How do you know it is working?: Started .25 mcg... - Thyroid UK

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How do you know it is working?

RiderontheStorm profile image
16 Replies

Started .25 mcg of Lovoxyroxine daily bout 3 weeks ago and have not felt any different when the doc said it would make me feel better and not so tired? Not due for another blood test until 6 weeks pass to see the numbers. I was TSH 4. 8. Thanks.

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RiderontheStorm
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16 Replies
tattybogle profile image
tattybogle

To be honest, I think your Doc was being over optimistic about you feeling the effect of the small 25mcg dose . They do have to start at a very low dose for people with heart issues , to allow the body to get used to the increased hormone gradually without placing strain on the heart.. but 25mcg is not likely to be enough to have much affect on fatigue .. however , you might feel a little bit better before the 6 weeks blood test .. and you should then be able to increase your dose after that blood test.

It's quite normal to not feel anything much for 2/3/4 weeks when you first start taking Levo (even if you start with 50mcg) then there is often a week or so of feeling a bit better ,, followed by feeling less good again before the next dose increase starts to improve things again... which may improve things faster, and for longer , before feeling less good again . but not as bad a previously ...... replacing thyroid hormones is a bit like

~ nothing at all for a couple of weeks.

~ two steps forward , one step back.

~ three steps forward, one steps back

~for the first few months until you get up to the right dose for you.

~ Then hopefully .... you stay feeling better.

GP's are a bit too quick to tell people "they'll feel better in a couple of weeks "

RiderontheStorm profile image
RiderontheStorm in reply totattybogle

Thanks for having a more comprehensive answer. I have had to deal with Afib previously and hoping the upcoming blood test shows some material improvement.

NWA6 profile image
NWA6

Hey 👋 are you elderly or have underlying or heart conditions? 50mcg is the usual starter dose otherwise, so o don’t expect you’ll feel much of anything. Have you got full thyroid results?TSH

FT4

FT3

Antibodies?

RiderontheStorm profile image
RiderontheStorm in reply toNWA6

TSH 4.8 Afib ish and T4 is 1.21

NWA6 profile image
NWA6 in reply toRiderontheStorm

AFib ish? 🤔 Do you have ranges for your FT4 - I’m assuming because of the result that it’s an FT4 test and not a T4 test?

So no FT3 done? Antibodies? Why have they started you on thyroxine?

RiderontheStorm profile image
RiderontheStorm in reply toNWA6

started based on blood test and high TSH

RiderontheStorm profile image
RiderontheStorm in reply toRiderontheStorm

Update on TSH 4.8 on .25mcg of Levoyroxine - 6 weeks later happy to report that my TSH level has dropped from 4.8 to 3.33 into the normal range. Good thing as I have other medical issues to deal with. This is just one less now. Thanks!

😃

tattybogle profile image
tattybogle in reply toRiderontheStorm

TSH 3.33 is still too high for someone on Levo (unless you feel well )

So GP should increase levo to 50mcg as a result of these latest tests if you still aren't feeling any better.

References for keeping TSH lower in ALL patients:

This one ..... from page 13 in the liothyronine (T3) guidance... sps.nhs.uk/wp-content/uploa... ...... NHS consultant endocrinologists may start a trial of combination levothyroxine and liothyronine in circumstances where all other treatment options have been exhausted.

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine.

(TSH 0.4-1.5mU/L)

2. Where alternative causes of symptoms have been excluded, see box 1 below"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This one ..... from PULSE magazine for GP's... The article is available from ThyroidUK

If you want a copy of the article then email tukadmin@thyroidUK.org

and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This Graph showing TSH in healthy population ..... web.archive.org/web/2004060... (show's most are around 1 , 4 is extremely rare in healthy people )

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

plus This one ........ found in GPonline.com 15th April 2010. gponline.com/endocrinology-...

"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Oh and This one .... gp-update.co.uk/files/docs/...

"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).

If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .

RiderontheStorm profile image
RiderontheStorm in reply totattybogle

WOW. Thank you tattybogle for all the information I need to read up on.

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Are you currently taking levothyroxine waking or bedtime

Likely to need several further increases in levothyroxine over coming months

Retesting 6-8 weeks after each dose increase

Essential to test vitamin D, folate, ferritin and B12 levels too

Have you had thyroid antibodies tested yet

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Autoimmune. Low vitamin levels are particularly common. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

TaraJR profile image
TaraJR

Do you know why you were put on such a low dose?

NICE recommend your dose is based on your weight. 1.6mcg daily dose per 1 kilo of body weight.

"Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease."

nice.org.uk/guidance/ng145/...

Lucy1000 profile image
Lucy1000

I was also started on 25 mcg which made me wonder if you too are being treated by your regular doc. It has been a long journey for me and I don't always feel like my issues are resolved, but the first step for me to feeling somewhat better was being seen by an endocrinologist. She was able to dose me a little more aggressively than my regular doc was willing to do and she was eventually willing to let me try T3 which helped a whole bunch. She did not suggest eliminating wheat from my diet which was also a big breakthrough in feeling somewhat better. I still go through a summer slump for whatever reason (still searching for an answer to that!) but feeling pretty good right now. Wishing you success on your journey. It is so frustrating to lack energy and stamina.

RiderontheStorm profile image
RiderontheStorm in reply toLucy1000

Thanks Lucy for the info and yes it is my new primary Doc. I have an "interesting" case as he calls it as I look very muscular and fit I also suffer from Afib, PE's, chronic pain and an asymptomatic brain tumor. So juggling all that is precarous as I am still staying very physical for someone 65 looking 55 and acting 45. Laugh or cry I would rather laugh and dance forward as I can.

RiderontheStorm profile image
RiderontheStorm

Update - With all the is going on with me the Dr has doubled my Dosage to .50 MCG and we are shooting to get me down to under 2 - Like you all referenced to me. Thanks!

helvella profile image
helvellaAdministrator in reply toRiderontheStorm

Just wondering if you realise that you are quoting your dose as being half a microgram (rather than 50 micrograms)? :-)

I'm sure most here will understand what you mean. But, putting a decimal point before the 50 (as in .50), changes it completely.

Perhaps you have seen doses quoted in milligrams? Such as .050 milligrams? (Which is another way of saying 50 micrograms.)

RiderontheStorm profile image
RiderontheStorm in reply tohelvella

No I did not realize that. Reading off the bottle 50 Mcg. hope I have that correct now.

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