I have an endo appointment on Tuesday to review my meds. Since the last visit to the clinic I have reduced my T3 from 20 to 15mcgs daily (without telling the endo) and am still taking 75mcg levo. I did this following a suggestion here when I described experiencing very unpleasant shakes. (Results showed I wasn’t over medicated but endo had tried to cut my dose based on suppressed TSH even though other symptoms had improved). I have gone through a very difficult time lately, losing both my parents in the space of three months, and I have been feeling very cold, exhausted, anxiety levels through the roof and not surprisingly extremely tearful in addition to shakiness, pounding heart and palpitations. I’m worried that if I tell the endo about the shakes and heart issues he might put it down to being over replaced and try again to reduce my dose? He already told me that suppressed TSH could lead to heart and bone problems. Maybe I’m worrying unduly and just shouldn’t mention these symptoms? I feel very under medicated at the moment but didn’t want to increase the t3 again until after my appointment when bloods will be taken. Not even sure if this post makes sense! Brain not functioning terribly well either!
Do I tell endo about shakes, pounding heart and... - Thyroid UK
Do I tell endo about shakes, pounding heart and palpitations?
Hello Micky Dooley,
Firstly let me say how sorry I am to hear that you have lost both parents in such a short space of time. I know from experience what a difficult time it is for you.
Back in 1992 my parents died within five weeks of each other and it was then I am sure that my thyroid problems began ,though not diagnosed for another ten years !!
You need to give yourself time to grieve and be kind to yourself. Take small steps each day in recovering from this sad event and it's a natural thing to cry.
I would tell your Endo as he should be there to help you and understand how you have been affected.
I take T3 along with my Levo thyroxine and my TSH is below 1.
I am not qualified to comment on your medication adjustments,but am sure someone here will be able to advise you, especially with your appointment being this coming week.
I wish you well. Spring is just around the corner,There are daffodils in bloom in my garden, far earlier than usual and they make me smile 😊
Thank you for your very kind message. I’m sorry to hear you’ve had a similar situation but good to hear that you’re so positive. I have a very stressful ongoing period in front of me unfortunately and am not coping well. It’s hard to see the positives around me at the moment but thanks for the reminder that spring is around the corner! Looking forward to better times.
To be honest, I think I'd see what the bloods say first. Will you see those before you see the Endo?
If, or surely when, the Endo asks how you've been, you can very truthfully say you've had a dire time, and it's hard enough to tell which was is up, never mind how you feel. Surely, he'd get that?
I'm so, so sorry to hear of your losses. I lost my parents over 20 years apart, and that was quite dreadful enough.
Give yourself time, and self-compassion. Self- compassion is underrated often, but in my world it is critical in terms of me moving forward from any huge challenge.
If I ask myself, "could I have reasonably done better", and the answer is I tried my hardest (and it sounds like you were stellar during it all), I try to allow myself time to just be.
Nobody can tell you how you should feel at the moment, accept that it's bound to be horrendous.
Thankyou for your comments.However, were they actually meant for Mickeydooley,as the original post was hers.?
The sad time I experienced when my parents passed away was a long time ago in 1992 and at that time I wasn't even diagnosed hypothyroid.My GP finally diagnosed it in 2002 and kept me on 50 mcgs of Levothyroxine for 10 years.Fortunately,I then found Thyroid Uk and a member here who lived in my County advised me of the Endocrinologist she was seeing and I asked my GP to be referred to him.
I have been seeing him twice a year ever since 2013
He straightway raised my thyroxine and added T3 which I have taken ever since.
I have my blood tests a week or so before I see him,so all works pretty well for me.
My main concern lately is for the brands of medication available.
I think there needs to be a greater understanding on the part of Pharmacists that it is not good to fill prescriptions with anything that is on their shelves and that patients need the medication that works for them registered on screen and supplied for each repeat prescription. The patient's health is the main priority!
However,I am probably fortunate that I can have access to my Endo if I need to ask questions after seeing a Junior Endo first at his clinic,as I go to a teaching hospital.
Question is: did reducing your T3 help with the shakes, pounding heart and palpitations? How long ago did you reduce it? Maybe you need more time - both for the reduction to take effect and for your emotional state to stabilise. Deaths of loved ones can take a terrible toll. There were two deaths in my family between August and November, and I was in pieces. And, they were even as close as parents. It was certainly no time for making changes.
I don't think that in your place I would mention these new symptoms to the endo. See what your blood tests are like first. Give yourself more time. Doctors don't tend to be very understanding about the effect these situations can have on people. Having your dose reduced yet again will probably not help.
