TSH target on therapy for primary hypothyroidism = 0.3-4.5 Mu/L
The above are my blood results after using Levothyroxine 100mg for 3 weeks & 125mg for 3 weeks
Since being on tablets I feel terrible. I am sleeping 10 hrs a night and having 2 hr nap in the afternoon. My muscles are aching every day like I have run a marathon. At night my feet are on fire, I wake up with numb hands and arms followed by pins and needles
I barely eat but am not losing weight
Got blood tests back and doctor reducing tablets back to 100mg and says there nothing he can do to help me any further
Told him I feel terrible on tablets and can't concentrate, feel so down and struggling.
Asked if he would trial me on Armour and he went mad saying it is illegal and under no circumstances will he discuss this further & come back for blood test in 2 months time. Asked him to refer me to specialist which he agreed to.
Are my results looking like I need to reduce my dose and if so why do I feel worse than I ever have done.
Any advice you can give me would be very much appreciated. I feel so alone and at a loss
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Kc02
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Hi Kc02, welcome to the forum - although I'm sorry you need to be here.
There are a few things I Don't understand in all this - and, I suspect, an awful lot that your doctor doesn't understand! Firstly, were you started on 100 mcg straight away? And then upped to 125 after three weeks? And then down again to 100 after three weeks? If that's the case, I'm not surprised you Don't feel well!
100 is rather a high starting dose - some people do do well on it that high, but not everybody, it dépends. I think maybe 75 would have been better.
The dose should be increased after 6 weeks, not three. It takes 6 weeks for your body to sort out your initial dose, then a test, then an increase, then wait 6 weeks again. Until all your symptoms are gone! Not until your TSH is in some arbitary spot that makes your doctor feel satisfied with his work. No. We're not here to indulge in doctor-pleasing! lol
Why didn't he do the FT4? It's very strange to see the FT3 and not the FT4. That would have helped us see how well you're converting. Could be that you have a lot of T4 in the blood but can't convert it. That will make you feel ill.
I Don't know where you live, but the only country I know of where NDT is illegal is France. In the UK, it's perfectly legal but doctors know nothing about it!
Your doctor also doesn't know that one shouldn't dose by the TSH alone - which is what he's done here. It would take me a week to give all the reasons why that's a bad idea, but let's just say that the most important number is the FT3 - and since he's tested it, why not be guided by it?!? He's messing up your metabolism by jumping around like that. I've met some bad doctors in my time, but this one takes the biscuit! Can you change doctors?
So, to sum it all up, your doctor knows nothing about thyroid! And there are a lot of things he could do to help you if he would only take off his blinkers and learn a few thyroid basics!
So, what can you do? Well, if I were you, I would do as he's said for the moment : stay on 100 until the next blood test. Things could have changed a lot by then. Or, if you really feel too bad try lowering your dose to 75 and stick with that for two months. What you need is to stick with something long enough for it to work, not chop and change every three weeks.
Make sure you take your Levo one hour before breakfast - I presume you take it in the morning - and before drinking anything other than water. 2 hours away from other medication and suppléments, and 4 hours away from iron, calcium or estrogen (should you be taking any of those).
Make sure you are eating a nutrition-rich diet - plenty of protein and fat, fresh fruit and veg, some fibre and carbs, and Don't skimp on the salt! Especially in this hot weather.
Get plenty of rest - this is not the time to be going to the gym! Just a bit of gentle walking and your usualy household activities.
Before you get your next test, ask for vit D, vit B12, folate, iron and ferritin to be included. All of these need to be optimal for your body to be able to use the hormone you're giving it.
On the day of the next test, make your appointment as early as possible - before 9.0 am - Don't take your levo for 24 hours before the test, and Don't have breakfast, that will lower your TSH, and you Don't want that.
And Don't forget to ask for a print-out of your results! You always need to do that so that you can keep track of your own progress - or lack of it! Then post them here and someone will be able to advise you.
How can having breakfast lower your TSH? My endocrinologist told me it takes a month to change your TSH based on feedback from T3 levels - hence 6 weeks to see reliable change.
I have always had bloods after breakfast, dinner, whatever and it's never been a issue!
Just done a little research of my own (I am a academic researcher).
It looks like there is a natural diurnal rythem but in hypothyroid patients the peak in TSH is in the late evening and trough in the afternoon. It seems quite complex and one study showed that taking blood at different times of day resulted in 6% of patients with sub-clinical hypothyroidism being reclassified as 'normal'.
