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Just picked up first prescription of levothyroxine

(20 Posts)
GoldenGreen Wed 27-Mar-13 12:00:30

Am scared of taking it as have heard googled so many horror stories about people feeling worse on it. I also can't decide when is best to take it - I tend to have a lot of high fibre and calcium rich food for breakfast, so figure I should just eat early as possible in the evening and then take the levo before bed? Am also taking multivitamins with iron and have to work around those.

Am only starting on 25mg so probably worrying for nothing! It's just a bit of a shock to be prescribed 'lifelong' medication. I wondered if anyone else felt the same.

KurriKurri Wed 27-Mar-13 12:42:20

I was told to take mine in the morning, but I don't know what effects the iron supplements might have - what does your GP suggest?

I felt so incredibly ill when i had thyroid problems that I was glad of anything that would help. And it did help - I could actually feel normal again after being so tired I could hardly stand up.

What horror stories have you heard? - certainly if you have any worries go over them with your GP/endocrinologist, - sometimes when starting a new drug, I find it helps to keep a daily diary where you can jot down any sensations or odd physical feelings for a month - then you will remember to mention them next time you see your doc, and it will give you an idea of any patterns that might emerge smile

25mg is quite a low dose (IME they start you off low and build up if necessary) it can take a bit of fiddling around to get the dosage right, but once they do hopefully you will feel a lot better.

I know what you mean about the idea of life long medication - it is a daunting prospect, but I am on quite a few drugs for various conditions, and levothyroxine IME has the least side effects - it is in effect replacing something your body is failing to make, rather than introducing a completely foreign substance into your body.

GoldenGreen Wed 27-Mar-13 13:22:10

Thank you Kurri - the idea of a diary is a really good one. The thing is, I don't feel awful - but I don't feel right, either and there have been a few stressful things happening in the last year, so I don't remember 'normal'. Will be interesting to see what happens, but it's good to know it can take a while to get the dose right. Glad it has been so helpful for you.

digerd Wed 27-Mar-13 17:12:53

I think you meant mcgs?
I had an overactive thyroid gland when young and had a partial Thyroidectomy, which was fine. 20 years later my blood test showed a slight underactiveness, so I was put on 50 mcgs, which I take in the morning and had no side effects that I. But didn't notice any symptoms.
My sis developed an underactive Thyroid gland after her 2nd birth and was put on 150mcgs, but decades on it has been reduced to 75.
She noticed no symptoms.

digerd Wed 27-Mar-13 17:13:50

Nor side effects from Thyroxine.

paulapantsdown Wed 27-Mar-13 17:34:09

It is a bit of a freak out when you realise that you will be taking these little white tablets everyday for the rest of your life, but you really need to try to see it as a positive thing. You won't know yourself soon!

I'm not sure what you mean by horror stories though? I have been on thyroxine for 15 years, and although it took a little while to get it right, I felt better from day one. Mind you, I had let myself get really sick before seeking help, and i had to go up in dosage from 25 to 100 in 5 days (apparently that usually takes 6 months for people who are not complete eejits).

I would just give the iron tablets a miss for a little while. You have probably been taking them coz you feel tired, but that tiredness will wear off now once you are on the thyroxine anyway.

crushedintherush Wed 27-Mar-13 19:18:31

Hi golden, I've been taking Thyroxine since I was a baby, for myxoedema.

I started on a very high level, and over the years the levels dropped (I'm 47). I remember being on 200mcgs at one point, I'm on 125mcgs now. No side effects whatsoever.

hth smile

crushedintherush Wed 27-Mar-13 19:20:05

Sorry, meant to say, I take the tablets before I go to bed, sometimes with supper, sometimes without.

SummerInSicilia Wed 27-Mar-13 19:27:34

Just to say I'm pretty sure taking thyroxine entitles you to free prescriptions, hope you're aware of this? I take 75mcgs, no side effects.

crushedintherush Wed 27-Mar-13 19:33:41

Golden, summer is right, you won't need to pay for your prescriptions. Was it your GP who put you on Thyroxine? If so, speak to the gp surgery. They should give you an application form for a medical exemption card. Ignore the the advice if you've already sorted it outsmile

timidviper Wed 27-Mar-13 19:39:14

I thought the usual advice was to take levothyroxine in the morning before eating

GoldenGreen Wed 27-Mar-13 19:48:36

Thanks all. Yes, I expect is it 25 mcg, oops! It's just when I searched the archives, I saw a few posters complaining about feeling rubbish but perhaps it is just about sorting out dosage.

Am taking iron because my ferritin level is really low and improving v slowly with supplements.

Handed in exemption form today, thanks - and the fab pharmacist wouldn't take payment from me today, saying the certificate would be sorted by the time the paperwork from the prescription was done.

Thanks all - feel much more positive now.

crushedintherush Wed 27-Mar-13 19:57:21

Hi timid, since I was a child I've taken mine before I go to bed, don't know any different.

I am not a morning person, so I would probably forget to take them then lol grin

GoldenGreen Wed 27-Mar-13 20:33:10

There seems to have been some research which suggests evening is good or at least comparable to morning:

but official advice seems to still be a morning dose. I hate going against official advice usually, but doing it this way might suit me - I would have to give up the late night snacking, as it is supposed to be taken on an empty stomach!

RockinD Wed 27-Mar-13 20:37:27

You can take it in the morning or in the evening, as long as you take it on an empty stomach and don't eat or drink anything other than water for an hour afterwards. Evening/bedtime is ideal for many people; it's one less thing to think about in the morning scramble.

What you do need to be aware of is that 25mcg is a tiny dose, given that the recommended starter dose now if you're not over 50 and/or you don't have heart problems, is 100mcg. You may find that it makes little or no difference at this stage.

You also need to be aware that it may well be totally ineffective at any dose until your ferritin, and any other vits or mins that are low, are up to optimal levels.

GoldenGreen Wed 27-Mar-13 20:43:52

Thanks RockinD. I will step up the iron rich foods etc in the morning and make sure I take the levo on an empty stomach in the evening.

mutantninjamyrtle Wed 27-Mar-13 22:52:29

Golden, many of the horror stories are down to the fact that for some (like me!), levothyroxine does bugger all - we need a supplementary thyroid factor to help our bodies make use of the T4.

I used to find it best to take my levo last thing at night as I am a massive coffee fiend...

sunnyday123 Wed 27-Mar-13 23:01:47

25 mcg is normal starting dose near me. I was diagnosed at age 24 (tsh was 16 at the time) and started on 25 which was enough for me for the first few years. After dd1 I had to increase to 50 and after dd2 I'm now taking 75 and have done for 3 years. I've had it 10 years and whilst I have no major symptoms I'm still always freezing!!!

sunnyday123 Wed 27-Mar-13 23:03:29

I recently had a medication check up with pharmacist who said you can take it at any time but it may keep you up at night if you take it at bed time. You're also feel more tired during the day after as it starts to wear off. I take mine at night purely as I'm more likely to remember!

digerd Thu 28-Mar-13 07:35:00

I'm on 50 and my TSH last time was 4.8. Some people on here have said that is too high, but as I am 'old' and have a heart problem , caused by the overactive Thyroid I had when younger, doc has not increased it to 75.
My tiredness and aching legs he puts down to ageing/arthritis. < resigned face>

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