Meds - Levo 100mcg daily + Liothyronine 5mcg twice daily and felt OK on this, I have been reduced slightly to Levothyroxine 75mcg Mon-Wed-Fri, and Levo 100mcgs the other 4 days plus the Liothyronine 5mcg twice daily but not feeling so good now.
This suggests to me I need Levo increasing back to 100mcgs daily, which I will ask about during next appt with Endo. I'll have new blood results end Dec.
So, my question, for advice please. I take Levo first thing in morning and have done for years. The Liothyronine, I also take morning, with other, and 8pm in evening.
However, I am now not wanting to get up in the mornings, feeling like I just want to go back to bed. Weary, lethargic, brain fog, etc and have only been like this since taking the Liothyronine. I don't seem to remember being like this when I was on NDT (Privately) for the several months before being prescribed Liothyronine (NHS) 6 months ago.
I'm thinking to try the Liothyronine first thing in morning, when I surface, and take the other 5mcg when I go to bed, OR to set alarm for 6 / 7am, take T3 tablet, then take the other at teatime, perhaps???
Can anyone advise, particularly if they've had this / similar situation and solved it by changing the timing of Liothyronine (T3)?
I would appreciate any help, please.
Thank you
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JMN2017
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i recently discovered that taking a T3 dose in the morning with my levo was making me feel bleurgh in the mornings,,, i never felt like starting the day and consequently wasn't getting anything done. I have since moved that dose of T3 to 11.30 am after i've eaten ( but still taking levo first thing and at bedtime) and it has helped , i no longer feel naff at 8/9 am .. and if i do occasionally feel a bit naff in the afternoon it doesn't seem to bother me so much cos i'm already up and about and have already done got something done
It's interesting that you felt 'bleurgh' in the mornings, and sounds similar to myself, until you moved T3 to later in the morning. I don't understand why that would make the difference. It clearly does in your case, though. I feel like that, each morning, before I've taken anything. It didn't used to be the case but certainly is now, and since the last several months.
I'm pleased you've managed to sort it out
I can certainly give your 'method' a try, though, easily enough and can do this tomorrow.
However, I still feel it could be to do with taking the Lio in the evening and wonder if it might be more useful taking early/mid afternoon. I think I might try taking my 2nd dose of the day at around 5pm, and see how I feel. I can only experiment, eh? LOL
i suspect lowering the levo might be part of your issue ... i lowered mine before i added T3 ( based on high fT4 levels , not on symptoms) but have definitely felt more stable / less flaky since i put it back up again .
I think it was lowered because levels were still high, although well within the 'normal' range. I didn't think that tiny drop would make such a difference, to be honest, hence I didn't think it would be a problem. Hopefully, that can be easily sorted by upping the T4 again.
It's the horrible feeling, each morning, that's relatively new to me. I can't think it's related to the drop in Levo but rather the taking of T3, as that's the only thing different in my life/meds.
I'm still hoping someone can recommend me alternative times to take Liothyronine (T3) to, hopefully, stop this morning feeling I'm currently experiencing. It's horrible and the day is gone before I know it!!!
i was really surprised how much my fT4 lowered when adding a small amount of T3 ~ although i shouldn't have been, since the general experience on here is that it does .
i only lowered levo dose by 12.5mcg which would normally have only a slight effect on my (usually high end/ over range ) fT4 levels , however dropping levo by 12.5mcg at the same time as adding 9mcg T3 lowered my fT4 from 91% to 56% ...i've never had an fT4 that low on levo (apart from times when i had deliberately halved the dose for a couple of weeks to get the GP off my back)
LOL So, after lowering your dose for a while, for the GPs benefit, did your prescription not change? I can only assume they continued to let you have the full amount on prescription. Well, if it worked ... LOL
In the past, when GPs have said I need to reduce Levo, I've said I'll make appt to see regular GP to discuss it, but then never made appt. It's always been a battle for me to have enough F4 to feel well. It was another young GP trainee that insisted I need to reduce, so I decided enough was enough and went private. Then I got appt with NHS Endo who agreed to prescribe some T3, probably because I'd felt better on the NDT and showed her the blood results. Obviously, that was enough to prove it was necessary.
The whole thing can be such a nightmare, eh? Why doctors can't believe when we say how we feel ??? LOL
well no they didn't lower it cos i didn't tell them i'd halved the dose to show a lower fT4.... i get private bloods if i want to know what is really going on . I no longer tell them what i'm actually taking unless it suits my purposes cos it's just not worth the effort of arguing with donkeys is it ? .
i'll be damned if i'm going to have some muppet who understands less than me in charge of my engine ... it's like letting your 9 yr old drive the car ~ fine under certain controlled circumstances but only if they are sitting on your knee and your foot is close to the brake.
