Hi, Feeling mighty frustrated with my visit to the GP. I'm on 50mcg Teva levo and wanted to go up to 75mcg to see if I can get my free T3 up to mid to upper range. Long story short, as my TSH was 1.85 she wouldn't increase the dose, and has booked me in for another blood test 7th Jan, which will be 12 weeks on the 50mcg dose. Her concern is that she doesn't want to send me hyper which she thinks is likely due to my TSH 'trend' downwards.
I showed her the Leeds NHS graph which says TSH can be from 0.2 - 2 miu/L but that didn't convince her (thanks for the link forum people!).
My concern is that I 'fail' the TSH test in January and don't get an increase in dose. I did all the right things on fasting, time of test etc (thanks again forum!) and will do again. Is there a graph or table or something that I can show her that will persuade her a TSH 'fail' from her perspective is actually completely normal? Or do I just show her the Leeds NHS chart again? What do you think?
Thanks x
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Have you had vitamin D, folate, B12 and ferritin tested?
If not, insist these are tested in January
Also request FT3 tested. Though NHS lab will refuse to to do it
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine to be adequately treated
Thanks Slow Dragon, I've printed out that report and will use it in Jan. I've been keeping an eye on the vitamin levels using Medichecks, as the status of these has never been mentioned by a GP/endo, but thanks to this forum, I know to look after them and the results are all where they should be.
The GP has noted to test TSH, total T4 and total T3 (as they can't measure free T3 in our local lab, as confirmed by my friend who works there!). I'd have to pay for (another) thyroid panel from medichecks to get free T3.
There are two papers showing that first in athyreotic patients, suppression of TSH by T4 therapy is need to restore preoperative levels of FT3 and second that "euthyroidism" on therapy is only achieved with TSH 0.05-0.2. Anything higher is underused.
Ito M, Miysuchi A, Hisakado M et al.
Biochemical markers reflecting thyroid function in athyreotic patients on levothyroxine monotherapy
Thyroid 2017;27:484-490
Ito M, Miysuchi A, Morita S et al.
TSH-suppressive doses of levothyroxine are required to achieve preoperative native serum triiodothyronine levels in patients who have undergone total thyroidectomy
Thanks diogenes, I've gone and had a wee look at those reports. I still have a thyroid (and Hashi's) and the papers refer to total thyroidectomy, can I still use the ranges quoted? I am not medical and I don't want the GP to throw out anything I show her!
Then you will be in between total loss and none. The differences between health and illness are still there but not so marked as if you had no thyroid at all. The healthy ranges for TSH still don't apply.
It discusses TSH levels in healthy people with no known thyroid disease. Many doctors appear to think that a healthy TSH is in the middle of the reference range, so they aim to keep patients with a TSH in the middle of the range. But the distribution of TSH values is highly skewed and the majority of healthy people have a TSH below mid-range.
Thanks humanbean, I do like a good graph and table! That's really interesting, as I fall ABOVE the mean, median and mode on the chart, and above the median on the table for my age (47). And the chart is for people that don't have Hashi's, so I'd assume that the table for them will different. I am feeling a lot more positive now armed with more information! x
Hi Lyndsay, I’ve posted the stuff below before in response to others with a similar issue. so apologies if you have already read it. Thought I’d post again in case it was any help to you.
Are you hashimotos? If so, this is what my endo told me.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, so they just treat it in the same way but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically it loses the plot and tends to go low. He also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need more of the synthetic stuff than we would of our own - even more than the normal range for some people to make adequate active energy and therefore to feel well. The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
Thanks MissGrace. Yes I have Hashi's, and I totally relate to your feeling c**p but not cr****est. I think when you say to the GP that you are feeling better that's them won the game, so I said I am feeling better on the levo but most definitely not my best. Your summary is excellent, thank you x
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