Any ideas on why results not Improving ?

[cazza1001]

Hi - Been seeing an endo ( a very good one ) and even he's a little baffled by my recent results. A year ago I was only on 50mg levo but had felt terrible for years - I finally saw an endo last October :

results end of sept 0n 100 levo - No TSH as secondary Hypo :

T4 13.0 ( 12.0 - 22)

T3 3.4 ( 3.1 - 6.8 )

results end of dec on 150 levo -

T4 18.7 ( 12.0 - 22 )

T3 5 ( 3.1 - 6.8)

Results end of march on 150 levo and 25mg T3

T4 17.6 ( 12.0 - 22 )

T3 4.7 ( 3.1- 6.8)

So - why would my results keep falling back after medication increase - I seem to get a burst for about a month after each med increase and then just feel rubbish again !

He has now perscribed cyproheptadine to try and crack the insomnia - in the belief that I will never feel well or be able to loose weight unless I sleep !! I agree but doesn't explain the declining results on higher meds ?

I am also 15 months into the menopause - compounding insomnia and I believe has caused restless leg syndrome and week legs .

Any help or ideas ? thanks

[greygoose]

Are your tests always done at the same time of day? If not, you can't compare them.

The difference between the December and March FT4 is because you started taking T3. The FT4 goes down when you start T3 because the body doesn't need as much, and only hangs on to what it wants.

However, the FT3 should have gone up considerably with the addition of 25 mcg T3 - did you add that all at once, or build up gradually? So, how do you take your T3? Do you take it on an empty stomach and leave an hour before eating or drinking, just like levo?

[cazza1001 in reply to greygoose]

hi - that's the result I was surprised at too ( and him ) . I split the 25mg at first thing and then take the other 12.5 mg at lunch ( the second dose is often not on an empty stomach ) - I just cant seem to get the logistics of that quite right . But the morning dose of levo and T3 all on an empty stomach for at least 3 hours ... all tests were at 9am on empty stomach and no meds for 24 hours. thank you GG.

[shaws Administrator]

As greygoose suggests, do you always have your blood tests at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and blood test and take it afterwards.

[greygoose in reply to shaws]

Fasting doesn't apply, as they don't test her TSH. And, with T3, you should only leave 12 hours. But, I don't think either apply, as her results are low, not high.

[shaws Administrator in reply to greygoose]

Thanks I leave 24 hours as I only take one daily dose.

[greygoose in reply to shaws]

That doesn't make any difference. I only take one daily dose. You are probably grossly over-medicated, then! lol

[shaws Administrator in reply to greygoose]

I feel fine and symptom-free and no palpitations.

[Angel_of_the_North in reply to shaws]

Try splitting your T3, works better for me. Very early am 12.5 mcg (easy of you don't sleep). Lunchtime-ish 12.5mcg.

[shaws Administrator in reply to Angel_of_the_North]

Is your stomach empty when you take lunchtime dose? Food interferes with the uptake of hormones.

[Angel_of_the_North in reply to shaws]

That's why I said "lunchtime-ish". I rarely eat lunch.

[shaws Administrator in reply to Angel_of_the_North]

Apologies as I was thinking mainly of TSH as it drops throughout the day but realise you don't need a TSH as you have secondary hypo.

[cazza1001 in reply to Angel_of_the_North]

Hi all - thanks - I do split the dose - the lunch one is prob not always on empty stomach - but all tests run first thing with a day off the meds ... so should be good comparison ... just do not get why T3 lower !!

[Angel_of_the_North]

Have you tried dropping the levo slightly and keeping the T3? Also how are your B12, folate, ferritin and D3? You also need to get cortisol/adrenals under control - meditation is very helpful. If you are in menopause, worth a look at bioidentical HRT - one set of low hormones could easily mean another. I couldn't sleep until I got sex hormones balanced. I have the same problem with T3 (and secondary hypo), it varies but not obviously according to meds. I feel better with mid range or lower free T4 and the best free T3 I can get. Magnesium for the legs.

[cazza1001 in reply to Angel_of_the_North]

All vits are near top of range and I take Magnesium 600 mg and potassium and calcium !

