Two months ago I was feeling great and I thought I was on the perfect dose of thyroxine (100 mcg a day) for my needs. I had no aches and pains,I wasn't passing out and I could think clearly. However, my endo was unhappy that my TSH had fallen to 0.03 and he slightly reduced my thyroxine to 100mcg for 4 days a week and 75mcg for 3 days a week.
Six weeks in to this reduced dose I began to get leg cramps and a very achy back. I recognise these as the symptoms I've had before when on insufficient thyroxine.
I suspect that my endo will want to keep my throxine dose where it is as I am so close to the TSH 0.1 that he said we should aim for. (He doesn't want me to become hyperthyroid)
My blood test results today.
TSH 0.13 (range 0.35 - 5)
T4 14.3 (range 9- 20)
25-OH vit D 100 (range 50-150)
cholesterol 6.2 (range 0 -5)
Why do I feel unwell if, as my endo says, I am at my ideal TSH?
(By the way.... I was diagnosed with Hashimotos two years ago and have been taking thyroxine ever since. I also took the gene test to confirm that I convert T3 to T4 normally))
I would appreciate any advice please.
Many thanks.
Written by
Jen15
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Mr Micawber's famous, and oft-quoted, recipe for happiness:
"Annual income twenty pounds, annual expenditure nineteen [pounds] nineteen [shillings] and six [pence], result happiness. Annual income twenty pounds, annual expenditure twenty pounds ought and six, result misery."
If you take 100 micrograms of levothyroxine a day and your body expends 99 micrograms, result happiness. Take 100 micrograms of levothyroxine a day, body expends 101 micrograms, result misery.
Every extra day leaves you further behind, until eventually you reach a new but definitely suboptimal steady state. A tiny, tiny amount more than you need is of little or no consequence.
For example, if you were on 125 micrograms and needed a small dose reduction, say to 112, but you were actually reduced to 100, you would be falling behind by 12 micrograms a day. In one week, you are down by 84 micrograms. Only when your body reduces its "consumption" of levothyroxine to 100 can the new steady state occur - and you will be well down by then.
(Be careful not to interpret this as an invitation to take more and more levothyroxine, that is taking the analogy too far.)
I understand that too much levothyroxine is a bad thing too.
I didn't realise what a very exact science it is to get our levothyroxine dose exactly right....especially as tablets in their smallest form are 25mcg. If only it came in 10mcg or even 5mcg strength tablets so we could make tiny adjustments..Crazy, isnt it?
Actually, you can now get 12.5 microgram levothyroxine tablets in the Teva make! (There have been mixed reactions to this newly formulated Teva - some people seem OK on them, others have not been at all happy. However that is true of all UK makes!)
If, say, you were on 100 micrograms a day, that would be 700 a week. Add one 25 tablet, once a week, and your dose goes up to 725 a week, or by just under 4 micrograms a day. Reduce by 25 to 675, and you drop by just under 4 micrograms a day. That is pretty fine dosing! You can do the arithmetic for this - just try to keep the doses as even as possible through the week.
Not quite as simple as that due to not all makes being available in all sizes - and people finding some makes not as good for them as other makes. Also, you need to have a suitable range of tablets and maybe a pill cutter. But it is possible!
I don't think my GP or endo realise that 12.5 mcg levothyroxine pills are available. I will mention it to both of them when we next meet. Very helpful.Thanks!
I have heard that their 25, 50 and 100 tablets are very close to or the same price as the other makes. Not sure about the price of their 12.5 and 75 microgram tablets.
TSH does not make you fell well or unwell. It's low T3 which makes you feel unwell. Your FT4 is low in range and that will mean your FT3 is likely to be low too. Some patients need high FT4 to convert sufficient T3 and that may mean TSH will be suppressed as low as 0.03. 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 endo.
You've probably got enough Levothyroxine to take 100mcg daily. I'd increase dose and tell your endo you felt undermedicated on 75/100mcg.
