Roma t3

[Citrinesun]

Hi guys,

I am wondering if anyone has had any random issues whilst taking Roma t3?

So I have been prescribed this by an NHS Endo earlier in the month - to my surprise & absolute delight 🤗

So he was set on giving me 5mcg - 3 times a day as I was by then on 18.75mcg tiromel with 75/100mcg levo.

He was not going to agree to giving me 20mcg to cut so anyway I went with the flow.

So I have been taking them now for 10 days and I have developed so much pain & tenderness all over my upper body, all my chest, back, ribs, boobs feel absolutely sore to even just the slightest touch 😢 I feel like I have slept on cold concrete.

The first couple days I did get random nausea but it has settled now, but this pain is too much. It's been gradually getting worse over the last week..

☹️

*I have been taking 100mcg levo daily again as I just felt the dip very quickly and my T4 is now about 13% through the range so I'm hoping it goes up a bit.

It could be totally unrelated to the switch & just be a huge fibro flare, but my legs would hurt too in my experience.

Or I could be coming down with a bug, as I keep feeling on & off ropey, but I don't feel anything on my chest as yet but.

It literally feels like I'm a bruised inside my whole torso.

Has anyone else had this happen at all?

🤗

[TiggerMe Ambassador]

That doesn't sound like fun 😱 let's bump this up and hope it's just settling time needed, could it be the low T4 rearing it's head?

Day 4 on Roma for me, so far so good, T4 was low so I have bumped the levo up a bit as that was making me feel grim, just starting to feel the benefits of that filtering through... I'm aiming to get it back to 50%+ which I felt good at

[Citrinesun in reply to TiggerMe]

Thanks Eeyore 😇

Yeh it's not much fun at all ☹️

I think I will book in for a check over tomorrow,

I had lots of bloods done this week & I can see my lymphocytes are a little over range only slightly but I would say I'm getting a bug is likely.

I don't know if it's the low T4 coz it's been dropped for a while now since raising tiromel, I felt the tiredness more than anything, I think my pain from lack of T4 was more joint pain not this kind of pain.

Interestingly so after over a week on 100 levo again I can see my levels have upped to 16 🤗 much better than 13pmol/l but I don't think I will be able to get it any higher as I've never been able to tolerate more than 100mcg. I think 16 is about halfway so I'm ok with that.

I'm pleased you are now on your Roma journey too 😀 yeh I felt the same like you say, quite quickly so I upped levo glad I did, but Endo will throttle me as TSH is now 0.01 eeek will worry about it nearer the time lol

[TiggerMe Ambassador in reply to Citrinesun]

Let's hope its just a fast moving bug 🙏

I've yet to find out what the official bloods came out like 😬(why they don't put hospital ones on your medical record I don't know?) and what reaction that might bring from my Endo? Though I don't imagine I'll hear back anytime soon 😅

Lesson learned life without Levo is a non starter!✔️

Already started me on a lower dose of T3 so 🤷‍♀️ I sent my wonky Gene report to further bamboozle 🙃

MMH put me at 0.01 TSH and 24% T4

[Citrinesun in reply to TiggerMe]

Ahh you are literally sharing my boat number 0.01 🛶 let's just quickly sail past the endos hoping they don't notice.. haha Like I say worry about it nearer the time, mine did day he didn't want it dropping any lower it was 0.03 then & he didn't want me upping to 100 levo a day but it's tough Really it's my body not his 😂

It is a bit odd you can't see hospital bloods on your normal record they really should share that information maybe if you ring the secretary and see if they can email or post a copy.

Oh my Endo rambled on about they don't see generic tests as reliable 😑 however he put in the letter that I have done these checks and that I have been arranging my own health check for bloods.

I noticed my MMH kit I bought in November was due to expire on the 31st so I just got my lovely HCA to fill it for me so I just have an idea on how my T3 is looking on the Roma soon. 😇

[TiggerMe Ambassador in reply to Citrinesun]

Oh my Endo rambled on about they don't see generic tests as reliable

Always funny when you watch their face as you tell them MMH is an NHS Lab 😳😅

however he put in the letter that I have done these checks and that I have been arranging my own health check for bloods.

Mine too... also added that I had read quite a lot 😏no doubt code for (we've got a right one here)

I think after 0.01 our boat has officially sunk!

I will finally get to see the results when the Endo writes to me.... last time it took 4 weeks! In the meantime I'm going to dose appropriately to my desired outcome like you 🤗🤫💜

[Citrinesun in reply to TiggerMe]

I know 😂 well I couldn't see his face as it was over the phone but his voice did get high pitched like someone put 50p in him. lol.

Exactly it's definitely 'code' that I totally believe it.

Argh I know I was shocked it dropped again.. blimey we must plug that hole before pirate Endo gets us ⚓ 😎

Ah ok, as you had a face-to-face and bloods I guess the communication is different. I just got my letter immediately typed up and it's on the (my MFT account online) - basically my online profile with any hospital correspondence now not the NHS app.

I guess I will just get an appointment through for around march/April.

I agree we still have to go with how we feel no point in getting T3 prescribed if we can't even find our real balance with t4.

[TiggerMe Ambassador in reply to Citrinesun]

I know 😂 well I couldn't see his face as it was over the phone but his voice did get high pitched like someone put 50p in him. lol.

🤣🤣Brilliant description

Face to face and then 4 weeks to type the letter and send the prescription! Told me what I'd be on... assume I will be summonsed at some future date? I just email the lovely helpful Secretary (the one with private health care!)

[Citrinesun in reply to TiggerMe]

😆😆 Oh yes I remember the secretary who is with Bupa lol..

I know I mean really these guys are on stupid money and they take 4 weeks to send a prescription words fail me.

I did reply on your very funny post about the pharmacist but the website or my browser totally froze on me, had to restart my phone, so I don't think it posted.. will go & see..

I will inbox you at some point as I had my hormones done and could use your insight, as I haven't the foggiest.. 🤗 😇

[TiggerMe Ambassador in reply to Citrinesun]

Happy to shine a light if I can 🤗

[TiggerMe Ambassador in reply to Citrinesun]

It's a bit like a game of chess isn't it ♟️

Did your lower T4 affect your blood pressure?

[Citrinesun in reply to TiggerMe]

It is like chess isn't it 🤨 I'm rubbish at chess lol..

U know something I'm not sure i've had mainly high diaslotic for ages it's been around 90-94

but it's only when I switched from tiromel to unipharma for that week then I just got on the Roma where I've noticed a big drop, really freezing hands again aswel,

For eg in December I had a reading of 135/85 & 132/91 this is when T4 was about 13. So 75/100 dosing.

Now I'm getting readings like 109/96 or 108/77 some even lower.

I have not felt faint so that's good but I'm having to check it a few times a day now coz it's a bugger probably going to have to have another 24 hr monitor on & they are so bulky & annoying so that will be much fun lol 💜