Hello all, allow me to introduce myself as briefly as possible in the hope that someone can help provide the relevant information I require.
My name is Nick, pleased to meet you all. 4 years ago I was diagnosed with severe generalised anxiety disorder and depression. What I suffer from is mainly symptoms of depersonalisation disorder.
I have gone through several medications when I landed on Venlafaxine which I had a mild response to. My symptoms lend themselves to sub clinical hypothyroidism and my fantastic private psychiatrist suggested liothyronine might be of some help.
Long story short if that the NHS will not prescribe however I have a private prescription which I am unable to afford in the UK.
I am desperate for a link for somewhere I can purchase liothyronine (t3) from abroad at reasonable cost compared to the UK. I believe this is the last piece in the jigsaw for me and the NHS have promptly shut that route down.
Any information at all would be greatly appreciated and I'd be happy to share more of my story for those that may be suffering in the same manner as myself.
Thank you all in advance.
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nickhodson1
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Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, and T3 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
The NHS are useless at fixing things they can't see with their own eyes or with an x-ray / MRI.
Most GP's nowdays are heavily pressurised to reduce treament costs and for testing, its doctoring "by the numbers". Your doctor isn't even following basic range guidelines - sack them immediately!
Often the attitude in UK surgeries filters down from the senior partners, the same as any organisation, so if you can , I would also change surgeries for a fresh perspective. Also, GP's are not directly employed by the NHS, they are employed on long-term contracts as private consultants - have a think about that with respect to how that will affect their attitude to the "great unwashed masses" and how they deliver health care.
TSH above range and Free T4 below range means your pituitary is literally in overdrive sending messages to your thyroid to produce something it can't do presently.
If I was you, before purchasing anything, I would spend a bit of time doing some research on thyroid dosing, speak to other users about their dosage and corresponding labwork. Then make a plan to start off at the lowest dose that you feel would be effective, this gives you headroom to increase sensibly if no improvement.
If you want to self prescribe outside of the NHS and see how you go, I've pm'd you some sources of T3 meds and glandulars.
If you can afford it, eliminate all gluten, processed sugar and trans fats from your diet -starting from your next food shop, as this will reduce thyroid antibodies (an inflammation / immune response) and also give your body the right nutrients it needs to heal.
You can get thybon with a prescription in the south. Though i am unsure if they will take a uk prescription. If you ring any chemist in the south to check. Approx 25 euro for a months supply. 1 tab a.day 20mg.
Nick... this company requires .... a valid prescription ... and I have no clue if they are cheaper than UK suppliers. If you decide to deal with Universal, just choose your T 3 purchase and pay for it. Then scan and save a copy of your prescription. Write Universal at their email address, giving them your name and order number, attach the scanned copy of your prescription to the email and you are good to go. I would also give them your phone number. They are good about calling if they have questions.
I really identify with all you are saying as have been there and got the t-shirt. I see a Dr KS <redacted doctor name> at the Chelsea and Westminster hospital an endocrinologist who is willing to prescribe natural dessicated thyroid (T3) and I get it posted by guaranteed post from a pharmacy suggested by Dr KS <redacted doctor name>. It costs about & 90 for a three month supply and I currently take 1 grain /60mg a day and since starting it about three years ago I have never returned to the highs and lows I experienced for the previous seven years which ruined my life and those of my family
[ Edited by admin:
26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.
I bought my T3 from Mexico without prescription 300 tabs for around £90, can’t remember the price exactly,they are 25mcg.
My GP gave me the address & phone number of a pharma in Germany £26.47 for 100 tabs 20 mcg plus postage £6.15 but you need a prescription. Can let you have the details if want them.
Hi Hilary l have bought my first lot of T3 on a private prescription from Germany via a local independent chemist. I paid £51.71 for 50. I would love to have details of where you get yours from and the brand name so could you please private message me. Many thanks Yvonne
I'd love you to pm me the name of the German pharmacy too please. I had a contact for a pharmacy in France but they haven't got back to me (and that was a month ago now and I'm getting desperate). I have a supply of 25mcg which I've been halving but they're actually out of date as of the end of Feb and my endochrinologist has now said I need to take 20mcg so it seems that Germany is my best bet. Many thanks
I have been overwhelmed by the response from you kind people. Can anyone else comment on my blood results and how I should interpret them. It's all very confusing but believe it's causing a lot of my symptoms.
Your TSH is over range and FT4 is considerably below range so I can't understand why your GP is not treating you with Levothyroxine. Perhaps you could see a different GP at your practice.
