Hi I am after advice regarding tablets. I have suffered with an interactive thyroid for 18 years now and have for a long period been on around 125-175mg. I'm currently on 150mg.
Recently my doctor wanted blood results as part of routine checks and as a result he wants to reduce me down to 100mg which I'm really nervous about. I would rather go to 125mg and then Test again.
I called the surgery today for actual results and they were the following
Free T - 6.7 (range 3.1-6.8)
Tsh - less than 0.02 (range 0.3-5)
Should I be challenging that maybe I don't drop so much or does a reduction by 50 seem realistic?
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Bellsonit
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A reduction by 50 mcg is scandalous, actually! I would most definitely challenge this. I was on 150 mcg and my doctor dropped my dose by 50 mcg, the result was that the shock to my system made me have several mini strokes within 8 weeks. That is far too much, even 25 mcg would be pushing it. The best course of action would be to drop it by an average of 12.5 mcg a day by taking 150 one day and 125 the next. I suggest you go back to your GP and tell him that you have researched the matter on an NHS approved forum, and it was recommended to do a more gentle and gradual reduction.
Although your free T3 (is it T3? The range suggests this.) is near the top of the range, it is not over the top, and to be honest it matters more how you are feeling, rather than blood numbers.
Thanks so much for replying, and I appreciate the advice. I tried to ask at the time if I could just go 25 less and he said no and that we would review bloods in 4-6 weeks post. But then I hadn't done any research like now. It felt drastic to me too and as I've managed to lose 3 stone through proper dieting (slimming world) I'm so worried that going down so much will cause me to gain and having 2 young boys I really don't need to be any more tired.
I feel fine though a bit drained as I had a nose operation a few weeks back so on antibiotics and pain killer so I put the tiredness down to that and not thyroid.
Prior to that I was fine, had plenty of energy post weight loss, and certainly no symptoms of being over replaced ie no palpitations, weight loss (it's stabilised since I hit my target weight, actually I've put on 3lb...)
Do you think I should see another doctor or challenge him referring to this site and NHS recommending the gradual change? He's a really great doctor normally and have a good relationship with him but it feels like such a drastic change when over the years when I've needed an increase it's only ever been +25mg.
I don't understand the numbers if I'm honest, I just know with one I'm below range and with another I'm just within, I'm assuming they look at tsh??
When I asked for results I asked about T3/4 and she said that wasn't there just tsh and free t?
Thanks again, it's reassured me I'm not being overly worried
There's no such thing as 'free t'. It's either 'free t4' or 'free t3'. But, as marram says, the range suggests FT3 rather than FT4. Who gave you the results? The receptionist? They know nothing! She must have been reading it wrong.
Anyway, if it's FT3, all to the good, because that is the most important number - although doctors only look at the TSH. Which is stupid, because once you are on thyroid hormone replacement, it doesn't matter how low the TSH goes. A low TSH certainly doesn't warrant a reduction in dose when the FT3 is still in range.
If it were me, I would refuse out-right. I would not reduce. And, I would tell my doctor that I will self-treat if he insists - in fact that is what I have done, in the past, and now I self-treat. You know it's not going to be good for you, and it's your body, your health and your life. You have to live with the consequences of his decision, he doesn't!
How would I self treat? Would that mean obtaining the meds myself? Or just up the dose from my prescription as I'll be getting less?
I find it all quite confusing (sorry if thats frustrating to hear), so T3 should be the focus for the doctor not TSH?
I remember when I was pregnant they told me I didn't need an increase but I looked at the consultant from the hospitals range and it suggested I did so I challenged it and they upped me but they took me back to 150mg once I'd had the baby.
So it does seem to me that they aren't looking at the results in the best way?
Is it worth mentioning that I was originally diagnosed when I had a goitre, which came when I was 18. Does that mean I had hashimotos? Would that have any bearing to levels now?
No, having a goitre doesn't automatically mean that you have Hashi's. You would have to have your antibodies tested to know. Would it have any bearings on the levels now? Difficult to say. Possibly not.
But, if you knew you had Hashi's, you could do things for yourself, like going on a gluten free diets, and taking selenium, to lower antibodies, and delay the complete destruction of the gland. It wouldn't make any difference to the treatment you got from the NHS, because the NHS doesn't know what to do about antibodies.
