Hi, me again after my rant 3 weeks ago when private endo advised me to stop T3, which I did. I have a telephone appt in 2 days with my gp to discuss a future plan for my thyroid treatment, hopefully referral to an nhs endocrinologist who has some idea about thyroid not just diabetes. I was just reading Greygoose's reply to TeeThom earlier today and noted that a low T3 can also cause ectopics as well as high, which is what I tried to say to my endo. Anyway, is there a study anywhere I can quote to the gp to push to restart T3 please? I have to say though that though the ectopics continue I have had a few days with less and also my anxiety is less but this could be that I'm less stressed about my husband whom I split up from 6 months ago, maybe that's what was making them worse all along 😊. Hope it's ok to put my correspondence from the endo on here with personal details covered for your information and maybe advice please? Thanks for your ongoing support, it's really appreciated.
T3 stopped three weeks ago. : Hi, me again after... - Thyroid UK
T3 stopped three weeks ago.
stress can exacerbate ectopic heart beats……so can caffeine
theheartclinic.london/condi...
Thank you SlowDragon, most likely is stress which I denied I had but who knows. I only drink a little decaf coffee, I know there's still a bit in, very little alcohol last 18 months so can't blame that either.
Tea, green tea, colas all contain caffeine, any of those?
hi Baggiesfan
The Endo seems to want to refer you to cardiologist , but wants to see in-range blood results from being back on levo first , otherwise he thinks the cardiologist will just blame thyroid hormone for the ectopics .
Endo does acknowledge the ectopic beats were there before your T3 trial , but you said yourself they got worse on T3 ,and have started to improve now you've stopped T3.
surely you need to follow through through with this endo's mention of referring to cardiology once he's seen blood results on levo , and then go back to the endo once the cardiologist has had a look at you ?
one way or another it will have to be an endo who gives you T3 again , either this one or another one , i'm pretty sure the GP can't reinstate it now .
If you want the GP to refer you to a different endo to start T3 again , i would think that a report from a cardiologist would be helpful ?
Thank you Tattybogle, I agree it's sensible to await cardiologist report and I accept that they would probably blame my ectopics on the T3, but it's frustrating after 6 months to put me back on the same amount of levo that I was on then and my blood results are worse. I feel I've wasted 6 months of my life. It hasn't helped that he asked for a cardiologist referral last year, with two referrals getting lost, after chasing them up, I had my monitor just over a week ago and am now awaiting an urgent appt.Yes I do feel better the last few days, less ectopics and anxiety settling but a think it was stress I was denying triggering them then going on a vicious circle. I split with hubby 6 months ago, my choice, but now I feel more accepting of it so I think that's helped.
I just wondered if there was any written research on low T3 causing ectopics that I could use to try to get the gp to refer me to a NHS endo to reinstate it. As much as I like the private one I'm not totally convinced he's right for me.
His last response to me included " your tsh is suppressed because your thyroid hormone concentrations on what you are taking is suppressing your pituitary. I agree that T3 can often do this but it is not good news long term as we discussed ".
I'm not sure I agree with the last part of this as I thought many here had long term tsh suppression with no problems though obviously we are all individuals.
Many thanks again for your time and reply x
This is all i have re. thyroid /heart, but don't think it's any use specifically for ectopics. healthunlocked.com/thyroidu....
Re. the TSH suppression comment from endo on letter .. i get the feeling they all have to have evidence that they have 'warned the patient of the dangers ... blah blah ...'
because TSH suppression is strongly advised against by the guidelines which NHS endo's have to take into account.... so writing this comment may or may not mean he is personally against allowing supressed TSH in any circumstance...., it might just be something he 'needs to be seen to have told you' ? .
The general tone of his letter seems better than some i have read which are utterly dismissive and plainly infer the patient is nuts/ unco-operative/not got a thyroid problem anyway etc ... if he was trying to be a complete arse he needn't have bothered writing that the ectopics were already there before the T3 ,,he could have 'forgotten' to include that bit.
So i'm not sure i'd totally write him off.
Since Baggiesfan has been off T3 for 2 week how long would it take to clear it from her system and see increase of TSH and T3 ? It seems he wants her TSH to increase but wouldn’t that take a long time? Curious.
every last scrap of the added T3 will be totally gone from the system after ?2/3 weeks , but as for the TSH having time to notice this lower hormone level and then respond by rising ..... well , that's a "how long is a piece of string" question. Depends how low it was on T3 , how long it's been that low for , how supressed (or not) it was on this same dose of Levo previously ... and even then you're still guessing .
