Hi all, my hypothyroid journey has been a rollercoaster but this latest development is baffling me and am wondering if anyone has any similar experiences or insight.
At my recent blood test, my TSH increased (showing I've gotten more hypothyroid apparently) but my T4 and T3 also went up to the highest they've been in the past 8 months since I was diagnosed. My levo dosage the past 6 weeks have been an average of about 37.5mcg a day.
Lastest results as of last week:
TSH 4.0 (0.27 - 4.2)
T4 16.5 (12.0 - 22.0)
T3 3.40 (3.10 - 6.80)
Three months ago, I had my dosage increased from 25mcg to 50mcg. I saw very brief improvement for the first few days, but it went downhill after about a week. I became extremely fatigued, bloated and constipated and on some days, I felt hyper (extremely warm, couldn't sleep, jittery, racing heartbeat). My eyes also started becoming very dry, puffy and extremely red/bloodshot and I was starting to wonder if I had graves but it simply didn't make sense given my blood test results after 4 weeks of being on 50mcg: TSH 2.74, T4 12.28, T3 3.03. I had my antibodies tested:
TSH Ab <1.1 (range <2.0)
TPO Ab <1.00 (range <5.50)
Thyroglobulin Ab 2.5 (range <4.11).
Anyway, I couldn't take the symptoms anymore and I started tapering down my dosage. I am currently on 25mcg and 50mcg on alternate days - when I feel the extreme fatigue coming on, it's a sign that it's too much for me and I reduce my 50mcg to 25mcg (and vice versa when I feel lethargic, hair falling etc. I increase my dosage). My eyes have improved (not as red/puffy anymore) but I have booked an appointment with an ophthalmologist next week anyway.
My question is, could my TSH be higher because my body is adjusting to a reduction in my medication? Should I be focusing on my T4 and T3 becoming more optimal (and ignore my TSH being slightly raised)?
(FYI My endo simply told me to stop taking levo when I told him about my red eyes, constipation, fatigue etc.)
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PeppaBun
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Hi , Yes it's probably the the reduction from 50mcg to between 25 /50mcg that has raised the TSH.So TSH (Thyroid Stimulating Hormone) is doing what it should in the circumstances ie. it has raised to ask for more thyroid hormone to be produced (or swallowed!)
Endo's advice to stop completely seems typically unhelpful
Your latest results do suggest you need to increase dose.
And your previous results on 50 mcg also suggested you needed to increase , not decrease.
TSH is usually best nearer 1, that is where most healthy peoples is.
Have you always been on the same brand of Levothyroxine ?
Some people don't get on with one brand and do better on another.
Assuming TSHab means TRab (thyroid stimulating hormone receptor antibodies), then you do not have antibodies for either Graves or Autoimmune Hypothyroidism.
But not everyone with autoimmune hypothyroidism has antibodies, so this doesn't actually rule out Autoimmune Hypo (Hashimoto's)
25mcg and even 50 mcg are very small doses and can actually have the effect of leaving you with less thyroid hormone than before treatment, because the pituitary (TSH) senses the extra and turns down your own production from your thyroid, so until you take a high enough dose to replace all that you need, you can be worse before you get better.
Perhaps this explains some of your your symptoms ?
Thanks tattybogle for your reply. Yes I've been on the same brand all along. What you say makes sense but I actually did try going up to 75mcg for just one day when I was desperate for relief – shortly after I took it I had a racing heart and jittery, even a short walk left me breathless and feeling as if I was going to pass out. I actually had to skip my meds the next 2-3 days before I felt better.
I agree that logically it sounds as if I am undermedicated but I'm curious why my T4 and T3 are "better" when my TSH is higher, I wonder if I give my body some more time to adjust, if it will be able to find a better balance where the TSH isn't too high but T4 and T3 are more optimal.
(to add: I agree that the endo was being unhelpful, I had seen a different endo prior who was equally clueless though very nice - she prescribed me with 6 months' worth of 50mcg levo and told me she trusted me to trial my dosage by myself...!! I am seeing yet another endo in January who focuses on pituitary, adrenal and thyroid as opposed to diabetes. Fingers crossed he provides more guidance)
After any change in dose you can expect to feel up, down, and all over the place for several weeks until things settle down. I've learned to wait for at least 8/10 weeks on a new dose before deciding how it feels , and accept that i might feel different every week for the first few weeks.
I also find changing dose by 25mcg too big a change in one go , so nowadays i only go up or down by 12.5mcg at a time. (cut a 25mcg in half)
Perhaps you would have done better to increase from 50 to 62.5 rather than 75,and continue for 6 weeks.
Many people report feeling better briefly if they stop Levothyroxine, (and they interpret this to mean the dose was too high), but this doesn't last. This could be explained by the fact that the body senses the loss of hormone and kicks up it's own production, but it can't keep up so then you feel hypo again after a few days/weeks.
The body likes consistency, if you don't give it a consistent dose it won't know what to expect, and will keep trying to rebalance everything , so you won't stabilise anything.
