Recently had an endocrinology consultant telephone me, telling me sary stories about liothyronine and how it can cause clots in heart tissue and other sccary things. I have not heard this before, and see it as a ruse to get me off my edpensive liothyronine.
Can anyone tell mewhether there is a danger of heart or other problems, I am currently exceedingly well on this mednalongside 150 levothyroxine. I have no heart issues, I am in good health, fairly fit and I am 71 years old female.
Thanks so much everyone reading this
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damehypo
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Thank you so very much for your respons. I am so scared they will 'find' a reason to take me off my liothyronine. I dont do well at all on levothyroxine only - I have ben on these liothyronine pills for a few years, and nev er felt better. I havee been carting things up 26 stairs in the middle of a move...and not breathlss. I am certain they do not prescribe liothyronine in the region I have moved to and this is the reason to get me off it... telling me I will get erratic heart beats, clots and crap like this.
Tell them that since you have been prescribed liothyronine you've been very well and symptom-free , so want your prescription to be the exact dose of T3 that you've been taking for some time and it has restored your life.
Also state you are a member of Healthunlocked Thyroiduk forum who have assisted you in understanding hypothyroidism and how to relieve your unpleasant clinical symptoms.
Also state that if you have any queries on your dose you will contact him.
Thanks Shaws. Thing i he has ent me for blood work, we all know how skewed that is and as useful as a chocolte fireguard. He just kept banging on aboutlow t4 argghhh
I refuse point blank to be taken off my literal life savers. I will not give in to their pressure
Maybe he is unaware that T4 is an inactive hormone and is supposed to convert to T3 and that it is T3 (liothyronine) that the brain and heart as well as the whole body need to function as normal. If on the right dose it removes awful symptoms and the patient wont be searching the internet.
Isn't it surprising that few GPs actually know the purpose of thyroid gland and that thyroid hormones have to enable us to restore our health. For me T4 (awful) but T3 alone restored health.
I have had a lot of run ins with GPs and also endo's. It drives me mad. It was all ok until I decided to move to East Kilbride here they do not as a rule prescribe T3 at all. I am ill and weak on t4 alone it did nothing for me except ag me and make me fat as th thyroid was not being properly medicated, now with the liothyronine (Godsend) I have move dmyself, walk quickly up flights of stairs carrying some heavy boxes, have ben on the go like the dracell bunny for three weeks and I feel great, tired, due to moving nd all the upheaval but not fatigued! I look nothing like I did prior to liothyronine eithr, people cannot believe I am 71.......as I dont act it nor look it. So it sure has restored my health and vitality too my friend.......
Hello - I have been struggling for 3 years. I wasn't diagnosed until Hashimotos had completely destroyed my thyroid, damaged kidneys, amongst many other typical symptoms. My first and most troubling symptom, which still refuses to resolve is shortness of breath. I had tried various combos of t4/t3 and while I think it helped, I felt best doing t3 mono. But it is hard to find literature on this and impossible to find a dr. to help me. Do you have any advice on research to read to educate myself, and how to identify a doc? I am nervous doing this alone. I monitor all my vitals religiously I exercise and eat well. I have done elimination diets and have engaged in long term fasting. I have checked my cortisol and other hormones and everything seems good. I corrected all deficiencies. I am cautious and nervous about t3 mono therapy. After feeling good on it I added t4 back in, because of this fear. I felt terrible again. So I again cut out t4 and am started to feel better. But here I am again without a professional to guide me. Trying to get t3 medication from other countries! My disease progression was rapid. Dr. stated onset was caused by a virus. I started to have symptoms and my health declined rapidly over 3 months, over which I was tested for EVERYTHING except thyroid. I no longer have a functioning thyroid, diagnosis had free t4 0.10 and free t3 at 0.5. When taking combo therapy t3 was at lower end of "healthy range" t4 at upper end tsh lower end of acceptable and I felt unwell. I find little correlation with my blood tests for thyroid and my actual health. Anyone on t3 mono.... help
Recovering with T3: My Journey from Hypothyroidism to Good Health using the T3 Thyroid Hormone (1) (Recovering from Hypothyroidism Series) Paperback – 1 Aug. 2018
This chap used himsel as a guinea pig and tested all kinds of protocols and ended up mono t3. This is his books, Paul was on here for a long time and wanted to get well.
Book avilble on Amazon and is brimming with information and well researched too
Thanks much. I have this one and have appreciated it, I was contemplating grabbing some of his other books as well. Recovering with t3 was enough info to get me started but not enough to instill confidence in myself.
