My TSH is 0.01 ! Can I stop my levothyroxine 50mcg or weaned off safely?

[Vivoali]

Was diagnosed with hypothyroidism/ hashimoto’s 20 years ago , have been taking same dosage but now my TSH is 0.01 and Free thyroxine (T4) 1.7 ng. I feel super tired , no energy, heart palpitations and some weakness in my legs . My doctor haven’t contacted me yet so wondering if anybody here have the same experience . I’m 59 years old

[Jazzw]

What’s the lab reference range for that FT4 result?

It’s hard to be sure without that info, but it’s equally likely you need a raise in dosage.

TSH isn’t very useful for assessing whether you’re on enough thyroid hormone replacement when you’ve been hypothyroid for a while.

[shaws Administrator]

If you were on the correct dose of thyroid hormones you should feel you have 'normal health' with no clinical symptoms at all'.

[SeasideSusie Remembering]

Vivoali

Why would you think about coming off Levo?

Hashi's gradually destroys the thyroid, hypothyroidism is then for life and thyroid hormone replacement is necessary.

Your symptoms suggest undermedication, 50mcg is just a starter dose and if you were diagnosed 20 years ago one wouldn't expect you to be on such a low dose.

The most important of the thyroid tests is Free T3 so you need to test TSH, FT4 and FT3 all from the same blood draw.

[tattybogle]

did you previously feel ok on 50mcg ?if so , what were your TSH / fT4 levels like on 50mcg when you felt ok ?

is that fT4 if 1.7 very near to top of lab range ? ~ We can't tell if it's high or not without the lab range .

Your symptoms could be from either a bit too much. or from not enough thyroid hormone .. and TSH isn't always reliable .... so without knowing your fT3 result and the range for that fT4 result, it's very hard to say whether you have too much thyroid hormone or not.

If this fT4 is higher than your 'usual ' AND this TSH is lower than you 'usual ', then trying a slight reduction might be reasonable...... but as for weaning off Levo ~ if you have hashimoto's then "not needing any levo ever again" is extremely unlikely/ impossible .

It could be that your thyroid has recently dumped a load of T4/T3 into your system (as a result of a hashimoto's attack on thyroid),, and this could mean you do need to take less for a short while ,, but once the T4/T3 'dump' has been used up it will be likely that you needed to increase back to 50mcg again.. and quite possible a bit more.

You could try 25mcg for a few weeks and see how you feel., and then get a blood test after 6 weeks .

or 37.5mcg ( eg . 25mcg one day/ 50mxcg the next/ 25mcg /50mcg and so on)

[Vivoali in reply to tattybogle]

Thank you for your detailed response. I did lowered my dose to 25 mcg since Tuesday and that’s exactly what my doctor recommended, she will repeat my blood test in 6 weeks. The range of the Ft4 is 0.8-1.5 ng /dl, my result is 1.7 ng/dl a little high but she didn’t tested the T3, doctor said “ she is taking more levothyroxine that she needs” . Yes, TSH is definitely lower than usual comparing with my last two years my TSH was 0.76 and this the first time they test my FT4!You mention that can be a result of a hashimoto’s attack on thyroid , why and will this keep happening ? I believe I had this kind of symptoms before and never understood why , this is the first time they did the blood test and came so low but I wonder if this is the case when I get a flare up , will there be any triggers for this orbit just happens with Hashimoto’s?

[tattybogle in reply to Vivoali]

with hashi' s... in theory it could keep happening to the thyroid until (after many decades) it's all so knackered it doesn't happen anymore (cos there's no healthy tissue left to damage) .. in reality , nobody ever get's their thyroid tested regularly enough, or get's thyroid scans done often enough to really know what happens/ to catch it in the act / or to be sure how long it will continue to happen .

. presumably there are triggers.... but since nobody really understands what causes autoimmune disease ... nobody really knows what the triggers are either....

