Help with my mum's results!

Morning all, I was just wondering if anyone can help with my mum's latest blood test results at all? She's been suffering from severe thyroid eye disease and has had radiotherapy, etc, and she's now seen an endo after waiting almost a year (she's nearly 70 and had never been referred to one before!). Her GP cut her thyroxine from 150mg to 25mg last year and she's feeling pretty terrible, but as her thyroid had become overactive they said that was the best solution. She's not seeing the endo again for a few months so she wanted to get some feedback in the meantime if anyone has the time. Many thanks in advance.

Free T4 12.1

Free T3 3.7

TSH 4.17 target 4.5

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18 Replies

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  • Hi Jojozo, could you give us the ranges (the numbers in brackets after the results). On the face of it, your Mum's Free T3 and T4 are low and TSH is at the higher end of the range. It should be below 1. This means she needs more thyroid hormones. 25 mg of Levothyroxine is such a low dose, it's likely to be making her feel worse not better. Her GP obviously thinks it's better for her to be under-active than over-active and is not thinking about the 'happy medium', where symptoms disappear. He is looking at the figures and not at your Mum's symptoms. It is not surprising she feels so ill. She needs to go back to her GP soon, let them know how ill she feels and request an increase in Levothyroxine. She shouldn't have to wait to see the endo for this to happen.

  • Thanks so much for the reply Scazzoh, that's so helpful. They haven't given her the ranges annoyingly, but she's going to go back to her GP and talk to her about it. As with everyone with thyroid problems (myself included) doctors seem to look at the results and not really take any notice when you say you can't get out of bed in the morning!

  • Hi that's a massive decrease in levo in one go, normally they would decrease by say 25mcg at a time and then retest in 6weeks to see where your levels were no wonder your mum feels terrible, I would find another gp as this one knows nothing about how to treat the thyroid. We really need to see the ranges as scazzoh has said to get an accurate picture. When on levo t3/t4 need to be in top quarter or top third of ranges and tsh needs to be around 1.0 or below this is where most of us feel well, also with thyroid eye desease it helps to keep Tsh suppressed as this helps stops antibodies attacking. Also has she been advised to take selenium to help with the Ted 200mcg per day is the normal dose.i wouldn't wait for endo appointment try to get increase in meds now if you can see another gp in the practice take the pulse magazine article by dr toft which state's what is the appropriate dose of levothyroxine is that which restores euthyriodism and serum tsh to lower part of the reference range -0.2 -0.5mu/l. This is available by e-mail from.

    Louise.roberts@.org.uk

  • Thanks so much for replying Raventhorpe. I did some research myself and suggested to mum that she take selenium so she's been taking that for a little while, but it sounds like she needs to up her dose. I'll definitely track down that article too. Her GP doesn't seem very clued up at all. I realise that they're general practitioners and not experts but no one has been keeping an eye on her thyroid problems. She had to fight to be referred to an endo, which I find shocking when she's never, ever seen one!

  • It would be a miracle if her thyroid had become 'over-active'. Thyroids just don't do that sort of thing. If you're under-active, you stay under-active. However you could be over-medicated...

    But, I doubt that, too. It's possible they were just looking at her TSH, and that was nice and low. A low TSH does not, on its own, mean that you are over-medicated, because the TSH is irrelevant once you are on thyroid hormone replacement, unless it goes high - like hers. It can go as low as it likes, it won't hurt her. Her doctor obviously doesn't know much about thyroid. To reduce someone's dose from 150 to 25 - even if it wasn't in one go - is inconceivable. She couldn't have been that over-medicated.

    Anyway, now she is obviously under-medicated, and must be suffering badly. Once you are on thyroid hormone replacement, the TSH should be one or under. And if they are targeting 4.5 for her TSH, they are going to make her very, very ill. I think she should get a second opinion - preferably, with someone who knows something about thyroid. :(

  • Thank you Greygoose! I agree. The dose wasn't put down all in one go but it was cut from 150mg to 50mg in one hit, and then cut again off the back of another test. I'm so frustrated on her behalf because she has to go to bed every afternoon and doesn't have the energy to do anything, which isn't much of a life. She has the odd day when she feels like she's got this amazing burst of energy and she can actually get things done, and then the following day she's back to being exhausted again. I'm hoping the endo will help her more once she goes back, but they leave so long in between appointments (I realise they're very busy) that in the meantime she's really struggling.