Aw .. you can do this. Most gps and endos have little idea about thryroid function an d hormones.....we live it. We need to be our own hysician and look after our own health and we can together with the help and advice from the very knowledgable folk on here. I so wish you truly well :0)
This is what I thought. Thing is, I know in this region of Scotland they do not prescribe liothyronine soit appears to me it is a ruse to cut costs. I was far from right on t4 alone...he says he is concerned my t4 is low but i do better with a suppresed t4. I told him t4 wasnt even a true thyroid hormone per se but pitiutary one and he got uppity with me. ugh
You hold firm, if they can get it away from you you'll have a devil of a job getting it back and they might learn a thing or two from you 🤗 It's all about re-educating the non believers.... do we have a T3 flag? I feel like waving one 😄
I had a similar discussion with an endo in Scotland, he maintained that all I needed was LT4....completely ignoring the fact that it was nearly the death of me!!
To clarify, T4 IS a thyroid (not a pituitary hormone) ...a storage or prohormone for T3. One which, if all things are equal, is converted to T3
T3 is the active hormone essential to almost every cell in the body in a constant and adequate supply
TSH is a pituitary hormone sometimes mistakenly lumped in with T4 and T3 and referred to as thyroid hormones
The wretched man should know that taking T3 lowers both T4 and TSH
If you are hypothyroid and on T3 alone the body doesn't bother producing very much T4, and may produce none. The more T3 you are on the less T4 will be produced. TSH production drops very low on T3 only as well for many people.
When I was on T3 only my T4 levels got down to under 2 (range 12 - 22), and my TSH was roughly 0.1 i.e. under range.
greygoose takes T3 only and has said that her Free T4 level is zero.
Having read what you say; it could produce more T4 naturally if I wasn't replacing harmones via T3?
Yes, that seems to be true for anyone taking sufficient T3 for their needs and no T4. If you were to reduce your T3 intake significantly, then eventually your thyroid would start producing T4 again. It might take a few weeks though, and if your thyroid wasn't very healthy then it might not produce enough T4 for your needs.
Thank you for that clarification. A thyroid storage hormone to convert, I do not convert ... hence the t3 .... I am going to rite this lotdown and keep it with me for when i go do battle! Really sorry to read you are havig toself source, I didthat for years till I was put on a tril and then stayed on it.
The advantage of self medication is that I'm in charge of my treatment!!!
My GPs now understand what I'm doing and leave me to it....initially one of them thought I was going to kill myself!!
Before an appt I used to make a list of all I wanted to say/ ask otherwise with brain fog etc I was likely to squawk like a demented parrot!!!
So, yes, make a list
You are most likely converting some T4 to T3 but the level of that conversion will determine the amount of T3 you need. This will be reflected in your FT4 and FT3 labs.The higher the differential the poorer the conversion and the greater the need for added T3.
I have just been referred for a full thyroid panel, whatever that means, most times they dont do the t3.........! I have no idea what the range is, it seems to vary by authority
Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients
Vijay Panicker, Ponnusamy Saravanan, Bijay Vaidya, Jonathan Evans, Andrew T. Hattersley, Timothy M. Frayling, Colin M. Dayan
Nhs scotland has a policy that you are entitled to a three month trial of t3 if you unresolved symptoms on montherapy. I am on month 9 as I refuse to be discharged till I am well! Ask gp to refer you to endocrinology. If they don't or endo don't accept the referral as they did my case, write to the health board and raise a complaint! Whereabouts in scotland are you?
You will need to stand your ground and present nhs scotlands guidelines to first your gp surgery then the health board if you don't get a referral to endocrinology. That's how I did it. I documented my symptoms on t4 alone and the improvements on combination therapy then quoted their policy on t3!
I do feel for you, it can be quite the battle but you're doing the right thing sticking to your guns! Just to mention though, I think you mean TSH not T4. Doctors get very upset if TSH is completely suppressed and, to be fair, this is not entirely without cause. If someone is genuinely being way over medicated then it can indeed cause heart problems amongst other things. But all the factors have to be taken into consideration and quality of life is certainly a major factor. I hope you can get this sorted in the best way for you.
Yes I hope I can get it all sorted and keep my life saving liothyronine! Endo really concerned about TSH being almost invisible....hence saying I will likely get accelerated osteoporosis, possibility of stroke (heart clots) and arythmias and saying I am over-replaced. I certainly do not feel over replaced as not speedy or anything, i feel fab and want to stay this way.
I guess the TFT will reveal all and then I will argue MY case.
