Hi. I had half my thyroid removed a little over a year ago, and have had classic hypothyroidism symptoms since - very low energy to eyebrows disappearing - but doctors keep insisting that half a thyroid is enough and my blood test results are all 'normal'. I've finally gotten hold of the figures, and was hoping someone here could help me make sense of them. I've listed Sept / Dec / Feb:
TSH 3.2 / 2.7 / 1.7
Free T4 13 / 14 / 10
Total T3 ? / 1.5 / ?
PTH 23.2 / 19.2 / 10.7
I've been on a minimal dose (50mg) of T4 since last year, although they're trying to take me off it after I asked to try T3 (10mg), which I was on in the Feb readings. The latter works, but it's not really supported in the UK and they've only given me one dose a day which lasts about 4 hours before I start feeling rubbish again. I stopped the T4 for a month (after results above) but was feeling worse so started it again without official approval.
I've got a couple of weeks before I can see the consultant again, hoping to have a strong case to put to him to really try to help me instead of continuing to fob me off that I 'should' be feeling okay - I'm really not, and it's an awful non-life to be plodding through. I need some hope!
Huge thanks for any help.
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sarah--c
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You need an small increase in thyroid hormones. The aim is a TSH of 1 or lower - not what some doctors or endocrinologists believe i.e. that as long as we are in range it doesn't matter. It does because we still have clinical symptoms if it is not below 1.
You are on a minimum dose of 50mcg which should have been increased by 25mcg every six weeks until TSH is 1 or lower TSH .. On 50 yYou've had a Free T4 taken but not a Free T3 and I will give you a link for the reason we need both frees. I am not sure whether you've been given 10mcg of T3 added to T4? 50mcg is a starter dose.
How they expect a 50mcg dose to help someone who has half a thyroid gland taken away, I don't understand.
Ranges of the tests are needed in order for us to respond reply as labs differ and it makes it easier to respond.
You need a Free T4 and Free T3 test along with TSH. I shall give you a link and read about FT4 and FT3 and few endocrinologists or doctors rarely test both.
Thank you, some very helpful info there! I've posted the ranges below. They didn't even want to give me any T4, the message was "Half a thyroid is more than sufficient". I was taking the T3 on top of the T4, but turned out they wanted me to stop the T4 - left me feeling awful, though, so I'm back taking both.
Next time they state half a thyroid is sufficient - ask if they would have an operation without anaesthetics? I bet you not. They have no idea what it feels like to have a dysfunctional thyroid gland and we expect them to be knowledgeable. Why do we have nearly 80,000 on the forum? We can feel worse by having a dose which is too low. Some of us cannot convert T4 so it's useless.
When we're on a combination it should be 3 T4 to 1 T3. T3 is absorbed quickly but it goes into our T3 receptor cells in a short time but its work then begins and sends out 'waves' which last between one to three days. I take T3 only and am well but we need to have a dose which works for the whole body.
If you can afford it I'd get a Full Thyroid Function Test privately and one of the labs have a discount at present. I look after my own thyroid health after being let down enormously by the medical profession. They know no clinical symptoms but will give you another prescription for the 'fatigue', 'pain' 'depression' instead of making thyroid hormones are optimal.
Sorry but we absolutely need the ranges to be able to interpret the results.
Total T3 is the wrong test, it doesn't give any useful information. You need Free T3. And I'm not sure what PTH is.
I don't understand what you mean about them only giving you one dose a day of T3. How much did they give you? With T3 it's normal to start on a very small dose - 5 mcg - and increase by 5 mcg every two weeks. It's up to you whether you take it in one dose or split it throughout the day.
I'm just trying to figure out what anything means, as no one seems willing to explain or have a conversion. I'm in the UK, so this is the NHS - they told me there is no T3 test (turns out they meant 'on the NHS') and then gave me the above figure.
By 'one dose' of T3 I mean I get half a 20mcg tablet to take once a day, so when it wears off I crash off it quite hard and don't have any more to take until the next day. I'm really fighting hard to even have this, it's not one they like to give anyone at all.
PTH is parathyroid hormone, since I had an adenoma removed at the same time.
Had the 'chronic fatigue' set of blood tests done recently - iron, B12, etc - and all they'll tell me is that everything is 'normal', whatever that means. I've been taking vitD for about a year as us northern folk don't exactly get much sun!
