Since my last post in early June, I have continued on 100mcg levo, and have just got new test results with Medichecks.
In June, (also on 100mcg levo), my TSH was 1. 48, T4 21 (12-22) and T3 4.21 (3.1-6.8)
My new results show a TSH of 0.41, T4 24 (12-22), and T3 4.53 (3.1-6.8).
So, T4 has gone from 90% through range to 120% through range, and T3 from 30% to 38.65% through range.
When I was diagnosed with Hashi's this January I had a TSH of 11, and a T3 of about 50% through range. It's perhaps no surprise to say I feel no better at all on Levo - possibly slightly worse!
I have been strictly gluten free for nearly six weeks now, and have added selenium supplements. Neither seems to have helped at all.
I am awaiting results of an iron panel also done through Medichecks, as my ferritin was still somewhat low at my last test. Other than that my key nutrients are all optimal or near-optimal.
I'd really, really appreciate some advice on where to go from here. I have some self-sourced T3 (Tiromel) and am prepared to self-medicate - holding out no hope at all of any help from docs.
Thank you
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Smorzando
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Thank you for replying. Yes, I'd been giving it more time to see if I could improve conversion (going gluten free, taking selenium, optimising ferritin etc) - but it seems to have got worse!
The way I feel now is worse than before I started Levo - just so, so tired, aching all over, sore joints, etc. Wrists are so painful it's making everyday tasks pretty hard.
I got my iron panel results back and ferritin is now at 82.4 (13-150) so that's a big improvement as it was just 9 in January!
If anyone else can "chip in" about how to go about starting T3 I'd be very grateful 🙂
First thing to do is ensure all nutrient levels are optimal.
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Next, because your FT4 is over range, is to reduce your Levo, I would suggest by 25mcg.
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Wait one week then introduce 1/4 of a tablet of T3 (6.25mcg self sourced, 5mcg if pescribed). It can be taken with your Levo in the morning.
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Wait 2 weeks then add a second 1/4 of a tablet of T3 in the afternoon (follow advice on how to take Levo, on an empty stomach, one hour before or two hours after food, with a glass of water and away from other supplements/medication. Some say T3 is not as fussy as Levo, but we don't know that 100% and you want this to work so I'd err on the side of caution). Total 1/2 tablet.
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Wait 2 weeks then add a third 1/4 of a tablet, take 1/2 tablet in the morning, 1/4 tablet in the afternoon. Total 3/4 tablet.
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I would stay on that dose of 6-8 weeks and retest. You may find this is enough T3, your FT3 is not bottom of the range.
Your test should show that your TSH has lowered and might be suppressed (quite normal when taking T3). Your FT4 will have reduced due to taking less Levo plus taking T3 tends to reduce FT4. Your FT3 should have risen.
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You will now have to experiment. Do you feel well on this dose and are your levels looking good? You may want to lower your FT4 even further. Some of us are fine with a low FT4 but some of us need a decent level of FT4. Personally I need both FT4 and FT3 in around 60-70% through their ranges. FT3 should stay in range.
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You may need to spend weeks or months tweaking doses to find your optimal doses where you feel well.
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Only ever change one thing at a time, never change dose of both Levo and T3 at the same time because you wont know which changed has made a difference.
Hi Susie, thank you very much for your detailed and helpful reply.
As I said above, I've just had my iron panel results back and the ferritin is now much improved at 82.4 (13-150) so I would say that all nutrients are now optimal.
When taking the 1/4 lio tablet with Levo in the morning - do you know if it's very important to take it at exactly the same time every day? Currently, I take my levo when I wake up to use the bathroom during the night - this is usually between 1:30 and 4:30am, but the timing varies! 😆
That's a nice ferritin level, I wish mine was that good!
When taking the 1/4 lio tablet with Levo in the morning - do you know if it's very important to take it at exactly the same time every day? Currently, I take my levo when I wake up to use the bathroom during the night - this is usually between 1:30 and 4:30am, but the timing varies!
No, it doesn't have to be at exactly the same time. I'm the same as you, I need the bathroom during the early hours of the morning, but as I need 2 or 3 trips I take mine on one of my later trips so it could be anywhere between 4am and 7am. I wouldn't take mine any earlier as I take magnesium at bedtime and we need 4 hours between magnesium and Levo.
Thank you! Yes very pleased with the ferritin result. Iron is very comfortably within range (I'd been taking ferrous sulphate tabs) so I'm also relieved that serum iron wasn't high: 15 umol/L (5.8-34.5)
Good to know about the timings, thanks. And I'm the same as you taking magnesium at bedtime - but since I go to bed stupidly early (hello exhaustion) even 1:30am is at least four hours post dose!
I've had a lot of stress in my adult life but I would actually say the last year has been a lot more settled, emotionally. I've had one cortisol test, back in January, with my Blue Horizon thyroid test package - it was actually slightly over range, so no indication that low cortisol is an issue for me, although I guess these things can fluctuate!
I agree with Hidden that a bit of lio sounds a good idea
It's possible - but tricky - to get lio prescribed on the NHS. It has to be prescribed by an endo - and not many will, because it's expensive, they don't understand it, and it has a very short half life so is difficult to measure.
I'd suggest (a) emailing Dionne at Thyroid UK - tukadmin@thyroiduk.org - for the list of T3-friendly endos to see who is reasonably close to you. You don't have to see the nearest person but must obv be reasonably convenient.