My endo said he was concerned that I was in danger of becoming hyperthyroid as my TSH was so very close to zero. He also warned that long term I could end up with osteoperosis if I took too high a dose of thyroxine...is that correct?
You're not asking to take too much thyroxine but too little's no good either. If he's worried that you may become over medicated it's your FT4 and FT3 which he should be looking at. As FT4 is nowhere near the top of range, let alone over it, you are NOT over medicated.
There was a meta-analysis of patients with TSH <0.1 and it found ONE extra hip fracture per 1,000 patient years. It's a risk I'm happy to take and my TSH has been 0.01 or lower for almost 5 years.
Jen15 You need to go back to your 100mcg daily perfect dose. That is where you felt well. Your end is making you ill again.
He said he was unhappy with your TSH at 0.03. Your FT4 is only half way through it's range. Did he bother to test your FT3 - that is the important one, as long as that is within range you are not overmedicated.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Online Magazine:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can email louise.roberts@thyroiduk.org.uk for a copy of the article to discuss with your endo.
Ask him to put your dose back up to 100mcg on the strength of the article and how you feel.
Nice Vit D level, recommended is 100-150nmolL.
As you have Hashimoto's, are you gluten free and supplementing with selenium L-selenomethionine 200mcg daily to help reduce antibodies? Also, keeping TSH suppressed helps reduce antibodies so you will be better off with your previous TSH result in that respect.
Thanks again for your reply..in response to your questions...
I have been strictly gluten free for 3 years now.
I eat brazil nuts each day for selenium.
I take vitamin D3 spray daily (which has worked like a charm to dramatically raise my D3 levels over the last 6 months. I followed the excellent vitamin D council website advice to achieve this.)
I will take a copy of this article by Dr Toft with me as evidence...I found it difficult to argue my case with my endo when being told I was heading for hyperthyroidism and osteoperosis unless I reduced my levo dose!
TSH means Thyroid Stimulating Hormone. What is important is your Free T4 and Free T3 as it is T3 alone which makes us well. levothyroxine is T4 (inactive) and has to convert to T3 (active) which is needed in all our receptor cells. If you convert T4 to T3 normally, what are your FT4 and FT3 results. Anywhere isn't sufficient, both have to be towards the top. If GP wont test you can get a private blood test from a recommended lab. You may still not be on sufficient hormones especially as he has reduced your dose and developing clinical symptoms.
My FT4 result today was 14.3 (range 9- 20)...is that too low?
I did not get tested for T3 recently....however I did take the DI02 test a year ago to check that I am converting T3 to T4 . The results showed that I do not have the faulty gene and I convert normally.
Your help is much appreciated so I know what to say to my endo at my appointment next week.
Your FT4 isn't too bad but it is the FT3 which is the most important and I'll give you a link and you'll see the reason why we need both FT4 and FT3 which are rarely tested.
Even though you can convert T4 to T3, if your T4 isn't sufficient your T3 may still be low.
Thank you. I will fight my corner at my upcoming endo appointment.Before my dose was reduced my cholesterol had been falling nicely and I was also free of pain and feeling the best I could remember for years.
I did object to the reduction in dose but when my endo warned I would end up hyperthyroid with osteoperosis if it wasn't reduced immediately I'm afraid I quickly gave in!
Why do they spread rumours in order to make the patient toe their line and it is lies about osteoporosis/heart etc. We are more likely to develop these with too low a dose of hormones and if we took too much we'd soon feel the effect and lower dose ourselves.
Cholesterol does fall when taking replacement hormones but many doctors still prescribe statins rather than a decent dose of thyroid hormones.
my endo recommended a bone density scan as my TSH is suppressed at 0.01 - it has always been this low in the last 15 years,but they have never worried about it before! It showed that I have low bone density,but as I said to my doctor, so does my mum and my sister, and theirs wasn't caused by thyroid meds!
Some people will have naturally low bone density, and if it is in the family then the thyroid meds will make no difference.
Thanks for that blondpalomino, I will request a bone density scan just to set a baseline. I will then be able to compare that result with future scans when I have had suppressed THS for a while.