I'm so sorry for your lose. xxx
Thank you GG. It’s been a horrendous few months. Honestly, it’s hard to say if the t3 reduction helped. I really don’t think so. The biggest difference I noticed was when I had to give up my sugar free/gluten free diet. Sitting in a home for 10+ hours a day and a 3 hour round trip meant that I ate whatever was put in front of me - usually sandwiches and the odd biscuit and whatever my long suffering husband prepared for dinner each night! My shakes were never as bad after having a meal out and eating plenty (including all the ‘bad stuff’ I’d avoided for years!). I’m sure I hadn’t been eating enough calories beforehand and my body was struggling. The pounding and the palpitations are fairly recent and may be due to the ongoing stressful situation. I think I reduced my t3 about 6 weeks ago. Not entirely sure. I usually keep records but it’s all been a blur recently. I’ve decided not to tell the endo about the reduction and see what my results show. I’m hoping my TSH has raised somewhat (my appointment is in the afternoon and I wanted to ask if I don’t eat anything all day would that help?) and that I won’t have another fight on my hands. I’ve been feeling extremely hypo for a while now.
Could very well be that you weren't eating enough calories. Plus the stressful situation. It all adds up.
If it were going to help, I think the reduction would have done so by now. But, I very much doubt your TSH will have raised at all. You don't say by how much you reduced, but a small reduction in T3 doesn't do much in that respect. And, why would you make yourself ill just to please an ignorant endo?
No, starving yourself all day on the day of the test will not help in the slightest. The TSH is at its lowest in the afternoon, and there's nothing you can do about that. But, low blood sugar could have other effects. And, it certainly won't help you to deal with the endo! You need to be on top form to do that! 
Haha! True! It was suggested on here that a small reduction might be worth trying to see if my shakes improved. I reduced from 20mcg to 15mcg. I certainly haven’t felt any better since the reduction. I’ll continue on this dose until Tuesday now and see what happens then. Thanks again for your input.
Well, it was worth a try. You never know. It could have been that your dose was too high for you as an individual. But, now you know that it's not the solution, you have more ammunition for fighting your endo.
A quick update! Just had my endo appointment. I saw a very nice Dr whom I’d seen before and who had been very sympathetic. He discussed my symptoms, went over my family history (in relation to thyroid disease) again and examined me. I told him about the difficult time I’d been having. He told me that the previous dr I’d seen had been worried about my suppressed TSH but stated that some people only felt well when their TSH was suppressed. (Yay!) I pointed out that my last t3 and T4 results had only been 62% and 32% through the range, my basal temperature, resting heart rate and blood pressure were still all low and I didn’t feel like I was over replaced. He felt my hands and commented that they were ‘icy’ and agreed that I didn’t seem over replaced to him! He commented that my last bloods showed normal antibodies but I told him they had been raised in the past. He asked if I’d ever had a goiter which I did but it’s not evident now. He then said that it seemed that my thyroid had ‘failed’. I don’t know exactly what he meant and I wish I’d asked him! He will write out to me within a week once he gets my blood results back again. He doesn’t want to see me now for another 4 months unless it was necessary. (I’d been going every 6 weeks or so).
He then said that it seemed that my thyroid had ‘failed’.
He probably meant that your thyroid was now dead, killed by the Hashi's. But, of course, it's a rather ambiguous statement! You really would expect them to be more precise.
So is it not working at all now? Would my results not be a lot worse if that were the case? If that’s what he meant what happens next? Scan? I’ve been so flat and confused lately I was kicking myself afterwards that I didn’t ask more questions. I know I’ll hear next week but I’m a bit shocked at the moment.
If it is dead, it won't be working at all, no. That's what mine's like right now. But, the odds are it hasn't actually done any work since you've been on thyroid hormone replacement, so no, your results wouldn't be a lot worse, you present dose will take account of that fact.
He might suggest a scan, but what would be the point? There's nothing you can do about it. If I'm right in what he meant, then he will have deduced this by the fact that you no-longer have high antibodies, and that your goitre has now gone.
Thank you very much for your reply yet again GG! I don’t know what I’d have done without all you fabulous people on here. I have so many questions and I’ve learned so much. X
Glad it helps.
It certainly does! I have so many more questions but I’d better leave you in peace! Thanks again.
No, ask away! But, it might be a good idea to start a new thread for new questions so that a maximum of people can see them and reply.
I’ll do that. X
If mine is dead does that mean I won’t have hashi flares etc? Will my levels settle and be more stable?
Yes, it does. Absolutely.
Great thanks. X
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