For those who have tried t3 (self treated)

[Salphy]

What were your t3 levels when you started, what did they go to when you took it and did it make you feel any better?

Mine have never really been that low but I feel horrendous.

I've been referred to endocrinology mainly for PCOS in January. I called this morning because I haven't heard anything but have just been told there's a 16 week waiting list and they'll be in touch nearer the time (May...)

My Levo was increased to alternate 75mcg/100mcg from 75mcg daily. Will be 3 weeks on Friday. I'm sleeping slightly less but my other symptoms cold, brain fog, puffy face and weight gain are still having a party.

I was on 75mcg for 6 months and on that my tsh got to 0.29, t4 top quarter of range and t3 just outside top quarter. I was feeling good and lost 10kg since starting Levo.

People were commenting I was looking better and had lost weight and we're quite surprised when I didn't seem happy about it or them stating it. I was, I just felt since I hadn't changed anything other than started taking meds it could be so easily taken away again.

My recent tsh was 2.23 (0.27-4.2) t4 12.5 (12-22) and t3 4.5 (3.1-6.8) and I've gained 4lb back in the last 2 months.

I went gluten free in September. I have hashi's and antibodies increased also.

I'm just sick to death of feeling like this and like I have no control over my own body or how it looks and waiting and relying on the clueless nhs to decide when I should or shouldn't be feeling well based on labs.

Then I see Gigi Hadid saying how she knew something was wrong when she gained 3kg and now with the right treatment feels great and has lost that and more. I gained 3 stone and was told my slightly elevated tsh was clinically insignificant before I finally qualified for treatment!!!

So anyway i'm really considering trying t3 privately. I'm just concerned about going hyper with my t3 levels.

(Sorry I also needed the rant. I work for the NHS and thought my patients had it bad with our slowly reducing 12 week waiting list.)

Thanks x

[ThyroidObsessed]

Following yoir post as i may be self medicating soon with T3 x

[Clutter]

Salphy,

You are undermedicated to have TSH 2.23 and FT4 is low in range. FT3 isn't bad. Ask your GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

My T3 was <3.1. I feel well with it >4.5. It's been as high as 8.4 which was over range. I felt well but my hair started coming out in clumps.

[Salphy in reply to Clutter]

Thanks,

My gp increased me by 12.5mcg (alternate doses) but i don't feel much better. She won't let me increase any higher.

What I don't get though is the last time my t4 and t3 were similar levels (on 25mcg t4 12.49, t3 4.18) my tsh was 6.53.

That's the lowest they've been and highest my tsh has reached even though I felt like death.

I just don't understand why my tsh isn't reading similar when the other 2 are?

I also don't get how after 3 months on 75mcg I was tsh 0.29, t4 19 and t3 5.4 and feeling well then within another 3 months t4 and t3 back to square one.

God that must have been awful for you! How long did it take to stop? I don't think i have a conversion problem so maybe I shouldn't be considering t3. I'm just so desperate to feel well again

Thanks for responding x

[Clutter in reply to Salphy]

Salphy,

Show the Pulse article to your GP. If she won't increase dose then do it yourself because FT4 is too low.

[serenfach]

My results were similar to yours, and I pursuaded my GP to give me a trial of T3 to stop me coming back to the surgery so often, as I felt like death warmed up.

The day after I took my first T3, it felt like I had shrugged off a wet, cold, heavy overcoat. My body must have been crying out for it, and the results were totally brilliant. I got my brain back which I had missed terrribly. I took a combination of T4/T3 for a few years and then moved to NDT which was even better. Now I can no longer get the brand that suited me, I am thinking of going back to T4/T3 as the two other brands of NDT have not suited me at all and I have gone back on my health.

Good luck with your search for a way through the maze!

[Salphy in reply to serenfach]

Thanks so much it's so good to hear from someone who's levels were similar to mine. I feel crazy like the way I feel and my levels just don't match up! It's so frustrating.

Does your gp prescribe the NDT or have you been buying it yourself? Would he prescribe you t4/t3 combination again do you think?

I have to fight for a 12.5mcg increase I've got no chance lol.

I just feel like if there's something out there that could make me feel myself again then I want to try it and give myself the chance

[BeansMummy]

My GP and endo always thought my TSH should be around 2, I always aimed for less but it was a battle to get my levo increased. My endo would test my T3, and I also had it tested privately, and it was always very low in range. It was a long time before I realised that it was my low T3 level that could be making me feel so unwell - and I was VERY unwell.

My endo dismissed my low T3 results. She told me that taking T3 didn’t work, so I bought my own, and it totally changed my life. At my next endo appointment, it was a new consultant, and she accepted my much-improved health – she did read me the riot act that I would have heart and bone problems, and was concerned about where I was sourcing my T3 from, that I would overdose, blah blah blah, but she did request that my GP prescribe it for me. The CCG refused the request.

I noticed a subtle difference in my health on a daily basis, even though I was only taking a small amount and increased it slowly. I still take my prescribed levothyroxine, and obviously still taking the liothyronine (T3). My blood test results show that my T3 is usually right near the top of the range.

[Salphy in reply to BeansMummy]

Thank you I'm glad you're feeling better and found something that works for you I just don't feel like my levels show how I feel it's so frustrating.

I'm sure I read on here that the risk is like 1 extra hip fracture per 1000 people. If it means I'd be able to live my life and feel myself again I'd take the hip fracture right now!

They say heart problems but that's a risk of being hypo also. We can't win. I just don't understand why they're comfortable letting us suffer with hypo and remain overweight or losing hair or raising cholesterol etc but freak out when our tsh gets low x

[BeansMummy in reply to Salphy]

We need T3 for our bodies to work properly, something that endocrinologists don’t always seem to realise. Having low T3 was probably doing me more harm than not having enough. I’m past caring about the ridiculous warnings my endo was giving me to be honest – I hadn’t been looked after properly for the previous few years I was seeing one, so why on earth they think I would suddenly accept what they were saying now?

I told her that, if I did have any negative issues because of taking T3, I’d rather have a shorter life but live it than the awful no-life I had been living. She said that she understood that.

I actually don't think that your T3 result is that good. You said that your T3 was 4.5 (3.1-6.8) on your last test. I still felt pretty rotten when mine was that low, and feel much better when it is substantially higher.

[Salphy in reply to BeansMummy]

That's exactly how I feel. What's the point if we can't live our lives.

4.18 is the lowest its been and 5.4 the highest. I felt much better when it was 5.4 but still not 100%. But my tsh was 0.29 and my gp would have lost her head if that went below range lol so best I was going to get x

[BeansMummy in reply to Salphy]

Well my TSH has been low since starting on T3 – a very consistent 0.01 (0.30- 4.2) and my endo and many GPs have been beside themselves about it. The fact that I feel so much better, have lost all my awful symptoms, and am living my life again seems to be unimportant!

It took me a long time to get my head around self-medicating, but it was the best thing I ever did. I did blood tests to check levels, and also addressed my diet and got my nutrients to a good level (something else doctors don’t seem to think it important). I still monitor everything, and it does get me down at times but, overall, it’s all positive.

[Salphy in reply to BeansMummy]

You're certainly selling it to me!

I'm going to wait till my next blood test after my huge crazy 12.5mcg increase!

Then see what they say and go it alone if they won't help me anymore.

Thank you x