T3 only urghhh!

[Sally56]

So I've been on T3 only for a month. I stopped the levo which has of course been dropping. It is at a low of 8, getting lower. I became what I thought was under medicated, figuring that the less my t4 got the more T3 could be added. I am now a mess of symptoms. Muscle weakness and pulled muscles especially in upper back and arms. Breathlessness, twitching, so I reduced and felt worse and thought I might be over? I have been reading others experiences on T3 and alarmingly read about its effects on the heart. I have an improving cardio myopathy left ventricle thing which it appears can be thyroid and t3 is not advised. I am going to get the NDT from my endo. I just can't do T3! I cannot tolerate exercise at all, except walking light. Stairs are hard and getting up from squattIng impossible. I am also wondering about adrenals, I feel stressed all the time, and my body can't calm down. Any advice mist gratefully appreciated.

[LynLyn]

Hi Sally 56

I’ve started a T3 only medication since March of this year. I’m not an expert and as a result I rarely post on the forum but I know I get a lot of benefit from reading everyones’ messages. I’m finding that the best approach for me with T3 is very slow increases - no more than 5 mcg. I’ve let these dose increases settle for a long time - at least two weeks. I’m currently taking 40mcg and have been on this dose for 4 weeks as I now want to investigate my blood sugar, iron and cortisol levels. If I’ve felt unwell after an increase I’ve always dropped back to the previous dose and waited longer. I use walking (often just around the small block where I live) yoga (sometimes only 5 mins) and a meditation app to help me on my journey. I’ve had some funny symptoms but all have passed with time and improving my diet and exercise. I’m viewing this as a long journey. I hope this helps.

[Sally56 in reply to LynLyn]

Hi Lyn,

Thanks for replying. I'm glad to hear you are in control of your journey. My endo prescribed 20mcg of Cytomel twice a day to begin. I was told to stop the Levo and start the t3 regime immediately. After about 5 days I was climbing the walls with over medication symptoms so I stopped and Pe eked it back and introduced slowly 5mcg at. Time. I was happy on 10mcg morning and night and 5mcg about noon. However last week I began to have symptoms which I thought were under medication (made sense that there was a little bit of T4 still there according to the blood test 2 weeks ago. So I added another 5mcgs. I now don't know where I am with it all. I started a new job and believe the physical stress of it has triggered an adrenal thing which apparently t3 can do. I can't explain how I feel but my body is on full throttle. I am laying down but I feel like I am still moving. I'm shaking inside. It's weird and scary. I have only taken 10mxgs today. I am not game to take any more. I feel so sick, in pain and really weak and spaced out, blurred vision and I can bearly lift my iPad. I've always thought I had adrenal fatigue as I have an adrenal condition called primary Aldosteronism . Has anyone else had an adrenal type reaction to t3. I don't know what to do.

[Rapunzel in reply to Sally56]

thyrophoenix.com/adjusting_...

healthunlocked.com/thyroidu...

40mcg of T3 as a starting dose, even if replacing T4 to T3 is poor advice and then some. Change your endo

[Sally56 in reply to Rapunzel]

Yes, totally agree. I got off to a bad start with T3!

[Sally56 in reply to Rapunzel]

Thanks Rapunzel,

I thought I was all informed from the forum, but starting T3 was a curve ball. So thanks for the links.

[LynLyn]

I’m really sorry to hear that. I have a really stressful job too and I’m starting a new job in August so I totally understand how you feel. I have to manage my thyroid ups and downs along side a full time job. Some weeks I have to go to bed after my dinner and I’m always looking for ways to ‘make things easier’ for during the week. I’m now making all my lunches for the week on a Sunday and even have all my clothes ready. It probably sounds ridiculous but if I’m having a tough week then it means I can still manage. I’m no expert on managing T3 but I know it takes 12 weeks to clear T4 from your system. I know when I started this I had some really weird symptoms too. After 8 weeks of no T4 I did start to have easier increases. I’m currently staying at 40mcg for a while and investigating my blood sugar, cortisol and iron levels as I know these impact on the effectiveness of T3. I want to make sure that all the T3 I’m taking is being used properly. I hope things get easier for you soon. Wishing you all the best.

[Sally56 in reply to LynLyn]

Thank you Lyn, I really appreciate your support and advice. Yes the whole new job thing is worrying. I can understand rationing your energy and using it economically, I think that's clever. I usually make dinner in the morning that's when I have energy. I have investigated an Adrenal Saliva test and there's a collection place just down the road! (Brisbane Australia). I am taking Ferritin and I don't know about blood sugar, but I do have antibodies for Diabetes, so I am on the Michael Mosley diet which is no low sugar, low carb. I have got an emergency appointment Thursday morning with my Endo.I've been on T3 for 8 weeks now. So I probably still have T4.I am about to have a blood test. I will keep posting updates. Thank you for replying and thanks to everyone collectively.

[AnnaSo in reply to Sally56]

Hi Sally! Anna again here! I also had tough time on T3 only. Fo you the reason they put you on T3 only? What were your results like?

[Sally56 in reply to AnnaSo]

HI Anna,

Yes, I'm very unhappy that I got such bad advice, but I'll get off that organ recital. I'll be posting for advice here from now on

[AnnaSo in reply to Sally56]

Good idea

[Sally56 in reply to AnnaSo]

Hi Anna,

My Endo put me on T3 only, after my results showing that I was not converting. I am not at home now, but I can tell you approximately what the results were. T4 was over range and T3 in lower quarter. TSH was fine. 07 I think. I have no thyroid and an adrenal disorder just as background for you. I was having bad brain fog at the time and because I'm studying he has latched onto the fog, which is good. It's nice to have a brain back after 5 years (I was seen by Neurological Psychologist at the Neurology Department in the hospital and told I had slight cognitive impairment) . T3 cleared this up really well! I was a bit stunned when he put me on T3 only. I had seen on the forum that it usually is more successful with T4 as well?

[LynLyn]

When I read your message I thought I know how you feel! Having an underactive thyroid is not easy and i know, like you, I’m still at the beginning of a long journey. Hope your appointment goes well - will be thinking of you. Let us know how you get on 😊

[Sally56]

Thanks Lyn, I will. Feeling a bit better but not fab!