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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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.
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?
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.
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)
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
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).
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
>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
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
I weigh a little less than you (64kg) and alternate days of 50mcg & 75mcg, this seems to work well for me, my TSH was 0.9 last test. I think minimum you'll need 75mcg to 100mcg. I also suffered with swelling of my ankles feet & face when only on 50mcg daily. Give it at least 2 months on the 75mcg & see.
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.
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.
>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.
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.
I would not worry over 1 kg of weight at this stage.
My TSH was 78 or so(very hypo, no T4). When starting on 50 mcg of levo I dropped I think 4 kg of water in a few weeks. I am now say a steady 13 kg lower than my peak hypo weight. Face puffiness is classic under active symptom.
The wise ones on here will say do not train as hard as you need to give yourself time and energy to convalesce and for your body to repair once it get correct thyroid levels to power it. It is painfully slow to get sorted, there is no way of dressing it up ! NHS is poor in readying you for all this, "it is simple - just take tablets once per day for rest of your life " is typical and what I got over the phone.
Waking temperature is a good one to track as well. I was below 36C and now under tongue I am about >36.6 C
You sound like your taking the levo well and not having anything too bad reaction wise. This is positive - some are not so lucky.
I wrote down my symptoms every few days with then as things got better weekly then longer.
As wise ones above advised it is a while before you will be steady enough to know if you have complication of poor T3 conversion issues that many on here have. I think we are to 10 to 15% who do not flourish on simple treatment - so you are reading a "skewed" view.(I found it scary)
Mantra/learning on here is get B12 D ferritin and folate at good levels to help your condition. These take organising. Supplement based on results.
Note that forum advises bloods 9AM fasting and no levo for 24 hours. If you end up on T3 then other conditions apply. Also do not take B7/biotin at high doses for 2 to 7 days before testing. This gives consistent results, levels change about a bit during the day etc.
>The wise ones on here will say do not train as hard as you need to give yourself time and energy to convalesce and for your body to repair once it get correct thyroid levels to power it.
What do you mean by that? Training as in exercise?
Yes. You are unwell, even if you don't think hypothyroidism is an illness, it is. And you are not adequately medicated yet and your body hasn't had time to recover. So stick to gentle exercise, walking, a little swimming, some dancing to favourite songs that sort of thing. That is all your body has capacity for now. If you use up all the hormone you take for exercise your body can't recover.
i do weight training (deadlifts, pullups, incline presses, rows etc.) 2-3x/week
should i cut down the number of sessions or use lighter weights? i thought muscle mass is good for insulin resistance. it's kept me lean so far until levo
That's quite serious levels of hard exercise for a sick body. You need to do less and probably change what type of exercise you do. For us sick hypos, walking is good. Anything else knackers us.
You are not on a high enough dose of thyroid meds to cope with this exercise and it may be adding to the fluid retention/bloating you are having. As someone said up the thread, the meds don't top you up. They take over and on the way up to finding your ideal dosage, you will be more tired, sick and liable to injury. Back off the exercise and don't worry about the weight. One thing at a time.
Don't cut carbs either. We need those to help us convert T4 to T3 for energy. And don't restrict diet harshly. Eat well, a balanced diet with lots of veg and some fruit with protein. You will get back to what you were doing. But for the next 6 months or so you need to prioritise health.
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far." healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-
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Dip in symptoms on 50mcg Levo? Confused
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GP confusing me again by changing my Levo dose to match TSH guidelines
