Hi everybody. I have been on Ikaros for over a month now and I really don’t think its suiting me at all. I’ve started getting hypo symptoms that I haven’t had since taking Unipharma for over three years. Weight gain, severe constipation, fluid retention, low mood and anxiety, mood swings, problems focussing, low blood pressure etc. I had a bad virus at the beginning of the year and ended up with reverse T3. Had just got to grips with the effects of that when out of the blue I received Ikaros instead of my Unipharma,was assured it was purer and just as good.
I really don’t know what to do now. I can’t stop taking it in case I get worse. Before, on T4 monotherapy, I was on the verge of a myxodema coma barely able to function. Atm I am how I was when I first started taking levothyroxine about 12 years ago.
I am seriously thinking of going onto NDT after Christmas. I have a source but have absolutely no idea how to go about this. Has anybody got any advice please?
Also my new test results are below. If anybody has any thoughts regarding them I’d like to have them please.
FT3 6.3. (4.00-6.60) (normally its at the very top of the range)
Ft4 11.9. (7.9 -20.0) (usually around the top third)
TSH 0.01. (0.34-5.60)
TIA
Written by
MrsRaven
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There was a post recently from someone who said they'd actually received Unipharma brand from the usual supplier (sorry, don't have a link to the post) and another one today which sounds like they've received the UP brand healthunlocked.com/thyroidu... so maybe it's possible to get it now after all. I wonder if you emailed the supplier and asked if they can supply UP as the Ikaros doesn't suit, whether they would confirm they can actually supply it.
No not yet. I saw something about there being issues with Cynomel supplies on a fb group. I don’t know how true that is. Also know people who haven’t got on well with Tiromel. I was giving some thought to Henning Thybon because my GP, who isn’t under the thrall of the endo, will give me a private scrip. But in the end I think on balance I’d rather get right off synthetic hormones
rT3 is high during illness to slow you down. Once the illness resolves rT3 should drop.
FT3 6.30 is excellent but if it is normally higher in range perhaps you could try an extra 6.25mcg of T3 to see whether symptoms improve. Alternatively, add 25mcg T4 to your T3 dose to raise FT4 which will also raise FT3.
Hi clutter, the rt3 didn’t drop after the bug went but I did get it under control and was fine. I got a new set of bloods which showed I was back to what was normal for me. I have increased my T3 several times but it doesn’t seem to be improving matters although my eyebrows are growing back and hair loss is setting down, my weight gain, fluid retention and constipation (no doubt all linked) are if anything worse. I don’t know how high I dare go with T3. I’m on one and three quarters of a 25mcg tablet now. Still freezing cold and suffering thoug in some ways not as much. I had thought of increasing my levo but I risk running out as the surgery won’t give me more than 100mcg and the endo actually wants them to reduce it😞
No. My GP does and supports me but my endo will have nothing to do with t3. Won’t even listen to me. She did acknowledge that I have “troublesome symptoms” but still wanted to lower my levo dose to get my TSH above 1. I only feel well if my TSH is fully suppressed and my FT3 it right at the top of the range with my FT4 about two thirds up. Then I feel like a teenager and can take on the world.
Thank you for your advice, as always, I will do as you suggest and increase my T3 a little more. My temperature is barely at normal and my bp is low. 85/45. My resting pulse is around 76.
Why do you continue seeing endo if she wants TSH at a level where you feel undermedicated and she doesn't support you using T3? In what way is she helping you?
You aren't undermedicated so I would explore other reasons for having low bp. Resting pulse 76 is rather good isn't it?
Simple answer, I don’t. I kicked her into touch but all but one of the partners still refers to the letter she sent to them. I have always had lowish blood pressure and asked for help with it but was told they don’t treat low only high. I was told to drink salt water, and increase salt in my diet.
Yes my pulse rate is fine. It is one of the guides I use to check whether I am on too much T3. Though when my blood pressure dips lower my pulse increases to compensate.
MrsRaven I too have been sent ikaros in place of unipharma T3.
I tried it for 3 days on my normal dose but found I was sluggish, tired and had horrendous pains in my feet & legs so swapped back to my remaining supply of unipharma.
A couple of weeks later I have tried again and so far 10 days in at a higher dose I have had mixed results.
On the plus side I take a single daily dose and don't seem to get the feeling of 'run out' in the evening quite so severely as before so wonder if there is a time release element to it. I am also feeling more energised and joints don't seem to be siezing up so much so can walk normally (even managed to run up a few stairs at work) Cognitively I seem OK.
Downside, daily weight gain possibly due to losing urgent need to go the toilet first thing. (sorry if too much information) Constipation was never an issue previously and neither was feeling cold but I could put that down to the weather. I find I'm flagging in the afternoon and actually had to sleep yesterday afternoon on my day off. SeasideSusie I've flagged you in this as I said before I'd let you know how I'm getting on with it.
I definitely feel it is not as strong as unipharma but do the good points outweigh the bad? I'll keep going with ikaros for now but can't really afford to keep gaining weight the way I am so may have to rethink.
*Edited* to say that I don't get problems with acid but have a slight burning sensation after taking these pills which normally disappears after I've eaten and I've had a wicked sore throat since ive started them too.
Hi Singoutloud. I increased my dose so I was eventually taking 50mcg and did experience a slight improvement in some things. I have been suffering a massive amount of stress recently and I wonder if that might have been partly responsible as I was going more hypo anyway, with my adrenals causing issues.
But I was still gaining weight, and like you can not afford to do so as it has a runaway effect with me. Once I start gaining it’s like being in a car with no brakes.
A very kind angel in disguise, that I got to know on one of the groups, is on a low dose of t3 and going onto NDT, and she sent me two packs of unipharma to see would it make a difference. I have only taken it for one full day and have gone back to my old winter dose, which is slightly higher than my normal one, so it’s it’s a bit soon to say.
I had bloods done and am not suffering from reverse T3 so that’s one thing knocked off the list.
My next worry is finding either more “affordable” unipharma or a suitable replacement. I am not on a high income and can’t afford to pay a lot of money, especially with buying supplements which my husband needs too.
Thank you Singoutloud. I was doing OK on UP but not the same on Grossman Cynomel - I would choose UP if I could and hope that by the time I need to stock up it might be available again, but who knows
Thank you for writing this post. It strongly suggests that, for whatever reason, Ikaros is not an acceptable product.
It joins a considerable list of non-mainstream products which have ultimately ended up being unsatisfactory. I'd certainly say that anyone who supplies it instead of a recognised liothyronine that is properly licensed as a human medicine in at least some countries, is untrustworthy.
I don’t know the status of Ikaros as far as licensing is concerned. My understanding is that it was not supplied to pharmacies but directly to hospitals etc. It definitely doesn’t suit me but then again neither do some brands of levo like mercury and activis. Another problem is that, for some strange reason, my FT3 needs to be right at the top of the range, or maybe slightly over, for me to feel well. And it’s not right up there yet.
I did experience some improvement when I increased my dose yet again, but it wasn’t a lot.
The water is muddied at the moment by the sheer amount of stress I have been under for the last 4 months, and the fact that I have got problems with my adrenals. I can’t afford testing atm, but I am waking around 5.30 am most mornings recently, feeling panicky, with my heart racing and drenched with sweat to the point where I need to change my night clothes. The room is not hot as I don’t have the heating on all night. I have tried taking a small dose of T3 then, but doesn’t help.
I won’t know till my situation starts to resolve itself, which it should now, whether the unipharma will help. Though in my experience it’ll take a while to settle, and by then I may well have run out of unipharma and be trying something else.
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