Searching through posts I’ve only found one other user as a result of a complete thyroidectomy. Been taking thyroxine for about 7years almost to the day and not really had many issues until the last 12 months. I / doctors can’t seem to get the dosage right so it’s been gradually creeping up but in my last visit two weeks ago I had it upped again from 225mg to 250mg. An extra 25mg a day is quite a bit and I’ve gone up in 12.5 stages. Reason for upping it was because my T4 levels were ridiculously low which I’m putting down to having had constant colds since October. Now I’m suffering from thruppeny bits, disorientation, fatigue, weakness and sore eyes all which seem to point to too high a dosage. Do any of you have side affects from thyroxine when the doctors are happy with your levels and does being I’ll have an affect on your levels too?

What’s your TSH?

I have been on again off again on thyroxin for about 6 or 7 years since radiotherapy treatment because different doctors I have seen as I move around can’t decide what to do.
I have only had a max dose of 50 micro grams (not milli) though which strikes me as neither here nor there, and I guess the doctors felt the same. I’m actually due to get it looked at again in a couple of weeks.
Not much help for your situation unfortunately.

Can’t remember exact figure but it was quite good. It didn’t make sense to me how my TSH could be fine but T4 low. Had a new registrar and didnt have much confidence with what she said. Got my GP ringing tomorrow as can’t get an appointment for two weeks

This is a good place for information, as is the Forum which you need to sign up to:

http://www.thyroiduk.org.uk

I’m taking thyroxine but am supplementing, naughty me! No surgery though.

No problems or side effects here. I think I am probably a simple straightforward case. Been on 100mcg for 10 years or more. And pretty much we got the dose right from the off.

Whenever, I have some ambiguous symptoms the GP says oh perhaps we better test the Thyroid again, but it always comes up fine.

It wasn’t until I read some posts on here, for example CG’s thread that I realized that for some people it is a right PITA and difficult to get control of.

So not much help, but wishing you well.

As a quack I’d tend to be keeping the TSH in the lower half of the normal range form most hypothyroid people , eg 0.5 to 2.5 and if you felt well on that, not worrying too much about the T4 or T3, but total thyroidectomies are pretty rare these days… Most underactive thyroid problems wouldn’t get near hospital now, something odd with yours? And are you 90-100% good at taking the tablets? Often screwy results go with missing medication.

And yes you are on a pretty big dose, but a few people need it.

In Europe and USA, they aim for a TSH under 1. Some people have success on T3 rather than thyroxine.

Apparently thyroxine should be taken with water at least half an hour away from other meds and food.

Apparently thyroxine should be taken with water at least half an hour away from other meds and food.

I didn’t know that. I take it with other meds and water first thing in the morning. Haven’t read the PIL for years. CG what is the rationale for that advice/recommendation?

I am also a quack, and an endocrinologist by trade.

Other meds and food can interfere with the absorption from the gut and mean that you get a variable effect. In my experience it doesn’t seem to make a difference to some people but makes quite a lot to others. Don’t ask me to explain why that is.

http://www.btf-thyroid.org/ is the website of the British Thyroid Founhdation and is a source of good advice. There are all kinds of websites out there advocating all sorts of remedies. The BTF’s page on falsehoods is a useful read but basically any website that tries to sell you a miracle cure or offers to send you a list of doctors who are prepared to see you privately is probably best avoided. Even if you don’t need it, treatment with thyroxine or steroids may make you feel “better” in the short term whilst stacking up trouble in the long term. Patient.co.uk is also a decent source of more general information and has sections about thyroid disease.

Thyroxine requirement does change with time, albeit slowly. Very, very occasionally people do benefit from replacement with T3 (tri-iodothyronine) instead of thyroxine, I’ve seen 3 in 30 years. People who have had total thyroidectomies usually need around 200-250 micrograms of Levothyroxine. Depending on how big the change in dose has been it can take anything from 3-4 weeks to 4-6 months for the body to adapt to the new dose and for symptoms caused by the change to settle down, so sometimes making frequent adjustments to the dose can perpetuate symptoms.

Been on 200mg a day for 3 years now, rose steadily from 50mg for the first 8 years since diagnosis, but seems ok at the mo!

My Dr told me not to check anything for 6 months after a change in dose…. unless I had another stroke 😯

I have avoided that for nearly 10 years now 😆

Can’t wait to turn 40!