My take home from this is that there isn't a straightforward answer.
Regards food, I couldn't find any literature on how eating might impact on TSH - other than a study on Trout! It does impact on absorption of thyroxine, which could impact on blood findings so fasting admin of Levo is best - if this is done consistently. Otherwise you're setting yourself up for a blood result that could be unrepresentative of your usual levels, I.e. If you usually take it at night.
Having another Researcher on board is good. There are quite a few. However I would like to mention that Diogenes - mentioned above and a member of this forum - is a Doctor who was involved in the creation of the TSH test and the latest T3 one. His on going work includes presenting the unreliability of the TSH test. The paper is now available. Perhaps you have already come across it in your research.
Could it be that advice is often given here to help people receive a diagnosis or to prevent a reduction in medication when someone is well - hence the suggestion that the TSH is best tested early in the morning having fasted and not having taken the dose of T4 or whatever. I think people are just trying their best for the person asking for advice.
Thank you so much for your reply and understanding. It is a massive help to hear I am not going mad. I take 50 levo in morning with water around 7 am and 50 in the afternoon around 2pm. By 4.30 I am shattered and heading for 1-2 hr sleep! I try not to eat more than 300 calories a day or my weight goes right up, I try to do at least the recommended 10,000 steps a day to keep my weight down.
My doctor won't discuss why he started me on such a high dose, he increased it after 3 weeks as I was sleeping up to 12 hrs a day and 16 straight hrs at weekend.
I feel so out of my depth and literature out there quite confusing so appreciate your advice xx
As far as I know, there is no advantage to taking your Levo in two doses. It's a storage hormone, and you could take your whole dose once a week if you wished. It's T3 or NDT that people take in more than one dose.
Oh, gosh, I know I'm going to get shot down in flames here, but you aren't eating enough! 300 calories isn't enough to keep my dog alive! And that, I truly believe, is why you're feeling so tired. We're in a the middle of a heat-wave here, and I've completely lost my appetite - but I feel so tired! Not eating does that.
The weight you are putting on, isn't due to what you are eating - and I bet not eating isn't making you lose it, either! But what it is doing is making you low in nutrients - you can't possibly have optimal nutrients on so little food! So, all the more reason to get them tested, as I suggested. Your body cannot even use the T3 you have if you are Under-nourished.
And exercising - 10,000 steps or whatever it is - isn't going to make you lose weight, either; it's just using up your precious calories that you aren't getting enough of. Calories Don't just serve to make you put on weight, you know, every bodily function needs calories, how can you function correctly without enough calories? It's not calories making you put on weight, it's the fact that your body isn't using the hormone you're giving it. And that could very well be down to mal-nutrition. You must eat more if you want to get well! Not suggesting you stuff your face with sweets and biscuits, but plenty of protein and good fat, fresh fruit and veg, some carbs and some fiber - and Don't skip on the salt!
You are not the only one out of your depth here, your doctor is drowning! He won't discuss your dose because he doesn't know anything about it and is scared he's in the wrong. You must get away from this man quickly, he isn't going to make you well.
I hope that the endo is more enlightened, but you never know. So, you've got to learn to help yourself. And you must start by eating more! OK?
I know you are right, I am not eating enough. Think it was my way of trying to take some control and make sense of all of this. I will take your advice and try to eat better. I am taking multi vitamins but know this is no compensation. I am not sure why doctor told me to split the dose, from all the feedback and when I have spoken to him (over the telephone, never had a face to face appointment) he knows very little. Thank you for the fantastic advice and support. I will keep reading up on this so I can have a more informed discussion with the specialist.
I know you have all been in the same place as I am right now and know how much it means to get some good advice. I am feeling so much more positive and looking on the bright side - at least I am feeling warm again and not wearing cashmere jumpers when everyone else is in a t-shirt so that is a good sign 😎
Well, I'm glad you're feeling some relief, anyway. I do know what you mean about taking control. You can take control, but starving yourself isn't the best way to do it.
No, your doctor really has absolutely no idea what he's doing. He might have read snippets here and there, but he has no solid, basic knowledge. And if he won't even discuss it with you, he's a very, very bad doctor!
A multi-vitamin isn't much use. It doesn't contain enough of anything to tackle a true deficiency, and it might contain things you Don't want! Like calium and iodine.
