I have recently been referred to another endocrinologist after having not been seen by one since my total thyroidectomy over a year ago, and am hoping that they take me seriously when I tell them that I still don't feel very well, even with my TSH currently at 4.0 (I don't currently have any of my other results...) I am just wondering though, for those of you who are on Liothyronine, what was it that made your endocrinologist cave and agree to prescribe it to you? Did you have to fight for it? Do you feel any better on it? I'm just wondering if my case is 'severe' enough for them to even consider me, given how difficult it is to get prescribed now...I just want my life back.
How did you get prescribed T3?: I have recently... - Thyroid UK
On levothyroxine our tsh should be down nearer to 1 if we are on an adequate dose.
It took 4 years for me adjusting doses to demonstrate to my endo that levo alone was not working. By that time my ft4 was 60% through range and my Ft3 16%. We also ensured that my vitamin levels were good.
I was given a trial of lio and levo combo for 1 year as the endo reckoned it would take that long to stabilise.
TSH alone is not enough to show the need for liothyronine. You need to have results for ft4 and Ft3 as well. These results should be several sets over a period of time. Also vitamin levels need to be good for levo and lio to work well.
Thank you for sharing your experience. My GP surgery is generally pretty good at getting T4 and T3 readings as well as TSH, but it just so happens that the last time I had a blood test there, they only tested my TSH. I have been in two minds about getting a private blood test during these strange times, as I don't want to be blown off over the telephone by a doctor for having gotten a private test on my own, since it would be much harder to get another telephone appointment if they don't like what I'm telling them, than if I were able to see someone in person.
GPs are unable to prescribe T3. An NHS endocrinologist has to prescribe it in the first instance. Often this is on a 3 month trial. Thereafter if they are happy with the trial they will instruct the GP to continue to prescribe.
If you live in Scotland the Scottish Government has agreed that T3 should be available to those who would benefit. This does not mean that it is readily prescribed or that it is recognised as standard procedure - it is still difficult to get a trial.
I am currently waiting to be seen by/ have a telephone consultation with an endocrinologist for this reason. My biggest worry isn't necessarily that they don't give me the T3, but rather that they send me away after having done nothing at all for me. If an increase in Levo would help, then I'd be more than happy to do that instead, but even my old endo (who doesn't seem to want to see me anymore...) seems to suspect that I have an issue absorbing Levothyroxine alone.
First step is to get dose of levothyroxine increased by 25mcg
TSH is far too high for someone on levothyroxine
What was reason for TT?
How much levothyroxine are you currently taking?
Do you always get same brand of levothyroxine?
Getting FULL thyroid and vitamin testing 6-8 weeks after dose increase
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 with Graves’ disease or Hashimoto’s
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
Medichecks Thyroid plus ultra vitamin
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
You may need more than one dose increase in levothyroxine
Come back with new post once you get results
Meanwhile email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
Though ...at this stage you are nowhere near even knowing if you will need it
Before even considering adding T3 we need levothyroxine optimal, all four vitamins tested and supplement to bring to optimal and, if Graves or Hashimoto’s, frequently strictly gluten free diet is essential.....before considering T3
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
I asked for T3 in 2002 and was outright refused. So I located some from abroad and took it for a few months. I was much much better so I went to my doctor and told him what I had done. He was horrified and agreed to prescribe it in order to stop me importing it. However this was years ago and its all been moved over to the endocrinologists now.
What you could do is check all your vitamins and minerals are at top end of ranges, particularly folate, B12, D3 and ferritin.
What was the reason for your thyroidectomy? If it was cancer then its recognised that the tsh needs to stay low ( 4 is high) and if it is because of hyperthyroidism, then you will not be very sensitive to T3 and well need some prescribing......
