Bit of a long story sorry but I just need a moan with others who undestand. I restarted Liothyronine Jan 23 on nhs but my consultant will not endorse any increase whatsoever. I am just so tired most days it hurts, can't shift my weight unless I starve and unfortunately I don't sleep well so that doesn't help I know. I currently take 75mcg levo and 10mcg lio, I have done for 12 months now. Recent private bloods taken 23.4.24, fasting, 24hr post levo and 10hr post lio as suggested here.
Tsh 0.03 (0.27-4.2) -6.11%
Ft3 4.8 (3.1-6.8) 45.95%
Ft4 15 (12-22) 30%
I had routine bloods by gp last week at 2pm, didn't think they would recheck tsh so obviously had eaten and taken meds as usual at 06.00. Results were surprisingly similar but slightly different ranges, I can't get the calculator to work % out this evening sorry.
Tsh 0.03 (0.3-4.20)
Ft3 4.6 (3.1-6.8)
Ft4 16.9 (11-22)
I really feel I could increase either levo or lio, don't care which but endo flatly refused yet again. In her letter January I don't know how she got my equivalent dose to 150mcg at all, see attached. Would a private endo accept a suppressed tsh? I thought it was often low when on lio. Happy to retry private but obviously would prefer to continue prescription nhs, I know I can't be under 2 consultants at the same time.
Thank you for reading, I just needed a moan I and don't expect an answer but any suggestions appreciated.
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Baggiesfan
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I can empathise, having extremely similar results. Can you make absolutely sure you make the most of your current dose. Helvella recently posted that taking thyroid meds with a sip rather than a full glass of water improved absorption.
You could try taking meds at night as some people find that too improves absorption. Of course, take well after and before food, vitamins, minerals and other meds.
Make sure you are optimal in vit D, B9, B12, ferritin.
And if this does help, make sure endo doesn’t decrease dose!
Thank you beh1, yes I do only take with a sip of water, I had read Helvella's post too. My ferritin is usually raised and vit D at top of range, I do supplement. Don't take compound B vits as again I think they're ok, haven't checked this year though. There's no way I'll decrease, I had to fight hard to get her to increase my levo from 50mcg to 75mcg. I haven't tried taking at night as I take magnesium supplement then though don't know if that helps.
I take a similar dose with similar blood work (my TSH is 0.01). A poster on here recommended I take collagen for joint and ligament pain and it has really helped me lose half a stone too. I just get the most popular powder from Amazon but there’s a kind for vegetarians too.
I was reading recently on an nhs site that liothyronine has a detrimental affect on mood which was ironic as I was given it for terrible depression and it worked!
There’s a lot of misinformation out there. Listen to your own body.
Thanks, yes her maths leaves a lot to be desired but I really couldn't be ar**d to argue with her, she's so full of herself. Your tsh is lower than mine, are you with an endo or self medicate if you don't mind me asking? I too found my mood greatly improved when I started T3, which was great as being under medicated and so unwell was part reason I split with my husband but heho, all for the best in the long run.Never tried collagen, definately worth a try thanks. Do you know the brand please?
I am under an endo. She seems happy with my numbers. I am prescribed 75/10 like you but take a tiny bit less liothyronine a couple of days as otherwise my heart rate rises too much. I do suffer from being cold though.
I’m not sure we are allowed to mention brands on here but I take Wellgard pure collagen. I do feel better for it.
Thank you glad it helps you, I'll try it.I wonder if I feel worse today as I've been switched back to Roma capsules. I started with them then because of cost apparently the QE switched back to Sigmapharm and I felt rough then but eventually settled. Apparently Roma are cheaper now so back on them we go.
Thanks, I have heard that about Roma, might just be swapping again that's knocked me off balance more than usual. I used to get 20mcg private from Roseway via a private endo and was quite reasonable then, cutting them up was ok but nhs don't like you doing that as they say it's not accurate though I don't agree as it evens out.
I get 20mcg tablets on NHS and cut into 4 x 5mcg per day ….the 1/4’s often aren’t equal…..but as I take 20mcg per day it’s a fixed daily amount…..mopping up any crumbs with damp finger
Strange that it’s been written that it has a detrimental effect when T3 is a well-known treatment (albeit probably much underused treatment) for depression.
I think we’re living in an age of deliberate misinformation.
Thanks, yes I have read it but I'm not brave enough to self medicate and her gp must be my endo's twin. It's her opinion or nothing but as she prescribes she has me over a barrel. I'm worried I'll get it wrong, I have no one to support me and fear being taken into hospital if it's not on my records. My daughter just rolls her eyes if I mention thyroid, I really hope she never has this struggle. I might ask for recommendations for a private endo in a separate post but the last one was not great for me despite others saying he was. I know pm only.
It’s a nightmare. I don’t know what the heck we’re supposed to do when endos and GPs are so ignorant about how TSH and thyroid replacement hormone actually works.
And of course, friends and family think we’re total mavericks for ignoring the advice of these lauded health professionals, even when we explain in detail why we think they’re wrong. Because in my experience, they don’t want to hear our explanations.