It's far, far better to get nutrients tested so that you know exactly where you are and how much you need to supplement - not too much and not too little. So, do try and get that done.
Yes your dose is probably too high. You should usually be on a dose for 6 weeks before you have bloods taken though since it takes that long for your TSH to reflect your T3 levels - it's like a thermostat. TSH takes a month to change in response to a change in T3.
Your TSH at 0.08 is low and you're probably experiencing hyper symptoms - which can feel like hypo symptoms weirdly. I was convinced I was hypo at one point only to find my TSH was 0.04! Any quick changes in your levels will make you feel rubbish!
My TSH is now 0.42 at the bottom of the reference range and I'm tip top! That's on levothyroxine alone - it is possible to be good on it, it just takes time and perseverance to get it right.
Don't rush to self medication with armour until you've found the TSH sweetspot. It can take a while and if your doctor doesn't seem to understand then try to get a referral to an endocrinologist. Mine said TSH below 2 and T3 in the top third of the range is optimal.
I should also say that if your TSH is already at 0.08 you could ask your GP to lower your dose - maybe even a alternating 100/125 mcg (100 one day and 125 the next). You can try all sorts of patterns since thyroxine has a long half life - it stays in the system for quite a few days. I take 100mcg 5 days a week and 75 on the weekend - bizarre but it works!! Your GP might not understand this so get him to check it out.
I doubt her dose is too high, because her FT3 is in range. Dosing by TSH is stupid and dangerous. A suppressed TSH does not indicate over-dosing, an over-range T3 does. Besides, if you read what Kc says, her doctor has just lowered her dose to 100.
I realise you have your own opinions on these things - such as when to test your TSH... But please Don't tell people they're over-dosed just because their TSH is low, because that just isn't true.
Damn! Just wrote a long reply and my stupid computer lost it! i'll try again!!!
So, yes, I did suggest she lowered her dose, but not because I thought she was over-dosed but because her body has been stressed by all the chopping and changing. It would be better if she could stay on the 100 but if it's really too hard, then go down a bit and start again. But, she needs to be on it for a decent length of time - 8 weeks, not 3 weeks.
I too have done a lot of research and have a lot of experience. And the thing about eating lowering TSH has just been discovered - I can't remember who shared this with us, I think it was Helvella, and he knows what he's talking about. I'd trust him rather than any endo I've ever met.
"My endocrinologist told me it takes a month to change your TSH based on feedback from T3 levels" Not necessarily true. T4 can - and often does - lower TSH. The TSH can jump about all over the place - especially if you have Hashi's. The TSH is a most unreliable test, and it's doctors and endos dosing by the TSH alone that is keeping people ill. On here, we would never tell anyone that they're over-dosed because their TSH was low, because it's rarely true. You need to see the FT3, and hers isn't over-range. It's high, but she probably isn't absorbing it correctly because of mal-nutrition.
TSH sweetspot? There's no such thing. Given that it changes throughout the day, how can you say which level is making you feel well? It's the level of T3 - which doesn't jump around - that makes you feel well. TSH doesn't do anything except stimulate the thyroid. It can't make you feel well, and it can't make you feel bad in and of itself. And when a person is on a full replacement dose, the TSH is redundant, and that's why it becomes suppressed. We just Don't need it anymore. Kc's T3 is up the top of the range, therefore the pituitary doesn't need to make any TSH. It doesn't mean her dose is too high. Forget the TSH, it is virtually meaningless once you are on thyroid hormone replacment.
This is a support group, but I didn't feel your remarks were very supportive. You didn't even read her question correctly. And I feel you are parroting your endo with all your talk about the TSH, which isn't helpful for anyone.
I am sharing an experience which is positive - I feel better now that my TSH is at a stable 0.42 and my T3 is towards the top of the reference range.
There are lots of people talking about how difficult it is to feel better so I am saying that yes it is difficult, it does take time but it can and will happen with proper management.
I agree there is absolutely no point in looking at just TSH, especially when you're trying to get a dose right.
I don't see why my contribution is any less valid than yours.
Furthermore, I trust my trained, specialist consultant a whole lot more than anyone on a forum.
I work in research and I am extremely aware of how easy it is for people to be manipulated by quacks when they are desperate.
The medical profession and NHS aren't perfect but I'll take their opinion over something I read on the internet any day.