As I know I can feel very well on 100mcg of Levo I will fight to get back on that dose again.
I have read about NDT and will bear it in mind for the future though. Good to know my options going forward. I will have a look again at Dr Myhill's web sight too.
I see your point,its hard to be active when you feel exhausted/are aching all over. I spent the best part of 2 years on a sofa with hot water bottles in pain because my GP failed to diagnose my Hashimotos. I was passing out and showing other classic symptoms of thyroid problems ,in the end I self referred to an endo to get diagnosed with Hashimotos. Its been a long road.
its funny you should mention that,I replaced all my cookware with safer items only last month after reading an article about possible links to dementia.
So sorry to hear that your Mum has osteoperosis. That must be very difficult,
Best wishes.
I would say go on how you feel more than anything. If that's how you feel best with a suppressed TSH then that's what is best for you. I would insist on staying on the 100 mcg dose.
I don't get why these doctors get so obsessed with you having to fit into a tick box system of treatment and results. The body is complexed and doesn't give a damn about tick boxes! I've recently had them go loopy over my t3 being a bit over. Convincing me to lower my meds but now I feel pretty rubbish and my tsh went to 20 with my t4 and t3 mid range which they seem to think is perfect. Was previously near top range t4 and my tsh suppressed, t3 slightly over. They don't seem to pay enough attention to how you feel and don't care if things look low but then freak out as soon as it looks like you are optimally medicated towards the top of the range, feeling much better. It's all backwards.
I agree. I will try to reason with my endo next week. I cant bear to feel so bad when I know a slightly higher dose of levo makes me feel completely well. I hope that you are able to get your optimum dose soon so you can feel well again, Katiekatie.
Katie Katie, you are one of the few people who, like me, believe that how you feel is more important than what your test results say. Listening to your body and trusting that it will let you know when things are imbalanced. That is common sense. No one fits into tick boxes, we are all unique and have our own special set of symptoms or not. Thanks for speaking my mind I am sure there are many people out there who have no idea that their TSH is "suppressed" or "too high" because they feel just fine!
Exactly and also some are more sensitive to these levels changing than others. So there is no set range where people begin to get symptoms of hypo or hyper either. It just seems a crazy system where listening to how the patient feels often comes last.
Yes, I have an excellent doctor whose first question is always "how do you feel?" On the "tick box" scale, it would appear I am undermedicated. And yet I feel fit and healthy on 25mcgs. I trust my body to guide me in my actions and my doctor trusts this process. Yay! Thyroids are such a tricky little organ responsible for so much of our well being and I really feel for the people on this site as I have been very sick in the past and know some of what they may be going through. And it's not over for me yet as my body ages and menopause takes its toll. Our ever changing bodies need focussed care. Lots of strength to everyone on this site. Kia kaha.
Thanks Kerynz. I will try to get my endo to take in to account how I actually feel. I am amazed at the extent to which the diagnosis and management of thyroid issues is dependent upon our ability as patients to get as knowlegable as possible. By the way, I found the menopause a walk in the park compared to thyroid issues!
I think my menopause is directly related to thyroid issues ie the thyroid symptoms are the menopause symptoms. Yes, the whole endocrine system - adrenals, pituitary, thyroid and related hormones can all be very confusing.
I think you need more thyroxine - in my experience the doctors don't take clinical observation sufficiently into account. I always find my cholesterol levels go up when I'm not getting enough thyroxine. I also have Hashimotos and my TSH is always right at the bottom - I need at least 125µ to function correctly.
Your FT4 is still pretty low for smeone taking T4 so I bet your FT3 is even worse. Your dose was reduced too much. Quite likely you didn't need a reduction at all. Some people's TSH seems to drop like a stone with a tiny amount of levo while other's doesn't. You need to be treated on FT4 ad FT3 levels, not TSH
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I am sure there are many people out there who have no idea that their TSH is "suppressed" or "too high" because they feel just fine!
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