Newbie needing advise on combination therapy

[Di23]

Hi all, after 12 months seeing an endocrinologist, going up to 150mcg of T4 achieving nothing more than palpitations, he recently agreed to try combination. He immediately reduced T4 to 75mcg overnight and added 20mcg T3 (sourced myself from Germany). This was 4 weeks ago now and I have gradually gone backwards, lots of aches, low mood and fatigue. Made me realise the increased T4 prior had benefited me to some degree.

Anyway, good enough, my endo has agreed to see me tomorrow at short notice. I have had rushed bloods done showing: Free T3 6.6, T4 13.7 and TSH .02. In July when at 150mcg T4 my bloods showed Free T3 5.5, T4 22.3 and TSH .01.

I know its a big ask but if anyone can help explain should I be feeling better by tomorrow or what questions to ask, that would be brilliant. I am off travelling in India in just 3 weeks and need to feel better than this :(.

The bit I also don't understand is if T3 is active, why did his team tell me it takes up to 8 weeks? I assume he couldn't have just decreased the T4 so quickly either if that's the case. But the way its left me feeling, perhaps that's the problem - any help from all you knowledgeable people will help, thanks

[greygoose]

The man is an idiot and has absolutely no idea how to treat hypo.

T4 should never be reduced by more than 25 mcg every six weeks.

T3 should be started at 6.25 mcg and increased by 6.25 every two weeks.

So, he should have started by decreasing your levo to 125 mcg, and introducing 6.25 mcg T3. You should have increased your T3 by 6.25 after two weeks, and then waited another four weeks, and got retested.

What he did was either calculated to fail, or the man really should not be treating thyroid patients because one day, he's going to kill someone!

I very much doubt you will be feeling any better tomorrow.

[Clutter]

Di23,

How long did you leave between last T3 dose and blood draw?

[Di23 in reply to Clutter]

Unfortunately as I got a call from the endocrinologists secretary on Monday offering an appointment for Thursday, I had to then rush to GP same day for bloods. So had already taken full dose T3 and T4, which I know from this forum is not ideal?

[Clutter in reply to Di23]

Di23,

So how long was it between last dose and blood draw?

[Di23 in reply to Clutter]

6 to 7 hours?

[Clutter in reply to Di23]

Di23,

Okay, T3 should have stopped peaking within 6 hours so FT3 6.6 indicates you are adequately dosed and not overmedicated (assuming FT3 range is 3.1 - 6.8). It doesn't usually matter that FT4 is lower as long as FT3 is good.

TSH 0.02 is suppressed but less so than when you were taking 150mcg Levothyroxine. Had you tested early in the morning TSH would have been higher. See graph in healthunlocked.com/thyroidu...

I don't agree that your endo dosed badly. 75mcg Levothyroxine was swapped out for 20mcg T3 which is equivalent to 60mcg Levothyroxine, so a very small dose reduction. 6-8 weeks is the recommended time for FT4 and FT3 to respond to dose and medication changes. Your FT3 may still be increasing at 4 weeks.

If you felt unwell as soon as you started taking 20mcg Liothyronine it may be the dose is too high or T3 doesn't suit you. If you felt okay at first it may be that FT3 has built up and FT3 at the top of the range doesn't suit you or perhaps you need higher FT4 and slightly lower FT3 to feel well. May be try 125mcg Levothyroxine + 10mcg T3 or go back to 150mcg Levothyroxine. If you stop taking T3 it should be out of your system in 3-4 days.

[jgelliss]

Di23 Welcome to our great forum . . My sympathy and blessing . Why did your Dr lower your T4 dose all at once so much . And give so much T3 to start off with ? Does he have any grasp of how thyroid doses are raised and lowered ? If the Dr wanted to lower your T4 from 150 he should have lowered it by 25mcg T4 . Hold it for 6 weeks and run labs with the new dose change with FT4 and FT3 . Now in my opinion and I'm not a Dr but my own experiences taught me since I started T3/NDT is to start with low dose T3 like 5mcg split AM and PM added to your dose if your 150mcg T4 was good other then you needed a little tweaking for more benefits . I would hold it for some six weeks to allow your body to acclimate to the new changes . Slow and Low is the way to go . Nutrients are important to help with our thyroid meds . Vitamin "D" , Selenium , B-12/folate , Iron (if low) .