Just to say, I'm on T3 only and my TSH is, on average, very slightly higher than when I was on no medication at all. But I don't have primary hypo and it seems that my TSH doesn't vary by more than 0.5 what ever I do.
Yes you are right TillyKay - this is a support group and GG - greygoose - is a long serving and very respected member of several years standing. She is one of the many characters that I have observed over the years that I have been on this forum and have enjoyed her common sense - humour and not least her knowledge.
I don't think you annoyed her for one minute - she is above all that. When you are a regular poster you become immune to comments outside the box - we are just interested in getting the experiences across in order to help others
Bullying is not her style either - like you she has opinions based on research and experiences.
Perhaps you would like to complete your Profile so we know more about your experience - easy for everyone to access and learn from - now that would be positive. Also means that you do not have to repeat yourself on threads about your condition.... I notice you have recently joined.
Am glad you have a good Endocrinologist - that is not the case for 1000's on this forum .....
Thanks Tilly, I have lost faith in my doctor at the moment and bewildered he has told me he can't help me any further and come back in 2 months time for more blood tests. I did get him to refer me to see a specialist so hoping that I will be able to talk to someone who at least knows what they are talking about. I live in Cumbria so hoping there is a good specialist not too far away. Having said that I would travel to other side of the world if it meant I would feel normal again x
You definitely should eat more than 300 calories too - that's dangerously low intake. It'll be difficult to unpick what is caused by your thyroid and what is caused by undereating unless you address that. I'd be on the floor with that little food!!
I hope your endo is good. I see one in Manchester and they are excellent. Probably a bit far for you?
In that case it is Dr Higham at Wythenshawe who I see. She also works at the Christie. I highly recommend the team there! X
Please get your ferritin, vit d and folate and B12 checked and post your ranges. Your DR is appalling, hope you get better service from specialist if not this website can provide list of better doctors though you might have to travel and pay to see one.
Your thyroid wont fuction very well if your under eat and you will gain weight if you eat too little. Also you need to rest plenty when acutely ill like this.
I don't understand why you are taking the Levo in split dose. It is usually better to take whole dose either on waking. Leave an hour after taking minimum before having tea, coffee or breakfast.
Or some (like me) find it better to take at bedtime - but as this can have the effect of slightly increasing the effectiveness of your dose due to better absorption, perhaps best you don't try that yet......
I'd ask him to show you where it says it's illegal to prescribe armour! It's not. Looks like your free t3 is pooling. Have you had your adrenals checked?
This is interesting ,I've had lots of blood tests done over the last few weeks 5 page's of them. after managing to get my Dr to do them it was a battle though.my Tsh came back as 2.6 fasting and 3.8 non fasting with a 19 days gap. I'm not on any medication other than vitamins there are changes to other blood tests too (haven't got my print outs here at the moment) but red blood count dropped too
I would definitely change GP as a priority if you have access to someone else? Also as others have said you need to eat more and exercise less. Your adrenals are likely to be whacked out. Exercise can become addictive because of the initial high but likely very bad for your health at this point. Only gentle restorative exercise such as a gentle stroll, a little relaxing yoga etc will benefit right now.
There are some very good online resources such as tpa.uk (Thyroid Patient Advocacy) and sttm.com (Stop The Thyroid Madness). tpa has a great forum and they can help to interpret blood tests.
Things you can do right now.
1. Eat healthily
2. GENTLE exercise
3. Try moving your medication to bedtime (studies have shown it can often metabolise better at night). I found it far better before changing to Armour and my husband improved when he moved his to night time too. TSH level is irrelevant to what is happening on a cellular level and you may get more of the T3 you need by changing to night time. Just don't eat or drink 1 hour before taking it.
4. Join other forums for advice and resources.
5. If you can't change GP you will have to work with him which means really educating yourself (very difficult when in a hypothyroid state I know) and then being confident and at the same time respectful of his position as it doesn't help to aggravate them It's a bit of a balancing act but can be done. Often arrogant Dr's respond well if you go in confidently and respectfully armed with facts. You may need to let your GP know that Armour isn't illegal and can be prescribed on a named patient basis. My Dr is very good but was happier to prescribe Armour via an Endocrinologist. I saw one recently and tbh they often aren't much better than GP's. Virtually the whole medical profession is blinded by the culture they operate within. So, you really need to be assertive about wanting to try Armour. Don't be fobbed off.
