After increased dose to 100mcg daily - Thyroid UK

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After increased dose to 100mcg daily

Fluffyone profile image
18 Replies

so these are latest bloods after my increase from 75/100mcg on alternate days to 100 daily.

I do feel an improvement. It was a struggle to get Endo to increase as he maintained my levels were in range.

I did the low stomach acid test (Bicarbonate of soda) which suggested it was low

I have an appointment tomorrow with Endo

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Fluffyone profile image
Fluffyone
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18 Replies
Fluffyone profile image
Fluffyone

previous bloods

May 2022 results
Fluffyone profile image
Fluffyone in reply toFluffyone

May bloods continued

Continued
greygoose profile image
greygoose

Unfortunately, endos do not understand that just being somewhere - anywhere - within the range is not good enough. It's not the same as optimal. And, your results are still too low in-range so you are still under-medicated. Your conversion isn't too bad but it's just that you don't have enough T4 to convert. But, I expect he is only looking at the TSH and doesn't know that much about the actual thyroid hormones, T4 and T3. I really don't know what you can do about that.

Fluffyone profile image
Fluffyone in reply togreygoose

Got an appointment tomorrow, would like to get levels up a bit more. Should I ask to increase Levothyroxine to 125mcg but will that drop my t3 level. I’m 74kg, will low stomach acid make a difference? Can I do anything about that?

greygoose profile image
greygoose in reply toFluffyone

I think you should ask, but I don't know if you'll get an increase. Your endo sounds very ignorant.

Why would increasing your levo cause your FT3 to drop?

It's not really about weight - that's just another red herring someone has thrown into the mix, and it isn't always helpful. You need what you need, no matter what. And, yes, low stomach acid would make a difference. There are ways of raising stomach acid, but it's not something I've ever needed to do, so may write a new post asking just that? :)

Fluffyone profile image
Fluffyone in reply togreygoose

thank you

greygoose profile image
greygoose in reply toFluffyone

You're welcome. :)

Jaydee1507 profile image
Jaydee1507Administrator in reply toFluffyone

For low stomach acid I am taking a teaspoon of apple cider vinegar (must have part of the 'mother' included) in a glass of water a day. It should help keep vitamin levels up once you've boosted with supplements and get more nutrition out of the food you eat.

Fluffyone profile image
Fluffyone in reply toJaydee1507

thank you

Litatamon profile image
Litatamon in reply toFluffyone

Some over on the Pernicious Anemia forum take lime juice before a meal, to deal with low stomach acid.

Fluffyone profile image
Fluffyone in reply toLitatamon

thank you

SeasideSusie profile image
SeasideSusieRemembering

Fluffyone

You are still undermedicated as your FT4 and FT3 show.

FT4 = 36% through range

FT3 = 35.14% through range

Most people on Levo feel best when FT4 and FT3 are in the upper part of their reference ranges.

TSH is very low but this is a pituitary hormone, not a thyroid hormone, and it's the thyroid hormones - FT4 and FT3 - which tell us our thyroid status, unfortunately most doctors don't understand this and tend to adjust dose by TSH alone.

Your FT4 and FT3 clearly show that you need another increase in your dose of Levo and not the piffling amount that you were given last time, you need 25mcg extra per day and retest in 6-8 weeks.

It may be difficult to get your endo to raise your dose but you can try the following:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"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).*"

*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of the article by emailing ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Or you could try using the dose by weight guidance from NICE if your current dose is inappropriate to how much you weigh:

cks.nice.org.uk/topics/hypo...

The NICE clinical guideline recommends:

Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.

For a dose of 100mcg that would mean your weigh would be no more than 63kg or 9st 13lbs.

Fluffyone profile image
Fluffyone in reply toSeasideSusie

Thanks, will use the weight thing definitely. I’m 74kg so…

Would love to be 63kg!

SeasideSusie profile image
SeasideSusieRemembering in reply toFluffyone

So 118.4mcg Levo would be nearer the mark, but it's not set in stone, it's a case of it's guidance and dose adjusted to suit the individual. I'd push for 125mcg daily and if the endo is reluctant try and compromise on alternating 100/125.

Fluffyone profile image
Fluffyone in reply toSeasideSusie

will do thank you

Fluffyone profile image
Fluffyone in reply toSeasideSusie

Hi,

Listened to Toft Talk and he seems to be saying that suppressed TSH on Levothyroxine therapy only is ok but if on T3 and T4 then risk of atrial fibrillation and osteoporosis.

He says suppressed is less than TSH 0.3, mine is already 0.03. Was the studies done in hypothyroid patients or are they extrapolating from other cohorts?

Is that correct as I’m on combination? Should I stick or go back to just Levothyroxine and up dosage?

SeasideSusie profile image
SeasideSusieRemembering in reply toFluffyone

Fluffyone

Nowhere in your posts here have you said that you were on Levo/T3 combination. If you had I wouldn't have mentioned Dr Toft's article nor the NICE guidance of dose by weight because both of these clearly state that they apply when on Levo only. So you can't use either of them in your discussion.

Listened to Toft Talk and he seems to be saying that suppressed TSH on Levothyroxine therapy only is ok but if on T3 and T4 then risk of atrial fibrillation and osteoporosis.

I think there may be other evidence that says this is only a problem if FT3 goes over range. I am on combination Levo/T3 and my TSH is suppressed, depending on which lab does the test it's <0.01, <0.02, 0.005 or <0.005 and it's been like that for over 20 years. I don't have AF nor do I have osteoporosis.

He says suppressed is less than TSH 0.3, mine is already 0.03. Was the studies done in hypothyroid patients or are they extrapolating from other cohorts?

As I wasn't involved in the studies I can't answer that question.

Fluffyone profile image
Fluffyone in reply toSeasideSusie

sorry thought I’d posted that, thank you

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