Your endo is wrong on the equivalency. 10mcg of liothyronine is said to be the equivalent of 3-4 times the same amount of levothyroxine.
So at most, 10mcg T3 is equivalent to 40mcg. 75 + 40 = 115mcg levo equivalent.
But for some, 10mcg T3 is only equivalent to 30mcg of levo. 75 + 30 = 105mcg levo equivalent.
If your endo had done the right sums, she wouldn’t have found you to be over medicated (although you prove the theory that you need what you need, because I can see wiggle room for an increase in dosage).
Thank you, yes I think I'll email her, jimh111 suggested similar but I doubt she'll budge. To be fair she has phoned me previously when I contacted her but she still wouldn't endorse any increase, still at least it might make her realise she got it wrong.
Hi Baggiesfan: Just wanted to give you some support with regards to your thyroid journey. Wein the same boat! My four sons discusses me with each other and labels me as a hypochondriac. I dare not mention the word “thyroid” to any of them. They too roll their eyes and tells me to stop concentrating on my “condition” and get on with my life. I had full thyroidectomy 7 years ago and still struggle to regulate my dose even even with a suppressed tsh. If they fail to be emphatic, then we don’t need their support. We’re blessed to be connected with this wonderful forum and is able to get all the support we need from these wonderful and knowledgeable people. Just wanted you to know that you’re not alone.
Good luck on your journey to regaining good thyroid health. Continue to advocate for your health.
Thank you Rosebud for your support. Yes everyone here is understanding as we're all on a similar but individual journey, many are very knowledgeable and I have learnt so much, wish I knew as much when I was nursing, I could have helped much more I feel. I have 2 sons and a daughter, all think I'm a raving hypochondriac too, in fact I'm sure I'm a heartsink at the gp's too so try to avoid nowadays as I'm sure I'm more knowledgeable about my thyroid than they are. I received very little information if any during my nurse training and I know the doctors training is pitiful, if you're in the guidelines that's it you're sorted. I wonder if my bra and shoes would fit them as I'm an average sort of woman, bit bonkers but heho.😂
Hi Baggi. : I like your shoe/bra analogy. I don’t laugh a lot these days but I had a good one reading your response. Strange enough, I worked as an icu nurse for over 25 years and knew very little about thyroid disease. I had to take an early retirement at age 57 when I started feeling unwell. Doctors weren’t able to connect the dots, so I just packed it in. My then G.P diagnosed multiple nodules on my thyroid and did nothing about it. I had ultrasound and was told they were too small to cause any harm. I foolishly carried on with my life although I had many symptoms. Five years into my retirement I was diagnosed with papillary cancer. I had enough time then to do research, so I fought to have full thyroid panel, more ultrasound, needle biopsy. That’s how I was able to get diagnosed. By then I had lost half of the hair on my head, all my eyebrows, all the hair on my leg and and armpits. ( don’t miss them). So total thyroidectomy done in 2017 and haven’t been well since, and ended up with laryngeal nerve damage, now struggling with LPR. I fought to be put on NDT and have seen some improvement. Would have been better if my ignorant Endo isn’t so obsessed with with my suppressed tsh. So the struggle goes on and each visit is a fight. My improvement began only after I found this wonderful forum. I’m now confident in advocating for my health, but still a long way to go. I’m on my own with the fight since my children and husband are afraid of the word “thyroid”. What a travesty! 🥲 Let’s keep on fighting for our health. 🙏🏻 Off to bed now, it’s 3:30 here in Canada and I’m still awake. Sleep issues is one of my many lingering symptoms. I do hope you will get your doses sorted soon! Take care !!
Hi Rosebud1955, I was born 1956. Hope you've managed to sleep a little, I'm usually awake till 3.30 too. You have had a rough journey so sending hugs to you. Seems worldwide this lack of medical care for thyroid and also sometimes poor support from our nearest and dearest. It's such a hidden and poorly treated disease, many just think take a little tablet for life and you'll be as good as ever including those who have sworn to do no harm. Thank goodness for the support and education of this lovely group, helping us not to feel so alone or isolated x
I must try that too, I did say about my bra once to a doctor and asked if it would fit her as I'm in the normal range, the look I got was she was not amused. 🤣
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Your equivalent dose is 105 mcg levothyroxine not 150. Liothyronine is 3x as potent as levothyroxine as demonstrated in this study onlinelibrary.wiley.com/doi... . Don't worry if you're not into medical research you can just read the Conclusion.Leaving you for a year is heartless. I'd be tempted to write a cheeky letter to her pointing out you are on the equivalent of 105 mcg not 150 - did she get the two digits transposed?
You know I just might email her but she worked it out in front of me with a student present so I think must be me. I'm a retired nurse prescriber and yes I do like looking up research so will read it tomorrow but she wouldn't look at anything I took in to back myself up initially but as she agreed to a T3 trial I gave up. It's hard when you feel unwell to try to take them on isn't it?
Thank you and no worries at all, yes I'm trying to be fair and respect her training and expertise. I'm really much better with T3 than T4 only so don't want to jeopardise my trial on NHS, I just want a little more 😊
You may have to self medicate if you decide you are banging your head against the dark closet’s walls of NHS ignorance and want to turn and escape through the door of self reliance.