  • I could weep for her! What a stupid moron! He wants taking out and shooting!

    Would it not be possible for you to get some for her, privately, in the meantime, so she doesn't have to suffer for all that time? You can buy T4 on-line. It's criminal, it really is!

  • She's got some supplies from her old dose so she's going to put it up to 50mg herself and see how she gets on. I'm so angry about how crap GPs are with thyroids, and also how loathe they are to refer people to endos. I paid to go privately in the end and it was only then I got a proper diagnosis, having had hypothyroidism for over 20 years *Rolls eyes*

  • NHS endos are often worse than GPs. They're usually diabetes specialists who think they know something about thyroid. They don't.

  • I've seen mine twice in a year and a half and he doesn't even do blood tests, which I feel makes it slightly pointless! I'm going to cancel my next appointment. It's more annoying than helpful.

  • Change GP quickly

    Email Louise at Thyroid Uk and ask for list of thyroid doctors if you can't find one

    Levo dose should never be reduced by such large amount- even 12.5 mcg is noticeable.

    Get the test results from BEFORE her dose reduction - to see why GP reduced. Suspect GP freaked out at a suppressed TSH. She probably wasn't even over medicated most like FT3 & FT4 were in range. (Probably weren't even checked)

    Even if she was marginally over medicated, a small reduction of 12.5mcg or 25mcg can make enormous difference

  • Thanks so much SlowDragon, I'm going to pass all of these answers on to my mum. They cut her thyroxine from 150mg to 50 in one fell swoop and it knocked her for six. At the same time she was having steroid IVs and radiotherapy and now she's on Mycophenolate. She's put on a lot of weight and to top it all off she's just found out she's suffering from arthritis in her knees, so I think she feels like she's falling apart! At least if they can her thyroid working well again it will be one less thing to worry about.

  • Get her vitamin D, folate, B12 & ferritin levels checked - common to be very low when hypo- lots of posts on here about this

    She will probably need to increase dose back up very slowly if been on reduced dose any length of time

    It might be a tiny little pill, but thyroxine is very strong - it affects every single cell - we have to increase very slowly to give body time to adjust. And lowering dose is even harder to adjust to

    Always get blood test 6-8 weeks after any dose change - (or any change in brand)

    test should be early morning, fasting and no Levo in 24 hours before (take immediately after test)

    Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Especially no other meds

    If she has Hashimotos (high antibodies) then look at food intolerances (usually gluten) & leaky gut

  • I think she needs to see someone privately really. I saw a private doctor a couple of years ago and I was diagnosed with leaky gut and Hasmimoto's but my mum's never had extensive tests done, just the standard ones from the doctor which don't tell you an awful lot. I strongly suspect she suffers from the same things as me. Sadly I've found that GPs find it annoying when you present them with a diagnosis. One doctor looked at me blankly when I told her I'd been diagnosed with Hashimoto's, while another one told me that leaky gut "sounds like a load of old nonsense."

  • I don't know why it says "target 4.5" on your mother's results. That is far too high and is much, much higher than the average TSH of women of 70 with no thyroid disease.

    Take a look at this graph :

    web.archive.org/web/2004060...

    It shows you the distribution of TSH in women of all ages with no thyroid problems.

    The numbers were gleaned from this research paper :

    eje-online.org/content/143/...

    If you look at the right-hand half of Table 3 you will see that for women with no thyroid disease aged 70 - 79 the median TSH is 1.7. When looking at the middle 95%, the lower limit was 0.39 and the upper limit was 3.7.

    By targeting a TSH of 4.5 your mother's GP is making sure your mother stays very ill.

  • Thanks Humanbean, that's really helpful. It's so tricky! I think the answer is for her to go privately. It's a lot of expense but it seems like the only way she'll get proper answers.

  • Go back to her GP with advice from Thyroid Uk - email Louise for an article on treatment ranges :

    louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    But the gist is this : Both FT4 and FT3 should be towards the top of the range and TSH should be < 1 .

    Emailed it to my GP and it worked wonders.

    Good luck

  • Thanks so much!

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