Thyroid antibodies are negative for autoimmune thyroiditis.
Most GPs (at least the ones at my practice) won't consider an increase until the TSH is nearer 10. They don't want to know when it's only slightly above the range. It seems to be more about limiting the cost to them and not our wellbeing.
They (I've tried 5 different doctors in the practice) only ever look at, and talk about the TSH and that was also true of the endo (King's College hospital) I was referred to. Then they wonder why you don't want to discuss things further, so they say you are depressed and that they will give you a prescription for anti-depressants.
Mine has been 7.81 recently but they wait til its over 10 before doing anything (by then you have several other problems going on and they then ignore the thyroid and focus on depression and anxiety. I have been ill and getting worse for many years . . . . . . . . .i am obviously just expected to crawl away and die or take their anti depressants. Not much of a choice. I am not depressed but disgusted at the incompetance and the fact that all the symptoms except depression get ignored.
Well my troubles began in the early 90’s .. There’s others on here who’s troubles started long before that! We are here to help each other mate!! Welcome in!! 👊🏻👊🏻
All my sympathy nickhodson1 -am afraid for an unexplained reason in the uk the bar for treatment of Hypothyroidism has been set far too high. In many countries a TSH over three would be treated -in the uk its over 10!! This was not the case a few years back. It has caused countless people to stay poorly far too long as their hypothyroidism remains untreated.
Am so sorry this has happened to you.
If you look on NICE guidelines it states when your actual thyroid hormones (ft4 & ft3) start dipping below the ranges like your ft4 has they should start treating you.
There is much ignorance in the medical world re treatment of hypothyroidism Im afraid.
Slowdragon gave you excellant advice. You might want to try levothyroxine first. Its a lot cheaperand you may find it sorts you out and you dont require liothyonine. Levothyroxine is the storage form of thyroid hormone -liothyronine is the usuable form. Alternatively there is also a natural dessicated thyroid extract (ndt) which has all the thyroid hormones in it & was the main treatment for hypothyroidism for over a 100years until big pharma invented synthetics back in the 70s.
The advice I was given was to try the standard treatment first (levothyroxine) if that doesn't work add liothyronine to it or try a ndt. If neither of thise work the Liothyronine is the next step after that.....often when people end up on liothyronine is because they cant convert levothyroxine to Liothyronine.
Keep posting any queries or how you are doing on here. There are lots of highly experienced knowledgeable folk who can advise you on your journey.
My TSH was 4.67. My doctor put me on 25 mcg Levo and it has now been increased to 50mcg, though he told me I probably would need 75mcg after my next test. This is NHS. I’m surprised that other GP’s aren’t doing the same!
I often wonder if its set that high because people with thyroid problems who are diagnosed are then given free prescriptions for any medication needed ( not just thyroid related) costing the nhs how much if everyone was diagnosed at the lower figures hmmm
Money always comes first, you have a good point there. Though i pay for all my prescriptions and would happily pay for Levo but they prefer me to be sick until my TSH is over 10. I am more inclined to believe that the bar has been set high so that patients gradually get sicker and require other medications which makes Big Pharma more money first. Big Pharma doesn't want patients getting well or they won't need their medications, therefore the idea is to treat the patient with medication that may in the short term solve one or two symptoms but in the long term cause damage and a reliance on their medication. Once you are really ill, Levo as monotherapy rarely is effective as Drs just keep cutting your dose every time you feel better, going only by the TSH. They think that all they have to do is get the patients numbers in right range and then they insist the patient is fine though the quality of life of the patient is poor. Then just as the patient learns they may need some T3 added to the Levo to feel better, they blacklist it! Just my opinion based on the lack of 'care' and the appalling treatment I have received over the last 15 years.
Furface............Possibly because they are thinking it's the same as treating diabetes - both endocrine system - diabetes monitoring sugar and thyroid issues with several factors mean they can't be diagnosed the same way. Aside from the fact that the TSH really is only showing that the pituitary gland is working (it may not actually be working correctly but it assumed to be) and does not indicate that the thyroid can or does respond, that's what T4 & T3 show but they ignore them. The T3 is blacklisted due to cost (article published in the Metro) showed the biggest supplier had raised the price 6,000% in 10 years from under £5 a pack to over £248...................
Well it doesn't make a difference once you are over 60 as you get everything free then anyway. I did read an article once saying your chances of getting diagnosed over 60 are often reduced as things like thyroid related brain fog might be wrongly attributed to some form of early dementia. Worrying for those who are trying to get a diagnosis and the correct treatment.