I hate to say this but I was over prescribed Levo for 20 yrs as I was still symptomatic when on 'correct' dose. Two different consultants told me it was fine.....until suddenly they found out that it wasn't fine and everybody and their brother were on at me to reduce my dose. I myself was just as keen to reduce - my approach is that the less medication I can take the better while still having a decent QoL - but it took me 3 years of reducing at incredibly small increments. Sometime before that I discovered (by actually looking at my test results and reading Thyroid UK) that I wasn't converting the Levo, and had 'classic' test results of suppressed TSH, T4 at the top of the range and T3 at the bottom of the range. My Endo agreed with me and said my test results bore that out but I have to wonder how come nobody every felt it necessary to mention that to me?? At that point I was prescribed Lio in addition to the Levo, which does really help, and both of which I still take.
All of that aside, I am a pretty fit 67 year old (I just got back from the gym) but I do unfortunately also have Atrial Fibrillation (heart arrythmia), which I wouldn't wish on anybody, and osteoporosis. There's no knowing whether either of these conditions are connected to my being over prescribed Levo for so many years but I do feel I must mention it. My heart rate and blood pressure have always been low normal, even when I was being prescribed the highest dose and I never felt 'speedy'.
It's not my intention to alarm you, so please don't take it that way. For myself, I wish I'd been a lot better informed years ago. I choose not to have a completely suppressed TSH but if I can keep it to at least 1 and feel fine that works for me.
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I would suggest your Afib and osteoporosis are to do with low T3 and nothing to do with your low TSH.
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Could be - though I'd been on Lio for years before I developed either of those conditions and my T3 was okay. Or it could be my Coeliac Disease....or chronic stress....or Pfizer Covid vacc (I'm not an anti vaccer but there may be some small correlation between the two that is being further investigated).....or any number of things......or most likely a combination of factors .
My best guess is that the osteo is from coeliac disease and AFib from over exercising + chronic stress but ultimately there's no way of knowing.
But I'm of the mind that anything we put into our body on a daily basis for years or decades has multiple effects. No medication is completely without side effects. And making an informed decision and accepting the possible side effects is our right. But just denying the possibility of there being any risk at all isn't helpful, imo. Not that I'm saying that anyone is proposing that, I was just making a cautionary point.
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Could be.
But there's lots of evidence that suggests low T3 causes osteoporosis and Afib.
Of course it's not - but I would still prefer to not have it completely suppressed if I can do so and still feel well and keep my T3 at a reasonable level. But anyway, I'd been on Lio for years before I developed either of these conditions and my T3 was okay.
High FT3 is only really found in the most part in untreated hyperthyroidism. Similarly for T4/T3 combination. To say that liothyronine causes heart problems is true as in the case above, but only when, not having thyroid hormone resistance, the T4 and/ or T4/T3 combination has left you with FT3 above the healthy range. Perhaps your endocrinologist thinks that anFT3 level in health is not the same as the same value on treatment. Alice-in-Wonderland thinking! There's also the myth that if you took NDT with a T4/T3 ratio of 4/1, the balance is very different from health. But does it matter? It matters not one jot! Taking pure T4 and nothing else requires the body to make T3 up by conversion. It's assumed it will always be capable of achievement which we now know is wrong. The 4/1 ratio of NDT is nowhere harmful so long as FT3 is kept in the reference range.
When 'experts' make statements as yours has done, you are better off without his 'supposed to be expertise'.
When I was first prescribed levothyroxine (TSH was 100) and GP had phoned to tell me that I had no problems. I then had awful severe palpitations - the worst during the night - and, of course it interfered with both my and husband's sleep. I had to sip ice-cold water and wrap a scarf from freezer around neck during most of the night.
The cardiologist had to record and take note of my night-time beats and I was then prescribed beta-blockers.
I eventually stopped levothyroxine and was prescribed T3 (liothyronine). From then on everything in my body calmed down and I felt well too. I am still well and I also have a good sleep.
Liothyronine is a blessing
I am fortunate to now have T3 prescribed and I feel well and am symptom-free.
I hope you can also find a dose that relieves your symptoms.
Thank you very muc for your kind reply. I accept and understand all you say. This endocriminal was telling me i was really low on t4 and even though I told him I am better with a suppressed t4 he starte going on about all the other things. I feel well on this combo and I am staying put if they try and force the issue I will not take it lying down.
Maybe remind the GP that T4 (levothyroxine) is an inactive hormone and should convert to T3 (liothyronine) and it is T3 that is the Active Thyroid Hormone and that the brain and heart have the most T3 receptor cells.
