I started Levo 50 in January but only got up to 75mg in October. I just had my most recent blood test result - TSH only - and as it’s 0.09 they want me to reduce rather than increase Levo. I asked for the FT4 result, which they haven’t got, and they’ve agreed to ask the lab for that (10 days later?) and talk again.
In October , on Levo 50, TSH 0.91, FT4 was 22% through the range.
In December, on Levo 75, TSH 0.09, FT4 tbc
I was hoping to go up to 100 Levo, and then have a private test to see how FT3 was doing, but they want me to reduce Levo rather than increase. I won’t accept a decrease but feel I need an increase as the Levo did help for 5 days after the last increase, but that was it, didn’t feel any different otherwise. I take Teva - no problems with it, but it isn’t doing anything for me ( apart from more energy for five days).
Obviously I need to know what T4 and ultimately T3 are doing, and I’ll get a private test done sooner if necessary.
Does the TSH result preclude an increase in Levo? Should I be asking for the increase? Should the TSH have dropped that much before I reached full dose?
(Test was fasting at 8.45, biotin stopped five days before.)
I continue to supplement D , B12, B complex, and magnesium
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Bearo
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You should request both Free T4 and Free T3. The TSH is from the pituitary gland not the thyroid gland. Therefore as T3 is the Active Thyroid Hormone I think they should test both.
Are you aware that the blood draw should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose and the test and take it afterwards.
Important did you remember to stop taking vitamin B complex a week before BLOOD TEST?
If not test results may be invalid - biotin in vitamin B complex can falsely affect test results
You need to refuse to reduce levothyroxine while you get FULL thyroid and vitamin testing done .....almost certainly via private testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I stopped all B vitamins five days before...hope that was enough. Will now get the private test....I had been waiting to raise T4 and vitamins B12 and D. D was up to 95 in October but B12 only 348 and I’ve only just started supplementing that.
I don’t understand what a low TSH means on mono therapy.
I would say I'm not comfortable reducing the levo until I have both free T4 and free T3 results, so that I knew where my actual thyroid hormones were ...
Personally I like both frees in the top quartile of the lab range; I certainly wouldn't want a reduction in levo if either were in the bottom half of the range ...
I have refused a reduction - medic thinks I’m now hyper. I’ll get the other tests done, but can’t believe my T3 will be high as I dont feel any different to when I started Levo.
I'm a far less patient person than you clearly, lol, but I'd simply buy a private test ASAP. In fact for a hundred pounds and more, I'd go for the Advanced well woman test on Medichecks and get a complete picture of vits too. Then you'll have the info to get good advice here as well as to arm yourself for your next chat with the doc.
Yes, I will have to get the private test. I’d been waiting because last time GP did T4 and the folate, ferritin, B12 and D. T4 wasn’t very high and nor was B12. D was climbing as I’d been supplementing. I wanted the T4 and vitamins to be higher when I get the T3 in the private test. I’d be very surprised if my T4 and T3 have shot up - I don’t feel as though there’s been any change.
Happily jogging along at 0.02! Discussed with cardiologist fine by her. Dr said ok stay on 125! Di
Yes, if I felt I was already on a good level of medication I would feel more comfortable. It’s one thing refusing a reduction, but it’s another asking for an increase with a low TSH and nothing else tested!
Yes, I do know that. But what does it mean when it drops low before reaching full dose? If my T3 turns out to be optimal that will be one thing, but if it’s low?
Thanks, everyone, for your comments. I’m going ahead with a private test while waiting for nurse practitioner (didn’t even get to speak with a GP) to see if there’s a T4 result. I know I need the T3 result, too. I just feel no change on Levo so far, so see no point being on such a low dose (75mg). I’ve refused a reduction.
I’ve only just started supplementing B12 . (Stopped all B vitamins 5 days before blood test). It could be my symptoms are low vitamins and thyroid is ok?
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