There's so so much to think about/deal with that not a single doctor warned me about before I agreed to have my thyroid removed...it all gets to be too much sometimes. Had I known even the half of it I would have never agreed to go through with it. I hope I can get to the bottom of this with the help of all the information you and everyone on this forum have given me. x
Medics are currently in denial that levothyroxine causes such poor gut function and malabsorption
Getting on top of low vitamins is essential
With help of this forum you should make good progress
Elaine Moore website is apparently good ...aimed at a Graves patients
I “only” have Hashimoto’s...but you might find my profile info helpful on gluten, soy, vitamins etc
Would never have recovered without fantastic knowledge and help on here
I just feel so hopeless and sad that I permanently ruined my body at only 19 years old, because I was so desperate to get better...I feel like I was lied to. I am so grateful for all of the information you and others here have given me...I feel like a big part of why I'm finding suddenly being hypo so difficult is because it feels like it was my fault...But, I don't mean to whine at you 😅 I'm really thankful for all your responses.
I agree it’s very very tough ....
Just look at taking lots of little steps foreword
I recommend you keep good thyroid records
How you feel on each dose
Keep good records of results over time
I use an excel spreadsheet...excellent for showing changes over time
A thyroid diary can show you m when you look back, that you are making progress.
It's not your fault and please don't go down that route.
There are over 100.000 people just on this one website, with most feeling let down by the system, and there does appear to be an appalling lack of thyroid specialists.
Please read up, I know it's not easy but you will be your own best advocate.
Well done for getting an appointment with another endocrinologist and let's just hope they will be competent, and care to treat you in manner in which we would all like and expect from our medical professionals.
Hello, Penny. Lovely to hear from you again, and thank you again for your kind words. I've been finding myself feeling a lot sadder and more regretful about everything recently, and my GP has put me back on antidepressants to help cope. I just feel so sad being on all these pills and still feeling so terrible...I know a lot of it is just patience, so I will continue to be resilient. x
Never ever take any other medication at same time as levothyroxine
Levothyroxine may be better taken at bedtime...
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
Recommend getting a weekly pill dispenser for your levothyroxine. That way you never ever miss a dose
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
Teva and Aristo are the only lactose free tablets
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)
Hi everyone, Apologies for jumping in here...but regarding this topic...please can you tell me if it's okay to take Levo, with T3, at the same time? I have done this, always...and after reading this response, I wonder if I am not doing this correctly? I wait 1 to 2 hours for a morning coffee, and, 4 hours, before taking my vitamins.
Thank you x
please can you tell me if it's okay to take Levo, with T3, at the same time? I have done this, always...
It's fine. NDT is T4 and T3 in one tablet so obviously they're taken together if on NDT. I take Levo plus T3, I take my full dose of Levo and half my dose of T3 in the early hours of the morning, then my second dose of T3 in the afternoon.
I have hashimotos and in the early days, some 30 years ago, I suddenly speeded right up. (this sometimes happens with hashimotos) I went to my doctor and scared her half to death demanding something was done, I felt so terrible. I can totally sympathise , feeling really hyper as you must have with Graves, anything which was offered as a solution, no matter how drastic would have been taken gratefully. Don't feel bad, it's not your fault that you took what was on offer.
You have a hill to climb, it's going to take some doing. but one step at a time.... you will do it....
Hi lau, I'm the same as you, had RAI due to graves. Endo told me it would be much easier to manage on levothyroxine rather than carbizamole (forgotten how to spell it).
It's been a year and a half and still not right! I ended up doing a medichecks blood test to check on vitamins etc as not seen endo since Dec and had given up trying to get T3. Drs for some reason won't put it on my repeat prescription and chemists say they can't get the brand I was ok with. But it showed my vitamins are low and knew I was underactive so I'm going to get all those levels correct first before I consider T3 again. Do feel better already from adding more vitamins and increasing levo. Good luck.
My endo told me the same thing...it's true, I was never able to go into remission for more than a couple of weeks at a time, but I'm not sure that the difference in quality of life between taking carbimazole or taking levo is huge, to be honest.