Also there are also more T3s available due to the cost of T3s being lowered
If you open up any and I mean any medication and read the spill and believed it, nobody would ever take anything ever again. This is rubbish T3 has made a lot of people very well.
Your endo is talking rubbish and needs to read the appended paper!!
If your FT3 is within the ref range and you have no symptoms of overstimulation then you are unlikely to be overmedicated....or to drop dead as one GP I saw feared!!
I'm aged 78 currently take 100mcg T3-only daily because I have a form of Thyroid Hormone Resistance.... a recent heart scan showed a perfectly healthy heart.
Used correctly it is safe....
But like all things used in excess to the body's needs it can cause problems.
Don't be persuaded to change your dose for unsubstantiated scare mongering reasons ....if you feel well!
Thank you very much for your reply. I felt it was scaremongery in n attempt to have me taken off the expensiv medicine. I told him I felt really well and was in the middle of moving and carting boxes, but he was banging on about bone thinning, arrythmias and clots in the heart for goodness sake, the lengths these fools will go to.
This includes the myth that 'a suppressed TSH leads to Osteoporosis'
By the way, liothyronine is much cheaper than it used to be. With a private prescription I can get 100 x 20mcg tablets for £60 and as I take 1 tablet a day that works out at 60pence a day. The NHS now can get T3 much cheaper than before, so more people seem to be able to get it.
Suggest you test for the DIO2 genetic mutation which can mean, as in my case, that T4 treatment alone is ineffective. Regenerus Labs arranges it. You can also buy T3 online at reasonable cost so there is a back-stop if the NHS stops providing it.
And one that initially looked possibly of interest, started with this almost unfeasibly high dosing:
Triiodothyronine (liothyronine sodium) (400-500 μg/day for 14 days) was given to six normal subjects. Factor VIII (antihemophilic globulin) activity increased from 109 to 167% (P < 0.05); fibrinogen increased from 344 to 581 mg/100 ml (P < 0.01). To test whether the increases in factor VIII activity and fibrinogen were mediated by beta adrenergic receptors, propranolol (20 mg every 6 hr) was given orally to four other normal subjects in addition to triiodothyronine for 14 days. Factor VIII increased from 100 to 161%; fibrinogen increased from 374 to 564% (P < 0.01). Factor VIII activity did not change in a severe classical hemophiliac made hypermetabolic with triiodothyronine, but it increased from 39 to 82% in a patient with von Willebrand's disease. Triiodothyronine-induced hypermetabolism increased the incorporation of selenomethionine-75Se into plasma fibrinogen. These results suggest that the increases in clotting factor activity during triiodothyronine-induced hypermetabolism reflect an effect of increased protein synthesis rather than enhanced stimulation of beta adrenergic receptors.
Hi Does anyone know if a consultant psychiatrist can prescribe T3 on NHS? Reason I'm asking is i have major depression which is totally treatment resistant re antidepressants. Also have various physical symptoms too many to list. I am currently on a small dose of levothyroxine. After getting advice on my recent thyroid blood work fro.m thyroid expert IMr Robinson I fear I'm not converting enough T4 to T3 . I know from research that T3 can be very effective in treatment resistant depression when it is used in combination with an antidepressant. I am going to ask my psychiatrist on next visit about considering starting me on a trial of T3 but know it's not routinely prescribe d now in UK no doubt due to cost. So again just to repeat can a psychiatrist prescribe T3 in these circumstances when no improvement on T4?
I was given the warning that it can affect your bones. On levothyroxine, I struggled to get out of bed and couldn't function.
Liothyronine has given me back most of my quality of life now but may (or may not) cause problems in the future. And I might be hit by a bus before it does. The endo said that was a fair point 🙂
Would you mind private messaging me the name of the NHS, East Kilbride endo you are referring to? I have an NHS endo appointment in East Kilbride in July. I asked them to swap my appointment to a different Endo from the one they allocated to me for a June first appointment.
I requested the male, so think I am going to see same endo as you, by request. Think the other 2 endos are female, but looks as if there was a vacancy recently.
For the sake of your health, you should have remained in Ayrshire. I paid for a private thyroid scan . It was done, privately, by someone who does scans for Ayrshire healthboard. He said the waiting list in Ayrshire for that was 5 months. I eventually got one in Lanarkshire after 14months!