Sorry ... i realise that's not much use as an explanation

[Vivoali in reply to tattybogle]

Your explanation actually is really good and makes lots of sense . 👍

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

What’s the range on Ft4 result

ALWAYS test thyroid levels early morning, before 9am and last dose levothyroxine 24 hours before test

Essential to test vitamin D, folate, ferritin and B12 at least once a year

Thyroid

You need TSH, Ft4 and Ft3 tested together

Plus thyroid antibodies tested if never been tested yet

[Vivoali in reply to SlowDragon]

yes I understand is inadequate and this is the first time my Dr decided to test Tf4 , she usually just test TSH , the range for the FT4 is 0.8 - 1.5 my result is 1.7 ., levels were tested before 9:00 am but probably more than 24 hrs before the test. Vitamin D levels are 50 from a range of 30-100 ng, B12 is 400 pg from a range of 200-910 pg and she didn’t test ferritin or antibodies . I’ll request those that are missing to be done in 6 weeks that she wants me to repeat TSH, once I get those results how do I figure where should I be?

[SlowDragon Administrator in reply to Vivoali]

If you haven’t tested TSH, Ft4 and Ft3 together you don’t know if your actually converting Ft4 (levothyroxine) to Ft3 (active hormone)

50mcg is extremely small dose levothyroxine

B12 is not high enough. Optimal is over 500

Testing folate and B12 together next step

(along with thyroid levels)

Iron and ferritin tested together too

What vitamin supplements are you currently taking

[Vivoali in reply to SlowDragon]

Currently I’m taking magnesium and vitamin D

[SlowDragon Administrator in reply to Vivoali]

How much vitamin D

If it’s tablets should be minimum 4 hours away from Levothyroxine

Magnesium four hours away too.

[Vivoali in reply to SlowDragon]

Yes, I do take them 4 hours or more away from levothyroxine. What can I add to increase my b12 from 400 to 500?

[SlowDragon Administrator in reply to Vivoali]

Ideally you test B12, folate and ferritin

Then start supplements if tests show you need them

As you need to know thyroid levels too suggests you test altogether

Assuming you are in the U.K.

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks has 20% off until May 31st

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Do any Private test early on a Monday or Tuesday morning ideally before 9am and last dose levothyroxine 24 hours before test

Don’t take vitamin D on morning of test, until after blood test done

[humanbean]

Are you under the impression that thyroid hormones are dangerous? If yes, then you should read this thread :

healthunlocked.com/thyroidu...

[Lulu2607 in reply to humanbean]

Hi humanbean what a excellent post. Thanks for the link. I'm pretty sure one of the reasons why thyroid as an illness doesn't get the attention or treatment it should by the medical profession is because it's a condition that (correct me if I'm wrong here) primarily affects females. I know that's contentious but it's been shown on many occasions that your gender, amongst other factors affects health outcomes and one of the reasons is because of how women are often viewed by the medical profession.

[humanbean in reply to Lulu2607]

I'm glad you liked my post.

I completely agree about the thyroid being a problem mainly for women is a major reason for it not being considered important. Doctors don't trust women and seem to regard many (?) or most (?) of us as idiots who want attention and drugs. The medical profession is very, very sexist, in my opinion.

[Lulu2607]

Hi Vivoali. Just to add my opinion to the good advice given here, maybe you are now a little bit overmedicated as your results show. It could be that as we get older, less muscle mass or weight changes, hormone changes or any number of things both physical and emotional can affect our hormones, including thyroid and maybe you do need less now. I'm trying to reduce at the moment as my last blood test suggested I was overmedicated but I'm taking it slow. I've had some symptoms similar to those you describe and I can't be sure they're down to overmedication, or is it changing dose or what. The problem is we're advised to wait a few weeks before we judge whether we feel better on a new dose, but it's a long few weeks when you don't feel great. Hope you feel better soon.

[Vivoali in reply to Lulu2607]

That’s exactly what my doctor thinks, she reduced my dosage from 50 down to 25 , just Over a week and I feel so much better , but will see when they repeat my test in 5 weeks . Thank you and I hope you feel better soon too.