Have just had bloods back and UGGGGHHHHH. My T3 is the lowest it's ever been; which makes sense because I've been feeling *really* sluggish and heavy and lethargic.
My TSH is low though so I will get nowhere with the GP. What do I do now?
DateTestRangeResult% thru range
25/5/21
TSH (0.27 - 4.2) 2.81
FT4 (12 - 22) 19.3 - 73%
FT3 (3.1 - 6.8) 4.2 - 29%
14/6/21
TSH (0.27 - 4.2) 1.52
FT4 (12 - 22) 17.6 - 56%
FT3 (3.1 - 6.8) 3.6 - 13.51%
Its just SO frustrating!
My vitamins are optimal, I've just had an iron transfusion so ferritin will be good now. I'm just so frustrated that I feel like I can't find my level.
When you are having blood tested for thyroid hormones, do you follow this method?
1. Don't take thyroid hormones before blood draw.
2. It is a fasting test and it should be at the very earliest time possible. You may have to make appointment weeks ahead.
Your FT3 is too low so I would assume (and am not medically qualified) that you are not converting T4 well enough into T3 (that's what it is supposed to do). I would aks your GP to prescribe a combination of T4/T3. (most probably wont as they've been instructed not to prescribe T3 as it is 'too costly'.
T4 is an inactive hormone, supposed to convert to T3.
T3 is the active hormone and brain and heart have the most T3 receptor cells and we have T3 receptor cells all over our body.
Am I right in saying you have less 'free' on more meds!?
On these results you would benefit from a bit of extra T3 but I think you are right to wait longer. It may be once your extra iron has reached its benefit potential, your 'frees' will improve & conversion rate increased enough that you start feeling better. Also remember symptoms often lag behind good biochemistry if & when you get it.
Many on the forum function better with higher in range FT3 but there are a few of us very sensitive to meds whose sweet spot on a lot lower. Have you tried supplementing zinc, selenium, vitamin C? Also some of the adaptogens are known to improve conversion rates for some.
Almost; my frees are dropping the longer I stay on a stable dose and it looks like my conversion was best on 75mcg. Any increases after that didn't improve conversion or T3 in any significant way. 🤔
In fact my conversion was best before I was put on levo!
Consultant said it can take up to 6 weeks for the iron to get where it needs to be; especially if you've been depleted for a sustained length of time as I have so no sudden moves but I'll start putting feelers out about a private consultant.
I can't quite make head nor tail of it. My T3 is the lowest it's ever been, even before diagnosis, and yet my TSH is ''euthyroid'' so my GP won't increase my dose.
Yes, for many of us our ‘correct' dose has little margin. Too little is inadequate but too much can prove prohibitive in progression. Individualised ratios of T4:T3 as well, and it may be a reduction to 75mcg T4 is where you are best.
Your endo doesn’t want to lower TSH further because it helps with conversion. If meds aren’t working well taking TSH lower will just be another inhibitory factor to conversion as well as the previous negative effects of inadequate iron that you are still recovering from.
You might find the link below helpful in understanding why missing our sweet spot isn’t a case of ‘a little bit more won’t matter’ but can instigate a whole ball of negative effects rolling.
Aww, sorry to horrify you. It's just you said this was where best conversion took place and it is the T3 that brings us well being. Bear in mind symptoms often lag behind good biochemistry by months confusing the issues further. Hence the waiting.
It does look like that's where my conversion was best but I felt best mid April.
You didn't scare me, it's ok. I am wondering if perhaps I overshot the mark that maybe something around 90mcg may have been enough but it feels quite risky to work back down to find out.
On 75mcg my T4/T3 was 51%/38%
On 125mcg it was 96%/45% so actually there's not been much improvement in my T3... 🤔
I agree with you to wait. My reason is this person has been converting t4 to t3 previously so in my opinion no problem converting just something has gone slightly wrong in the mean time.
