water retention caused by levo 50mcg? (young male) - Thyroid UK

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water retention caused by levo 50mcg? (young male)

hashimomos profile image
15 Replies

Hi,

I am experiencing weight gain (1kg or more) on levothyroxine 50mcg to treat 7.7tsh (increased form 6.45 a year ago, tpo antibodies positive).

The puffy appearance of cheeks and lower abdomen started from week 5 of treatment. In week 7, i gained another 0.5kg and my upper body, legs look softer.

Note that this happened AFTER treating with levothyroxine.

My blood test in week 6 showed:

- tsh decrease from 7.7 to 4 (range: 0.27 - 4.2)

- ft4 from 16.9 to 17.7 pmol/l (range: 12 - 22)

- ft3 at 5 pmol/l (range: 3.1 - 6.8)

I also tested prolactin (decreased), testosterone (slight decrease), fasting insulin (increased from 6.1 to 8.5 miu/l), fasting cholestrol (elevated) and reverse t3 (pending).

My apple watch showed increase in resting heart rate (low 50s to low 60s) and small temp increase (36 to 36.2c)

Any idea why the water retention could have happened? Am i under-treated/over-treated/compensating/adjusting?

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hashimomos
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15 Replies
jimh111 profile image
jimh111

You are probably a bit undertreated. Would expect TSH to fall below 2.0 on levothyroxine. This is more than it seems because TSH increases exponentially as thyroid hormone levels fall. e.g. A reduction in TSH from 4 to 2 would take the same amount of hormone as a reduction from 8 to 4. Put another way ln(TSH) has an inverse relationship with fT3 + fT4.

In most people TSH is the best measure of overall thyroid hormone activity, this does not apply to everyone. I would ask for another 25 mcg levothyroxine and see how you go. Even though your fT3, fT4 are reasonable it may be that you need slightly higher levels, you may be a little less sensitive to thyroid hormone. This is why TSH is a good overall marker in most people, especially healthy people - but not everyone.

hashimomos profile image
hashimomos in reply tojimh111

can undertreatment really cause new symptoms to occur?

I never had this water retention before treatment.

Furthermore, on days on weight training, i have nightime awakenings (after 4 hours of sleep) where im sweating and i need to eat. I read online this is nocturnal hypoglycemia. When i eat a snack before bed, it doesn't happen.

Once again, this is completely new and I never had these concerns before treatment!

>I would ask for another 25 mcg levothyroxine and see how you go. Even though your fT3, fT4 are reasonable it may be that you need slightly higher levels, you may be a little less sensitive to thyroid hormone.

Yes, i was prescribed 75mcg. I will start next week. Is there any way to measure thyroid hormone sensitivity?

jimh111 profile image
jimh111 in reply tohashimomos

When I wrote you may be less sensitive I was referring to minor genetic differences we have in our 'set point' - how much TSH we secrete for given thyroid hormone levels. There's no way to test it other than observe your TSH when fT3 and fT4 are pretty average (and assuming the pituitary doesn't have a problem).

See how you do on 75 mcg and if you still have problems aim to get your TSH below 2.0 which is around the median level for the population.

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum What are

How long have you been on 50mcg

This is only the standard STARTER dose

See GP for next dose increase to 75mcg

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

SlowDragon profile image
SlowDragonAdministrator

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

Levothyroxine doesn’t “top up” failing thyroid, it replaces it so it’s important to get dose slowly increased until at adequate level

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Have you had vitamin levels tested

What vitamin supplements are you taking

And with Hashimoto’s you need coeliac blood test if not been done yet

hashimomos profile image
hashimomos in reply toSlowDragon

>Levothyroxine doesn’t “top up” failing thyroid, it replaces it so it’s important to get dose slowly increased until at adequate level

even in subclinical cases? My initial tsh was 7.7

Why would undertreatment cause new symptoms to manifest which didn't exist before starting levo?

SlowDragon profile image
SlowDragonAdministrator in reply tohashimomos

even in subclinical cases? My initial tsh was 7.7

Yes…..because once you start taking Levo your TSH reduces (message from pituitary asking thyroid to make thyroid hormones) …..so Ft4 and Ft3 output starts to reduce

Why would undertreatment cause new symptoms to manifest which didn't exist before starting levo?