(b) a separate post asking if anyone can recommend anyone near-ish to you, or if they have any experience of an endo you've looked at
(c) if there's no-one really suitable, googling the hospital thumbnail biographies of the endos who are near-ish to you and seeing if any of them mention thyroid or of they're really all diabetes specialists.
You will need to show that you convert badly and still have hypo symptoms despite high in-range free t4. Worth taking someone with you to emphasise how you're still not properly well.
I've got the list from Thyroid UK, and unfortunately there's no-one on the list near me (I'm in the Glasgow area). There is someone in Edinburgh I could see privately, initially, and I've considered this, but I think for now what I want to do is try adding the T3 to see if I notice improvement on it. Potentially, I could see this Edinburgh endo for future prescriptions, but more importantly, to put it in writing that I need T3, giving me some 'ammunition' in taking my case forward with the NHS.
I've had absolutely terrible experiences with NHS ophthalmologists (if you think endos are bad, you've probably never had dealings with an ophthalmologist 😔) and I am just not well enough at present to put myself through these battles again.
Am going to cross the 'telling the GP I'm self-medicating' bridge if and when I come to it! 😆
Your not converting. Two things play a major role in converting T4 to T3, cortisol and iron. Would be interesting to see what your RT3 numbers are. You'll need to look at all four (4) iron labs and do a 24 hour saliva cortisol test which you can get online.
Well, from what I've read on this forum (and greygoose is good on this subject), Reverse T3 is a bit of a red herring, and not worth testing? With such a high T4, and relatively low T3, I no doubt have high RT3 but I don't see how testing it would help.
As for cortisol, I'm also not really clear on how testing that really helps, unless you have something obvious like Addison's on Cushings going on. But, I'm not so clear on whether it's a good idea to test cortisol, mainly because I'm just not sure what I'd actually 'do' with the results!
My iron panel that I've just had done shows I'm very near optimal - I used this useful link:
It says a Transferrin Saturation of 30% is needed for successful treatment with T3, although a level of 25% is ok for low, starting doses of T3. My result was 28.79%, and I'm still working on increasing iron levels through diet.
Totally agree with you about rT3. It's not worth testing. But, cortisol is.
For a start, if you don't test, how would you know if you have Addison's or Cushing's? You do need to rule that out.
You also need to know when it's high and when it's low. Is the pattern of high/low normal or abnormal? Etc.
If, for example, it was as it should be all day, then suddenly high at night, you could take Holy Basil at night to lower it.
But, if it's extremely low early morning - when it should be high - then gradually picks up through the day until it's high at night, then what is needed is to encourage it to be higher in the morning, so that it's lower at night. Which is the pattern for adrenal fatigue - which doctors deny exists by patients are only too aware of!
And, if it's very, very, very low in the morning, without being Addison's, then a little HydroCortisone might be necessary. But, if you don't test it, you'll never know.
Ah, thanks. I really know almost nothing about cortisol. So, I did have one cortisol test - which was included with my Blue Horizon test I did back in January. Cortisol was 558 nmol/L at around 9am. (range 113-456). So, I assumed I could rule out Addison's/low cortisol? I was fairly stressed just by doing the test so I kind of thought that was why it was a little high 🤷🏻♀️
I've somewhat buried my head in the sand re cortisol testing, it seems like just one more thing to spend money on, and like I said, I just wouldn't know what to do with the results 🤔
Well, cortisol blood tests aren't that reliable. And, it only gives you one snap shot out of a whole day - which is not enough given that cortisol naturally varies throughout the day. It should be highest early morning, to get you out of bed and started on your day, then gradually reduce throughout the day until it's at its lowest at night, so that you can sleep.
So, we know it's high in the morning with your test, but what does it do for the rest of the day? And, also, you need a DHEA test to go with it to give you an idea how the adrenals are doing other than cortisol. So, a 24 hours cortisol and DHEA saliva test is the best one to do.
As to what you do with the results, easy! Post them on here and let others guide you.
"As to what you do with the results, easy! Post them on here and let others guide you."
Thanks, GG, sensible as always 🙂
I'll look into getting one done, when I can. Trying to be relatively methodical, working on one thing at a time - not to mention (since I'm not in employment) that I'm also having to be quite focussed in where I spend my money!
Am I right in thinking that one of the key reasons for looking into cortisol, in this situation, is that if it's a bit 'awry', then T3 meds might not be tolerated well?
That is one of the reasons, yes. But, there are many more. On the other hand, taking T3 could just straighten things out with the adrenals. It depends.
Have you checked symptoms for Cushing's Disease as your morning cortisol is so high? If you have symptoms, then your GP should send you to an endo to be tested for Cushing's.
So, until you can get properly tested for adrenals, make sure you give them lots of love. Plenty of rest, avoid stress as much as possible, lots of B vits and salt and protein - a high protein breakfast as soon as you get up. And, perhaps, they'll sort themselves out.
Testing RT3 would definitely prove that whether or not you are converting. You can "assume" it's high but you don't know until you test.
As far as cortisol testing, I didn't have Addisons or Cushings I had hypoadrenia. With those results I toke ACE (Adrenal Cortex Extract). This product improved my saliva cortisol results and my symptoms.
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