Wishing you success in your next steps .

[diogenes Remembering]

The problem with present-day thinking in thyroid medicine is believing that one can rev up or slow down a response just like driving a car. Put in T3, take it out, add T4 etc etc - instant response expected by pressing the pedal. It just isn't like that! The longer someone has been out-of-control i.e. not properly treated, the harder it is to return to some form of health. The reason is that the body tries continually to make the best of things and settles down into that way of acting. The principal is wellknown - its called epigenetics or the change in how your genes are switched on and off in response to a challenge. Then to try to get back to a better situation, takes time, sometimes regrettably lots of it. Sorry there's no getting round it. It's how it is. The solution is of course early recognition of the problem and timely response to it. Then the body has had no time to settle in to the new reality.

[shaws]

If you didn't have early a.m. blood tests your results could be skewed.

[Di23 in reply to shaws]

It was 3pm after morning meds

[shaws in reply to Di23]

The method to get the best possible results is:-

The blood test has to be at the very earliest possible (even if you have to make the appointment two or three weeks in advance). You fast. (you can drink water). Also allow a gap of approx 24 hours between last dose of levo and test and take it after the test.

[Di23]

Thanks for you such prompt responses. I have no idea why he changed me so swiftly with such a big T3/T4 change. On reflection I realise I was naïve to accept his instruction as the "expert". I have been feeling awful, but from what you all say, having done that now am I best to stick with it and see what next couple of months brings? But its like he plucked the dose for each out of thin air.

I do already take vitamin D3 and know that's ok. My last B12 in July was 385 - does that seem ok?

I have been taking the 20mcg T3 in the morning with my T4, simply because there was so much conflicting advise about best time to take it, before food, after food etc - am I being naïve again?

Finally if you guys where me, what would you be asking of my endocrinologist tomorrow?

much thanks guys, really appreciated

[SlowDragon Administrator]

B12 sounds too low at 385 - what is the range?

Folate result ?

Vitamin D - what is actual result? Is it up to 100nmol?

Ferritin needs testing too

Do you have Hashimoto's? High antibodies if so then strictly gluten free diet may help or be essential

Dose was changed far to fast.

Plus your July test results showed very good FT3, so unlikely you had poor conversion.

More likely low vitamin levels

[Di23 in reply to SlowDragon]

Don't know if its Hashimoto's - how do I know?

Range for the B12 is 160 to 1000ngl

Ferritin was 63 with range of 10 to 291 ugl

What do you think?

[SlowDragon Administrator in reply to Di23]

B12 is too low, it needs to be at least above 500, but nearer top if range may be better

try taking good vitamin B complex eg Igennus Super B complex, plus you may also need some sublingual b12 lozenges (Jarrow) if you get pins & needles

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin is borderline. Try eating liver once a week to boost

Vitamin D, essential to know level

Vitamindtest.org.uk £28 postal kit

Hashimoto's is diagnosed by high TPO antibodies

Check all old results if ever tested and high then it's Hashimoto's

Or get private tests

thyroiduk.org.uk/tuk/testin...

[LindaC]

SMH - how come it just gets more and more scary!? Best wishes to you Di23 xx

[Di23]

thanks everyone for valuable feedback. Seen my endo today, he stood by his decision and gave rationale as described by administer on here yesterday. However, he has never mentioned vitamins, never confirmed if its Hashimoto's or not (how do I find that out?).

Outcome today is he has increased T4 to 100mcg and left T3 at 20mcg. I don't see him now until January. However following your advise I am going to meanwhile study vitamin levels more closely.