Extremely common to feel worse on starting doses as your own thyroid stops working so hard and you’re not on high enough replacement dose yet

Also with Hashimoto’s over time your thyroid becomes increasingly damaged until eventually it gives up entirely

Approx how much do you weigh in kilo

You will very likely be ready for further increase after next test in 6-8 weeks time

hashimomos profile image
hashimomos in reply toSlowDragon

>Yes…..because once you start taking Levo your TSH reduces (message from pituitary asking thyroid to make thyroid hormones) …..so Ft4 and Ft3 output starts to reduce

>Extremely common to feel worse on starting doses as your own thyroid stops working so hard and you’re not on high enough replacement dose yet

Then why don't doctors start with the full calculated replacement dose? why titrate up slowly?

Also, i weighed 67kg before the water retention. now im 68kg

SlowDragon profile image
SlowDragonAdministrator in reply tohashimomos

So likely to eventually be on approximately 100-110mcg per day

So you might eventually be on for example 100mcg 4 days a week and 112.5mcg 3 days

That = 105mcg per day on average

Essential to test and maintain GOOD vitamin levels too

Test folate, ferritin and B12 at least annually

Test vitamin D twice year when supplementing

Have you had these tested?

Many Hashimoto’s patients find they need to supplement vitamin D, separate magnesium and separate vitamin B complex

Some initially need separate B12 as well

SlowDragon profile image
SlowDragonAdministrator in reply tohashimomos

Then why don't doctors start with the full calculated replacement dose? why titrate up slowly?

Some Dr’s do start patients on full dose and guidelines increasing suggest doing this

BUT on the relatively rare occasion that’s done ….patients often find it too much too soon…..then have to reduce and that can make them feel even worse

So generally it’s better to start on 50mcg

Retest in 6-8 weeks

Then get dose increased ……repeat as necessary

Meanwhile getting vitamin levels tested and improved can help reduce symptoms

And frequently gluten free and/or dairy free diet may help

GP should have done coeliac blood test at diagnosis

Don’t trial gluten free until been tested first

GreenTealSeal_ profile image
GreenTealSeal_

I had awful water retention on all doses of levo sadly. It only got worse the more the dose was increased and only started when I started taking the meds so do keep an eye if it gets worse rather than better on 75mcg.

For me I’m looking into if the excipients are causing me problems as I also get a huge flare of aggressive allergy symptoms on all thyroid meds at the mo.

I followed advice on here and sadly the more I increased the dose the worse the allergy issues became and I just looked so puffy and deathly pale and was unable to function. I initially figured it was really bad hayfever or something but all the problems go away when levo is stopped.

Hope you can work it out and feel better soon!

hashimomos profile image
hashimomos in reply toGreenTealSeal_

I doubt it's the excipients for me as it started in week 5-6 of levo which is when t4 levels reach steady state

greygoose profile image
greygoose in reply tohashimomos

Well, they might have reached stability at 5-6 weeks. And then again, they might not. And with Hashi's, stability is hard to find due to repeated attacks on the thyroid. Nothing is hard and fast with the thyroid. Not only is everyone different, but your body can react differently at different times.

Then why don't doctors start with the full calculated replacement dose? why titrate up slowly?

It's the same with all hormones, you start low and build up slowly to give the body time to adjust. Starting someone on the full calculated dose of any hormone is a terrible shock to the body. And the longer the hormones have been low - and there's no way of telling how long - the longer it takes the body to adjust and feel comfortable with the new, raised levels.

hashimomos profile image
hashimomos in reply togreygoose

>And the longer the hormones have been low - and there's no way of telling how long - the longer it takes the body to adjust and feel comfortable with the new, raised levels.

Yea. I just know that last year I had 6.45 TSH. I was probably hypo before that too as I would get insomnia, hair loss near hairline, UTIs (even though I'm male).

do you think if one can succesfully find a replacment dose then we can keep thyroid hormones level stable? as this should completely remove natural thyroid production affected by hashi's inflammation? of course this also assumes good conversion of inactive t4 to t3.

greygoose profile image
greygoose in reply tohashimomos

You were most definitely hypo before that. It doesn't happen over-night. Thyroid disease is slow and insidious. It creeps up behind you slowly, long before it actually pounces. When the thyroid starts to fail, the adrenals take up the slack, so you don't immediately notice it. By the time the severity of your symptoms drive you to consult a doctor - and taking into account the length of time it takes to get a diagnosis - can be years! - you've been hypo for quite some time.

do you think if one can succesfully find a replacment dose then we can keep thyroid hormones level stable? as this should completely remove natural thyroid production affected by hashi's inflammation?

It's not the inflammation that causes the instability. It's the random attacks on the thyroid and the resulting leaking of thyroid hormone into the blood that cause it. So you levels will be unstable regardless of your dose. However, eventually your thyroid will be completely destroyed and the problem will resolve itself. No way of telling how long that will take, but it will happen eventually. So, levels will become stable and you'll be able to find the right dose to make you well. :)

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