it's very difficult getting correct dose . Tried NDT and too much T3 in it caused me problems so trying to get levo right .

  • I do exercise but feel totally fatigued and run down afterwards my motivation is the weight gain if I don't. I used to be able to workout for hours and not feel the fatigue that was when my tsh was high. Now I just carnt do it. Every muscle aches now and I get so dizzy and my eyes get so fatigued too. I really haven't found a good balance as yet. I have a week that I train well, then need to rest a week to recover which usually takes me back to where I started and the cycle begins again. Now I know about the levels I won't be scared of becoming toxic so much.

  • Know how you feel ,you exercise to try and stop the weight gain but you crash after a week ,

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