Hi all, found you all after some desperate googling.
In 2012 I had a full thyroidectomy due to follicular cancer.
My life has been gradually descending into hell since.
Depression, anxiety, fatigue etc.
I have always been socially awkward and these symptoms have amplified it massively.
I no longer see any friends, I have pushed all my family away and over Christmas my wife has told me she cannot cope with me anymore which I full understand.
My doctors have only ever focused on my T4 and I believe the issues I am having could be relieved somewhat by supplementing T3 along with my Levothyroxine.
I am at my whits end, I don’t see the Endo until next month where I will beg him to trial T3 but in the meantime I feel I desperately need to do something and was hoping that there was someone who could point me in the direction to get a hold of some T3 in the UK.
All I’ve seen are some dodgy sites that want bank transfers or Bitcoin etc.
8 years of hell and now about to loose my wife and son too.
Can anyone help ?
Written by
MrStruggling
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It's possible - but tricky - to get lio on the NHS. Step 1 is proper blood testing - ie TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12. You should have an early morning fasting blood test (TSH is highest first thing) and leave 24 hours from previous dose of levo. The nutrients are important, first because for many hypos these are too low and second because your meds work best when these are optimum. I have had some success with the GP by saying that these are the tests recommended by Thyroid UK, but if this doesn't work you will see LOTS of posts here about private testing. SlowDragon does an excellent summary of the testing available and will hopefully pop up in a bit.
You then need to show you convert badly: ie your TSH is nice and low and free T4 is nice and high in range (so you are on a good dose of levo) and yet your free T3 is much lower in range and you still have hypo symptoms.
If you come back with your blood results (with lab ranges in brackets afterwards as these vary from lab to lab) the lovely people here will help you understand them - and point you in the direction of a T3-friendly endo if yours is not.
Historically it has also been possible to see a private endo and get a private prescription which you get fulfilled from Germany at a fraction of the price of UK-lio - but this route has probably stopped since the end of the Brexit transition ... and some people get it from overseas without a prescription - but much the cheapest route is NHS lio, if you can get hold of it
A lot of us have been there and worked out it's down to us to get the right testing and to get our actual blood results rather than be fobbed off with meaningless b*ll*cks like "in range" or "normal" [being in range is irrelevant = it's where you are in the range that matters].
You are legally entitled to your blood results, without giving a reason (though it's easiest either to register for on-line access or say "for my records"). Please get your historic records - you may be shocked.
And yup. the state of thyroid awareness among the medical profession is woeful. I understand that GPs get about half an hour on it as part of their training, which is why they are TSH-obsessed; and most endos are diabetes specialists with the people-skills of a sea-slug.
Information is power: read the posts, answers and links relevant to you on this forum, and have a good read of helvella 's excellent glossary [saved in "pinned posts" to get to grips with the jargon
I am currently taking 125micrograms daily but I do not know what my blood results are other than “we are where we want you” which I have been stupidly accepting over these years, trusting that they would look after me.
I have had blood taken recently and I am waiting for the phone call from the Endo on the 8th of Feb.
I am going to gather as much information from here as I possibly can and present a case to them when they call.
I also have had a thyroidectomy. (2006) . I had Graves’ disease and so had a madly overactive thyroid. It was the biggest mistake of my life. I struggled for six years until 2012 and then discovered a book with lots of information and later this wonderful site. I saw an endocrinologist privately, he agreed I needed T3 and in those halcyon days, my GP practice started to give it to me on an NHS prescription. Recently I received a letter from my GP saying I needed to see an NHS endocrinologist to confirm my need for T3. I was terrified of losing it and began to compile an account of how my health had deteriorated since my thyroidectomy. I missed out nothing, gave dates for every health problem I had incurred and then praised the wonderful addition of T3 which had given me back my life.
Amazingly I had a sympathetic endocrinologist, who looked at my pages of notes, asked various questions and listened to my answers. She then said she was annoyed that I had been asked to see her, as clearly I needed T3 and she was happy to write to my GP and the CCG and instruct them to continue it. I was so happy I burst into tears.
So, it is possible to get T3 on prescription but you need to see a sympathetic endocrinologist and give details of how your health has changed and damaged your life.
I have passed on the name of mine to Thyroid UK so if you are in the South East you could see her. She works privately too. Just ask TUK for the list or if you send me a private message I can give you her name.