The FT3 should most definitely be the focus. The TSH is such an unreliable test, so many things can affect it, and it rarely reflects thyroid status, or how you feel. What time of day did you have the test done? Was it fasting? TSH is much higher early in the morning and fasting.
If you were self-treating, you would have to buy your own thyroid hormone, whatever you chose to take. But, as you seem to be doing well on levo, there would be no reason to change.
That would have a lot of effect, yes. It would be better around 8 o'clock, but maximum 9.0. And it would have been higher if you'd fasted over-night and had breakfast after the test.
To back you up on what? He's just going to say your TSH is too low, and you're going to have a heart attack etc etc etc. I don't think these tests prove anything. Not to a doctor, anyway.
Sorry I mean that since there are alot of views on a- the drastic reduction on dosage, and b- that his focus shouldn't be purely on TSH. Marram mentioned on here about site being NHS approved so thought maybe if i took this post that it might help alleviate any awkwardness of him thinking I'm telling him how to do his job.
Sorry i'm a worrier and always worry about offending people to the point of sacrificing how i feel...
Oh dear! That's not good. There comes a time when you just have to risk offending people - especially when your welfare is at stake.
The trouble with this post is that it's been answered by a load of people who - admittedly know a lot more than your doctor does about thyroid - but aren't qualified medically. I'm not sure he would accept that. If fact, I'm pretty sure he wouldn't!
I think you just have to stand your ground. As you felt well at that level, before your op, then I see no reason why you should be forced to drop your dose. Did you ask him why he wanted to lower it?
OK That old chestnut! Well, my personal belief is that low TSH will not cause osteoporosis. Consistantly over-range FT3 will increase your risk, but won't automatically mean you will develop it.
You're more at risk of bone problems if you have low FT3. But, tell him that if he's worried about your bones, to give you a... what is it? Dexa scan? To have a look. Also to test your vit D and calcium to see if you're low. If you maintain good levels of vit D and magnesium, your bones should be alright. And, the rest of you won't have to suffer!
Oh' as Greygoose says' that old chestnut''. He is parrot-phrasing and it's a load of rubbish.
Having a decent, optimum dose of thyroid hormones enables us to not get osteoporosis.
I'd refuse and say you will wait till your next blood test and then get the very earliest appointment, fasting and allow 24 hours between your last dose and the test.
It's so frustrating, I wish I'd stood my ground more. I'm definitely going to make an appointment as reading all of your very helpful comments has given me confidence to challenge especially now I have a better understanding of the levels etc.
He's such a great doctor normally so I hope it doesn't make things awkward. But you're all right it's my health not his and since I don't have any symptoms of hyper, in fact more the opposite it seems ridiculous to change.
Let's face it, the rarely know how best to treat us. Ignore our clinical symptoms. Don't care how bad or how many clinical symptoms we have.
Prescribe the lowest of doses. (we used to get between 200 and 400mcg when NDT was the only prescription hormone replacement) now our doses are so low to 'keep' the TSH within a range and usually it is towards the upper end rather than 1 or lower.
Through their interpretation (they must spend all of five minutes being trained in hypo) they only refer to the TSH. The TSH varies throughout the 24 hours of the day. Is highest a.m. and lower p.m.
One doctor said that due to their fixation on the TSH we could develop other more 'serious' illnesses. Endos or other doctors fail to appreciate this danger or are unaware of it.
Wow that's a scary thought. Trouble is gp's are just that, they can't be experts in everything so maybe with chronic conditions like this we should be referred to a specialist every once in a while. I literally had a couple of appointments 18 years ago, then it was left in the care of the GP to manage and it seems they have a limited understanding of things.
Dose adjustments are usually in 25mcg increments. 50mcg reduction seems excessive. It appears your GP is trying to force your TSH >0.35. There's no need to do so, you aren't over medicated because FT3 6.7 is within range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.
Oh thanks for this explanation. I will certainly do that. Feel really worried and have been a bit naughty in terms of have continued with my old dose as still have a couple of weeks left until I got to the bottom of this.
You say you had an operation recently. If this was with with anaesthetic then your levels of B12 likely to have dropped
Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at VERY good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells
Make sure you ALWAYS get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.
Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.
When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed
If you can not get GP to do these tests, then like many of us, you can get them done privately
Blue Horizon - Thyroid plus eleven tests all these.including import antibodies (£99)
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
Dropping by 25 mcg might make you better as your fT3 is highish with a low TSH which suggests you will be producing 'rT3' which can block the action of T3. I wouldn't worry about a 50 mcg drop provided your doctor is willing to bring it back up if your blood tests go low or you feel worse. They really need to measure fT4 as you are taking levothyroxine. I wouldn't get hung up about trying a 50 mcg reduction but it is essentail that the doctor accepts this is not a one way street, that they are prepared to take symptoms into account.
He did say to be re tested in 4-6 weeks. I would rather be more cautious and drop 25 as worried it will exasperate the symptoms rather than gradually take the levels down.
Can I ask the phlebotomist to mark the results to be tested for t4 aswell? Or would they automatically be tested for that?
Usually they check fT4 instead of fT3. You could ask the phlebotomist and they could ask the doctor if necessary. Are you getting symptoms at the moment? If so you would probably do better with some liothyronine rather than high doses of levothyroxine, but of course it is very difficult to get liothyronine prescribed in a reasonable dose (around 20 mcg).
Hi I don't have any obvious symptoms, if anything I am tired constantly but I would say thats more down to having 2 boys under the age of 4... I have lost weight though that was through trying - and it was a steady loss through slimming world and breastfeeding for over a year, I definitely dont have palpitations and in terms of sleeping definitely don't have trouble sleeping, in fact most evenings by 9pm I'm struggling to stay awake, that said if one of my kids wakes me up post 5am I do struggle to sleep again because of general day to day worries (finances & getting made redundant so not anxieties as a result of being hyper). I don't really have cycles, but they have been irregular for many years, and I have an IUD fitted in the last year that releases progestogen so that can stop cycles. So I kind of feel that I'm probably normal aside from other factors ie life contributing to symptoms? To be honest the fact I'm tired and sometimes struggle to remember what I'm doing from one minute to the next because I'm so busy makes me even more worried about dropping my dose so drastically.
I've never heard of liothyronine? What would that do?
Should I therefore be asking for another blood test earlier in the day and fasting before it? Before we adjust the dose and for them to check for T4?
Please do forgive me, but I have to take issue with "I wouldn't worry about a 50 mcg drop", that is a reduction of 750 mcg over the week, which is a huge drop. Exactly the drop which caused me to have several minor ischaemic strokes 8 weeks later! And my cholesterol level rose fron 4.7 to 9.7 in the same period. When titrating the dose for the thyroid, it is very important that it should be done gently, in small increments. No more than 25 mcg daily, and preferably starting with alternate daily dosing.
The FT3 is not highish, it is within the range. Unless there is absolute evidence of the level which was normal for this person before being hypothyroid, then it is more important that she feels well, rather than be required to conform to an arbitrary 'average'.
Having said that, it is possible that she might feel a little less tired with a small drop in the dose, although it takes time to revover from any surgical procedure and that could easily be the real reason.
It depends on the status of the patient, particularly if they are elderly or have a heart condition and relates more to increasing the dose than reducing it. I don't know of any link between reducing thyroid dose and a stroke. Could it have been coincidence? Although hypothyroidism leads to congestive heart failure in the long term stroke is usually associated with over treatment.
If the dose was reduced by 50 mcg the effect would be a 25 mcg reduction after one week, 37 mcg after two weeks etc. Doctors tend to be too slow to adjust doses often leaving patients hypothyroid (or occasionally hyperthyroid) for quite some time. It's quite reasonable to start an otherwise healthy patient on 100 mcg and then take it from there. However, it is important to abandon the increase or decrease if the patient reports significant symptoms.
Having a quick look at your profile I wouldn't advocate big dose changes in your case as you have been hyper (and hypo) for quite some time with pretty poor care on the whole.
jimh111: Evidence that ischaemic stroke is associated with hypothyroidism.
I was on 150 mcg of levothyroxine for 23 years, and although I still had significant symptoms such as muscle pain, excess weight, I was generally able to function, having been told that was as good as it would get once the thyroid had been removed. My cholesterol was 4.7 and I had no evidence of heart problems. No atherosclerosis, and in fact I had a medical check for occupational health insurance in January 2005 when I was 60, and got a very good report, being told that I was remarkable healthy for a 60 year old with almost no risk factors for heart attack or stroke. I had no plans to retire.
