Hashimotos flare up advice

[Runner25]

After years on only Levo I went to a second specialist recommended here and he put me on T3. 5mcg three times a day. He reduced my Levo from 88mcg to 75. For the first 6 weeks I felt great better than in the last 2 years. But out of the blue 2 weeks ago I went into flare up. Headache, constipation, cold, feeling low, no energy, apathy. I’m so disappointed and feel so depressed that despite T3 I’ve had this flare up that I’m still in. I don’t eat gluten and all my guts and kind like folate, ferritin b and d are all ok. My latest blood test which I did 12 hours after any meds is T4 15.2 T3 5.5 and tsh is less than 0.1. Is this flare up due to decreasing the T4? Any ideas would be so good x

[greygoose]

What you're experiencing might be due to reducing the levo, but it isn't a Hashi's flare (not flare up). A Hashi's flare - or Hashi's 'hyper' swing, as I prefer to call it - is when, during an immune system attack on the gland, the dying cells dump their stock of thyroid hormone into the blood, so that you become temporarily 'hyper' - FT4/3 well above range, and TSH suppressed.

You haven't given ranges for your FT4/3 - please, always give ranges, because they vary from lab to lab - but they don't look over-range. And, your TSH is suppressed because you are taking T3. And you don't sound hyper, you sound hypo.

If you only left 12 hours between your last dose of levo and the blood draw, you probably have a false 'high' FT4, there. It should be 24 hours for levo and 8 to 12 hours for T3. So, it is possible that you do need your FT4 higher to feel well. It might also be that you need an increase in T3. Or, even that you started your T3 at too high a dose and it's just catching up with you.

As for nutrients - ferritin, B12, etc. - they need to be optimal, not just 'OK'. Do you have the actual numbers: results and ranges?

Or it could just be that you've caught some sort of bug, there's so much nasty stuff going round at this time of year.

[Runner25 in reply to greygoose]

The ranges were the same as my last blood test which is on here somewhere but I can’t work out how to see my last posts! I have posted my vits before too and the opinion on here was that they were good. I started slowly on the T3 following the advice on here. Should I realistically expect to return to a pretty much normal life when my medication is right? Am I expecting too much. Are a few short runs (3 miles, I used to run marathons!) a busy day at work, day working in the garden and then out to see friends, are these things never going to happen now without causing me to go into a hypo couple of weeks? When I go into hypo symptoms I have to stop pretty much everything apart the basics ie work 3 days a week and the bare essentials in the way of housework. Just have to rest a lot to the point of being bored and despondent. It’s definitely not a virus, the symptoms and their onset are typical for me unfortunately.

I had such high hopes for T3, but Professor won’t put my dose up because of my TSH?! And to be honest I felt the dose was right ish until this happened again.

[greygoose in reply to Runner25]

I'm afraid I can't answer all those questions, because it's different for everyone, and depends on so many things. But, plenty of people do manage to get back to their busy lives and live well.

Professor won’t put my dose up because of my TSH?! And to be honest I felt the dose was right ish until this happened again.

I expect you were on the 'rightish' dose to begin with. But, it's not logical to expect to be able to stay on the same dose forever. Our needs change. And your 'professor' is being a muppet dosing you by the TSH. Just goes to show he doesn't really know what he's doing. And, when it comes to that sort of crunch, that's when so many of us say 'bye bye' and go out and buy our own T3 and self-treat. We cannot allow them to dose us to suit their own ends when they have no idea how it works. We have to forget their egos and think about out lives.

You have plenty of room for an increase in T3, but you might like to try increasing your levo first.

[tattybogle]

Previous results from 6mths ago on 75mcg levo (24hrs after Levo )

T4 17 (10 - 22) T3 3.8 ( 3.1 - 6.8) TSH 0.81 (0.3 - 5.5)

Then increased to 87.5mcg but I don't think you had any bloods while taking 87.5mcg did you ? and not sure how long you were taking 87.5mcg for ?

then reduced levo back to 75mcg when 15mcg T3 was added .

Latest blood test 12 hours after any meds :

T4 15.2 [same range ?] T3 5.5 [same range ? ] tsh less than 0.1

Can you confirm ranges are the same as for previous test ?

Can you confirm last dose Levo was still 24hrs before latest test ?

Looking at your previous posts i suspect there was no need to reduce levo when T3 was added .

( and i still wonder why they didn't suggest you try 100mcg levo dose before trying T3 to see how you felt with fT4 higher in range .....as your fT4 result on 75mcg was only 58% through range .

The "because your TSH will go too low" excuse they gave you , doesn't hold water .... they don't know how much lower it would go on a levo increase until they try it.. the "risk to heart and bones" is largely bunkum ( there is evidence that TSH of 0.04 - 0.4 has no greater risks than TSH [0.4 -4 ]

They also know that adding T3 in any amount will usually lower TSH significantly more than Levo would )

[Runner25 in reply to tattybogle]

Thanks for your reply. Yes the same ranges and no I didn’t have bloods after the increase to 88mcg which I did myself as my previous endo and GP would not. I was on that dose for about 8 weeks from memory and did feel a slight difference.

[tattybogle in reply to Runner25]

i'm hoping someone with experience of adding T3 will come along to advise . i've never taken it .

was this test 24hrs since last dose Levo ?

and..... if you have the actual results from ferritin / folate / B12 / Vit D , as they might show something that could be improved before trying any Levo /T3 adjustments.

It does seem likely that a bit more Levo might be a good idea , but i'm not sure if it's best to do that now or wait a bit longer to see if you improve .

So see what others who know about using T3 suggest .

Edited to add

is TSH < 0.1 or <0.01 ? (just checking because most modern TSH test's can measure as low as 0.001)

[Runner25 in reply to tattybogle]

I’m having problems seeing my previous posts which did have all the vits on there. Everything was good, so I don’t think it’s that. From memory my iron could be slightly better but nothing terrible.

[tattybogle in reply to Runner25]

this one healthunlocked.com/thyroidu...

to see all your old posts click on your name or little round picture.

[Runner25 in reply to tattybogle]

Ah ok thanks x