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Starting thyroxine-what should I know?

(43 Posts)
hellymelly Thu 12-Jul-12 22:07:28

My thyroid has been "sluggish" for ages, but my last bloods showed my TSH at 22.5, then dropping to 9.5 when re-tested. My T4 was a bit below the bottom end of normal. This time for the first time I've had my antibodies tested and I have them, so as I understand it my thyroid will gradually pack up, is that the case? GP has suggested starting on 25mg thyroxine. I am scared as three years ago I saw a private doc who uses bioidentical hormones, she felt my thyroid wasn't great and put me on Amour thyroid, but even though I was on a tiny dose I felt so awful on it that I had to stop taking it. (I felt weak and as though my heart was about to give out, panicky and sleepless, so I am guessing rather hyperthyroid but the dose was so low I don't understand why). So I am frightened of taking the thyroxine, any advice really appreciated.

hellymelly Thu 12-Jul-12 23:03:13

bumping..

kickassangel Thu 12-Jul-12 23:06:46

I am quite badly hypo thyroid so not sure my experience will be relevant. But after several months I am so glad I am on it. Mind you, I was close to a come and would die without it so it couldn't be much worse.

Try going on thyroid uk, they have people with way more knowledge and I got some really good answers to my questions.

hellymelly Thu 12-Jul-12 23:10:36

kickass that is terrible- what happened, had you not been diagnosed?

starfishmummy Thu 12-Jul-12 23:14:46

Thyroxine doesn't normally cause side effects as it is just replacing what your body should be making naturally. if you do feel the same this time then do go and see your gp straight away.
25mcg is a small dose - your doctor should arrange aother test after you have been taking it for a few months; it can take a while to reach the right dose, so don't expect quick results.

kickassangel Thu 12-Jul-12 23:19:07

No. Years ago I was told that I was slightly low but not worth medicating. Then over the years it has got worse. I felt daft going to a doctor just cos I was tired, but when I realized that just walking across the room hurt cos my bones and joints were aching I went in. I just waffled about how tired I was and how I kept getting ah upset stomach.

I had hypothyroidism, below Vit D (which was causing me some worrying brain lapses, like not knowing who people were) and C-diff. That's an infection of the bowel that can kill you. There were also a load of minor things as well cos my immune system wasn't working properly.

So I was more than happy to take the meds and so glad i'm pretty much back to normal.

Never had the reaction to the meds that you described, but I think I was so hypo that I couldn't possibly have ended up hyper.

This last week I finally seem to be able to do physical stuff which has still been a struggle although I was staying awake all day for a while now.

My gp said I could go back for a blood test before the 6 weeks if I felt something was wrong, but I'm in the US so completely different medical systems.

igggi Thu 12-Jul-12 23:28:01

Taking thyroxine, at the right dose, should make you feel great, or at least human again! Never heard of side effects other than going too far in the other direction.

hellymelly Thu 12-Jul-12 23:43:00

I would like to feel human again grin.I am tired and chilly, but also get palpitations, nausea, faintness, and have a foggy brain combines with a sort of horrible inertia, I really can't get motivated to do anything, however much fun it sounds on paper it just seems like too much effort. Had sort of put most of it down to being 48...I would like to feel my old bouncy (thinner) self.

igggi Thu 12-Jul-12 23:48:58

Fog and inertia was exactly how I felt - though I had PND! Do try the treatment, I felt better (than before) within a week, though my dose needed adjusting quite a bit in the first couple of years, and when pg obviously.

igggi Thu 12-Jul-12 23:49:37

That should say "thought I had PND"

kickassangel Fri 13-Jul-12 01:20:50

i thought that heart palpitations were a sign of hyper thyrid? follow the advice of your doctor & keep an eye on it.

lisaro Fri 13-Jul-12 01:51:46

This has been posted before. confusedconfusedconfusedconfused

Arana Fri 13-Jul-12 04:58:16

I've just started thyroxine today as well - 50mcg.