Thank you for sharing your experience. I will keep what you've said in mind, and hopefully we can both start to feel better. x
I had RAI to remove my thyroid after Graves. One point you might not know is that whilst the NHS test TSH, T4 and T3 levels when you have Graves, they only test TSH once you have had your thyroid removed. I now get private blood tests to get all 3 results.
I know how you feel about regretting the thyroidectomy as I had similar feelings but It is easy to forget how unwell Graves made you and for some of us medication does not work to control it. Try to be positive, If this new Endo does not help you Then I believe this site has a list of others to try.
I personally get a private prescription from my GP for T3 which I source from Germany but wonder what will happen after Brexit. At your age you need to get it sorted by the NHS so you can get it prescribed here going forward. It may seem a battle at the moment for you but it will be worth it once you start feeling better. Good luck.
I see...that's a little bit disheartening. They really seem to only be prepared to only do the bare minimum once we've had these permanent procedures, and even getting them to do that is like pulling teeth! I suppose I should go private too.
Thank you...I'm sorry that you had to go through this as well. Grave's was really threatening to destroy my life so I did all I thought I could. I wish I hadn't been so shortsighted at the time though.
I still don't know when I'll speak to an endo given the current situation, but I'll definitely do my best to get the NHS on my side.
When I first saw an Endocrinologist years ago one of the first things he suggested was that I had my thyroid removed or have RAI. I decided against it and 12 years later at 60 I am now in my second remission. You took your Doctors advise and there is nothing wrong with that but what I do know is it hard to get your levels right when you don't have a thyroid. A lot people I know do well on NDT because it contains both T4 and T3. The best site for advice other than this one is Elaine Moore's she had RAI and she helped me get diagnosed about 12 years ago when my GP told me it was the menopause. You can read my story on my profile page. It has been a bumpy ride for me and I might have to have my thyroid removed in the future because I do have a multi-nodular goitre but luckily at the moment I feel well.
Here is the link for Elaine Moore's site
It was my high rT3 level (reverse T3). My other thyroid levels were ALL in the normal ranges, though at the low end. But traditional doctors blew me off because my thyroid test results were in the normal ranges. I ended up going to a naturalpath doctor out of desperation! Reverse T3 testing is not a standard, authorized test and non-progressive endocrinologists dont "believe" in it, nor do they support T3-only supplementation. They only pay attention to the lab numbers, not the symptoms. My naturalpath doctor has changed my life and given me hope! It does suck, though, that I have to pay for the lab tests myself, and my visits to her aren't covered by normal insurance. (I am in the US.) She also ordered virus testing, and apparently I have chronic Epstein-Barr, which also accounts for some of my symptoms. I'm now taking antiviral supplementation in addition to the T3.
What I love about the naturalpath doctor is that she is an investigator, interested in getting to the root of the problem, not just covering up symptoms.
I need to add that I have a functioning thyroid, my T3 is just not converting to an active form (not going to where it's supposed to). I don't have the "techno-babble" down very well yet, lol!
So my T3-only treatment is unique to me, I was just answering your question on what made my doctor order the T3. I hope you get to the bottom of it and feel well!
When I first saw my endocrinologist he did blood tests for everything and I mean everything. He said he wasn't a big advocate of T3 and didn't really prescribe it and told me about all the tests and diets and cognitive therapy he thought I would benefit from. Next time I saw him he said he thought I would benefit from T3 but the health board NHS Tayside (Scotland) would not let him prescribe it as it was not on their formulary. To cut a long story short 2,5 years later after a lot of emails and generally annoying everyone I could think of I am now on T3 and doing ok and he's very pleased that I am too. Just wanted to say not all of them are buffoons wish you well
I was prescribed t3 in August at an endo clinic. I couldn’t get my gp to do tests other than TSH and T4 so I got a medichecks test done. I discovered I had a conversion problem and autoimmune thyroid disease. I brought the results with me along with a chart showing my basal body temperature (which I’d been doing for months) and I read up as much as possible here so that I could put my case. I also explained that I was taking selenium and was on a gluten free diet and he realised I was fairly knowledgeable about my condition and agreed to a trial of T3 with monitoring every 6 weeks. Good luck.
