I've been on a dose of 100mcg for about 8 years - male 51, 90kg. I did have an increase in dose to 125mcg a few years ago, but went hyper so they dropped the dose.
I had a extensive private blood test last summer (June 2024) as i've been feeling fatigued for a while. My TSH came back as
TSH 2.04 (0.27-4.20)
Free T4 16.7 (12-22)
Free T3 4.3 (3.1-6.8)
I've just had the results back from my annual NHS TSH test and it's come back as:
TSH 4.99 (0.3-5.5)
Free T4 17 (12-22)
Free T3 4.4 (3.1-6.8)
My previous NHS result in Nov 2023 was 1.64 (0.3-5.5). No T4/3 taken.
I'm just a bit shocked that it could have risen so much in 12 (ish) months, both tests in the morning without dose taken. My gall bladder was removed in April 2024 if that's of any relevance?
I've a GP appointment on Monday I'm going to request that they up my dose to 125mcg on alternate days - would that be the right way forward? Thanks
Edited - just to say that i did previously ask for an increase last summer but at 2.04 the GP refused to increase the dose.
I've also had a blood test for Pernicious Anaemia and this came back as negative.
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I would 100% ask for an increase in thyroid medication. TSH should always be under 2, with many members reporting they feel best when this drops under 1.
Many members are fine adding 25mcg in one go, but I personally like to go slowly (as I get adverse reactions) so add 12.5mcg initially, then another 12.5mcg when well tolerated- this gives the same result of 100/125mcg alternate days.
Have you checked key thyroid vitamins recently (ferritin, folate, B12 and vit D)?
Many thanks for this - do they offer 12.5mcg tablets? or do you cut in half?
As part of my PA blood test they also tested the following:
folate - 8.14 (3.89-26.8).
Active B12 - 68 (37.5-150) previously 40.
Ferritin - 311 (30-400) This is always high in range so i've been told i should ask for Trans Sat test to make sure i dont have Haemochromatosis? Apparently even though in range a male shouldn't be over 300.
Last Vit D was in summer at 66 (50-200) i take 2000 drops with K2 daily.
It is quite possible that you had some residual thyroid function left for quite a while and it might be that your thyroid has decided to finally 'give up the ghost'. A TSH of 4.99 means your pituitary is asking your thyroid to produce more hormones, which it cannot do. And it is definitely too high when on replacement therapy, therefore you should be given an increase in medication. If your GP is reluctant to act on this (as he could say it is still within the range), you could point out that you are very symptomatic and would like to try a trial increase to see if the symptoms get better (they may be more receptive to that).
Your T4 is only 50% through the range, and your T3 only 35% through the range and I suspect that the low T3 is giving you symptoms. Most people feel well when their T4 and T3 are at least 60-70% through the range, so you still have a way to go. I would ask for an increase in 25mcg, but as others have suggested, maybe start slow at first and build up to the higher dose.
I would also work on your folate, B12 and Vitamin D, as they all help to convert your T4 to the active T3, which will help get those levels up. As you are already taking 2000IU Vit D, maybe increase to 3000 or 4000IU for a while to get the level up a bit more quickly.
The ferritin could be falsely elevated, if you have some inflammation in your system (elevated CRP). Have you had a cold or some other infection recently as this can increase ferritin. Or if your thyroid has been playing up and there was some inflammation there, that could have also been responsible.
Many thanks for this. I saw the GP on Monday, and they did indeed say it was still in range! However I pointed out that I'd never had a result so low in all the time I've been on level. They agreed to add 25mcg every other day to my prescription 👍🏻
They are also running another iron panel to check for haemochromotosis.
I've started on B12 drops (but also investigating injections) and will increase my Vit D drops too. I need to look at how to get my folate levels up as well.
No worries, it is a good thing that they have agreed to an increase in medication, I am sure this will make a difference to you in the long term. If your levels are not sufficient after the 12.5 mcg per day, you may have to insist to get the full 25mcg.
You know, according to the NICE prescribing guidelines, a normal replacement dose of levothyroxine is 1.6 mcg per kg of weight. So if you weigh 91kg, your replacement dose should be around 145mcg! Some people may need more, some are okay with less, but it is a useful tool to use, if the GPs won't agree to an increase. I have attached the guidance you can show the GP, if he is reluctant to increase again (scroll down to initiation and titration).
It is difficult to say, as different people react differently. Some people are quite sensitive to a sudden increase, so they would split a 25mcg dose in half and just add 12.5 mcg every day. Others are fine and can add 25mcg every other day.
The half life of levo is 7.5 days, so it stays in the system for quite a while whichever method you choose. When you take levothyroxine, the peak plasma concentration is reached after 3h - so if you are taking your meds, after 3h you would see an increase in your blood levels. Some sensitive people may therefore prefer to increase slowly (e.g., 12.5 mcg every day), so it is more 'smoothed out', where as others are happy to ingest the full 25mcg every 2 days without any problems. If you have a pill cutter, you could split the 25mcg and take the same amount every day, if you think a more gradual approach might work best.
You can always try it for a week or two and see how you get on with it; if you feel okay, carry on. If you feel a marked difference on the days you are taking it, then you can always opt to split! 😉👍
It is perfectly possible to see a shift in TSH of something like 1 just due to time of day the blood was drawn.
Different analysers will produce different results.
There are many known interferants with TSH (and other) tests.
Different absorption of tablets is also an important issue - whether due to make, dosages, changes to eating times, other medicines, supplements, etc.
But a 25% increase that you had was probably not ideal. Even if you needed 125, it might have been better to go through a few weeks of 112.5. But that might have been sufficient.
It is very difficult to get right.
I do believe that gall bladder might be having an impact. But I simply do not know enough.
I know it's so difficult to pull different conditions apart to try and find out what is causing my fatigue and brain fog.
When i discovered I had a dodgy Gallbladder, and discussed with the surgeon whether this may have been the cause of my ongoing symptoms he confirmed it could have done. But nearly a year later after removal and i feel worse than before.
So now back to my thyroid, parathyroid and Vit B12/D
It's costing me a fortune in private bloods to try and get to the bottom of it.
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