Defo need to look at HRT asap - endo has avoided it for now as wanted to deal with thyroid first - I'm convinced the drop in Estrogen is playing havoc with it all --- I've not heard of bioidentical HRT - I was going to ask for continuous combined as I'm neary 54 and 18 months clear of menses .. any advice welcome ! thank you

[Angel_of_the_North in reply to cazza1001]

I needed very little oestrogen, but tons of real progesterone and some DHEA. I think most conventional horse pee and progestin gives too much oestrogen. Mine is made up specially for me not a once size fits all.

[cazza1001 in reply to Angel_of_the_North]

do you mind telling me what brand of HRT you are on ? and is that available via GP ? thanks

[Angel_of_the_North in reply to cazza1001]

Not a brand, compounded for me, and only available private as far as I know.

[SilverAvocado]

Let's see. You've got 3 sets of results here. The second result clearly does raise with your dose increase. It's only the third result that has dropped a bit, but it's still higher than the first result.

So by my reckoning you've only got a single anomalous looking set of results. In the text you make it sound like this has happened more than once? Are there more examples you haven't shown us?

In my experience not every single raise in dose results in an increase in test result numbers. I've had as many as 3 raises in a row without my freeT3 raising (I take NDT, so my increases include T3). My symptoms do improve each time, though.

I suspect I have thyroid hormone resistance, and have wondered whether these non-changing blood tests are an effect of that. Or it may just be completely normal.

If I were you, I'd go on and have another increase as normal (assuming that's what you want to do), and it's likely you'll see an increase in the blood test next time.

Although do check some of the things others have mentioned with accuracy of the blood tests.

[cazza1001 in reply to SilverAvocado]

thanks - all bloods done at the same time and on empty and no meds the day before ..

I guess the frustration is that I upped meds by 25mg T3 ( 75 mg equiv levo ) and the T3 is down ... yes this happened last year when I went from 50 to 125 ( slowly ) the results were ok for 3 months then dipped back again ... feel like death still and loosing faith !

[SilverAvocado in reply to cazza1001]

Have you had improvement in symptoms at the same time the blood results didn't change? Or do you feel like the hormone isn't doing anything?

When I was on synthetics I felt like the dose increases weren't really changing anything. But now I'm on NDT I do feel symptom improvements each time, even when it doesn't show up in my blood tests.

[SilverAvocado in reply to SilverAvocado]

Generally I find it to be good news when my blood results don't change. Forgot to say that! If your blood tests are worse than they were last time AND you still have symptoms, then you've got just as strong an argument for a raise in dose as you did last time.

[cazza1001 in reply to SilverAvocado]

I don't feel any better - completely washed out - I wonder if NDT is the answer !

is it very expensive - guessing that isn't available on NHS ?

[SilverAvocado in reply to cazza1001]

The main question is whether you feel any different between doses, not whether you actually feel completely better. I find it extremely difficult to tell, and if I don't write everything down while its happening I will have forgotten in a few weeks.

At the moment your dose is still very low, so ideally you need to get to the point where your tests look optimal. Once mine were optimal, I was still bed based and could hardly walk.

Ideally you want your freeT3 to be in the top third of the range, or even right at the top. Yours is currently around the middle of the range. So at this point I don't think you can predict how you might feel once you get it all the way up.

It took me something like 6 increases to get from the bottom of the range to the top of the range. So you may have to increase several more times to get to the top.

I think it's only once you've been optimally dosed on T4 + T3 that you need to think about NDT. In fact I'd say that trying T4 + T3 (as opposed to T4 monotherapy) is a first step, and is a completely different treatment to mono therapy. But you really need to give T4 + T3 a chance. At this moment you haven't even had one dose adjustment with it.

My view is that you should try each hormone format for several months, ideally about 6 months, and get optimal blood tests, before you give up on it.

This means you've got a clear tick in that box for having tried it out, and you know exactly how you feel on that treatment. Then and can move onto the next one, knowing you won't ever need to return to the one you've tried before. The impulse always is to go quickly and try the next thing! But then a year down the road you could have tried loads of things, but not actually know which of them you felt the most well on.

Also, I think dose tuning is very important. It matters a lot more that you're on the right dose than really what form of treatment you're taking.

[cazza1001 in reply to SilverAvocado]

thank you so much - that makes a lot of sense - I am rushing as was hoping for the silver bullet !!

[SilverAvocado in reply to cazza1001]

I hope it's useful! It's definitely a slow and laborious process

[Angel_of_the_North in reply to cazza1001]

Or T3 only. Thai NDT is cheap as chips.