Yes, good endocrinologists are like the proverbial gold dust. It is very odd that we are so poorly treated. I cannot think of any other medical problem in which patients are held in such contempt, as though we have lost our brains along with the healthy thyroid.
I am so sorry to hear about your wife and family. My own family have been unsympathetic at times and have been told to "make an effort" or "pull myself together". I don't think they have any idea how bad I was feeling and I would lie for days on end in bed without the energy to even get washed or dressed. This went on for over 2 years and my GP refused to help so I had to self medicate. Please get your wife to view this site so she can understand how very hard it is for some people especially if they are like you and don't have a thyroid. Sending you a virtual hug ((((hugs)))) and I hope we can help you to regain your health.
Thank you all that have responded, it means the absolute world to me to know that I’m not loosing my mind and that others have felt how I feel and have come out of the other side.
I have ordered an Advanced Thyroid Function Blood test from Medichecks to see for myself what on earth is going on with my body.
I will post the results here when they arrive and hopefully you will be able to help me build a case to present to my Endocrinologist.
Again thank you all so much, it means the world to not feel so alone.
Calling out to Hidden Hennerton Lora7again fuchsia-pink
If you click on the @ symbol below the Reply box, and start typing a member's name, it displays a list of names that match. Click on the one you want. That converts the member name to blue and sends them an alert.
If you haven't done one before, suggest you look up SeasideSusie 's replies to other posters on how best to do a home blood test [click on her name and look at replies] x
First of all, I am very sorry that you are now having to cope with losing your wife and son which is very stressful for you. When we're first diagnosed and given levothyroxine, after some months we wonder why we are still feeling very unwell and don't understand why.
Unfortunately neither do doctors and many endocrinologists seem completely unaware why we're complaining.
Tell your wife and son that due to having a very serious condition if undiagnosed/undertreated or taking replacements hormones that may not suit you, that you are attempting to get help/advice from sufferers themselves who've had various struggles and some even lose their livelihoods.
People who have hypothyroidism in the UK, no longer pay for prescriptions due to the seriousness of the condition.
There are many clinical symptoms and tell them at present you need their support as you are trying your best as the medical professions (in UK) are limited to what they prescribe due to cost. Some of them have absolutely no clue of how best to help patients recover their health.
This is the procedure to follow and always get the earliest possible blood draw even if you have to make it weeks ahead:-
Thyroid hormones should be taken on an empty stomach with one full glass of water and wait an hour before eating. Food can interfere with the uptake of hormones.
All blood tests have to be at the earliest, even if made weeks ahead - fasting and allow a gap of 24 hours between last dose of hormones and the test and take it afterwards.
Also request B12, Vit D, iron ferritin and folate at the next blood drawn as well as the thyroid ones.
Put on a new post for comments.
We can get well but patience has to be number one, as our body has to gradually recover.
I feel really extremely sorry for you and also more anxiety put upon you - even if your wife doesn't realise this. You are desperate due to having a serious condition that's why, once diagnosed, we don't pay for prescriptions for any other condtions we, hopefully, don't develop.
Maybe your wife and son do not realise what a serious condition a dysfunctional thyroid gland can cause and if the normal replacement doesn't improve our health we don't know where to turn. Thyroid hormones are needed from head to toe in order for our bodies to function. The heart and brain have the most T3 receptor cells and your doctor hasn't tested your Free T3 or free T4 I presume.
The problem is that once people are diagnosed with other conditions, they are given prescriptions for medications that resolve their symptoms.
Unfortunately if we're hypothyroid, that's a completely different 'kettle of fish' as we're dealing with hormones that actually permit our bodies to function as normal. It cannot do so if we're on insufficient hormone replacement and, very unfortunately, few doctors seem au fait with anything to do with thyroid hormones except to look at a TSH result.
So, you have been prescribed T4 (levothyroxine) alone.
Well, I have my thyroid gland and for me levothyroxine was hellish and made life unbearable. I must also state I had to diagnose myself and if you wish, you can click on my name and it will take you to my profile. Also you can put in your profile some of the above you've posted and in future members can read some of your history.
Some people might find that the addition of T3 to T4 might help but others don't. Our bodies are all different unfortunately.
If you can afford a private test (I'll give you a link) you can get a Full Thyroid Blood tests. Blood draw must be first thing a.m. and it is a fasting test and allow a gap of 24 hours from your last dose of levothyroxine and the test and take afterwards.