Wishing you lots of luck and warm wishes. I really feel for you.
I'm not unhappy at all. I find it useful to have multiple resources and the links I suggested compliment this site. I am a new visitor here and I must admit I do find the tone of some posts unpleasant - not helpful to people who feel really ill. Do admin's clamp down on this at all?
If people report unpleasantness, we do indeed check it out.
The volume of posting is so high that we have to rely on members reporting anything untoward. (Of course, sometimes we do see things and decide to act.) The admins are few in number considering the number of members and all have other commitments - like work.
Over the years we have seen some pretty robust threads. At times, they might have looked to be going very badly. In the end, at least sometimes, we have seen some apparently genuine "kiss and make up" ends to such threads.
It would be all too easy to jump in and do something on many threads. But that could look like censorship, make the person admonished feel bad, and the apparent unpleasantness might not even have been noticed! Whatever we admins do, some will feel that we are wrong. We understand that and accept there are different opinions.
We also see many very understanding, caring and gentle threads.
I changed from synthroid to Armour and it has made a big difference in how I feel, more energy, started losing weight. The new guidelines are 0.3 to 3.0 . You should not go over 3.0. The best is to be 1.0 if you T4 is within range. Good luck.
So sorry that you seem to have a very negative unsympathetic Doctor, if there is another Doctor at your practice i would recommend you ask to see them, the one thing that i can recommend you ask your Doctor to do for you is an "INTRINSIC BLOOD" test I've been on levothyroxine for over 20 years started on 75mg rising to 200mg was so run down tired irritable cold all the usual symptoms we suffer, i asked my Doctor to recommend a tonic as how i felt was far from right, he did the intrinsic blood test & it was discovered i was pernicious anaemic so i get a B12 injection regularly & consequently my levothyroxine has reduced to 150mg, even the fibromyalgia pain although still extreme it has become more a manageable pain for me, i do so hope this message gives you some hope for an improved future with your health, gentle hugs & love H xx
Really sorry to hear you've given up. I can understand it though as you are feeling ill and it's hard to push through. I'm new here so don't know about any past posts you've made. I'd be happy to listen and help if at all possible?
You have had a lot of advices on this thread some of which has conflicted so can be confusing. Unfortunately treating hypothyroidism is not a single pathway. Different approaches suit different people -hence the variation of advice you can get. The best I can say is to inform yourself so you become knowledgeable about your condition. There are some really good books out there -if you look on Thyroid UKs website you will see them listed. They also offer a loaning library service which you might find helpful.
Many GPs know very little about it & sadly this is also the case for Endcrinologists too who are meant to be the specialists!!! Many Endocrnologists specialise in diabetes not thyroid conditions -so if you go down this route be sure. To check out their field of experience. Thyroid UK have a list of specialists others have recommended.
In your shoes I would read up. You may find your GP is willing to be guided but if not try someone else in the practise. Whatever changes you make do them one at a time -this is so you can evaluate he how you respond. If you do several changes you won't know which change has made the difference. Treating hypothyroidism can be a slow/frustrating business but stick with it as with time you will sort it. Xx
Thank you everyone for all your advice. I know we are all individual and different things work for different people. I value everyone's opinion and thank you for taking the time to give me your advice. I feel so much more positive and armed with information and options I can take. You are all really special people to give me your time and I feel if I ever had a question or needed advice this is where I would come first xxxx
Your late morning blood draw would mean the TSH would be lower (as shown above) and could actually show you are overtreated. Next time, try for the earlier time for your blood test.
After a recent holiday just trying to catch up. I don't think any of us start out to be confrontational but often we aren't feeling as well as we hope but we must remember we are giving suggestions which have worked for us or someone close to us and we must do remember that we react differently as we probably have different issues and may be even ones we are unaware of. Aldo we shouldn't assume what is good for us will work for everyone and may be agree to disagree.
Remember that we are all striving for wellness in our own way and I'm sure if we asked our families to be honest most would say we have times they could cheerfully strangle us! At the end of the day the direction we take is our own decision. Suggestions on a forum are only suggestions and its up to us to either embrace, ignore but also to hopefully question any doubts or ask for further info which could well attract more comments but at the end of the day we make that decision ourselves. Keep the info and the experiences flowing and hopefully this will lead to a more balanced thread but at the end of the day the decision could well be a yes, no or may be but only each individual can decide what they feel happy and confident with.
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