I can recognize your pattern here as it's the same as mine. TSH still remaining over 1 despite being top of range T4 levels. My TSH was 1.3 when my FT4 was 113% in range and my FT3 was 70%. You see, I still had symptoms even though I was functioning and sleeping okay but the only way I can function on Levo alone is to have over range FT4 levels. There's nothing wrong with that if you feel fine. I got to the point where I couldn't add anymore Levo because it made me feel worse. You could increase on 1 to 3 days out of the week with a small amount like 12.5 mcg or 13 mcg depending on what pills you have to see if you feel better. I finally had to go with a T4/T3 combo.
I agree. I'd like to try an increase perhaps every other day but I will get nowhere with GP with TSH where it is. Part of my disappointment this time was that TSH was so 'low' that I just know my GP won't budge on it. 😔
Just have to sit tight for a few weeks and hope that either the iron does as it should and improves my conversion or my TSH goes back up and I can increase in dose. 🤞🏼
When my TSH was 4 I only managed to get an increase by negotiating with the GP to aim to get my TSH to 'around 1'.
I know I need to find the energy somehow but I just cannot face the thought of a fight for a negotiation, and this will be because the GP just won't see a 'clinical need' to increase my dose.
You need to find another doctor. I left my GP because he was keeping me unwell and trying to decrease my Levo. He started to diagnose me with fibromyalgia. I was becoming disabled and unable to work. For your quality of life, you have to try and find another doctor that will do a better job and help you.
I will join your pity party! How frustrating for you. I really do empathise. I’m so sorry especially as you’ve obviously worked hard to get your vitamins optimal etc.
Maybe it is time for you to consider adding a bit of t3? Only you can decide that but if everything else is good it might be worth thinking about.
We are all striving for that ‘optimal’ dose and you just aren’t there yet. But don’t give up now. You’ve been trying so hard.
It's just so frustrating. I felt really well for awhile and it was amazing. Haven't felt that well in years and I'm only 35! 😔
And it all seems to be going in the wrong direction! I was really hopeful that optimising all the vitamins would see my conversation rate increase but it just looks like poor conversion to me now.
Weirdly my conversion was better before I was on T4. 🤔
I am sure there’s a reason for your conversion being worse once in treatment and I’m sure some clever person will be on to tell you why.
Are you hashimotos? I wonder if maybe it’s a flare?
As for t3 I would say don’t be worried about it. In an ideal world we would all have optimum health without taking anything but you’re only 35 and if I had known what I do now (😊) I would of taken it in a flash.
It’s tricky and may take time to get it right but I had pain and symptoms since my first born. He’s 26 now.
My tsh was way way over range before I was treated and I’m only just starting my t3 journey but I don’t do regret. Everything for a reason! So read, ask and if the doctor won’t help you, take a deep breath, grab your courage and do it for yourself. Don’t be the fool I was and continue to suffer. Don’t waste time. Lots and lots and lots of luck. x
This definitely made me cry. Thank you for your kindness; you're right. There's no time to waste. I'll see how my bloods are in 5 weeks and go from there. 🌱
I'm one of those people that felt better before going on Levothyroxine. I never had any of the aches and pains and my fatigue was so subtle that I lived and enjoyed my life with enough energy. My body did an excellent job. I had half my thyroid removed to an adenoma so I don't know if I had autoimmune, hypo or if the hypo was secondary. I'm stuck on the meds however. Going on the Levo really slowed down my rate of conversion and I developed symptoms I'd never had when I wasn't on it!
I just checked. Have you only been on the raised levo for 4 weeks? If so you should leave it a little longer to stabilise. I know that’s hard when you are desperate to feel better. Have done it myself. But another few weeks may make a difference. I’m not saying you’ll be optimal but it’s probably too soon to know exactly.
Also you mention your iron transfusion… when was that? Was it recently? Again, I know when you feel pants it’s easy to throw your hands up and think nothings worked but as frustrating as it is I’m going to say ‘whoa there’. If you go to quick it’ll take longer because you’ll end up back tracking. I got the t shirt on that one 🤣
Iron transfusion was last week so this set of bloods was meant as a sort of a science experiment! To see what my levels were pre-transfusion and then I'm going to test again 6 weeks after the transfusion so see the difference. ... I just up made a balls-up on the timings so had to do the first test after I had the transfusion. 😂🤦🏻♀️
So in reality I've another 5 weeks or so until I need to test again and then I will know where I go from there. Have spent a long time trying to get levels right so I have a clear picture of where I stand before considering T3 but so far it's not looking promising.