Same here. I didn't renew my exemption cert on turning 60. I've been on free meds since I was 32 and I'm 62 now. I was even on T3 for 28 of those years...then the powers that be decided I didn't need it any longer! Now I'm almost 4st heavier with even thinner hair than before and I'm told it's to be expected at my age. They really know how to make a girl feel good!
That might make some sense in England - but it appears to make none in Scotland, Wales and NI.
Do we see different rates of diagnosis among the countries with England trailing?
If we assumed that people with the need for prescriptions were able to act rationally (i.e. had the money to hand, knew about the system, and knew how many they would need), then the prepayment certificate cost would be the maximum anyone would have to pay.
I'm not experienced as so many others are here but from looking at your results, I would say it's thyroxine you need, not T3. Your T4 levels are very low indeed whereas your T3 aren't too bad. If you're not on any thyroid medication, your doctor should prescribe T4 as you are hypothyroid. If it is indeed this which you need, from a prescribing point of view, it will be hugely easier to obtain.
I agree with SlowDragon - doctor wanted me on antidepressants and anti anxiety medication but I am starting to feel better on vitamin D and a high iron, folate etc diet. My TSH and thyroid blood test results have improved too without medication. It's very common in UK to be vitamin D deficient and to have sub optimum levels of other nutrients the thyroid needs to work.
Vitamins and minerals need to be optimum for the thyroid to work. The thyroid is a very sensitive creature! I'm not saying you definitely won't need thyroid medication but I personally prefer avoiding medication and ignorant GPs. If your nutrient levels are optimum then obviously you can still try thyroid medication.
The bar for TSH levels for thyroid medication is very high in the UK but your free T4 is quite clearly below range so if your GP is saying that's normal then they have shown their ignorance, incompetence or reluctance to prescribe/refer.
Yes you are wasting your time with the NHS as they are governed by NICE, who are not actually very nice at all , only to pharmaceutical companies and not real I'll people like me and you, sorry for the sarcasm, it's one of my coping mechanisms, any way you can get t3 from Canada with a prescription, personally I purchased some of mine from Greece without prescription, my most reliable source is via a friendly body builder I know I paid 25.00 for 100 tablets of 25 mcg per tablet, body builders use t3 as a fat stripper and weight loss tool, hope that helps and god's luck and best wishes
Hello Nick ... My advice to you is to totally clue yourself up as much as you can with your condition and only take your GP’s ‘Conclusions’ with a pinch of salt .. I have lost total faith in the NHS as far as my thyroid condition is concerned .. I have also tied GP’s up in knots asking them questions and had endo’s blaitantly contradict themselves to get out of saying something they don’t want to just to save their ridiculous NHS salary ... They simply do not care about us if it causes them grief ... Get your T3, get knowledgeable and tell your GP/Endo to go and have inimate times with themselves VERY loudly in front of everyone ... That’s the ONLY satisfaction you’ll get I assure you.,
Anyway I can give you a link to a supplier based in Hong Kong where you can get 600x25mcg pills of Liothyronine T3 for around £70.00 inc P&P ... I have used them twice now, they have been flawless and my pills turned up in under a week. They are out of stock at the moment but assured me they will have some stock in a week or so ... PM me for their details ...,
based on those results you are hypothyroid with a tsh at that level and low t4 and need t4 not t3, once your tsh is lowered and t4 is raised ( takingt3 will only lower it further) you may find that is all you need to do, or make a further request for help but until those two factors are addressed then I wouldn't be advising taking t3 only, unless you have a problem with taking t4 or tested to show poor conversion?
I have exactly the same issue! Most GP’s in the UK will not even test your T3 for fear you are deficient and even if you are you will not get the prescription due to them costing over £250 a pack. This is rubbish & exploitation of people with this debilitating disease.
I have a great pharmacist in Belgium who will post them in however many packs you need IF you have s prescription. Good Luck😀
Nick, I’m so relieved you’ve come here for a healthy - and knowledgeable - dose of good thyroid sense. You really are in great hands: my life’s been turned around with the help of the gang on this forum.
And strangely, in talking about yourself you’ve described my Mum, her brother, eldest sister and her dad (my maternal grandfather) and also my grandfather’s sister, to a T.
Since my mum and aunt have thyroid issues and I know my grandfather - their dad - did too, I have a suspicion that his sister my great aunt (now dead) wouldn’t have needed years of ECT, that every single one of the family members I mention might have avoided the familial depression (or at least had it lessened), and that maybe even my uncle could avoided suicide in his 40s/50s.