My prescription is technically 112.5mcg and has been for a few yrs now , but GP evidently couldn't add up at the time , so the actual prescription gives me enough to take 125 if i wanted to.... and they prescribe it as 2x 50mcg a day rather than 1 x 100 cos several yrs ago i told them i feel better if i split levo dose am / bedtime and i kick off whenever anyone tries to change it to 100's to save the NHS £1 ... so i get 50's and more than enough 25's to play with, which is very handy for fiddling around with my dose in small increments.
I see doctors just as suppliers .. deciding what i actually take is my job. it's not too difficult to get them to do what you want once you realise how little they understand about thyroid blood levels/ tests.
I love it. Yes, they are the 'suppliers' but I've never been able to get them to prescribe more than I take, even if in divided doses etc.
I really hate doing the private blood tests. I manage to get blood everywhere but in the bottle. The lancet hurts, of course, but I feel it for days. In fact, I can still feel something hurting, in my finger, from a private test done early this year. It's as if a slither of metal has been left behind and, when I catch it at a particular angle, it still hurts !!!
At least now, I get bloods done 'properly' at the hospital, prior to Endo appts. I realise that won't last, once stable on these meds. LOL
someone has recently invented a less painful method than fingerprick lancet ... a few test companies now offer it .. costs a bit more obviously , and i'm not recommending this testing company at all , just using their webpage to show you how the device works .. the device is called Tasso : everytest.co.uk/wp-content/...
That looks interesting but I bet you feel that needle going in !!! Certainly sounds easier; not sure if more desirable, or not LOL Thanks for this. I didn't know about it. It will be more costly, of course. I'll check the prices, once I get a few mins.
interested to read what you said when you went on Lio because along with horrible waking anxiety I too feel weary, lethargic, brain fog, etc., which has made me wonder, even moreso recently, whether Lio isn't for me. Been on the same dose for around 7yrs but I don't feel I tolerate it well and even though I am not optimal in the range yet I don't even want to try for another increase tbh and thinking of coming off it
Thanks for your reply. Interesting to read you, also, have issues in the mornings. I'm really sorry to hear after 7 yrs, you're still struggling to get things optimal. If Liothyronine isn't suiting you, is there an NHS alternative? I cetainly felt so much better (and better than now) when on NDT, but that was private prescriptions and private blood tests etc so don't really want to have to go down that route, if NHS can achieve my feeling well again. LOL
I can understand you not being keen to try an increase. Would going privately be within your remit? If so, message me if you want details of the prescrbing pharmacist. I was recommended this on here, and admin approved the recommendation. I assume you'd check with admin here first, of course
I hope you get sorted eventually, sooner rather than later, of course.
thanks hon, I really don't know whether it suits me or not tbh because of my many years of anxiety issues anyway. I just don't know anymore with me I really dont
I have been reduced slightly to Levothyroxine 75mcg Mon-Wed-Fri, and Levo 100mcgs the other 4 days plus the Liothyronine 5mcg twice daily but not feeling so good now.
What were actual results and ranges that caused this reduction
when were vitamin levels last tested
Do you always get same brand levothyroxine at each prescription
Same brand T3
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Unfortunately, I didn't make a note of the most recent results as they are available on the Patient Portal (ie online) However, the system is being uipdated and so not accessible for the next few days.
I seem to remember my FT4 was reasonably high, but within range. FT3 was, I think, a bit lower than middle of the range and TSH 2.* Unfortunately, I didn't make a note of the numbers, at the time, and can't access the Portal, at the moment, as it's all being updated.
At the time, when Endo suggest reducing Levo slightly, I could see why, although having been running high, for years, around 28 - 30 (normal range 10.5 - 22.0 pmol/L), maybe higher suits be better.
I'm not sure what relevance but, before I was diagnosed, I was being repeatedly tested for years, complaining of symptoms, before my TSH rose sufficiently for them to decide to treat. Would this suggest, maybe, that my 'original' levels were the 'other' end of the ranges, ie that my body (pre-hypothyroid) was very low TSH, relatively high in range T4. Not sure re T3, of course. I wish I could get hold of the thryroid test results when I first had symptoms, to see what my 'original' optimum levels were!
