Hi all
I was diagnosed with hypothyroidism a few months ago and prescribed Levothyroxine 50 mg
Within six weeks or so my TSH had gone down from 10 to 1.2
I am.now feeling jittery, tired and very emotional. I just felt 'flat' and exhausted before. I don't know which is worse.
Should I request a decrease in my Levo do you think.
Maybe I'm just depressed?! I can't figure it out and would welcome any pearls of wisdom. Thank you.
Buntikins
Is TSH all that is being tested?
For a full picture of your thyroid status you need TSH, FT4 and FT3 but unfortunately it often happens that when TSH is in range the lab won't test anything else. This is why hundreds of us here do private tests.
Did you do your test as we always advise :
* No later than 9am
* Nothing to eat or drink except water before the test
* Last dose of Levo 24 hours before the test
* No biotin, B Complex or any supplement containing Biotin for 3-7 days before the test
Hi SeasideSusie. Thank you for your reply. I had seen the advice on testing, on this site, so followed it - thank you. My GP did test for T3 and for antibodies (both normal) and did a whole range of other things - but not T4. He was lovely, and very thorough other than not testing T4. I was a bit surprised. I am abroad at the mo, so don't have access to my results but will post them when I return. Thank you!
I really don't think you ought to ask for a reduced dose. 50 mcg is only a starter dose, anyway. And it sounds like they've left you on this low dose for far too long. It should have been increased to 75 mcg six weeks after starting it.
You possibly are depressed. But, that would be because you're hypo. Depression is a symptom, not a disease.
Does your doctor only test TSH? That really is totally inadequate because once it gets to about the level of yours, it's a very bad indicator of thyroid status. It isn't even a thyroid hormone. You should at least have the thyroid hormone FT4 tested. Preferably FT4 and FT3. 
Thank you grey goose. He did test T3 and antibodies (both normal) and a whole list of other things - but not T4 🙁 I think they may have started me on 50 mg due to my age. I'm 67. I had a chat to a pharmacist about contraindications with other meds and he mentioned it was the right dose, in the conversation.I understand what you are saying about dosage, but am very confused. Why would GP increase the dose if 50 mg had effectively brought my TSH into normal range? I was thinking that keeping me on the same dose may have lowered it too much. Does it not work like that? My symptoms improved somewhat for a couple of months and now I seem to have 'crashed'. I was so optimistic 🙁 Thank you, greygoose.
Buntikins
Why would GP increase the dose if 50 mg had effectively brought my TSH into normal range?
It's not about bringing TSH into range. TSH is useful for diagnosis but once diagnosed and on Levo then TSH is of little use. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends the signal (TSH) for the thyroid to make some and the TSH will be high and this is when you get a diagnosis.
Once on Levo the TSH result is no longer important (unless it's high), it's the FT4 and FT3 results that tell us our thyroid status, they are the thyroid hormones.
Also, the aim of treatment is to alleviate symptoms, not just get a number into a range. You can have all your results in range and still be symptomatic, so it's finding the optimal levels for you to feel well.
Aah...I see. I thought once TSH was in range, the job was done, as pituitary no longer needed to produce excess TSH. It's all more complex than I thought. I fully agree about symptoms. I just want to feel well!! Aargh!! Thank you so much.
That's what most doctors think! Unfortunately, they're so so wrong. Yes, it's far more complex than most doctors realise.
He did test T3 and antibodies (both normal) and a whole list of other things - but not T4 🙁
There's no such thing as normal. When a doctor says 'normal', he just means 'in-range', but the ranges are so wide that it's where within the range the result falls that counts. But doctors haven't a clue how to interpret lab test results. Do you have the actual numbers?
I think they may have started me on 50 mg due to my age. I'm 67.
If you're 67 I'm surprised he didn't start you on 25 mcg (not mg) because they have this weird idea about older people needing less thyroid hormone.
I had a chat to a pharmacist about contraindications with other meds and he mentioned it was the right dose,
I have less respect for most pharmacists than I do for most doctors - which is saying something! Your pharmacist is wrong, but what does he know about thyroid!?! 50 mcg is a starter dose. It's supposed to be raised slowly. With all hormones you start on a low dose and raise it slowly until all the related symptoms are gone and you feel well again. I've been on quite a few hormones in my time and that's the way it's always done.
Your TSH is what is called 'euthyroid', i.e. that of someone with no thyroid hormones. But, hypos are not euthyroid people and the rules don't apply. Most hypos need their thyroid hormone levels higher than euthyroid people, which means the TSH is usually lower - under 1, or even under the range. And this is one of the reasons that the TSH is such a bad indicator of thyroid status.
Very weird to test FT3 and not FT4, you need both. Especially as you are taking T4 only. T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. But you cannot tell how well you do that unless you test both FT4 and FT3, and compare them. That is something the TSH really cannot tell you. And, not everybody is good at convertion, so you need to know. Symptoms will not go until your FT3 is optimal. TSH does not cause symptoms whether it's high or low.
Thank you so much greygoose- this is so informative. I can't publish my results at the mo as I'm abroad but will do when I return next week. My first proper hol for years blighted by hypo! 😩 Last time I was in Southern Spain (2005) I felt so alive! I know 17 years make a difference but I am otherwise very fit and healthy! I hate this illness. Whinge over - apologies and many thanks.
I agree with SeasideSusie and greygoose (as always) . Can I suggest you get a private test for FT4/FT3 & TSH . The basic test using the discount code is £26 with Monitor My Health. You can post the results on here and get more advice. Knowing where your levels are is important before you decide if you are over or under medicated.
Thank you SarahJane.I have T3 and antibodies results at home (both normal) - I am abroad at the moment. I spoke to GP on phone before tests- he sounded wonderful and told me he was going to test for a great long list of things in addition to thyroid, so I was surprised he didn't request T4. Thank you.
Remember “normal “ is not the same as “optimal” when we assess results 🤷♀️
Hi, I found myself really sensitive to taking levo at the start - lots of “hyper” symptoms, like sweating, jittery, unable to sleep. It took time and patience and sticking with the gradual increases. And getting reassurance from the lovely people on here. (Also would mention I have found it useful to purchase levo when in Spain and Italy in the past without prescription, rather than stressing about the short prescriptions in the UK and a pharmacy being out of stock. Very cheap as well. Guess depends which brand you need though.)
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