I've just been prescribed a new antidepressant as well - should I leave it for a bit? How long will it take for the thyroxine to start affecting the brain fog if that's what's causing it?

hellymelly Fri 13-Jul-12 14:23:59

lisaro-yes, I did post about this a couple of weeks ago- but I felt my post was a bit rambling, (can't think straight either..) and I hadn't seen my GP to get my thyroxine dose (saw her yesterday) . I was mulling over trying natural thyroxine instead, but now think maybe I will just try the basic route first.Oh and kickass, palpitations are common with hypo as well as hyper. (my Mum is also Hypo and has them too).

Briony32 Fri 13-Jul-12 15:06:32

I have been on thyroxine for 2.5 years since having my daughter. Prior to that I was hyperthyroid as a teenager, but this was treated with medication and I was fine for about 20 years. I would say that if you are just starting on medication, make sure you take it on empty stomach at the same time each day, and don't take it at the same time as multivitamins as I believe thyroxin is not compatible with iron supplements. But most important of all, read the packet carefully. Be serious about your condition and don't let yourself run out of medication as it will soon have an effect on you.

I am on 100mcg thyroxine each day. Didn't realise it was so high compared to others posting here. Yikes! I am pregnant too.

Now for a bit of a moan...
I often feel brain fog and inertia, my home is suffering because of it...still haven't unpacked suitcases from holiday and I seem to have given up on tidying and cleaning! I only tidy when I have real motivation, eg: mother in law coming to stay, friends coming round, then I do it in a frenzy and shove stuff into cupboards staying up til the small hours. I sometimes feel inhibited, and feel a bit fake as I try to pretend I am 'normal'. I just don't feel very natural and like 'me'. But I think part of that is my personality, I can be very anxious. One minute I can be really chatty and love to laugh, and then I lose my nerve and clam up. I find it hard to make new friends, feeling that people wouldn't be interested and they are better than me. I can be friendly but never quite pluck up the courage to take things a step further and arrange to go for coffee etc. Sometimes I can't think of anything to talk about it. Maybe it doesn't help being a stay at home mum. I go through periods when I don't keep in contact with friends. Makes me feel like a live a bit of a double life as I don't let on the lack of control.

I think perhaps I am just normal and am a bit lazy and unmotivated, and I tend to dwell on things. My husband is very supportive and says he doesn't mind the mess. I try to keep a sense of humour about things and not let it get to me. But I do wonder why I don't feel much better now if I'm on the right dose.

I had a blood test a couple of weeks ago, and the GP says its fine, but I might be heading towards needing to increase my dose so I should get checked again in a 6 weeks.

I don't really understand all the different levels, TSH, T4 T3 etc. I remember for about 5 mins, then I forget! And have never had an antiobodies test but have been told I'll probably need medication for life.

I think the hardest thing about having a thyroid problem is that it's hard to distinguish the symptoms from everyday life.....tired (yes, probably because you have children too), sluggish, put on weight easily (yes, but it doesn't help that you don't always have the best diet.)

So my advice (from someone who doesn't always take it) is to look after yourself. Try to get good sleep, eat well etc, try to stay active, exercise...then you give yourself a fair chance to feel better.

igggi Fri 13-Jul-12 16:24:42

Briony have you had your dose increased since becoming pg? It's standard practice to do this but not all gps seem aware.

igggi Fri 13-Jul-12 16:27:48

You sound very nice Briony by the way, sorry you are having difficulties with the house, making friends etc. If your doc says you might be heading for a dose increase, chances are your levels are already low (T4) and high (tsh). There's quite a big range that counts as 'normal' and we all vary as to where we personally will feel best. Fwiw I'm on over double your dose, so don't feel it can't be upped if necessary.

hellymelly Fri 13-Jul-12 17:30:45

My house is like yours Briony, not helped by my bad back. Apparently you can have "normal " blood results but not feel the benefit of the meds if you have a problem converting T4 to T3 (or so I've been reading ) T3 is what your cells need for energy. Have they checked your T3 too? TSH should be around 1, anything over 2.5 is getting too high. If you have antibodies then your thyroid will decline over time, it will never improve. You could ask your GP to refer you to an endocrinologist as you are preg.