Regarding vitamins, I take Vit D, to maintain mid-range results, having been found to be deficient years ago. I also take Iron, again to maintain a mid-range level, again as was found to be low. I self-inject B12; Folate is usually well/over top of range
Other vits have been within normal range so not tested often.
Regarding brand of Levothyroxine, I've had various brands and not been aware of issues. Regarding Liothyronine, I was initially dispensed with 20mcg tablets and told to disolve!!! I decided to cut into 1/4, which also meant I had enough to last me a while, luckily, as the Endo hadn't appreciated the GP can't prescribe until stable for 3 months, so that got a bit complicated and lengthy before that was sorted.
I'm now on 5mcg tablets. I'm also wondering if the fillers, or perhaps the coating, may be an issue. I've had issues previously with tablets just 'not working'. One of these was, seemingly, due to fillers. I was in contact with the pharmaceutical company and, after testing, that was the conclusion. So, that's always in the back of my mind. However, the timing of the T3 meds doesn't fit with the change in symptoms, particularly.
I've emailed the Endo's secretary this morning, to update her, in the hope she will tweak things a bit, rather than to wait till end Dec for next appt.
Thanks for the tip re T3 regarding blood testing. Yes, always have bloods for thyroid done before 8.30am (makes parking easier too LOL ) apart from odd occasions and can definitely see how the results can differ, when tested during afternoons! I have to admit, I've taken T3 at 8pm the night prior to blood test at around 8.15am but, that's approx 12 hrs so shouldn't have affected results, I don't think.
Unfortunately, I didn't make a note of the numbers, at the time, and can't access the Portal, at the moment, as it's all being updated.
Come back with new post once you get actual results
Regarding brand of Levothyroxine, I've had various brands and not been aware of issues. Regarding Liothyronine, I was initially dispensed with 20mcg tablets
I'm now on 5mcg tablets. I'm also wondering if the fillers, or perhaps the coating, may be an issue.
Which brands Levo and T3
75mcg tablets Levo ….often Teva
Teva upsets many people
5mcg tablets T3 will be either Sigma Pharma or Morningside.
Here are the brands I have in stock at the moment.
Levothyroxine 25mcg - currently taking MercuryPharma; Next batch is Crescent ;
Levothyroxine 50mcg - Accord;
Levothyroxine 75 mcg - Currently taking 50 mcg + 25 mcg; Next batch is Crescent
Levothyroxine 100 mcg - Currently taking Accord; Almus new batch (Usually this brand)
Liothyronine 5 mcg - Currently and new batch - Morningside. Started with cutting 20 mcg tablets, loose in bottle, so don't know the brand.
Regarding Teva, I think I've had Levo in that brand previously, with no apparent issues. However, I did have problems with one of the 'Z' sleeping tablets, several years ago, when they just didn't do anything for me, even though other brands had been fine. No longer taking sedation. I can understand how different people can have issues with particular brands. My issue, then, was put down to the fillers preventing the drug being absorbed
Started with cutting 20 mcg tablets, loose in bottle, so don't know the brand.
Easy enough to find out from the markings.
That's why I put the markings for all UK tablets in my UK medicines document. And if you tell us what the markings are we can probably identify any product.
Thanks. I don't have a complete tablet now, nor the bottle they came in (white plastic) but I do remember they had a score across one side. I don't believe there were any other markings.
They were approx 2.5 - 3 mm diameter, white, round / flat tablet
I doubt that is enough for you to go on, though.
Out of interest (on a different tangent) is there any difference between paracetamol 500mgs tabs and Metformin 500gm tabs? I've looked closely, with both next to one another, but cannot tell them apart. I thought every tablet should be able to be identifiable, in some way or other, by one who is experienced in this.
I do not have the diameters of many so that isn't much help. (If anyone can measure them and let me know, please do!)
No UK liothyronine tablet has a score on one side and nothing on the other. They all have something more distinguishing.
I agree that all tablets should be distinct. (Even if it is not a strict requirement.) But there are many paracetamol tablets and, I think, several metformin tablets. So answering your question isn't straightforward!
Well, I think I've solved my issue I am now taking my 2nd dose of the day at lunchtime, instead of 8pm and, for the past 3 days have woken up, and able to get up feeling so much better.
I did wonder about splitting the evening tablet (5mcg Liothyronine) into two, which I may try at some point but, currently, I'm feeling OK all day, taking it 12md/very early afternoon.
Needless to say, I'm very grateful to you all for all your help.
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