One year later, after I had moved from Hertfordshire to Lincolnshire to be nearer my family, my new GP reduced my Levo from 150 to 100 solely on the basis of my TSH. 8 weeks later my cholesterol was 9.7 and I started having mild ischaemic episodes.
(Over the next year my health went through the floor and I was seriously considering getting a wheelchair.)
No I don't doubt a connection. Long term hypothyroidism causes lots of cardiac damage from high cholesterol and lipid levels. Over a short term too much hormone is more likely to trigger a stroke than too little. The change in your cholesterol levels is remarkable, mine only changed by about 2.5 when going from zero to over 300 mcg levothyroxine and I thing this is typical. I assume your cholesterol tests were done when fasting as they are not reliable otherwise. The reason I initially suggested a 50 mcg reduction was OK is that with a 25 mcg it is often difficult to notice much difference in symptoms.
In summary, for a young healthy patient changes of 50 mcg are fine, it's better to get a hypothyroid patient appropriately medicated sooner. If there are sings of thyrotoxicosis then again it's better to reduce their dose a bit quicker. Bells omit said they felt hypothyroid and so I suggested they might ask for just a 25 mcg reduction.
Given your symptoms on 150 mcg it would seem that you were already undermedicated (caused by blood tests no doubt) and you had a 50 mcg reduction when you might have already been 50 mcg under.
Certainly on 150 mcg I was not over medicated, as my new doctor told me. I always have all my blood tests early in the morning without eating breakfast.
I feel very strongly that being hyper for so many years, has led to either a situation where my 'normal' level of thyroid hormone requirement is higher than average, or there is some tissue resistance, as noted by Dr Lowe. Certainly the long term effect of that reduction seems to be that I am now unable to convert T4 to T3.
Even after I persuaded my GP to increase my Levo gradually to its previous level, on 150 mcg my free T4 went up to 29 (range 10 - 24) and my T3 was 1.2 (4 - 8) so clearly not much conversion going on there! Yet my TSH was 0.4, which showed, said the GP, that I was overdosed. True, I was, but it was not making me feel hyper.
I am now thriving on T3 only, and have had open heart surgery without blood, to replace my bicuspid Aortic valve (congenital) and to repair an Aortic Aneurism. I was out of hospital five days after the operation. And now I had better not hijack this post any more!
It sounds very much like a 25 mcg reduction would be more appropriate as you are just about doing OK. Liothyronine is L-T3 the active equivalent of levothyroxine, it is very difficult to get a prescription. I would contact the doctor again and say you are concerned about the 50 mcg reduction as you just struggle now.
I wouldn't bother getting a blood test earlier in the day, or fasting. This is really a fiddle to get an initial diagnosis, to make your TSH look higher. The TSH falls a little early in the day and then stabilises. If you start having early morning blood tests it will be a little more difficult to monitor the TSH as you will never know where on the early morning slope your TSH was. Was it near the top of the slope or the bottom? Just have the blood taken any time after 9 or 10 am and don't worry about it. Get the doctor to take note of your symptoms as this is more important.
Thanks for the advice, will definitely call the surgery tomorrow. I wonder whether I should have held off having the test since it was only about 5 days after an operation under anaesthetic and was on strong antibiotics and painkillers. Not saying it would directly affect thyroid but my body would have been a bit out of whack.
Hi all thanks so much for your help and advice. It gave me the confidence to raise it with the gp (albeit I did do it on line through a medication review as I'm a wimp) and he called to agree that he would go back to 125mg so it's only a 25mg reduction not 50mg. I feel ok with this and will scrutinise any change in symptoms because I'm pretty sure that my tiredness is really down to the kids as they keep getting me up around 6 though I generally am struggling to stay away past 9.30 most evenings though could be post op too?
Hi it's been about 6 weeks since my reduction and in that time my legs and fee now constantly ache with pains in my buttocks and legs and feet hurting even after sleep.. I've put on 10.5 lbs in that time too. Am i going mad or is the medication reduction causing that much of s problem?
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