It was not easy! It’s been stopped twice due to cost but my Endo has supported me and it is now being prescribed. I had to go to hospital and have a series of blood tests after being injected with something. I think it was to show how my pituitary gland works. My blood tests have constantly shown a suppressed TSH and very low T3 and T4 levels. My TSH is still suppressed but my T3 and T4 are now on the bottom of acceptable now I’m on Liothyronine as well. Don’t give up, it does make a difference to how you feel even if they say there are no studies to prove it.
I was on Armour Thyroid for a long time in the states. UK refuses to pay for it. I did find someone to prescribe but out of pocket cost was going to be close to £400 as I needed 2 scripts to get my current dosage. I have been buying Thyroid-S from abroad for over a year with great results and very inexpensive.
I had RAI on my thyroid in January 2019. Thyroid "died" and I was put on levo. I felt good for about a month and then declined into a severe hypothyroid state over months and no one knew what was wrong. Doctors blew me off, kept saying my numbers were fine. They weren't fine but doctors think you're fine as long as numbers are in their ridiculous ranges. My TSH was at 4 and then went up to 6 eventually. Free T4 was high and free T3 was low. I was so sick, had tremors and spasms, was freezing, couldn't walk more than about 10 feet without passing out. Went to the hospital and doctor finally suggested T4/T3 combo. This didn't help much because my body continued to convert the levo to reverse T3. I started taking the T3 only and felt better almost instantly. Within a month I was normal again and things have been great since.
My vitamin levels were poor when I started on the T3. I'm a nutritionist so I knew this wasn't because I needed supplements, it was because my liver was functioning poorly. When you have hypothyroidism, your liver is sluggish. You have to do a mild liver cleanse and support your liver with a mild detox diet for at least 30 days. If you don't do this, it won't matter how many supplements you take because your liver won't be capable of metabolizing them properly. Also, your liothyronine or levothyroxine can't metabolize properly unless you detox and support the liver.
My doctor agreed that since I felt better, I should continue T3 only. I also have a functional medicine doctor who did extensive blood work and helped me perfect my diet and supplements. He supported the T3 only regimine also. Basically, my endo agreed that since I went through such an ordeal with levo, I should stay away from it for the time being.
If you want to try T3 only, just be firm with your endo. It shouldn't matter what your bloodwork numbers look like. What matters is how you feel. You're the boss when it comes to your health. I hope your endo will work with you and support your decision about your hormones. I've noticed people in the UK often have a hard time finding an endo that will support them taking T3 only. Here in the US, most endos are fairly flexible so I didn't have trouble convincing mine. My endo supported my decision to see a functional medicine doctor and also supported my decision to cleanse and support my liver. Hopefully things continue to stay positive. Best of luck to you on this.
To be honest, I got lucky and my endocrinologist was on holiday so I saw someone else, who was a bit more open minded. I had been on levothyroxine for several years, still felt awful, they kept putting it up, I started getting palpitations. I was on 225mcg. The endo suggested taking half in the morning, half in the evening. Didn't work so he agreed to trial T3. It was quite subtle, but several weeks later I suddenly realised I was feeling quite a bit better. Particularly mentally, I didn't realise I was feeling so down, till I started feeling happier.
I've been on it for years, and have had no problems. 20mcg and 120mcg levo. I feel best around 0.4 TSH. Certainly less than 1. But it's still a bit of a tight rope. I go between 100-120 mcg levo.
I know there's been talk of stopping prescribing T3, I dread them doing that. I don't want to go back to feeling like that.
I've had 2 bone scans incidentally through work, and have great bones, so the worry about losing bone density is rubbish. Well, it has been for me anyway.