Last appointment, I was asking for help to feel more normal and to be able to function like a human being - I got a blank wall of "I don't know what to do to help you", so I guess I'm just looking for as much info to take it to prevent this happening again. I *need* to be capable of doing a day's work at some point in the near future, not just falling over early afternoon every day!
OK, so this is rather weird, because your TSH is going down, but so it your FT4! Your FT4 should be going up, not down. But, I'm not clear on what you were taking with which test. If you were taking T3 on the last test, then that explains why the T4 has gone down.
The Total T3 is of absolutely no use, so we can completely ignore that. And, I don't know anything about parathyroids, so can't help you there. If I were you, I would post a separate question just about that - with 'parathyroid' in the title. Because not many of us do know about them.
So, your T3 dose... Actually, half a 20 mcg tablet is rather a lot to start on - obviously they have no idea what they're doing here. As I said before, you should have started on a quarter tablet, and built up from there. 10 mcg is not A Dose. It's just on the way to building up to the right dose for you. Obviously 10 mcg is not enough, but, have you tried splitting it in two and taking one half in the morning and one in the afternoon. It doesn't actually 'run out'. That's not how hormones work. I know about the T3 situation in the UK, and the problem is two-fold. Firstly, you have the price, which is astronomical, and the NHS just doesn't want to spend that much money on something they know nothing about. Secondly, they know nothing about it! They don't understand the importance, and believe that everyone is capable of converting T4, so T3 isn't necessary - and you get doctors/pharmacists/nurses telling you that T3 is exactly the same thing as T4 and/or it's just another version of T4. But this is not a problem reserved to the UK. It's universal! Even though T3 costs peanuts in most of Europe, you will still find European doctors reluctant to prescribe it, because they don't know what it is.
So, what you need to fight for is more T3. And, if you can't get them to prescribe it, you'll probably have to do like the rest of us, and buy your own.
Also you need that FT3 tested - the NHS can do it, if it wants to! But your endo will have to be firm with the lab, and tell them your on T3 only. You absolutely cannot tell if you're on enough T3 by looking at the FT4 or the TSH. That is basic Thyroid 101. An endo should know that.
And, by the way, are you on T3 only? Or are you taking T4? That's not clear. If so, how much T4?
To a doctor, a B12 result would be 'normal' if it was zero! They just know nothing about nutrients, and don't even believe in the importance of them. You have got to get the numbers - results and ranges. Every time you have a blood test, get a print-out of your results. In the UK, it's your legal right to have one, and if they refuse they are breaking the law, and there are steps you can take to force them to give you your results. No excuses! You need to keep your own records. On the back of every print-out, note what you were taking at that time, and how you felt. That record will be invaluable in the future.
But, they weren't lying when they said they didn't know what to do to help you! They really, really have no idea! Which is why forums like this one exist. We have the collective knowledge and experience of thousands of people. We can help you.
Yes, I started the T3 in January. I took 10mcg in the morning before the Feb test (I'm only now learning about not taking the tablets - the GP said it didn't matter!). I'd been taking 50mg of T4 at the same time, only finding out in Feb that I wasn't 'supposed' to, so had stopped that 2 days before the Feb test. After a month, though, I was feeling so lousy I went back to taking both the T3 and the T4, which I'm still doing now.
I am so grateful to you all for the help! And *so* frustrated at how clueless the supposed experts are.
More T3 - good to know. Is that instead of or as well as T4, and more of that too?
Well, everybody knows that doctors aren't very good at maths, and that calculation is just beyond them! If you take the hormone just before the test, all you are measuring is the dose you just took.
So, you leave a gap of 24 hours for T4, and 12 hours for T3. Two days is too long to leave it.
Most people find they prefer to take both T4 and T3, so go with that first and see how it goes. If it doesn't work out, you can try phasing out the T4 and just take T3.
What about calcium blood tests, what were your results? Did you lose some parathyroid glands with the partial thyroidectomy?
I would be asking my GP and Endo a lot of questions about this because it may affect bone/skeleton health so you need to understand more about it. You also should definitely check your vitamin D levels and ensure you are in a good range, not just sufficient.
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 and don't take Levo in the 24 hours prior to test, and T3 12 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)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse 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 obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many
Hi Sarah--c! Don't worry, many of us are in a similar boat!😕 loads of excellent advice and information on here.👍 There's a lot to learn at first, but you'll get lots of help and support from members. It's such a shame we don't receive the same from GPs and 'specialists', who seem to have very limited knowledge. Good luck on your journey back to health ~ you're not on your own💕x
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