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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.

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?

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.

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 11:13:35

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.

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.

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.

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.

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?

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 !)

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 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?

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

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.

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.

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 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 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

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

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.

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.

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.

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

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