Sitting here snivelling and feeling very sorry for myself. Just had consultation with private endo and as I still get ectopics he feels I'm having too much thyroxin. So after 6 months on T3, only 10mcg day and adjusting levo up and down, he now wants me to stop it and go back to the same dose levo I was on when I first started with him. I get what he is saying, if I see a cardiologist he will probably say it's thyroid causing ectopics but I had them before! What a waste of 6 months of my life never mind the cost! I've had enough, why can't someone sort me out? Surely I'm not the only one who feels they're banging their head on a brick wall? There must be someone who can treat me holistically, not just in different compartments like I'm a thing not a person.
Thanks for reading my rant, just needed to vent my frustration. I don't expect any answers or solutions to my moan so I must put me big girl pants on and get on with it.
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Baggiesfan
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take 75mcg levo and 10mcg liothyronine a day. Levo was increased early Feb from 75cg on 3 days, 50mcg 4 days a week, T3 the same as I struggle with ectopic heartbeats.
FT3 3.8 (3.1-6.8) was 4.2 end January.
FT4 12 (12-22) was 11.5
Tsh 0.06 (0.27-4.2) was 0.66.
These results suggest you are under medicated
How much levothyroxine were you on BEFORE adding T3
Thank you, I was on 100mcg 5 days week and 75mcg the other 2 before starting T3. I felt lousy then and now he wants me to go back to the same. I suppose he doesn't want the blame to go to him for my ectopics. Results then, same ranges T3 3.67 so almost the same. T4 15.4 and tsh 0.4. Prior to that, last May, same dose levo and T3 3.8, same as now, T4 18.3 and tsh1.26.I am gluten free but do have occasional mishaps and yes I take magnesium, just changed to taurate from glycinate.
Me again, so if I'm under medicated, which I think I am too, why does he expect me go back to where I was 6 months ago? To cover his back is what I think, so someone else can't say his treatment caused the ectopics. I've had them I started T3, probably not as bad which is why he said it's aggravating me now. I just want to be normal me again and don't know how to fix me anymore, I've run out of fight.
I just wanted to say that I feel your pain, really; I’m sure many of us do… It has taken me over a year to start thinking about fighting the thyroid system again and I’m only in the thinking phase! I don’t have any solutions really, except that I firmly believe we all need to trust our guts in this thyroid business; we know best whether we feel right or not and if you think you still have thyroid issues and those are causing your problems rather than other illnesses, then I suspect you are right. So, a long-winded way of saying “keep your chin up”, and take a break from thyroid stuff of you need to and if you feel you’re right to do so, have another crack of the whip when you’re ready.
Thank you for understanding. I really want to sort myself out now, I feel I've wasted the last few years of my life feeling unwell when I know deep down I can be better, I'm just tired of fighting the system.
I suspect many of us have done the " banging your head against a brick wall thing", it's soul destroying!! Been there!
I'm not convinced your endo has a good handle on thyroid function....is he a diabetic specialist perhaps?
The British Heart Foundation site indicates...Like most causes of palpitations, ectopic beats are usually harmless and do not mean you have a serious heart condition. They generally require no treatment unless they occur very often or are very severe. Palpitations and ectopic beats are usually nothing to worry about.
Have you been told your ectopic beats are otherwise?
It would seem therefore that your medics first concern should be your undermedicated hypothyroidism!
SlowDragon has added your recent labs...
Your FT4 is scraping the bottom of the range so there seems no reason for this endo to say that you are having too much thyroxine/T4
Your FT3 is similarly low.
The heart needs a lot of T3 so perhaps this low T3 is part of the problem.
You are very unlikely to be overmedicated If your FT3 remains within range.
Your endo has probably looked at your low TSH ( a pituitary hormone) and concluded "overmedication" without considering the thyroid hormone levels adequately
From these results it's rather difficult to tell the status of your T4 to T3 conversion
So why were you prescribed T3 rather than given more levo...you have plenty room to do this.
