Have finally given up hope of getting helped by professionals. Having spent near £600 over the last 3 months seeing someone from the thyroid UK recommended list + blood tests to avoid the 5 month nhs wait.
Still symptomatic. Feeling slightly worse since latest t4 increase. So I've ordered some t3 but have no idea where to start. I've had 2 lots of bloods done recently. Repeated because I forgot to leave off my Levo but it's the one I showed the endo and I guess what my levels look like daily so I've included it.
Have also had ultrasound which just showed very small thyroid. I am gluten free and tgo antibodies have reduce from 565 to 129 (<115) and tpo from 80.6 now back in normal range.
I take my levo at night so the first test was about 10 hours after Levo and the second about 34 hours after.
My vitamins were all OK apart from folate which I'm prescribed but rubbish at taking. Have had it daily since.
Vit d 112 (50-200)
Folate 8.49 (2.91-50)
B12 295 (25.1-165) on injections
Ferritin 69.6 (13-150) looks quite low but last iron panel ferritin was 74 and iron slightly raised "healthy high"
34 hours after levo:
Tsh 0.251 (0.27-4.2)
T4 19.5 (12-22)
T3 5.37 (3.1-6.8)
10 hours after Levo and what endo saw:
Tsh 0.352 (0.27-4.2)
T4 25.6 (12-22)
T3 5.31 (3.1-6.8)
Both tests I was on 100mcg Levo daily and my endo increased me to 112.5mcg (100/125)
On 88.5mcg (75/100) my results were:
Tsh 2.52 (0.27-4.2)
T4 14.7 (12-22)
T3 3.78 (3.1-6.8)
I was thinking of going back down to 100mcg and adding in 5mcg t3?
Thank you
Written by
Salphy
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Rather than taking folic acid you might be better trying a good quality vitamin B complex. One with folate in. Eg Igennus Super B complex.
We are often low in other B vitamins and a B complex helps keep them all in balance, especially as you already have B12 injections
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
I just don't know what else it could be. I'm sleeping all night and through the day and just sat here with no energy when I am awake. At 26.
We went for the day out yesterday and I had to sleep on my partners lap whilst he drove. Like a child. It's awful. I don't know what else to do.
I'm considering paying for an early b12 injection to see if that helps.
The only thing off in my bloods now is slightly raised AM cortisol which neither my endo or gp seem concerned about. I've worked really hard and spent a fortune to get well yet still have no life
Hmmm... Your results are pretty good on Levo... not sure where the additional T3 could take you as already in a pretty good place. What symptoms do you have? Have you tested adrenals?
Main symptoms at the minute are fatigue and horribly dry skin. Still can't lose the weight either and periods have got a bit more regular but are still very start-stop which makes them really long.
Endo tested AM serum cortisol which was only very slightly raised. Said not to bother with 24hr urine or saliva. Sent results to both endo and gp.
Endo's secretary called after telling him the result over the phone. He said he's probably normal but wanted to see my notes when he was back in.
Neither have got back to me since so assume it's normal. X
I suggest you do saliva cortisol test, blood one is absolutely useless! Great Endo! ☺️ Have to learn not to take everything a doctor says for granted. Your symptoms can easily be a result of high/low cortisol. Your thyroid results are picture perfect so there might be a cellular issue here. More T3 won’t fix it. Your T3 levels are pretty good already!
If you have the T3, try it. But, you must reduce the levo because your conversion is good, and you don't want your T3 going too high, just a bit higher. Your rT3 will be high with that high FT4, and we don't really know what effect that has. So, best to reduce it by reducing your levo.
If by 'cellular issue' you mean thyroid hormone resistance, more T3 is exactly what would fix it.
Salphy's T3 level may be pretty good for some people, but probably not for her.
But, there's no such thing as 'picture perfect' thyroid hormone levels, because we're all so different in what we need. And, it's how she feels that is most important.
I'm not sure, but I think it's something you can only guess at. If you have really good levels of FT3 but still have hypo symptoms, then there's got to be something wrong, but there are no blood tests to prove it, so it's rather difficult to get help from the average doctor. But I've only just started reading about it, so hopefully I'll know more when I've finished!
Don't want to speak too soon but I've been taking 6.25mcg t3 for 3 weeks. Everyone has commented how much brighter I seem (at work and home) and I've just had my first normal and shortest period in at least 10 months. Consultant wanted me to start metformin at the same time but I'm holding off to make sure it's not a fluke because I want to know which one helps still napping every other day or so instead of daily but just had my b12 injection today so I'm hoping that helps. Otherwise will try a t3 increase. But looking positive
Glad T3 is helping Salphy- I'm coming up to 7 weeks on the full 25 mcg pill with 75 mcg levo, and testing next week for first time...I am expecting I'll need more of something as I'm still having a nap most days. But much better than in winter.
I feel the same but going to stick at I am for now until I've seen the consultant and tried everything he wants me to first. But honestly I feel like cracking open the champagne and telling everyone I've had a normal period!!! Really hope it's the t3 and not a fluke x
Hi there, I saw this post about starting T3. Please start very slowly, a 5 mcg dose. T3 is far more bioavailable than T4. I've just come to this site to try to order it myself and am was looking for a supplier. Could you send me a private message where you got it?
I agree with going back to 100mcg Levo and adding 5mcg T3. Your FreeT4 is above the range on 100mcg so after making sure you’re ok with 5mcg T3, I’d reduce Levo a little more and add another 5mcg T3. Remember it will take some time for T4 to reduce due to long half life of Levo, so make increases in T3 cautiously. However in my experience T3 is much safer than everyone thinks, but it can be a devil to adjust to the right level! Good luck.
You know how you feel. You develop an instinct for thyroid treatment (of yourself) over time. A bit like being able to tell the difference between feeling thirsty and feeling hungry! Have to trust that instinct.
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