Hi guys, I’m new to this site so please bear with me as confusing... had all thyroid took away over two years ago in two separate operations due to thyroid Cancer... found on an incidental scan on neck but said it was a 4cm cyst for 10 months then decided was Cancer... during this time had normal thyroid blood levels but was losing lots weight (4 stone) and more fatigued etc... have had M.E/CFS/Fibromyalgia for several years so put down to that but knew something wasn’t right!
Anyway was put on 200 mcg Levothyroxine straight away after second op, then reduced every 3 months... for 15 months been going round in circles taking 125 for three months (too low) then 150 for 3 month (too high) then tried alternating daily can’t seem to stabilise, tolerate 125 little bit better but still feel awful, fatigue, terrible headaches/migraines/muscle weakness/pains, weight gain etc etc so drs finally started me on 10mcg T3 (3 days ago) and reduced Levothyroxine to 100, couldn’t do it earlier apparently due to Coronavirus as need more monitoring... what I’m wondering guys after this saga is how long will t3 take to work? it like Levothyroxine taking 6/8 wks and wondering if anyone had good success with this combination and made them feel better, I am at my wits end, couldn’t tell you how much it has worsened my mental health!
Sorry for essay peeps... and listening!
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Blanche1960
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T3 has a short half life so will take effect within a few hours although your body will continue to respond for longer. I don't take T3 but I've read a lot of accounts on here that indicate it can take a little while adjusting ratio of T3 to T4 to find what works best for you. Hopefully someone knowledgeable will respond soon because I've read its better to start on 5mcgs T3 and work upwards to the full dose that you've been prescribed but this is not an area of my knowledge.
I'm sorry you lost your thyroid due to cancer, I also had cancer. I do know that it's very important to maintain excellent vitamin levels os B12, folate, ferritin and vit D. Have you had yours tested?
Thanks for your reply, had B12 folate etc tested about 18 months ago, folate was low prescribed folic acid for few months, but never tested after that! Not got good relationship with Gps... terrified of asking /speaking to them, so much going on but will pluck up courage! Thankyou so much!
I’m so sorry to hear your suffering. T3 has a short life 3-4 hours. If you are planning to go T3 only it will take 8-10 weeks to clear the build up of t4 in your system. Start low, 5mcg and monitor blood pressure and pulse. Paul Robinson’s thyroid books are worth a read. T3 may uncover other issues low/high cortisol and low iron which you will have to work with. T3 been a life saver for me, I have ME/CFS and helps me function and got rid of brain fog. Good luck x
Sorry you have M.E/CFS as well as thyroid problems, a very similar, so glad T3 helped you especially with brain fog, hopefully help mine too, it’s terrible! Have had cortisol tested, was ok! Don’t think they going down total T3 and stopping t4, just introducing it to see if have better quality of life and feel bit better! Thanks for the advice take care!
It took me a while to find my right dosing on combo T4/T3 and eventually switched to desiccated thyroid hormone.
Do you know your free T4 and free T3 levels? It can be difficult to tell if symptoms are from too little or too much Levo - if you’re still getting too much adding T3 likely won’t help a lot.
Also when starting T3 we need to start small, work up and split the dose throughout the day. T3 effect usually peaks around 2 hours after taking and wears off after 4-6 hours which is why we don’t take it all at once. Starting with 2.5 mcg (half a 5 mcg tablet) in the am and another early in the afternoon is usually a good way to start and see how it affects you, then increase to 5 mcg in the morning, etc.
Once we lose our thyroid TSH is pretty irrelevant for adjusting doses - must have free T4 and free T3 tested. Though it is important to keep TSH low to help prevent recurrence of thyroid cancer - which many docs use as an excuse to overdose T4 instead of properly using T3 to suppress TSH.
Hi there thanks for the advice I’ve got 20mcg tablets which I have to chop in half, so tiny so not sure can quarter them but will have a go! Endocrinologist rang me in March and said had increase T4 to 150 (before t3) as TSH levels low and risk of cancer coming back, cannot tolerate 150 as kept telling them before when on that dose but obviously was scared into doing it! Last bloods in July ok had come back down so got reduced down to 125 but got symptoms to think it was too low, but introduced T3 without any new blood tests so not sure... sorry don’t know what my blood levels are, Dr once tried explaining but all seems very complicated and confusing, blaming the brain fog ha ha!
Well, yes, when my thyroid totally gave up my cognitive functions were severely compromised. I am dyslexic anyway, and this additional cloud slowly swallowed me up and I was not able to read. process, or think clearly until I managed to force the issue with my doctor, and was given an increase my thyroid hormone medication.