(if it's been fully supressed for a long time as seen in hyperthyroid patients then it can take a hell of a long time to come back up)
Baggiesfan was previously on this same dose levo (with no T3) and had TSH 0.4 (just in range) and prior to that TSH 1.26 ..... and even on T3 it was not totally supressed, it was still 0.06
......so there is reason to hope it will go back to at least 0.4 (just in range) in a shortish time on the same dose Levo .. but 'how much time' is anyone's guess ...could be anything from 'this week' to '6 weeks' to '6 months' to ..... 'it won't unless the dose is lowered further' .
6 weeks would be the earliest reasonable time to have a look .. testing any earlier than that and you risk it not having had enough time to respond to the lower hormone levels and endo then asking to reduce dose further (as opposed to waiting a few more weeks to see if it came up on this dose ).
Thank you, it's 3 weeks tomorrow I'll have stopped T3, so I won't retest blood at least another 3. Yes he is a nice man though I often feel he can't remember me from last time but i didn't expect to still be paying for blood tests and also consultation, £150 every six weeks after six months. Probably expected too much didn't I?
As I said, I'll speak to gp tomorrow and await cardiologist report before I go back to endocrinologist either private or NHS. Obviously can't be seeing both at the same time which is sensible as they'll most likely not agree on the same plan.
tattybogle has given good advice.
I know and agree shaws, I was just wondering if there was any research I could use to back me up for the gp appointment sorry. My aching joints and tiredness have returned with a vengeance since stopping T3.
I am prescribed T3.
T4 - for me - is useless and all it caused was intense palpitations plus visits to A&E at all times..
T3 resolved the palpitations and I feel well and our brain and heart have the most T3 receptor cells.
T4 is an inactive hormone that has to convert to T3 but I think that some people cannot do so effectively.
Thank you, I'm thinking I might fall into the same category, will have to wait and see I guess. All advice and suggestions is gratefully received and increasing my understanding of this horrible thyroid problem x
I think the most important tests when hypo and we're having problems/symptoms is to test FT3 as heart and brain have the most T3 receptor cells.
Excerpt from link below:-
Is free T3 or free T4 more important?
Because T4 is converted into another thyroid hormone called T3 (triiodothyronine), free T4 is the more important hormone to measure.
Any changes show up in T4 first. T3 and T4 help to control how your body stores and uses energy (metabolism). The thyroid hormones also help control many of your body's other processes.
I think I would need to listen to this endocrinologist and take his advise. If you had problems prior to taking T3 then them continuing on T3 I guess that issue needs to be investigated. And I’d bet a cardiologist could blame T3 if your TSH is suppressed. If it was me I’d be trying to get my T4 and T3 levels in a place which doesn’t cause your TSH to suppress. Maybe a change in dose of T4 or T3 will be required.
I have had very low heart rates when I am over medicated in the 30’s. My TSH isn’t suppressed on T3 T4 combination. I tend to slightly lower my T4 liquid Levothyroxine rather than change my T3 doses. My heart rate is about 58 resting these days. I’m sorry you’ve been stressed about your break up. This could have an effect on your stress levels I guess. Plus it can take a few months to settle in with hormone changes when adding T3. Your GP won’t be able to reinstate T3 as you need an endocrinologist to agree to that. I’d go through the cardio tests etc and rule that out. Then restart the T3 under guidance from your endocrinologist once you feel less stressed and restart the process. I know you’ve spent 6 months doing this already. Keep calm, keep positive, that’s the way forward.
"trying to get my T4 and T3 levels in a place which doesn't cause your TSH to suppress".
I thought that anyone on T3 would have a suppressed TSH ?
I came off T3 for 6 months at my doctors request and just had Thyroxine, needless to say it didn't work.
After 20 years on T3 having a suppressed TSH, it wasn't coming up any time soon, still 0.004, even without T3.
depends on how you define 'supressed '.
do you mean 'a bit below range/ low, but not fully supressed' ....
or do you mean 'unmeasurable/fully supressed' ?
'fully supressed' TSH that has been that way for a long time, will no doubt take much much longer to come back up (if it ever does ) unless the dose if levo is also reduced to stupidly low/verging on hypothyroid for a while. eg if you took half the levo dose you needed for 3 months i bet it would come back up a bit then , or if you took no levo at all for a few weeks then it certainly would .... obviously NOT a helpful course of action if the goal is to feel better. rather than to play with the TSH result.