topsi Fri 13-Jul-12 17:55:33

Hi Helly melly. Can I ask you were the bio identicals for menopause symptoms of just general tiredness. My thyroid is not bad enough to be treated in this country but I was thinking of seeing a private dr for more tests on hormones etc.
Hope you start to feel better soon x

hellymelly Sun 15-Jul-12 12:20:40

Well the doctor I saw (Marion Gluck, you can get info on her clinic if you google it, sorry I can't work out how to do a link as I've changed browser) uses bio-identicals for peri-menopause and menopause, and also for thyroid issues. Do you know what your levels are? You can get your own GP to test your hormone levels if you think that might be an issue, and then see someone privately for an assessment and prescription. My oestrogen and progesterone were fine when last tested, so at the moment its my thyroid causing problems, but as I'm 48 no doubt everything else is also starting to dip. sad.

zanz1bar Sun 15-Jul-12 20:36:49

Ok things I have found or worked out since starting thyroxine.

Take at the same time every day on an empty stomach

Leave at least 2 hours before having a lot of dairy ( cornflakes in milk etc) calcium blocks thyroxine absorption. So I take the tablets early about 7 am with cup of tea( can't give up tea in the morning) then have breakfast after dropping of kids about 9 am. Or just toast.

Change toothpaste to a fluoride free paste like BioRepair. Also get a water filter as our water has fluoride in it. This tip came from my dentist, fluoride blocks thyroxine.

Don't eat Brussel sprouts, swede or peanuts. Always hated sprouts now I have proof they are evil! Goitre centric foods that are best avoided look online.

I am also on HRT , a lot of menopause medication and alternative remedies are high in soya. Soya is bad, bad, bad for hypothyroid, avoid all the soya milk, soya youghurt stuff they sell as health food.

Also take vit B and vit D supplement.

And do not diet, just eat little often.Dieting can slow down metabolism and leave you feeling awful
Now I do everything I can to boost up metabolism and the weight is shifting, all those years of dieting did me no good at all.

CountDuckula Sun 15-Jul-12 20:42:45

if you get too much thyroxine you can get the symptoms like you said. From what I can gather the guidelines are just that, different people can manage on different levels. If you have any problems go back to the doctor and have a chat.

I'm on 200 and have been for a few years now.

mercibucket Sun 15-Jul-12 22:17:52

Good advice here

I had a lot of problems initially on 25mg with racing heart, palpitations etc, just because my body was adjusting. I rode it out, increased to 50, same again, went to 75 every other day and then every day and that was an easier increase

There is a formula by your weight for how much you are likely to need eventually, around 150-250 I think offhand. You need to increase quite quickly at first, say every 4-6 weeks, as your body adapts and produces less thyroxine itself after a few weeks. You're aiming to fully replace really so you switch off your thyroid as it is under an auto-immune attack. A lot of GPs just let you languish on 50 or 75 though so beware! You have a blood test before increasing - be proactive and get this booked in and then a follow up appointmnet, to which I recommend taking 'understanding your thyroid' this book suggests you want your tsh bottom of range and t4 top of range

Also get all your vitamins tested. You are probably low in vit d and ferritin, possibly also b12 or folates. You need this fixing for the meds to work properly and convert from t4 to t3 effectively

Don't be fobbed off - very important!