I was still only on T4 Levothyroxine but at a higher dose I was able to cope better despite my TSH having all but disappeared. I then asked for a trial of T3 as this was the obvious cause of my health issues as my private blood tests showed my T3 at just 25% through the range whilst my T4 was at 80% : I was refused a trial of T3 by the hospital and referred to as a conundrum by my doctor so I then purchased T3 for myself, gave myself a trial, and my health improved and I am now self medicating and staying away from the doctors.
The thyroid is a major gland, the body's engine, and regulates your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism, and the brain needs a large proportion of T3 to function.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 plus trace elements of T1. T2 and calcitonin.
Levothyroxine is a storage hormone and your body needs to be able to convert this into T3 which is the active hormone that the body runs on and T3 is said to be about 4 times more powerful than T4, and it's efficacy, for me, was pretty much immediate.
No thyroid hormone works well unless your core strength is in top condition so it's also important to maintain at good levels your ferritin, folate, B12 and vitamin D : these may well be in the " range " and not qualify for a prescription, but we do need these nutrients at optimal levels as you will see as you read other answers to peoples post on this amazing forum.
If you can't action the vitamins and minerals through your medical team there are private companies who offer this service on the Thyroid uk website, the charity who support this forum where we all help and learn from each other.
Now you are on a T3/T4 combo you should find your wellbeing slowly improving - it's a fine balance and you may need several dose adjustments of both Levothyroxine - T4 - and Liothyronine - T3 - as generally, most people feel well when both these vital thyroid hormones are in the upper quadrant of their relevant ranges.
P.S. I'm with Graves Disease and had RAI thyroid ablation in 2005 : ultimately my thyroid was burnt out and disabled, obliterated in situ and I do believe if you carry a surgery scar, you are treated more kindly treated than if you drank down a toxic substance and " look " as though you haven't had an operation or medical procedure.
I now manage lingering Graves, thyroid eye disease and hypothyroidism.
Hi sorry I thought I had replied earlier, just getting used to this site! Thank you for all this helpful information! Sorry you been through so much...totally understand where you coming from with the scar thing... have invisible disability too and people just don’t get it... broken leg, scars etc... yes!! Glad T3 worked for you fingers crossed will help me too... going to split the dose as advised by few lovely people on here, will contact Thyroid UK for private testing too!
Thyroids are difficult beasts. It takes a lot of time (and patience) to get the levels right, and everyone responds differently to thyroid meds.
Can you treat yourself to full thyroid blood tests? - that means TSH, free T4, free T3, all thyroid antibodies and key nutrients - ferritin, folate, vit D and B12? - it's highly unlikely the NHS will do all the tests you need, but you will see LOTS of posts here about private testing, some have discounts through Thyroid UK. SlowDragon is very good at summarising the available tests and will hopefully pop up in a bit
You have probably only had minimal testing before - and that really isn't enough. You need the free T4 and free T3 to show how much thyroid hormone is swimming around in your body. T4 is the inactive thyroid hormone which converts into T3, which is needed in every cell of your body (with LOTS needed in the brain for example). The fact that you are being given lio (T3 meds) usually indicate that you - like me - are a "poor converter". You are likely to feel best when the "frees" are in the top third or higher of the relevant reference range. You need your nutrients testing because all too often they are too low (so that you need to supplement) and your thyroid meds work best when the nutrients are good
Whenever you have a blood test [always get an early morning, fasting test with a 24 hour gap from your previous levo and 8 - 12 hours from lio] please make sure you get your actual results - and the lab ranges, which vary from lab to lab. Post them here and the lovely people will help you understand them. Please don't let the GP fob you off with meaningless guff like "normal" "in range" or "getting there" - you are aiming for "optimal"
If all the jargon is overwhelming, please look at the Thyroid UK site and helvella 's excellent glossary [saved as a "pinned post"]
Aw thanks so much for all your advice, yeah so confusing, been told levels at hospital couple times but mean nothing, feel brain dead most of time these days! They put me on T3 as well as T 4 to see if feel any better and some quality of life, like you said affects everything! Other kind people on here mentioned about getting vits etc tested so will look into this as well as the other tests! Might ask thyroid nurse at hospital to send me blood results if she will to compare!
Thanks again another lovely kind person on this site!
We're fortunate that T3 can work quite quickly as it doesn't need to be converted as T4 does (i.e. into T3). T3 is the active thyroid hormone and T4 inactive. However a test for FT4 and FT3 (free) gives more information of what's circulating in the blood.