You can buy T3 privately (private message for sources) and check your levels every couple of months through Monitor My Health or similar to make sure you are not over or under dosing. That’s what I have done for years. Others on the forum have also.
All of the info I’ve seen on this forum talks about TSH being suppressed when using T3 and that there are many studies of TSH >/= 0.04 suggesting this is quite safe. I will try to find the link as this would be useful for you to use with your endo.
Thank you, that would be great and yes that's what I thought too. Only research I can find is to be concerned or worried with suppressed tsh if you are hyperthyroidism. I was hyper once, ended up with rai in 2011 and I am definitely not hyper now. I said this to my endo and she said there's lots of research out there to say it's dangerous, I asked where and she said I must be looking in the wrong place, she couldn't point me where to find it.
Re reading this link now and tattybogle may have some clarification about it. These findings were with T4 mini therapy rather than T3/T4 combination - but perhaps the conclusions still apply?
the stuff i have which relates to TSH on T3/Levo combo , is in the first reply to that post....... ( healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-....)
and note, the rest of that reply is continued MUCH further down that post.
p.s the best post for showing TSH <0.04 is ok is this one :healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
I'm on 162.5 mcg levothyroxine and 25 mcg liothyronine per day and my NHS endocrinologist tried to persuade me to lower my liothyronine to 20 mcg but since he won't prescribe it for me and I buy it myself, I don't have tablets that I can use to make up a dose of 20 mcg (I have 50 mcg tablets) so I haven't lowered it. My TSH is suppressed but my T4 and T3 are within range (at the top end of course). I mention this as it shows you that some of them are willing to accept quite a high dose (much higher than yours) and that if you self-medicate you can do whatever you want anyway. Don't waste your life feeling like sh** because of an ignorant doctor's opinion who doesn't have to live your life. In 20 years medicine will catch up, are you willing to wait that long?
You're right Zazbag, I'll have to be brave and add a little in myself as I get it nhs, im scared of getting it wrong and feeling worse again but I won't know till I try.Do you think medicine will catch up in 20 years? I somehow doubt it but hopefully yes for my children and grandchildren. I doubt I'll wait that long, I'll be 87 by then if I'm lucky enough to live that long 😊
Your blood test results are abysmal. You have a lot of scope to increase your dose before you'd be even close to over the normal range. You have to increase very slowly and wait 6–8 weeks between each increase before increasing again. Pay attention to how you feel and also your heart rate/blood pressure, and make sure y you get your bloods done to monitor your T3 and T4 levels. There is research coming out showing that T3 is necessary for a significant minority of patients, and that dosing should be based on T3 and T4 levels, not TSH. At some point this should make its way into mainstream thinking, but doctors are about 20 years behind new research and ways of thinking. Don't waste anymore of your life.
Thank you, I do get my own blood tests so I can follow guidelines on here and have consistent results. I hoped the endo would agree I could increase but as she repeatedly tells me she doesn't want tsh below 0.1 no matter how much I try to say I don't have a thyroid to stimulate so it's pointless. As many say I think I'm going to have to slowly add in more, test then see how I feel and where to go from there. Really appreciate everyone's support, I needed it as thought I am just slowly deteriorating and I'm not ready for that yet x
I add a little levo extra myself. If you are able to order your levo 5-7 days early then it would make up for the extra. Why not try taking 100 on 3 days and 75 on 4? Then if the blood results are ok next time (as in not over range FT4 and FT3) and you feel better, just tell them what you’ve done. At the end of the day it’s your body, your life, and you are just trying to live it as best you can.
You could get a consultation with Roseway prescribing pharmacist. Then go back to taking Thybon Henning 20mcg and cut them like you used to.
It looks to me like you are under medicated for levo and T3. If my TSH was 0.03 my endo would be happier. Mine is 0.01 and if it goes up to 0.02 I feel very under medicated. Some of us just have lower TSH with taking T3. Unfortunately it does affect how we get prescribed.
Thank you Lovecake, yes I think this might be the way forward, I just feel a little bit extra, not a lot would hopefully raise my T3 and T4 and help overall.
You can purchase your own T3 online Tiromel 25mcg. I am prescribed T3 Sanofi here in France when I require more for a top up. The cost for 200 tablets was £46. You can split these with a craft knife.
I often wonder if the slight increased risk could be down to years of under medication?Pre thyroid issues I exercised regularly, which helps heart health & bone density. Since the woeful treatment I've received, at the hands of the NHS, I've sat on my backside doing nothing & carrying excess weight.
My partner (no thyroid issues) has slight bone loss he got a prescription for D3 & calcium. I have slight bone loss and got a lecture, threats and removal of half my T4 when I refused to stop taking T3.
Blood pressure up a bit? Could it be to do with my fat belly and sedentary lifestyle? No, it's because I take T3.
You're right there but as my grown up kids say, I can't blame my thyroid for everything. I do for a lot because I wasn't like this before. I too have had to become more sedentary, too tired to do as I used to and yes to the belly fat too 😪
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