I feel great now, 8 months down the line, but entirely thanks to my own efforts. Thyroid uk is great for info too

mercibucket Sun 15-Jul-12 22:17:53

Good advice here

I had a lot of problems initially on 25mg with racing heart, palpitations etc, just because my body was adjusting. I rode it out, increased to 50, same again, went to 75 every other day and then every day and that was an easier increase

There is a formula by your weight for how much you are likely to need eventually, around 150-250 I think offhand. You need to increase quite quickly at first, say every 4-6 weeks, as your body adapts and produces less thyroxine itself after a few weeks. You're aiming to fully replace really so you switch off your thyroid as it is under an auto-immune attack. A lot of GPs just let you languish on 50 or 75 though so beware! You have a blood test before increasing - be proactive and get this booked in and then a follow up appointmnet, to which I recommend taking 'understanding your thyroid' this book suggests you want your tsh bottom of range and t4 top of range

Also get all your vitamins tested. You are probably low in vit d and ferritin, possibly also b12 or folates. You need this fixing for the meds to work properly and convert from t4 to t3 effectively

Don't be fobbed off - very important!

I feel great now, 8 months down the line, but entirely thanks to my own efforts. Thyroid uk is great for info too

hellymelly Tue 17-Jul-12 14:46:06

Thanks, that is helpful mercibucket and the rest of you. I didn't realise I might be feeling odd with the adjustment but that it would settle down- I was so scared I just stopped taking the tablets and have just sort of plodded on, feeling increasingly rubbish. Do any of you think it helps to see an endocrinologist, rather than a GP?
The thought of fully replacing makes me feel stupidly sad-just the idea of being dependant on medication for ever, and of an essential organ not working. I still feel really upset and worried about the auto-immune aspect.

mercibucket Tue 17-Jul-12 16:03:14

I'm sorry it's upsetting sad everyone reacts differently. I was euphoric at first to have an explanation! GP looked at me like I was mental! Think your reaction is more common!
I feel completely back to normal now - it's taken 8 months so a while but not too bad. I've heard it takes as long to get well as you were ill (no idea if this is true btw) and it was about 8 months before I was diagnosed that I started having the symptoms it got hard to ignore, altho I'd had others for the last few years
Don't let it get bad! Step in now and help your body recover. I've even heard some people can recover in time, again I don't know much about it, but you can stop your body attacking its own thyroid.
Really tho - get the vitamins tested too
You can see an endo but atm they won't do much more than prescibe the same thing. If you have bupa I'd go for it though. I planned on seeing an endo if I didn't recover with levo alone. Tbh though,if you read up about it you can learn enough to look after yourself
Have you ever had a test for celiacs btw? I know people who had celiacs but no symptoms and it triggered hypo

hellymelly Tue 17-Jul-12 17:39:37

That is interesting as I think I may be coeliac, I got increasingly intolerant of gluten and now if I have any it makes me really ill. I haven't been tested as I stupidly stopped eating gluten ( had only intended to have a six-week break, but my reaction on eating it again was so extreme that I never went back) So now to get tested I would have to eat it for at least six weeks and I've never been able to face it. I had no idea that being coeliac could trigger auto immune thyroid probs , although I had read there was a connection. it is true you need calcium levels checked too? I read there was a thryoid/parathyroid connection.
When last tested my TSH was just under 10, and my T4 was a couple of points below the bottom end of normal.The week before my TSH was 22.3, so it seems to be going up and down.

Arana Fri 20-Jul-12 08:16:13

So I've been on 50mcg/day for a week now, should I have noticed any differences yet? I still feel the cold badly and am knackered for no good reason.

mercibucket Fri 20-Jul-12 09:00:14

Hi arana, 50 is the starting dose, it should start to help in the next few weeks but then you will need a blood test (4-6 weeks) and to increase the dose until you feel well, which is probably when tsh is around 1 and t4 is top of the range
As you may have noticed, this means taking an active interest in your test results and being proactive, otherwise your GP might stop increasing before you are well.
I feel 100 percent better after 8 or 9 months to give you an idea. I felt 90 percent after 4 months and 60 percent after the first 2 months.
I also had to treat my vitamin deficiencies though - you won't feel 100 percent til those are addressed. Did they test vit d, ferritin, folates, b12? They should and again you need to check the results and get them all high in range