The fT4 and fT3 test shows the result of your doses for the previous few days, but the TSH shows the result of your dose for the previous few weeks, and might not be much changed by your dose for the few day's close to the test.
There are so many complicated things that add up to the TSH /fT4/fT3 results that it is better to take a longer view of any blood results, and look for trends over time.
Taking too much time trying to work out the cause of one individual unexpected result will drive you nut's and not get you anywhere with any certainty.
Mine have recently gone up when they should have gone down, and down when they should have gone up, with no logical explanation. This happens.
....especially if you have an autoimmune hypothyroid disease, which can have it's own effect of suddenly releasing more hormone from the thyroid each time a bit of it is attacked, which raises ft3/4 and lowers TSH temporarily, and then when those hormones are used up or excreted from the blood, the fT3/4 fall to lower than they were before, because there is now less thyroid gland, and TSH rises again to higher than before .
If you are having problems on Levo, it's worth would trying to get a different brand of tablet . For example many people have problems on Teva brand, but a few really prefer it.
Thanks for this info, especially about TSH reflecting the past few weeks' worth of dosages and T4/T3 reflecting current amounts. I do agree that trying to make sense of it is nuts but I guess it's better to have a basic understanding at least, rather than to simply follow the numbers.
I am currently based outside of the UK so I'm on euthyrox. It's the same size and colour pill for both 25mcg and 50mcg.
I will continue on this alternate day dosage then, and see what happens at my next blood draw. If need be I guess I will then increase my dosage accordingly.
It is good to try and understand it all, I just meant that because there are always so many 'unknowns' with blood tests, and the body's balancing mechanism, you have to understand that Dose and blood test results are not like maths where 2+2 will always = 4
It's more like making bread.. you can weigh the ingredient's exactly , but depending on x/y/z , you will get a different texture loaf each time ...
I was deliberately vague about 'few days' and 'few weeks', because how long it takes TSH to rise /fall can vary a lot. Hence the 6 week wait for a blood test,
ie, In an experiment, within 14 days ,my TSH has gone up to 7 from 0.5 after i stopped taking any levo for about 12 days, but that could be different for everyone.
But, i took normal Levo dose for just 2 days before the test was taken and the fT4 and fT3 were the same level as usual.
Any way . 'slow and steady' is the way to go with thyroid hormones, If you think you've waited long enough ...wait a bit longer , and if you think you need to make a change .... make as small a one as possible.
Hi PeppaBun,When I first started on Levo at 75mg I had some hyper symptoms and felt worse rather than better. I think the body can struggle to adjust initially - it certainly felt that way to me.
I called the GP who lowered the starting dose to 50 for 4-6 weeks before increasing to 75 again and eventually 100.
Some of us don’t start to feel better straight away. I felt worse initially! I’m absolutely no expert but I completely agree with tattybogle that your results look under medicated, not over medicated: I’d suggest increasing at 4-6 week intervals to give the body a chance to catch up!
Hi Lotika, thanks for your reply. I am very wary of increasing my dose again after my previous experience! As of now I do think I will continue staying on this dosage and see how my body "balances out", if it gets worse at my next blood draw then I suppose I will have to increase my dosage.
I am planning to see a different endo in January so hopefully he has more insight.
I hear you! I certainly felt very uncertain about the levo to begin with and was wondering if it was making me worse, not better. That being said, I would urge you to trust Slow Dragon’s advice - that’s someone who knows their stuff re thyroid way better than me! And, as my dose increased, I did eventually start to feel better... not wholly so, but that’s a longer story for another day!
Hi SlowDragon, I wonder if it's necessary to increase levo to full replacement if I have a subclinical hypothyroidism diagnosis? As I have no antibodies, I don't think I have hashimoto's or grave's (though I know some present without antibodies). I was very stressed during the time I was diagnosed as I was dealing with another medical issue at the time (which has since been resolved) and I wonder if my thyroid could have slowed temporarily due to the stress.
I was first diagnosed with subclinical hypo in May with TSH - 7.16 mIU/L (range: 0.65 - 3.7) & Free T4 - 9.8 pmol/L (range: 8.8 - 14.4).
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I've done an ultrasound and they considered it "normal" (that's all I got from the report - and the doctor who oversaw it said there was nothing abnormal). Oh well! I'll just experiment some more and see I suppose.
It is very unlikely that you will have been prescribed Levo from just the one out of range result. NHS guidelines for starting treatment of subclinical hypo require two over range TSH's, done 3 months apart. This is to avoid treating temporary cases who have out of range results for other reasons.
(My TSH was only about 7 when diagnosed with fT4 mid range , but i had TPOab 's through the roof ,so it was clearly autoimmune, and my TSH was increasing and my fT4 falling each test )
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I just meant that because there are always so many 'unknowns' with blood tests, and the body's balancing mechanism, you have to understand that Dose and blood test results are not like maths where 2+2 will always = 4
Low TSH with normal T4 and T3
normal TSH and T3 but Low T4
T4 low, TSH rising, T3 fluctuates
Does an increase in t4 necessarily mean a reduction in TSH? 
Can I decide whether to go up on meds with only a TSH reading (GP won't do T4, T3)?
