I became hypothyroid after receiving treatement for hep C in 2009. The interferon injections, which boost the body's immune system to kill of the virus, unfortunately also attacked my thyroid. I thought i felt so ill due to the treatment, but when they finally checked my thyroid, my TSH was 86.1! I was initially told that after the treatment for hep C stopped, my thyroid would possibly go back to normal again, but i have never stopped taking the levothyroxine to find out, as the doctors opinion was that it may work, it may not, so best to just keep taking it. I have been taking 75mg since then, but suffered debilitating anxiety and tinnitus since then, which can be linked to taking thyroxine. I have recently discussed with my present doctor whether i could try to slowly lower my meds to see if my thyroid will start working properly again, as i feel so shit anyway. I had my antibodies checked to see if they are still active. My thyroid receptor antibodies are 0.90, thyroid peroxidase ABS is 0.63, free t4 is 18.3, and tsh is 0.24.
If my tsh is low, and it says this is abnormal. Would this indicate i am being over medicated, and could safely lower my medication to 50mg. My doctor said it was up to me to try, and see what happens, but they don't seem to know? I reckon some of you guys on here seem to have more info than the doctors in the UK!
Hi, yes i see that now. Have also been reading up on reverse T3, which can block FT3 in the body, which would be good to check. High Reverse T3 is bad, if FT3 is low, which would account for me still having hair loss, brain fog and other hypothyroid issues. Apparently your TSH can be low on medication, which is no indication whether the FT3 is being blocked by a high RT3. Its so complicated! No wonder people have problems interpreting their results!
I wouldn't bother about reverse T3. It will sort itself out when on the right amount of medication. Others will give advice on FT4 to FT3 ratio and how to correct that. I see you've had lots of good advice and information below so won't repeat.
Hair loss is more likely to be due to low vitamin and mineral levels and may be made worse by thyroid disease. As SlowDragon says, get all your vitamins and minerals tested, or at least the one's she advises. Post them here when you have them as doctors often say they are ok even though bumping along the bottom of the range which will not make you feel well.
I think no one knows! Probably the only way to find out is to try stop taking the tablets and see what happens. BUT - it could take a long time for you to return to normal AND you might very poorly for a while, AND you may not be ok without thyroxine. I suppose it depends on your personal situation - do you care for anyone! Or have a job? Or a special holiday coming up? Wish you good luck, what a tricky decision.
Abnormal just means that it's not in the 'arbitarily chosen range', but the 'arbitarily chosen range' doesn't have much to do with what's 'normal' in the real world. Not if, by 'normal', you mean what healthy people have. Most people do not have a TSH of 5.5, but a lot of TSH ranges go up to 5.5. So, that shows you just how 'normal' the 'normal' range is.
Just the fact of taking thyroid hormone replacement can cause your TSH to drop quite low, but that doesn't mean your FT3 - the most important number - is necessarily high. The TSH tells you nothing about the FT3. That's why the FT3 should be tested. But the NHS thinks it knows better, so the FT3 isn't tested. It could, actually, be very low. So, before considering coming off your levo, you really do need to get your FT3 tested. Just to see.
Firstly, thank you for your replies. So why don't they test FT3 for god's sake? So what would a high FT3 indicate? I get totally confused with what levels mean what? Yes i do work, so worried to feel worse. My hair has been falling out a lot recently , and get itchy. Feel very thirsty, especially at night, even though i drink loads, and very tired, eyesight sometimes blurry, which can also be a symptoms of over active thyroid. My B12, and iron levels were normal. Blood sugar normal. Eyesight tested.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If either TPO or TG antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
I don't know why he tested the TSH recepter antibodies then, if thats for graves. What hope have i got if they don't know what tests to request. He just said he was limited in what he could request. B12 range is 187-883, and mine was 350. Serum folate range is 3.0-20.0, and mine is 7.6. I was also not told to not take my medication in the morning before having the TSH and FT4 blood tests. Would this have altered the results?
Extremely unlikely to get FT3 or TG antibodies tested on NHS, though worth asking
B12 and folate are both low. B12 especially. Anything under 500 is likely too low, especially when on Levothyroxine
Supplementing a good daily quality vitamin B complex with folate in (not folic acid) eg Igennus Super B, or Jarrow B right or Thornes. You may also consider a separate sublingual B12 (eg Jarrow) as well, or B12 spray by Better You
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Thank you for all the info. They told me my B12 and folate were normal for god's sake!! The more i find out, the more exasperated i get! The doctor has requested a blood test for T3, which i will go and have possibly tomorrow. He said its not up to him whether they test it. He can request it, but they may not do it, as its not a standard test. You have to have a good reason to request it??? What the hell is that all about? So i will have the blood taken, but the lab may decide not to test it? I have never heard anything so bizarre! Once i have had the test, i will start on some supplements. Thank you for alerting me that both are actually low. The low B12 could account for my tinnitus being so bad! I have to go to sleep with the tv on timer, to distract me from listening to the loud ringing in my ears when trying to get off to sleep. A reduction in that alone would be a relief! I also will not take my meds before having the blood test. There is so much they don't tell you, basically because they clearly don't know it themselves. Thyroid treatment in the UK is pants!