mercibucket Fri 20-Jul-12 09:00:14

Hi arana, 50 is the starting dose, it should start to help in the next few weeks but then you will need a blood test (4-6 weeks) and to increase the dose until you feel well, which is probably when tsh is around 1 and t4 is top of the range
As you may have noticed, this means taking an active interest in your test results and being proactive, otherwise your GP might stop increasing before you are well.
I feel 100 percent better after 8 or 9 months to give you an idea. I felt 90 percent after 4 months and 60 percent after the first 2 months.
I also had to treat my vitamin deficiencies though - you won't feel 100 percent til those are addressed. Did they test vit d, ferritin, folates, b12? They should and again you need to check the results and get them all high in range

hellymelly Sat 21-Jul-12 22:51:12

merci did you need to insist your GP tested your vitamin levels or did they do it automatically? My B12 was tested a while back along with my iron, they said both were "normal" but I don't know what the levels were. What is the folate/ferritin?

Islandlady Sat 21-Jul-12 23:30:34

Just to say - as I cant see it meantioned on anybodys posts

Thyroxine being a hormone is not subject to prescription charges ] ensure you get a medical exemption certificate vis a form you fill in at your GP this meansthat you get ALL precriptions free not just Thyroxine

hellymelly Sat 21-Jul-12 23:30:50

I still haven't started my tablets as I've so scared- how long did the adjustment take each time ? Did you feel really strange and horrible? I am in a bit of a state about it as I know I need to start medication now but I am worried I will have a heart attack or something (I know that makes me sound unhinged, but it is a big fear !)

mercibucket Sun 22-Jul-12 09:13:09

Thanks for the reminder, islandlady

Hellymelly, ((hugs)), it's honestly fine! When you took the naturl thyroid last time, maybe your levels were not that bad so it sent you a bit hyper. Why not start every other day for 3 or 4 weeks then go to every day and do each increase like that?

mercibucket Sun 22-Jul-12 09:13:09

Thanks for the reminder, islandlady

Hellymelly, ((hugs)), it's honestly fine! When you took the naturl thyroid last time, maybe your levels were not that bad so it sent you a bit hyper. Why not start every other day for 3 or 4 weeks then go to every day and do each increase like that?

igggi Sun 22-Jul-12 14:20:09

Hellymelly the levels you posted sound quite poor, your body needs the thyroxine boost - if you are starting off on 25 or 50 as a dose I really can't see it shooting you into over-active, when the palpitations might happen. What's more likely is you won't notice much difference, and need your dose increased further.
If someone with such high tsh got over-active symptoms from a low dose of thyroxine, I would be inclined to think (no medical training obviously) that something else caused it.

hellymelly Sun 22-Jul-12 18:01:14

Thanks for the support ladies. I think I will start taking it this week. I would feel fine if I hadn't had the horrible response to the amour thyroid. My TSH then was about 6 and my T4 at the very bottom of normal. I felt fine the first day, then couldn't sleep at all that night, then the next day I felt really horrible and weak and strange, really as though my heart was about to give out, and although I stopped the tablets it took a couple of days to go away. I then tried a month later having the tablet every other day, but the same thing happened, although it took slightly longer before I had the reaction. I know lots of people on thyroxine and no-one seems to have felt like that and it really scared me. I told my GP - she has put me on 25mg to start with because I was worried . She just said to see how I feel. I get a lot of palpitations anyway, and feel faint and strange sometimes. And horribly nauseous when I wake up. I did read somewhere that the adrenals can get a bit sluggish and then going on thyroxine can make one feel awful, if the adrenals aren't working well, but I don't know if that is a factor.

mercibucket Sun 22-Jul-12 18:35:14

I have also read that, hellymelly
How about posting on www.healthunlocked.com as well on the thyroid uk forum. They have lots of helpful people with lots of experience and knowledge and quite a few posters talk about adrenal fatigue and supplements.

mercibucket Sun 22-Jul-12 18:35:14

I have also read that, hellymelly
How about posting on www.healthunlocked.com as well on the thyroid uk forum. They have lots of helpful people with lots of experience and knowledge and quite a few posters talk about adrenal fatigue and supplements.