I’m on 200mcg having started on 50mcg 7 or 8 years ago
I’m 52 now and struggle massively to keep my weight down

Who knows where it’ll stop but I’m sure the doc said 250mcg was the maximum dose.

Interesting point
I read that some people have linked the thyroid issue in my generation to the Chernobyl fall out
I probably glow in the dark too 🙂

are you 90-100% good at taking the tablets?

Apart from the first year I have been pretty good. Quickly learnt that I should take the tablet at the same time every day and have stuck to that routine consistently. The only major slip up I’ve had was October/Novemeber last year where I went away for a weekend, came back and left my tablet box in my bag. Went four day without taking a single thing. Would nornally have had my bloods taken about a month before just to amke sure they get to my consultant but left it as late as possible to try and avoid any issues.

Other meds and food can interfere with the absorption from the gut and mean that you get a variable effect

There was a long period of time where I was controlling my intake of iodine. I think it was on the Thyca website I read that it had an affect. I was pretty strict with that during treatments and for a fair while after but slipped back into normality after a while. I will have another look into this though.

I have a phone appointment with my doctor later so I want to ask him about my levels and ideally get all of them since diagnosis. I can’t quite remember my levels other than knowing they were fine.

Apparently thyroxine should be taken with water at least half an hour away from other meds and food.

I’ve always been told that taking other meds with my tablets is a bad isdea especially as some can be counter productive. I’m not so sure about the food unless it was rich in iodine I suppose.

I would really recommend signing up to the Thyroid UK forum and looking through their site too, as CG suggested. We have found both to be hugely helpful (my wife had 2/3rds of her thyroid removed 4 years ago and we´ve had to do a lot of research into her treatment since). Thyroxine supplies you with T4 which your body then has to convert into T3. Some people end up with conversion problems and sometimes can do better on a T4 / T3 combination and sometimes even T3 only.

I’ve always been told that taking other meds with my tablets is a bad isdea especially as some can be counter productive.

I take mine 1st thing in the morning before I go out running and breakfast
I also take Lansoprazole and Linsinopril at the same time, the doc said nothing about not taking them together

I’ve been on 100mcg a day for the last couple of years but to be honest haven’t noticed any effects. But then I had no symptoms it just came up as part of a routine health check. My T4 level is now within normal limits. Only thing my doc said was take when you get up at least 30 mins before food or milky drinks

Taff – have you tried taking thyroxine at bed-time, assuming you’re taking it in the morning? Also it should not be taken on the day that you have a blood test.

jota180 – tell me about weight gain! I’m wondering when mine is going to stop, it really is distressing. 🙁

Also it should not be taken on the day that you have a blood test.

Why is that? Never been told that before?

have you tried taking thyroxine at bed-time

No not tried that. Would be a little hesitant doing that as never go to bed at the same time. Could be a couple of hours in it. I used to take it at the same time when I came home from work at one point but can;t say I remember there being a difference.

Some interesting reading and some advice I’ve never been given.

I had a total thyroidectomy 11 years ago due to a benign growth, been on 150mcg thyroxine ever since, inital frequent blood tests changed to annual, 90% of the time it take the tablets in the morning with enough water to wash down but not any larger amount, followed by breakfast about 20 minutes later. I’ve always taken tablets on the morning of a blood test.

Could be a couple of hours in it

I don’t think that’s really an issue TBH, the way I understand it, the levels are just maintained with each dose it doesn’t deplete overnight or anything
I get up anywhere between 5 and 10 so ………….

Jota, you’re quite right, it won’t get depleted overnight but two difference doctors have recommended I take tablets at approximately the same time ever day. I think a couple of hours isn’t too bad but if you take them in the morning not taking one until the evening is ideal.

Just got off the phone to the doctor. He was saying that my TSH was high but still acceptable in his eyes and the T4 not too bad in relation to previous levels. TSH is currently at 2.56 where as it’s its normally been between 0.08 and 0.5 but I have had other peak to about 1ish which is when meds have been increased. T4 levels are currently at 14.5 but are normally at 16 and have been pretty consistent.

He’s said he would be surprised if the side effects are thyroxine related as it’s only a small increase in his eyes and has said that I should continue with the full dose as I’m now back on 3 monthly checkups

I’m sure it’ll come right Taff

Look on the bright side, at least all your prescriptions are now free
It wouldn’t have bothered me much before but in the last couple of years, I’ve ended up on all sorts of regular pills and they end up in the free bin too 🙂

although, with a name like Taff, maybe it isn’t an issue 🙂

I was getting a few other prescriptions and they were all free. The mrs hates the fact that I get things other than thyroxine free.

