Update on results and which step next?

[Saggyuk]

Hey guys, I asked for your advice recently as was having some horrible new symptoms - full story if you want a reminder here:

healthunlocked.com/thyroidu...

Briefly, I was showing signs of hyper (hyper reflexes, nausia) and i'm still having massive memory problems. I have been on t3 only treatment for over ten years and had been on 60mcg for most of that with my tsh under 1. Since quitting gluten three years ago and fully GF since gluten trials finished over a year ago (for which I now have a diagnosis), i dropped my dose quite quickly to 40 mcg. I tried dropping dose to 30mcg a year ago and my tsh climbed to 16.85.

My labs in october were tsh 3.8, t4 <0.1 and t3 6.9 (my T3 had always needed to be over range to stop hypo symptoms and bring tsh down historcally). I dropped my t3 dose to 30 which does seem to have stopped some of the new symptoms I was having (not so thirsty, not so shakey, nausia gone, and reflexes normal). I got new set of labs yesterday and they were tsh 4.56, T4 <3.2 and T3 6.

The tsh has gone up and I feel a little hypo but there's no point increasing t3 anymore. He discussed maybe switching a little of t3 for t4 but we didn't have the labs yets and I think looking at the tsh, it's prob best to add a little t4 rather than switch. I am not seeing him again until march though so quite a while to wait for some t4. What do you guys think - switch or add?

However, the tsh has not climbed as high as it normally does since october and still kind of within range surprisingly. My results historically normally show t4 <0.1 even when my tsh hits the 30s but the last one came back as <3.2 - does this show an increase in T4 production or is this just different bottom ranges of differents labs maybe - it's always been taken at the same hospital? If it is an increase (even if still not recorded specifically, then this would be the first time I've ever produced more t4 in in over 15 years probably. Might it worth to wait a bit longer until march and see what happens with this considering the way many other problems have dsappeared or healed to some degree. I'm also on treatment for iron, so when I get my ferritin back up, maybe this would help also??

I previously spoke to you guys about my concerns with b12 which keeps dropping and vit D not seemingly optimal but the endo does not want to treat those. was defcient vit d earlier last year and was treated which strangely resolved a life long fast heart rate issue and brought it back to normal and my result in october was 51 but he says treatment will just decrease my calcium and he is happy with this as it is. In regards to B12, he is also happy with this (321) which I am aware that you guys would think is far from optimal and i'm concerned it has something to do with my memory issues so I'm thinking I should just get my own and treat anyway (i've been taking some left over vit d anyway) or do you think i should wait until I get my ferritin back up?

Thanks guys :o)

[Clutter]

Saggyuk,

You are under medicated. You need to increase T3 dose to 40mcg or add in 25mcg Levothyroxine now, not in March.

FT4 will be under range when you are adequately dosed on T3 and when you are taking proportionately more T3 than Levothyroxine.

I thought supplementing vitamin D raised calcium levels. You should supplement vitamin D until it is optimal around 75-100. I would supplement 5,000iu D3 daily and retest in May. Make sure iron and vitamin D are taken 4 hours away from T3 and Levothyroxine.

B12 <500 can be deficient. I would supplement 1,000mcg methylcobalamin with a B Complex vitamin.

There's no need to wait until ferritin is optimal before supplementing D3 and B12.

[Saggyuk in reply to Clutter]

Hello Clutter

Yes, I'm aware I'm under medicated but I'm having problems with T3 and cannot raise my t3 back to 40 as having massive hyper symptoms with it and feeling toxic every time I take it. I never responded to T4 previously as can't convert which is why I've been on T3 only since my twenties but we are discussing as an option now because of my apparent issues with the T3.

My question is even when I've been seriously hypothyroid in the past with hugely high tsh, my t4 has always come back as less than 0.1 - so basically nothing. This time though, it has come back as less than 3.2 which does indicate my thyroid has been doing something for the first tme in years (I think) plus my tsh has not gone seriously over range like it has in the past when undermedicated so am wondering whether I've got some function back especially considering all the other things that have healed since going GF. I'm really not feeling as bad as I should be to be honest and the longer I leave it, the better I seem to feel which is why I am wondering whether to leave it a bit longer as a bit of an experiment I suppose lol! When I first dropped the dose in october, I felt clearly undermedicated, piled on weight, etc etc but then since beginning of december, I'm feeling better and weight has come back off etc. Okay, so I will add rather than switch if no changes but I'm not seeing him again until March and need to get a prescription for t4 unless I phone the secretaries and see if he will call me back?

Yes, I always take the iron in the evening away from everything else as can't during the day anyway because of the split t3 doses etc etc. I hadn't realised Vit D was the same - should I take this with the iron at night?

Okay, I think I will start the b12 etc now then and see if it makes a difference.

[Saggyuk in reply to Saggyuk]

Thank you

[Clutter in reply to Saggyuk]

Saggyuk,

Poor converters usually do well on T4+T3 combination. It's more likely someone allergic to T4 who needs to be on T3 only.

Vitamin D should be taken with the fattiest meal of the day as fat aids absorption.

[Saggyuk in reply to Clutter]

Hi Clutter, okay, when I initially went onto T3, it was because no matter how much t4 they pumped into me, it did not affect my results majorly or symptoms, so the endo started to add t3 and over the first year, kept switching to more t3 and it was only when on t3 only at the end of the year that my bloods tests came back more normal and my tsh finally came down? We do know from gluten trials that it impacts my thyroid results dramatically (or possibly absorbtion) as they did thyroid tests before and after each one, which is why we are thinking it might be worth trying a little t4 again now that this is no longer an issue.

Okay, so i will eat something very fatty with it lol! It's too difficult taking other stuff during the day as my t3 is split into three doses and I cant seem to take it any other way.