Maybe it’s too soon for the iron infusion to have made a big difference? I’m only speculating—but it can take a little while for drugs to do what they’re supposed to, so why not vits and minerals too? Your body probably needs to relearn how to make optimal use of the iron, and that wouldn’t be instant, I reckon—everything would have down-regulated in the presence of a deficiency and now maybe everything has to slowly ramp back up again?
Don’t be downhearted. I reckon you’re much closer to things improving than you were.
This test wasn't meant to see if the transfusion had made a difference, it was just meant as a 'baseline prior to iron' just for the sake of science and curiosity!
But as my TSH was 2.8 4 weeks ago I was hoping it would be the same again so I could get a dose increase from the GP. As it stands I'm feeling sorry for myself because TSH too low for GP to dose again yet frees too low to feel well.
I remain optimistic that the iron will help conversion eventually it's just facing another 6+ weeks of feeling like this was overwhelming when I saw the results. 😔
Deffo 6 weeks before you see an improvement after iron infusion. Then you'll get an iron rush and feel amazing for a few weeks until it settles to normal. I have them annually. Game changer x
I've been trying to get meds right for three years so I have no pity! Lol. But I do have some advice that my experience was that I needed to keep increasing my meds. Whilst my numbers were practically ok on 75 in the first months, to get to that practically ok point months later I needed to be on 125. I think my thyroid was failing more.
Getting my vitamins up has never noticeably improved my thyroid levels although it has helped in lots of ways. However my iron was never low.
I agree that being just over range on t4 had me feeling best and Endo had no problem with that.
I really really feel for you and had a similar experience myself. Increasing my levo after 125 mcg made me feel worse. I have found this article very interesting and would be grateful for comments from all the clever people on here ( both positive and negative!)
I love a thyroid pity party and we should def do it more often Agree with others that TSH is still high for someone on meds.
Your GP sounds like a hinderance. I wouldn’t add T3 yet - I’d actually be tempted to either drop back or move up. Some people need over range fT4 to convert to sufficient fT3. My medics never tried that before going straight to LT4/LT3 combination therapy and I wish they had. I’ve been on it for 6 months and it’s been quite a ride trying to find the dose. Still not right yet!
The other thing I wish I’d done sooner was read some books about thyroid. There are some cheap ones on kindle if you don’t mind an e-book. Some are rubbish and some are not.
There are a couple of video presentations from endos on the thyroid trust website. The one with Anthony Toft is good and educational and also the one with Paul Jenkins. Quicker and easier than books now I think of it, and I trust their information on thyroid. I actually think that the info I use, trust and apply to myself came more from them, now that I reflect!
My free T3 was in the gutter— literally in the edge of lower limit of the clinical range. The endocrinologist’s solution was simple: split the dose of NDT so I’m taking half in the morning and the remainder at 1:00 pm. The result is FT3 is now respectably in range, though not spectacular. But the long-standing energy problem was various metabolic issues unrelated to thyroid. There’s the injured brain working overtime to compensate for damage in the frontal cortex l. There are genetic conditions only diagnosed with expensive blood tests that examined metabolic indicators, including arcane minerals, amino acids and vitamins that are required in cellular energy production.
It takes a lot more than ferritin, B vitamins and thyroid hormones to properly power the body. Some people are lucky to have most of the system run smoothly. Some aren’t.
Sorry you’ve been having such a difficult time with it.
Is that why your results are bad because your not converting so your tsh can be low improved due to T4 medication. But your ft4 and 3 can be bad or get worse because Ur not converting it?
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I am wondering if perhaps I overshot the mark that maybe something around 90mcg may have been enough but it feels quite risky to work back down to find out. 
Agree with others that TSH is still high for someone on meds. 
Drop in FT4/FT3 and TSH after levo increase
Stopped my thyroxine 4 weeks ago - stupid I know - could I double dose up to get back on track? 
Feel like I’ve lost my way…advice please
Should I increase my T3 or my T4?
A little worried again about my TSH...