The fact that you have just moved to East Kilbride, feel well, and are happy with your medication and have an endo appointment already, when I have been waiiting 1 year for a first appointment and have blood results for Central Hypo, which should be urgent, must mean you have been seen purely to remove your expensive T3 medication, as you said.
If they take it down to the money, two can play at that game. If the Endo does not listen to you, just ask how much money would be saved by not giving you Lio, bearing in mind that you would become ill and need other medical services. Say you are worth more than the few quid on his medical budget!
I have been on 100 mcg Levothyroxine and 10 mcg Liothyronine (5 am and 5 pm) for five years and since my TSH is <.02 my Endo has been after me to reduce my T3. Several readers have mentioned that taking T3 can reduce the TSH. This is the first time I’ve heard that. I often have some symptoms of hypothyroidism but know my doctors won’t increase my dose because of the TSH test level.
I tried an experiment and on my own increased my daytime lio to 7.5. Not a good idea as I soon had the shakes and tachycardia events. It seems the band between hypo and hyper is very narrow for me. To top things off I have a genetic marker for poor T4 to T3 conversion but genetic testing is not done here. My results were from a genealogical test.
In my 50s I had RAI that destroyed my thyroid. But sadly the medical community here (Hawaii) doesn’t pay any attention to how that really affects my treatment.
So the reference to 'clots/ causing strokes' is not specific to taking T3 .... it is to do with having a supressed / below range TSH.
I've been warned of exactly the same thing and had GP insist my dose is reduced , and i've only ever taken Levo.. (i was also told that if i didn't lower my levo dose as instructed ...."but You'll Die".. i think he'd run out of intelligent counter-arguments at that point ) .
The clot concern is to do with the TSH level , and their (largely mistaken) belief that low TSH increases the risk of developing Atrial Fibrillation .
A-Fib DOES increase the chance of developing blood clots (in the chamber of the heart which isn't beating properly) ,and of the blood clots then causing a stroke... there's no argument about that.
And when low TSH is accompanied by 'too high' T3 /T4 levels (in genuine hyperthyroidism, with the thyroid continuously making too much T4./T3) ...then it DOES have an increased risk of A Fib .,, but it's the 'too high' T4/T3 that are actually causing the A-Fib , not the low TSH itself.
But in HYPOthyroid patients who are taking thyroid replacement, then a low TSH does not always mean the same thing as it does in HYPERthyroidism .. and this is where the misunderstanding comes about .
There IS a lot of research showing 'low TSH is associated with A Fib' , and in hyperthyroidism (with 'too high' thyroid hormone levels) , that is true .. but that same research then gets used to suggest "Low TSH in any circumstance is associated with A Fib" ..which is not true .
you seem to have been referred to try to get you off T3 (or to 'prove' you need it) , and to be honest that would probably have happened even if you had 'perfect' TSH / fT4 /fT3 levels.
It's not all about the cost (although that is obviously a factor) , in most area's it is policy for anyone who is already on T3 .. refer to endo to trial removing T3 and using levo only .. and only allow them to stay on T3 if the their endo agrees the need for it .
It is partly about cost and partly about following the NHS guideline which 'allow' , but do not really 'support' T3 use (due to lack of evidence of benefit / unknown long term risks of harm) .
These 2 posts contain loads of links to useful evidence / discussion/ explanation on the subject of Low TSH / Risk vs Quality of Life , so you can be better prepared for the inevitable TSH argument :
On a separate subject .. are you aware of how the timing of your last dose T3 / levo affects the fT3/ fT4 result you get ? .. (it's important to understand this fully so you know what's what in case endo asks you to take the last dose of T3 3hrs before the blood test).... if you are not sure about the correct timings to use for last dose Levo and T3 , ask on here .
i am very grateful for all the information and our time and yI am sceptivcour kindness. I will be stopping my meds a full 24 hours before any test and making sure the test is in the morning.
I am always sceptical, for previous docs have wantd me off the t3, and I am not prepared to go backwards into hell instead of forward into life and living. I know them so well, check your bloods and do what they see as appropriate and tell you it is because they cre about you. Hmm Just in case peopl are not aware in Scotland (most areas) they do not prescribe t3 and if you are on it you are one in a million so they just arent used to seeing anyone who has been on it awhile.
The phone consultation was all about scaremongery and I just acte swet and said I am extremely well on my meds, in fact I have just moveed two houses into one, and been carting boxes up 26 stairs (all true) plus the move has bern constant for three weeks. I have energy and stamina not known to be possible prior to my combo meds.......I was fast, lethargic and foggy, I look older than my years too. No more. I am not going 'back' without a damn fight.
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