Can I direct you to pages 7 and 8 of this thread:

http://singletrackworld.com/forum/topic/post-viral-fatigue

All I know is that I can’t trust my GP to make me better so am taking control and experimenting. My argument is that I’ve been told that my levels are fine but I do not feel fine so got fobbed off. Not good enough! I’ve had 2.1/2 years of crap health and want my life back.

Again, sign up to the thyroiduk forum, loads of info there.

Thanks CG, a lot to digest and not enough over a lunch time. Something that stood out was this:

permanent brain fog, forgetting words and struggling to finish a sentence

. I’m glad I’m not the only one

permanent brain fog, forgetting words and struggling to finish a sentence

Oh, I thought it was my age
Best look into it more

I was under the impression that taking levothyroxine made people lose weight, I also thought it had a reputation of abuse by some people in this respect.

Are people saying that they are putting on weight, or really struggling to lose it as a result on the Thyroxine, or it is just the effect of the underlying hypo thyroidism?

I can’t say I ever noticed any positive or negative effect on my weight.

You put on weight because your metabolism isn’t working as it should. With hypothyroidism, your whole body has slowed down so, for example, your body temperature drops, as does your pulse rate etc.

When I first became unwell, I was size 10. I am now size 18. Not eating more, not that I ate much anyway. However, it is thought that certain medications such as AD’s, HRT, also gluten, interfere.

or it is just the effect of the underlying hypo thyroidism?

yes

jota180 thanks that what I thought.

Last summer I was doing 300 miles a week on the road bike and still putting weight on

jota180 – must be worth a try of leaving a big gap between your various meds? Have you G’d your other meds for other users opinions? Might be worth joining the thyroiduk forum, they’re very helpful and knowledgeable on there. 🙂

Are people saying that they are putting on weight, or really struggling to lose it as a result on the Thyroxine, or it is just the effect of the underlying hypo thyroidism?

If you’re taking thyroxine at the correct dose you should be no more susceptible to weight gain than the next person.

maybe have a look C_G – thanks

the other 2 meds are quite new to me, I turn 50 and end up with high blood pressure and a hiatus hernia 🙁

Are people saying that they are putting on weight, or really struggling to lose it as a result on the Thyroxine, or it is just the effect of the underlying hypo thyroidism?

If you’re taking thyroxine at the correct dose you should be no more susceptible to weight gain than the next person.

Tend to agree.

Thyroxine level effects weight indirectly in that it effects both the rate at which you burn fuel and your appetite. For the most part those who are underactive see their burn rate slow down more than their appetite and so gain weight and those who are overactive see the opposite effect, but I fairly regularly see exceptions to the rule.

Most people on replacement feel better if they are slightly over replaced rather than slightly under replaced. That may in part be because people tolerate being slightly hyper better than they tolerate being slightly hypo.

It also probably has something to do with the fact that we don’t usually know what normal for the individual is, only what the normal range for the population is. If you aim to get T4 in people on replacement in the top third of the normal range for the population there is a good chance that you are equalling or exceeding their body’s preferred level but in some individuals you may have to fine tune this a bit. Hope that makes sense.

T4 has a half life in the blood of 3-4 days and in any case acts as a floating reserve to be converted into T3 which then does most of the work. That means that you could take a double dose of thyroxine every other day, or a triple dose every 3 days and see no difference in overall function – please note that I don’t in any way recommend such an approach – but what this does mean is that you shouldn’t be worried if you take it an hour or two earlier or later.

I have no idea why anyone would be told not to take their thyroxine on the day they have a blood test. It can interfere with some thyroid scans but I know of no issue with the blood tests.

Sent a letter to the hospital last week for a copy of all previous blood results… got a massive envelope in the post today! Wasnt expecting it to be that simple. Lots to digest now

Result! Have fun with your bedtime reading. 🙂

Finally had a decent bloody test. T4 levels have come back within the correct zone [19.9] and my TSH levels are really low [<0.1] which is the first time since November 2009. So on paper I’m pretty happy but still feeling fluffy headed, tired and have a loss of concentration. Consultant said he hasn’t come across this before and says he doubts it’s thyroxine related and was surprised when I said I’ve been in conctact with others on the matter. He was happy with the bloods but did say to ring him in two months time when my thyroxine has hopefully settled if I’m still having issues.