Croatianqueen Tue 20-Nov-12 11:13:35

I have Hashimotos and was taking thyroxine. Before thyroxine I was a size 8. On thyroxine at dose of 150 mugs am now size 18. My tsh has always been 10. My t4 sits on about 12-15 on thyroxine t3 not sure and thyroid per oxidase antibodies 547. I'm gluten and lactose intolerant. Thyroxine contains lactose. Brain fog, extreme fluid retention and muscle cramps, muscle weakness really bad on thyroxine and losing sensation in my little finger and fourth finger, carpel tunnel bone aches bad on thyroxine. Gp said I neded to exercise. Before going on thyroxine I power walked 5 days a week, gym 3 days a week and size 8. On thyroxine I managed to in one year kayak around my local lake of 280 kms at 20 km spurts and this is when the 30 kg weight increase started. Yes the more I did the more weight went on. Brain fog so bad could not do simple chores like housework, etcand too embarrassed to have friends come over due to mess. I even tried natural thyroid but my t4 went to 8. It was then that I relished my thyroid was secondary to iodine deficiency and started taking 20 drops of Lugols iodine which is 50 Mgs. Felt better but not in combination with thyroxine. The more I complained to my gp the more he increased the dose causing extreme fatigue, weight gain and fluid retention everywhere. It was leaking out of my ankles and my face was so puffy. I stopped taking thyroxine three weeks ago and instantly my body began to repair. No fluid retention. No more bone aches muscle cramps etc. I went off it cause gp told me medication is working and my levels are normal and just need antidepressants. Told him to go on thyroxine 150 for three years and see how he felt. He would not tell me what my tsh or t4 was and said keep taking thyroxine. Most people with hashimotos want to know the figures and want to get and feel better. On iodine only andthyroidhealth capsules and it c 100 Mgs and vit b I feel limitless. My house is now clean, have finally caught up and I feel limitless and normal again. Not some doped out zombie with lead legs and brain so slow.you see my body was fighting the thyroxine. I wanted my cortisol levels to be checked and to be checked for addisons but gp refused. Iodine is antibacterial, antiviral, anti parasitic, and causes cancer cells to die.it is also essential for thyroid function and was the treatment for hashimototos when dr hashimotos first discovered the very first auto immune disease hashimotos in I think 1929. The problem is drug companies cannot patent iodine so cannot profit from it. Thyroxine makes your thyroid shut down. Yes. This is what modern medicine has decided is best for us. My brain fog is gone and I feel on top of the world. I have energy like you wouldn't imagine and I feel normal again. My fluid retention is subsiding and my appetite has decreased as I a eating healthy food only.on thyroxine I was eating healthy but it was just turning sushi to lard. Long way to go but I now feel the energy to exercise, and wake up fresh ready for housework and the day. Sorry for long post. Tried to condense last three years. Hope this helps someone.

Croatianqueen Tue 20-Nov-12 11:16:45

Forgot to mention my hands are no longer ice cold taking iodine and my penchant for scorching hot showers is gradually subsiding.

Croatianqueen Tue 20-Nov-12 11:31:42

If anyone is wondering t4 simply means 4 molecules of iodine. T3 or trio thyroxine is three molecules of iodine. If your t4 is low then you are more than likely to be deficient in iodine. To test get iodine for wounds from chemist and paint an area on your forearms. Time the absorption rate. If iodine noticeably soaked in within 30 mins you are iodine deficient. Radioactive iodine from nuclear radiation is absorbed by your body quickly in an iodine deficient state as your thyroid can't tell the difference. Iodine is essential for a healthy thyroid. Radioactive iodine isn't.

Ruthhamblin Fri 23-May-14 22:26:57

I have just been diagnosed I was called back to GP after blood test showed I had virtually no thyroxine in my body. I took first tablet of levothyroxine today but my face/body still swelling,help please? When will this start to decrease?

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