So why don't they test FT3 for god's sake? So what would a high FT3 indicate?
TSH (Thyroid Stimulating Hormone) is not a thyroid hormone it is produced by the pituitary. If your thyroid hormone levels are high then TSH production will reduce. If your thyroid hormone levels are low then TSH will rise. In a perfect scenario the pituitary would send out exactly the right amount of TSH and the thyroid would respond to that TSH by producing exactly the right amount of thyroid hormones for you to feel well.
Doctors have been brainwashed into believing that, although they know the thyroid commonly has problems, the pituitary is special and problems with it are vanishingly rare, so TSH is a perfect measure to use to determine whether or not your thyroid hormone levels are where they should be. But there are loads of conditions that could cause the pituitary to respond inadequately (or even produce too much TSH).
The other problem is the T3. In a healthy person with a healthy thyroid the amount of T3 produced in the thyroid is about 20% of the total in the body. The other 80% comes from T4 being converted into T3 in various organs throughout the body, such as the gut and the liver and the brain (and others). Doctors have decided in their collective wisdom that the 20% of the T3 from the thyroid is not important, particularly in the case of hypothyroidism - the thyroid is damaged and so the amount of T3 produced cannot be relied upon. They claim that conversion rates will rise in the organs I've mentioned (and others) to make up for poor production from the thyroid itself.
Please note that the thyroid is the only source of T4, apart from replacement hormones like Levothyroxine.
In people who are hypothyroid (and many of us are sick for many years before we are finally declared to be hypothyroid) the conversion of T4 to T3 is often not that good. But doctors simply refuse to believe this. We all have perfect pituitarys and we all convert perfectly from T4 to T3.
Another point is that doctors claim T3 is too variable to be relied upon. But T3 varies less over 24 hours than TSH does, and yet they think TSH is wonderful.
So, taking all the above into account, doctors believe that a TSH in range is perfect - no need for any other tests.
When TSH goes above range or below range then doctors start to think about measuring Free T4, or even Free T3. But usually (in the UK) they only consider TSH to be important when it is above 10, which is simply sadistic.
For info on the various combinations of test results that doctors look at, and what they do about them, see this link :
Oh, I forgot to answer about high Free T3. If someone had a high Free T3 they might be fine if it wasn't massively high, or they might be hyperthyroid.
Low Free T3 leads to hypothyroid symptoms, high Free T3 leads to hyperthyroid symptoms. The TSH doesn't make people feel anything. How much people respond to levels of Free T4 seems to be quite variable. The Free T3 is the important one!
What can you do if T3 comes back as low then, as they don't give out T3 meds in the UK? I presume if its high then, i could safely cut down my medication by 25mg, and see what happens.
With high Free T3 you just reduce meds. But you have to be careful not to reduce too much or too quickly.
With low Free T3, you might have to buy your own T3 online without a prescription, because getting it from the NHS is virtually impossible. If you managed to get a private prescription from either a GP (unlikely) or from an endocrinologist (seen privately) then you have a greater choice of sources than those without a prescription. However, if a doctor is involved then you have to pay for the doctor and the prescription (every time you need one, not just once) and the T3 itself. If you bought T3 in the UK with a private prescription it will cost hundreds of pounds per month. These are the NHS prices :
With low Ft3, you can either show your GP the Dr Toft article that states that some people need over range FT4 and suppressed TSH in order to convert enough T3 and ask for an increase in levo, or you can try for a referral to an endo who can/will prescribe T3, or you can order your own T3 online and self-medicate.
My T3 result has just come back at 4.1, Range 2.6 - 6.1, so says normal. My doctor said if it was normal or on the higher side, i could drop down from 75mg to 50mg, and see how i go. I'm still not sure.
I wouldn't drop dose with your level of Free T3. It is in the lower half of the reference range - only 43% of the way through the range. Most of us hypothyroid people need a Free T3 in the upper half of the range, often quite high in range.
The problem you have is that TSH is already bottom of the range. Low TSH doesn't bother many of us here, but it will worry your doctor and you could find it hard having to deal with a doctor who is determined to lower your dose in an attempt to raise your TSH. Increasing your Levo might improve your Free T3 if you can convert reasonably well.