Has he read recent discussions about T3 and just gone there as a possible solution, with limited knowledge
Have you tested/ optimised vit D, vit B12, folate and ferritin all essential co-factors for good thyroid function?
You may find that things improve if your endo not only returns to your pre T3 dose of Levothyroxine....but increases it as I'm surprised didn't initially happen.
Providing your T4 to T3 conversion is good this will also raise your FT3 level.
Thank you and yes I needed a rant, so sorry. The endocrinologist is on the thyroid uk list and others here have said he was helpful for them so I assumed he knew how best to treat me. I'm so disappointed in him, he did apologise today for not helping me but that's really no help to me is it? I've no idea why he didn't just up levo, I guess he thought it would help. I challenged him when he said my tsh was low and said it will be if I'm on T3 but he just said, no not always.Vitamins etc checked by gp January I think, all in range though vit d a bit low, ferritin usually high. Dr wasn't bothered but never is. I take 2,000 d3 and magnesium daily.
No idea if my conversion rate is any good but if like the rest of me probably not.
I know the ectopics are harmless but they're really affecting my life and I've lost my confidence. I can't have beta blockers as I'm asthmatic.
Locum Gp had referred me for cardiologist opinion over 3 weeks ago. Just chased it up and guess what, they haven't received it at the hospital, you couldn't make it up!
Thanks again for your informative reply, I'm not a medic either but as a retired nurse prescriber I sometimes feel I have greater knowledge than some of them who are supposed to be looking after me. I wish I was brave enough to self medicate I'm just not at the moment. Chin up eh, there's plenty worse off.
Thanks, yes I did. It helped for a couple of days then went back to usual. They did settle a couple of weeks ago but returned this week. Maybe it is stress or anxiety, they certainly came with a vengeance yesterday after speaking to consultant. The more I think about it, how can I be over medicated if my T3 and T4 are low? I've requested appointment with gp, earliest telephone is 3 weeks, feels forever away when you feel lousy.
You should try splitting your doses again and stick with it for at least a few weeks to see if this helps and yes the stress of dealing with thyroid issues constantly don’t help.
I eventually had to split my doses because of palpitations and once I started doing this my palpitations disappeared I think I had too much T4/T3 in one shot.
I thought that too initially but I'm back to T4 only now, as consultant said. I'm dreading going back to how poorly I felt before, making me upset thinking about it. None of the medics seem to care. I just feel that all they do is tick a box to say they've spoken to you. I think my consultant was more worried about what the cardiologist might say of my suppressed tsh than how I feel. I feel so lost, weak and helpless, I just want to be me again. There has to be someone out there who can deal with me. Sorry I'm rambling on again x
Nope your not rambling its a real frustration us with thyroid disease go through on a daily basis …. All you can do right now is take your T4 meds see the cardiologist and see what he has to says and retest and keep moving forward and stop looking back.
Yes, thank you I can't do much else can I? I'm not seeing the cardiologist, gp just asked for advice. I chased it up yesterday as it's been over 3 weeks, gp say they've sent it but hospital have never received it, suggested ask gp to resend urgent as normally only takes a week, I have done this so just got to wait it out. Thanks again x
If it were me I would definitely want to see a cardiologist so he/she can tell me everything is ok with my heart and then I can move forward and have a better ground to stand with Endo over medication….. Good luck I hope you get a solution that satisfies both you and your Endo.
Thank you, yes that's how I feel. Just had email of his secretary, can I check his letter before he sends it to g.p. hope it's ok to post. I've replied, yes that was what he said but I don't accept I am over medicated with a low T3 and T4, and yes I would like to see a cardiologist sooner rather than later.
His letter seems reasonable in his thoughts about the thyroid levels and ectopics and he did acknowledged you were having issues with ectopics prior.
I think its best right now to try and not over analyze the thyroid stuff and get to the cardiologist and let them decide if your ectopics is thyroid related or not and work it out from their.
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