THanks again

[Clutter in reply to Saggyuk]

Saggyuk,

It's been acknowledged for a long time that having coeliac disease considerably reduces absorption of thyroid medication and eliminating gluten from diet will usually enable a substantial reduction in dose.

[Saggyuk in reply to Clutter]

Yes, but they were unaware of that at the time as many years ago and my coeliac tests come back negative. For some reason, I could absorb the t3 though. It was only through the gluten trials and measuring all my health issues at the same time that I now have a coeliac(ish) diagnosis through circumstantial evidence and reversal of other autoimmune disease lol!

I will add the T4 rather than switch but just don't know if can do it earlier than march if he wont take a phone call.

THanks for the advice on the supplements :o)

[humanbean]

my result in october was 51 but he says treatment will just decrease my calcium

The person you are talking about (an endo? a GP?) is wrong to suggest that taking vitamin D will reduce your calcium levels. In fact taking vitamin D does exactly the reverse :

endocrinediseases.org/parat...

ods.od.nih.gov/factsheets/V...

[Saggyuk in reply to humanbean]

Maybe I heard wrong, maybe he said mess with or decrease instead but I know he definately mentioned calcium to be the reason lol.

He's an endo and a pretty good one to be fair - he's a proffessor in the field so it was prob me that misheard - wasn't paying attention as was just being insteantly annoyed he disregarded it lol!

[Saggyuk in reply to Saggyuk]

Plus my memory is like a seive at the mo!

[Saggyuk in reply to humanbean]

Bearing in mind now that it can increase calcium levels. Calcium is the one thing I know near nothing about btw. My last tests in october were as follows:

serum calcium levels: 2.40mmol/L (2.2-2.6)

Serum inorganic phosphate level: 1.11 (0.8-1.5)

Serum adjusted calcium concentration: 2.30 (2.2-2.6)

I'm assuming these are all okay especially where it seems to be doing a good job with healing my bones as my last dexa scan came back completely normal which is great as they weren't in a good way beforehand But the above means nothing to me so some pointers would be useful

[Clutter in reply to Saggyuk]

Saggyuk,

Your calcium and phosphate levels are fine. Good news about the DEXA scan.

[SlowDragon Administrator]

It's common with gluten issues to be low in magnesium. You need good levels of magnesium for absorption of vitamin D (your own or supplements) too

Lots of us on here find magnesium supplements beneficial

glutenfreesociety.org/glute...

[Saggyuk in reply to SlowDragon]

Thank you, will read up on it - so much to learn about all these blinking nutrients lol!

[Spareribs in reply to SlowDragon]

I love Dr Osbourne, he always explains thigs well

[marsaday]

It sounds like things have improved in the metabolism as a whole and this is now having a knock on effect with the thyroid. Your body is saying it needs less thyroid meds overall.

I would certainly try the 25 T4 and hold the 30 T3 dose.

I myself about 5 yrs ago decided to do an experiment using mostly T3 and a little T4. T4 with T3 just wasn't working out, so i thought i would see if T3 would do it.

I didn't do well on T3 only and anything above 55T3 made me ill (hypo).

So i used 25 T4 and 55 T3 and was very happy on this for a year. However, i didn't like the multiple dosing of the T3 and wanted to see if i could get by on more T4 and less T3 (cost was an issue longer term as i saw it (T3 prices today prove i was on the ball there). So i upped the T4 and lowered the T3 over the next year and settled on 125 T4 and 25 T3.

Then i ran into some problems and this confused me. more T3 made things worse. One morning i missed my morning T3 and felt much better by noon. I left out the T3 and the next day dropped it down a lot. I think i used about 10mcg. In the next week or so i realised my body didn't want T3 anymore and i settled on 125 T4.

3 yrs on i still use a little T3, but it might be every few days and i only use a tiny amount = 3mcg. I use 150 T4 only pretty much now.

I think want happened here was the receptor cells had a chance to reeducate and learn how to use T3 better than before (when i was on 150 T4 and 50 T3) or i was on too much overall thyroid meds and to much RT3 was being created and so the T3 i was taking was still getting blocked out.

[Saggyuk]

Hello marsaday, thank you for the info. yes, my body is definately saying no to more t3 as you say. I can tell as soon as take it. Well, I don't think can get t4 prescription until march anyway so I might just leave for a bit longer and see what happens.I can always change my mind if I start feeling worse and it would be good to know for sure. If my tsh stays as it is or increases, I will add 25 t4. Def don't want more t3. In the mean time, I will get my iron and other levels higher and see if makes a difference too. I will also ask for antibody check in march and see whats happening there. If neither works, I will maybe keep trying different amounts like you :o)

[mrsm49 in reply to Saggyuk]

Try yr gp, levo is a cheap drug to prescribe and they will probably be v happy that you are trying to reduce yr expensive t3 😉

Its worth seeing if you can get gp prescription as march is long time to wait for yr endo.

[Saggyuk]

THanks, it's a possibility but I don't think the gp would get involved at the moment as he knows the endo is seeing me and working on it. He also admits that he knows very little about t3 and my results because of it so always leaves it to me to make a decision about changes in dose if I'm not currently seeing the endo but I imagine that wouldn't be the case at the mo as endo has been writing to him.

I've heard a lot of people having problems with their gps prescribing t3 but mine have never questioned the endo or made it it an issue. I know quite a few other people on t3 in this area also and other gp practices don't seem to go against this endo either funnily enough lol!

I'm not feeling so bad at the mo but if I start to feel worse, I will contact both if necessary. I always get a headache when more hypo than I can cope with and so far have not experienced this and i'm still not feeling the cold but yes, I suppose march is a long time to wait if I continue to go down