But really I think your best bet might be to leave your Levo dose where it is and add a small dose of T3. You would probably have to source T3 yourself, because NHS doctors (mostly) aren't allowed to prescribe new prescriptions of T3 to patients. If you were to be referred to an NHS endo then you could wait many months for help. If you went private then you would have the cost of a consultation with a private endo, the cost of a private prescription, and the cost of the T3 itself. The total could be quite eye-watering. So going it alone might be your only option.
You would have to write a new post asking for sources for T3, with replies being sent to you via PM. Members are not allowed to discuss sources of prescription-only medicines on the public forum.
Yes, i agree. It was my query to the doctor, as to whether i could try to lower the dose, for reasons stated in the the original post. He was dubious whether it was a good idea. Had my T3 been high, i would have considered lowering the dose. He just said you can try, and see what happens, and how you feel, and get tested again in 6wks to see the results. Because the TSH was on the low side, and FT4 on the higher side, I thought i may be able to lower it a bit, but as you say, The T3 isn't high.
Hi Dawn, do you have your lab ranges? I too have been on levo (I have Hashimotos) and and actually trying to conceive so my doctor has aimed for a really low tsh (below one) but it recently fell to 0.1 and my T4 was at the upper end of the scale (21). I actually felt ok but I’ve reduced my dose (having discussed with my doctor) by 25mg.
I think the normal range for my results started around 0.4, though I think if you aren’t trying to conceive most doctors would not aim to suppress it this much. Taking too much levo can lead to bone density issues etc so I’d definitely seek to reduce the dose if I were you.
I have always disliked the idea that I need meds for life- so if there’s a chance you could wean yourself off then that would be great! Good luck.
I think the normal range for my results started around 0.4, though I think if you aren’t trying to conceive most doctors would not aim to suppress it this much
A result of 0.4 for TSH is nowhere near suppressed. A suppressed TSH is more like < 0.01 or something like that. I can never remember the official definition exactly.
Just to say that an under range TSH doesn't mean you are hyperthyroid. Hyperthyroid results would look something like TSH=<0.01, FT4>30 and FT3 >10. The problem with long term Thyroxine use is that some people find that if they are slightly overmedicated for a long time their TSH never recovers to a normal level. This is why once people are medicated the TSH result is of dubious value and should always be accompanied by FT4 and FT3 results.
I don't think you should consider not taking any Levothyroxine at all straightaway. You could cut down to 50mcg a day, or better still, take 50mcg and 75mcg a day alternately and see how you feel. It takes 6-8 weeks for changes in Levothyroxine dose to result in stable hormone levels in the bloodstream, so you need to take it slowly. If the decrease seems to suit you after a couple of months you could drop a bit more.
i would definitely cut down slowly, but i just don't know whether to or not, as the doctor cant even advise, other than to say try dropping the dose, and see how you feel. I am going to see him today, to see if i can get my reverse T3 and FT3 tested, as i may not be getting enough FT3 if the RT3 is high, which could account for still having hair loss and other symptons. I hate the thought that i could be over medicating, and doing more damage to my body! If my Reverse T3 is high, then what can i do about that anyway, as you can't get T3 medication in the UK?
Most doctors don't even know that Reverse T3 is a thing. You might have some luck with FT3 though. It might be wise to avoid talking about Reverse T3 with your GP since in my experience they don't like to be made to feel as though they know less than their patients. I'm not even sure that testing and interpreting Reverse T3 results is a mainstream thing to do. FT3 on the other hand is definitely mainstream and all doctors should know about it and how to interpret the results. Sadly many don't.
There is some misconceptions about RT3 and this is an explanation from one of our Advisers who has now died. He also was a scientist eeng :-
This is an excerpt which might be helpful in understanding that it is T4 which converts RT3 and then T3 and it is normal process when we take levo only:-
"Dr. Lowe: Some readers will not be familiar with reverse-T3, and I know from experience that many others harbor misconceptions about the molecule. Because of this, I have summarized in the box below what we know about reverse-T3. I've answered your question below the summary.
Conversion of T4 to T3 and Reverse-T3: A Summary
The thyroid gland secretes mostly T4 and very little T3. Most of the T3 that drives cell metabolism is produced by action of the enzyme named 5'-deiodinase, which converts T4 to T3. (We pronounce the "5'-" as "five-prime.")
Without this conversion of T4 to T3, cells have too little T3 to maintain normal metabolism; metabolism then slows down. T3, therefore, is the metabolically active thyroid hormone. For the most part, T4 is metabolically inactive. T4 "drives" metabolism only after the deiodinase enzyme converts it to T3.
Another enzyme called 5-deiodinase continually converts some T4 to reverse-T3. Reverse-T3 does not stimulate metabolism. It is produced as a way to help clear some T4 from the body.