Being the only one left apart from the eldest sister she doesn’t get on with (to be fair my aunt is fairly nuts), my mum refuses to do any of the extra blood tests I’ve suggested as she refuses to see anyone but her absolutely useless endocrinologist who hasn’t got a clue. She’s gone from hyper to hypo, is really ill with thyroid problems, anxious and depressed, and won’t let me help her. I’m so frustrated!
Thank goodness your psychiatrist had the foresight to recommend you get your thyroid tested. From here, the only way is up (especially if you go gluten-free and get your vitamin and mineral levels up, as you need great iron/ Ferritin levels for thyroid meds to work, otherwise you may as well just be chucking Levothyroxine down the sink)!
Good luck, and here’s looking forward to a sunnier future.
ow at least you are in the right place for help, there are so many kind and knowledgeable people on here.
I am on T3 but would not recommend it unless you really need it and I can't tell from your test results - there's no T4 to see where you are in the range of T4 compared with T3.
It's much more difficult to 'manage' then levothyroxine and often means declining delicious food and/or tea or coffee just so that you can fit in your T3 far enough away in time from them. It's easy to forget to take the pills out with you when you go to exercise and in my case, like others I guess, tricky adjusting the dose up and down if you are active.
So, although you sound keen, I'd urge you to think carefully and see if Levo will sort you out if you have a good endo to monitor you.
I'd just like to thank everyone for their input and I am going to have another private blood test via medichecks to categorically confirm the results. Surely a GP can't argue with 2 sets of results?
I repost my results and thank you all again for your time and kind wishes.
They can argue and they will. Sigh... All the blood test results in the world won’t change the willful misreading and misinterpretation by the medics. It’s not the blood tests that are at fault (although it’s very true that the NHS doesn’t generally offer the full gamut of tests they should for the thyroid).
Also, don’t take any vitamin or mineral supplements 48hrs or less before the blood test, or take any thyroid meds at all within 24hrs (or is it 12hrs? Can someone remind me?). Don’t eat that day, or drink anything other than water.
Or at least that’s what I was told - perhaps someone could confirm?
In any case, try and get your bloods drawn first thing in the morning as these will give the most accurate results for your thyroid levels (they naturally fluctuate during the day).
Medichecks blood tests are at least nice and clear (I use than myself) though have in mind, GP's don't often accept comprehensive tests done privately. 1. They are at a loss as to how to interpret them accurately and go by their training which is T4 and TSH. They think all that's necessary is for you to be in their ridiculously wide ranges. (A chimp could do that!). And 2. They often prefer to go by their woefully inadequate tests as they don't like you knowing more than they do, ego rules. The other mistake they make often is to tell you your thyroid is fine and you don't need thyroid medication anymore (because once on treatment, the number fit their normal ranges).
Incidentally, they ignored all my tests, so did the endocrinologist. They either have woefully inadequate knowledge or there is a greater plan to make people sicker so that they need other pharmaceuticals. It is worth bearing in mind that many Drs are given financial incentives to prescribe anti depressants and certain other drugs and many Drs and specialists have shares in pharmaceutical companies.
This is why people end up treating themselves so that they can go on to have a functional and decent life. Do not let them bully you into taking anti depressants, they do this a lot and unfortunately many anti depressants adversely affect the thyroid function making it even worse but they don't tell you that bit.
You need to look after you because they won't. Learn as much as possible and be your own advocate like most of us. Sadly a fact.
I'm going to express my thoughts about the advice given by Abi-Abster (and others sometimes). Apologies if I've already put it in a message in this thread, but it's important.
The blood test results come back indicating whether or not the patient is on thyroid meds. If you are and you deliberately avoid taking your meds before blood tests your results may be misleading. Speaking from experience I take my medication before seeing my Professor/endo and having bloods tested and they continue to prescribe the same dose, a slight increase from when I started. This is T3 though, which is short-lived, unlike Levothyroxine.
Personally, I would think carefully because if the lab or doctors are already taking into account that you are on thyroid meds you could be given an unnecessary increase in meds ... and that seems to be how my serious problems began (I ended up with TSH >95 = coma level), with a GP who kept increasing my dose.
This is only an opinion and I know people advise not to take Levothyroxine in the morning before bloods are taken, which sounds reasonable to me, but 24 hours ... ???
Anyway, others know better and if people like GreyGoose, Humanbean and the Administrators say otherwise then please ignore my opinion.
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Response CCG Re: T3 HELP
Liothyronine (T3) withdrawn from NHS
Liothyronine request refused
Getting T3 on nhs