Yes bloods will need testing 6-8 weeks after each dose (or brand) change in levothyroxine or T3
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially after Graves’ disease
What vitamin supplements are you currently taking?
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last 5mcg of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hi there Thankyou so much will look into new blood tests privately! Taking Magnesuim and vitamin D supplements just normal amounts, just booked for a B12 injection too! Last time had levels checked was about 18 months ago and was given folic acid for 3 months and told to buy Vit D
Recommend you get vitamins tested at least annually and ideally would always get vitamins optimal before starting T3
Did you test before booking B12 injection?
Low folate
With B12 injections and for low folate, it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS, as biotin can falsely affect test results
Thanks, yep take T4/T3 in a morning and take vitamins etc at night, take tramadol for pain 2 hours after T4/T3! Will try the Vit D spray and vitamins with K2 mk7
No but I am going to try this, noticed this wk a dip few hours after T3 but having debilitating constant headaches/face pain every day as well... but scared to try any other pain meds, (have tramadol but doesn’t touch pain) dr wanted to put me on amitriptyline and antidepressants again but trying desperately to feel better on thyroid meds especially with adding T3 before throwing anything in mix, I’m so sensitive to all medication, maybe cos of ME/CFS seems to be a common problem! Thanks for replying x
I take my high doses of vitamin D (10,000 IU at present, since trying to improve blood level to over 60 ng/ml), along with co-factors of Vitamin K2-MK7, magnesium, and zinc after dinner. I take my T4 and T3 first thing in the morning and wait an hour before eating or taking other meds.
Thankyou, I will try and increase Vitamin D, going to try the vitamin K2-MK7 as mentioned by few other helpful people on here! take T4 and T3 first thing too! Only been taking T3 for about a week but really pinning hopes on it making me feel better!
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Which brand of levothyroxine are you currently taking?
Which brand of T3?
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
T3 - many people find splitting dose into 2 or 3 doses per day works best. 2 doses roughly 12 hours apart. 3 doses roughly 8 hours apart
Currently as only on 10mcg....2 doses at 12 hour gap
If, after next blood test, dose is increased by 5mcg, trying 3 x 5mcg doses (7am, 3pm and 11pm or similar)
Some people find it better to take T3 all in one go
Every person is different.
It’s a case of experimentation on what works best for you
Frequently endocrinologist reduce levothyroxine too much and Ft4 drops too low
So keep an eye on both Ft4 and Ft3 result at next test. You may need to increase levothyroxine or T3 (never increase both at once)
Even on T3, we often need to fine tune
Obviously all four vitamins need to be optimal too
Hi slow dragon Thankyou for your advice! I’m currently taking Teva T4 just reduced down from 125 to 100 and introduced 10mcg T3 to try and make me feel better, quality of life etc blood levels were ok couple months ago but didn’t check them last wk when stated in this dose!
The brand issue has been a nightmare as my chemist changes brands all the time, checked with big chains too and there’s varies, sometimes had 3 different brands when was on 175mcg then month after different again, I could tell the difference as sensitive to most meds, but was told it didn’t matter what brand, and there’s so much going on couldn’t argue it, but after having night terrors etc the last twice I changed them, finally asked dr who said can make 10 % difference to dose on changing brands, If only I had asked two years before!!! Never mind, anyway dr said lot people better on TIVA which I’ve badgered pharmacy to order these in for me, but sounds like some people don’t get on with TIVA so not sure what to do!
Thanks again sorry just getting used to site, you asked what brand T3 was... it’s Mercury Pharm from Cancer hospital... hoping they don’t change their suppliers too! Think I will change from Tevo too, know my local pharmacy just ordered it in for me with dr saying lot people get on with it, but sure felt worse since changing 3 wks ago, so hard to tell as feel rotten all the time!
Thanks for listening been at my wits end with depression/suicidal thoughts!
I had thyroidectomy for cancer 4 yrs ago and Im on 100mcg (T4) and 10mcg (T3) My T3 worked quick to improve my low mood as for my other issues (weight) absolutely no help ... but we are all different and 10mcg T3 is not large dose.
Hi Thankyou for replying, sorry you’ve been through it too... but glad this dose helping you... hopefully help for me too with mood, migraines and muscle weakness/pain etc... not bothered too much about weight at the moment just want to feel lot better and get to a stable dose of meds, lost count of how many times it’s been changed over last two and half years! Never mind keep soldering on!
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