Under normal conditions, cells continually convert about 40% of T4 to T3. They convert about 60% of T4 to reverse-T3. Hour-by-hour, conversion of T4 continues with slight shifts in the percentage of T4 converted to T3 and reverse-T3. Under normal conditions, the body eliminates reverse-T3 rapidly. Other enzymes quickly convert reverse-T3 to T2 and T2 to T1, and the body eliminates these molecules within roughly 24-hours. (The process of deiodination in the body is a bit more complicated than I can explain in this short summary.) The point is that the process of deiodination is dynamic and constantly changing, depending on the body's needs."
That's really interesting, thanks for posting this. There certainly is a lot going on with all these enzymes and hormones. Do you know how/where the 5'-deiodinase and 5-deiodinase are produced? If someone produced more of the 5-deiodinase then they ought to so the balance was wrong they would presumably always have low FT3 however much Levothyroxine they took. I wonder whether that's what the D102 gene controls.
I am not qualified to comment but I think that conversion takes place int he liver. As far as I understand, some people cannot convert T4 into T3 so would remain unwell and need T3 alone. It is T3 that's needed in our millions (or billions) of T3 receptor cells. T4 is inactive and has to convert. If we get the D102 testing positive we can only improve on T3 alone.
I heard a doctor at the hospital say i had Hashimoto's once, although any surgery doctors i have spoken to didn't seem to know. As my thyroid issues were caused by taking interferon, i presume it is hashimoto's, as the treatment boosts the body's immune system to kill off the hep c virus, a side effect being that it can also attack the thyroid. I also don't like the thought of staying on medication for life, especially as they said at the time that my thyroid could possibly function ok again once the hep c treatment had stopped. TSH range is 0.35- 4.94, and my reading was 0.24, which said it was abnormal. FT4 range 9.0-19.0, and mine was at the higher end at 18.3, but still in the normal range. I wanted to see what my results were before dropping from 75 to 50mg, but now i feel i need to see what my Reverse T3 and FT3 are doing before i do that, as i still have hypothyroid symptoms. I had the antibodies tested also, but the doctor said he was limited in what he could request, and tested TSH receptor antibodies, range 0 -1.74, mine was 0.90, and se thyroid peroxidase AB, range 0-5.9, mine was 0.63. Both tests said normal.
I can now get access to my results online at my surgery, and was interested to see the graph of my results over the years. In 2015, my FT4 was even higher, and TSH low again, and it says abnormal in the results, but i have always been told its within normal range. I will be keeping a close eye on the results from now on.
It’s definately worth pushing your GP for your T3 tests- mine has tested them twice but I had to ask for it, it’s not a standard thyroid profile test on the nhs from what I can fathom. I think slow dragon also recommended medichecks which can privately test all things thyroid related, including T3 and reverse T3- worth doing if you don’t get any joy.
The TSH is useful for diagnosing but once we are taking thyroid hormone replacements it is fine to have a very low TSH and some need it to be suppressed. There's no danger to us if TSH is low and it is from the pituitary gland, not thyroid gland.
Hi Dawn, like you I've been having debilitating anxiety since January. This coincided with my Levothyroxine being increased from 125mcg to 150mcg. It took me a while to realise that the increased dose might be responsible for my anxiety. When I realised I cut right back to 100mcg and missed out a couple of doses completely in the hope that the anxiety would go, but it didn't. Then I joined this forum and had my bloods checked by Medichecks, and it turned out that my TSH was 12.5 (0.27-4.20) and my FreeT3 and Free T4 were low, so I was, or had become, hypothyroid. Everyone on this forum reassured me that my anxiety was persisting because it's a symptom of hypo as well as hyper. I've been gradually increasing my Levothyroxine, and having my bloods checked (privately), and they're almost in normal range now, but still suffering from anxiety and now feeling depressed and miserable as a result. I've no way of knowing if I was over-medicated on 150mcg because I didn't have my bloods checked before reducing my dose back down.
I'm now on 150mcg on 5 days of the week and 125mcg on 2 days. Don't know how long it takes for these ghastly symptoms of anxiety and depression to go. I read somewhere that the psychological symptoms take longer to wear off than the physical symptoms. Would like to think they are going to wear off when my thyroid's stabilised. I've had all my vitamins, minerals and antibodies checked and they're all OK.
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am I going to remission? how does FT3,FT4&TSH work? how could i know the right dosage of my ATD?
Just a quick question - does this mean my Thyroid problem is caused by Hashimoto's??
My TSH is normal, does that mean my thyroid is fine?
Am I being over-sensitive or is my doctors surgery just not very helpful?
At my wits end with being told my TSH is normal 