My hubby felt so rubbish on T4 levo we bullied our Scottish GP into prescribing T3 lio after havng done research and saying we wanted a sound medical reason if she said no becuase we would take it further. She [prescribed T3. This was back in 2014. He immediatley felt better and his health recovered. When that GP left the practice another GP sent hubby back to endo who took him off T3 despite our arguments that it was the only thing that made him feel well again. Within a month he was poorly again and they outright refused to re-prescribe T3 so we have sourced privately from abroad since. We decided to do what makes him feel well so that he can lead a normal life.
My thyroid was removed 2009 no one told me I would need thyroid hormone replacement. I went downhill fast, I lost 5 years to chronic pain (muscles, joints & bone) chronic fatigue, I could barely stay awake for more than a few hours, i was very ill, my list of symptoms was huge. I kept going to GP he said all the usual excuses (age, menopause, weight, depression, i was losing my looks!!!) I was on tablets for pain, anxiety, weight, IBS, he tried to bully me onto statins, i often said i hadnt felt well since operation. Xmas 2014 I told my husband i didnt think i would be alive the next xmas.
I started researching, saw another dr (100 miles away) for 2nd opinion who said i was lucky to be alive. He started me on adrenal support right away while i waited for NDT from thailand. After 5 days it was like a switch being turned on, i went back to me gp a month later who couldnt believe how different i looked. I told him about 2nd opinion, he was embarrassed as he forgot i had thyroid removed (he sent me to the endo & surgeon!!!) he did apologise. Long story but i kept crashing on ndt, tried levo and i got really ill. So i tried t3 it was easy to get in france on hols, i felt much better so gp was ok to prescribe. Then all the t3 trouble started and it was withdrawn, i went to private endo who put me on his nhs list, then hospital refused to fund it, endo gave me private prescription for 12 months while i fought local ccg for funding, that took 10 months. I have had to fight for mine and see endo every 3 months for bloods and appt, it was nerve wracking as i knew it could be stopped at any time. My endo said hospital and ccg were keeping an eye on him and he had to justify every t3 prescription. I moved to france over a year ago, healthcare is better here and no problem with t3.
Self sourcing use to be easy and much less stressful than nhs but its hard to get now, you have to fight for it on nhs or go private, very expensive. Thyroid care in UK is appalling.
First of all, I am really very sorry that you've had your thyroid gland removed yet prescribed an inactive thyroid hormond (T4) to replace your lack of thyroid hormones altogether.
A 'normal, healthy, thyroid gland would provide T4, T3, T2, T1 and calcitonin.
I have my thyroid gland but couldn't improve at all on levothyroxine alone. I had the most horrendouse symptoms - after being diagnosed than before (I had to diagnose myself).
A few years ago we could get prescribed NDT (natural dessicated thyroid hormones) from animals' thyroid glands. This provides all the hormones a healthy gland would have done (T4, T3, T2, T1 and calcitonin), being used since 1892 and up until 'they' withdrew this very important replacement through lies/misinformation to do so!!!! One of Thyroiduk's Advisers wrote to the BTA etc but they never did respond to his communication.
Levothyroxine - is T4 alone and, being inactive, it has to convert to T3.
Some people seem to do well on T4 but the majority on this forum do not.
The suppliers of T3 - I believe there are about three - have made the cost extortionate and it was such an excellent excuse to withdraw it from the NHS. I now believe that only Endocrinologist 'might' prescribe. I have my thyroid gland and only T3 resolved the miserable symptoms.
Once upon a time, before blood tests were introduced - we were all diagnosed upon our clinical symptoms alone and given NDT (natural dessicated thyroid hormones). When the synthetic hormones were introduced (T3 and T4) someone eventually decided that we should no longer get NDT and it was withdrawn, despite being given since 1892 onwards and no patients seemed to complain and they didn't die as they did previously.
The majority of 'experts' seem to rely upon the TSH (thyroid stimulating hormone) alone to treat patients - they've lost the knowledge of knowing clinical symptoms and treating them.
TSH means 'thyroid stimulating hormone' and it is not from the 'thyroid gland' but the pituitary gland as it tries to flag the 'thyroid gland' into producing more hormones.
Read the following link - which will be an eye-opener.