But a 'low but not fully supressed' TSH is probably going to be a bit quicker to respond to much less drastic dose reductions like just removing the T3 input and keeping Levo the same.
But taking T3 does not necessarily supress the TSH (by either definition)... some people clearly feel the benefit of T3 while still being able to keep their TSH in range ... but that doesn't mean everyone will be able to achieve this .
pubmed.ncbi.nlm.nih.gov/352...
This trial of 59 people on 'T3 only' versus 'T4 only' has their TSH in range after 12 weeks on T3 only . (i don't know what dose they were on, haven't looked at it that closely, but it was clearly enough to feel 'improved' in the areas measured compared to how they felt on T4 only )
I’m on Liothyronine plus Levothyroxine liquid. My T3 level is mid range and my T4 below mid range, this is without ingestion prior to the blood draw. My TSH latest in late January 22 was 0.90(0.35-5.50). I’ve had 19 blood draws since I started T3 plus Levothyroxine combination medication about 3 years ago now. All except 2 results had a TSH in range. The 2 not have been slightly suppressed. To put this right for me I reduced my Levothyroxine ever so slightly from 75mcg a day to 64mcg this then worked as far as my TSH is concerned. I’ve never felt so energetic and full of life. I’m 63. 10st 4lbs. I lost 4st as well over my first year in T3. I feel really youthful. A healthy persons TSH is about 1.00. I aim for that. My endocrinologists both private and NHS are really pleased with my outcome and never quibble about repeat prescriptions. Not all people will have a suppressed TSH on T3.
Thanks McPammy, I'm glad to hear you are so well now. Unfortunately my Tsh dropped right down as you can see from my previous posts despite lowering levo and trying to increase Lio. My Tsh before T3 was 1.26 and now it's 0.06, I was only taking 5mcg twice a day. I am sure we speak to the same private endocrinologist but I've not been as lucky yet with results. Was it he who tried you on liquid levothyroxine? Also my gp will not refer me to nhs endo if I am consulting a private one, which I do understand. I'm a tad older than you, 65 now and unfortunately gone from 9st 4 to 10st 7 in a couple of years despite good diet and exercise. Just shows we're all individuals and one size treatment does not suit all.
It was my private only Endocrinologist who suggested to my GP that I was prescribed liquid Levothyroxine. There wasn’t any problem doing that. I have since learnt that it’s quite expensive in comparison to tablet form. If I was you I’d try to get it through your private endocrinologist suggesting to your GP. It might just be your answer. My weight shot up by over 4st when I was grossly under medicated. I’ve lost all that now. Your weight doesn’t seem too bad but as you say we are all individual. It’s about how you feel good.
I hope you can get things sorted.
Thank you and yes I hope to get sorted soon 🤗
Thanks McPammy, I agree the cardiologist will blame the T3 for the ectopics hence why I've stopped it for now. With the endo I did try lowering T4, raising T3 and lots of other combinations but my blood levels got worse over time instead of improving unfortunately, ectopics occasionally settled but though I know they're harmless it's a vicious circle once they kick off. I've just got to try and ride it out but I'm not as patient as I ought to be and I'm not sure endo will restart T3 again, he was perplexed by my blood results too.
Suggest you request endocrinologist prescribe liquid levothyroxine, see if this improves symptoms
Also essential to regularly retest vitamin D, folate, ferritin and B12
Are you taking magnesium supplements, can help improve irregular heart rate
Are you on strictly gluten free diet
Have you been assessed for Mitral valve prolapse
Common heart issue with autoimmune thyroid disease, Hashimoto’s or Graves
webmd.com/heart/news/199911...
Thank you SlowDragon, no I haven't tested Vit D etc since January, I am hoping the gp will do them for me and I can do them in about 3 weeks, i.e 6 weeks since stopping T3. I take magnesium taurate every day, almost strictly gluten free, occasional lapses but not every day. Not been assessed cardiac wise for a good few years but was ok then, I did have Graves. I'll have to await cardiologist appt and see how that goes but thank you, that's interesting. Also never thought of liquid levothyroxine, gp wouldn't be impressed though due to cost BUT as someone else said a while ago, am I not worth the cost? X
You may need endocrinologist to give GP a nudge to prescribe
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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