I have my thyroid gland, found levothyroxine simply awful. I improved with T3 added to a reduced T4 but then found T3 alone suited me best and relieved my symptoms.
The problem with NDT - the original thyroid hormone replacements from 1892 up to the present day saved lives, without blood tests from then on. The NHS also removed this.
Unfortunately Big Pharma saw the opportunity for a share of the profits and introduced levothyroxine (T4).
Mention to your wife and son that you have a condition and if you remained undiagnosed you would die due to not having been diagnosed or given replacement hormones. Levothyroxine is T4 - it is an inactive hormone and has to convert to T3. T3 alone is the Active thyroid hormone and it is required in our millions of T3 receptor cells and brain and heart contain the most. Unfortunately, like many who are supposed to be educated and knowledgeable about thyroid hormones seem not to bother one iota about patients who remain very unwell and especailly for someone without a thyroid gland altogether and is given levothyroxine alone,
I cannot bear it because I know exactly how very, very unwell people feel but also feel ignored by the professionals. Sometimes I think they've chosen the wrong profession as many seem to have no compassion at all.
I believe you have been neglected - first of all having your thyroid gland removed and given you T4 alone, when our thyroid gland produces T4 and T3. T3 being the most important.
Ask your GP for a 'Full Thyroid Function Test' (or there are private labs that do home tests). If you decide, make sure you are well hydrated a couple of days before).
I hope your wife will assist you over the next few weeks as your behaviour is caused by not having sufficient hormones and that we have millions of T3 (the active hormone) receptor cells and heart and brain contain the most. Nothing in your body is functioning as it should.
You've been neglected and that's down to GPs (poorly trained) and the BTA et al as they seem to know less than the majority of members on this forum.
We, who have experienced the catastrophe of being undiagnosed for something that is a 'common condition'.
You can read my journey, if you wish, if you click on my name. I'm now well and occasionally may have a slight up/down.
Thank you Shaws, I am terribly uneducated in this so trying to get up to speed as fast as I can. The doctors have never explained what was what and I blindly just marched on accepting their recommendations.Lots of reading to do and will check out yours and the other commenters profiles as it is very enlightening.
I also intend to write my journey in my profile as it may also help somebody in desperate need of help in the future.
I just wanted to say hang on in there and keep fighting. Not at all easy when you feel rubbish. Maybe keep taking to us, if it helps. You can learn a lot by reading profile stories and new or old posts.
As you have seen, you are not alone and people here understand how you feel.
Thank you for the kind words, I absolutely will keep the fight, my eyes are now wide open.Until today I felt completely and utterly alone, but not anymore... I intend to stay here and share my road to recovery no matter what it takes.
Good! One of my mistakes was giving up. I am going to “follow” you, basically so that I get a notification when you post and can hopefully throw something supportive into the mix. I don’t know half as much as most on here, but I can do supportive!
I am so sorry to hear what you're going through right now.
If you can manage to buy some T3, I'm sure that you will feel much better, both mentally and physically.
Perhaps you can contact Admin, to see if they can recommend someone?
I am not a doctor, nor have I seen your bloodwork results....but possibly, you might need an increase in the T4....and, you obviously need some T3.
Scrumbler made a great suggestion, to ask your wife to join the forum, so she can read what this disease ...illness...does to us, how it makes us feel.
Good luck on this journey; you've come to a great place, for support, and, knowledge.
Can I just add a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin plus a measure of T3 said to be about 10 mcg plus a measure of T4 said to be about 100 mcg:
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on and is said to be about 4 times more powerful than T4 - with the average person using around 50 T3 daily, just to function.
Some people can get by on T4 only, but there are some people who at some point in time simply stop converting the T4 into T3.
There are some people who simply need the addition of a little T3 -synthetic Liothyronine added to their T4 in order to bring both these vital hormones into balance as you will see from the above you have in fact " lost " your own T3 production, which for me, is like loosing my own natural pilot light which I now manually turn on every day by taking my thyroid hormone replacement.
Having " lost " your thyroid you have, in fact, been down regulated by about 20% of your overall wellbeing and over time this has pulled you further down into the dismal depths of living without a thyroid and being treated with monotherapy on T4 only.
Optimal conversion of T4 into T3 needs optimal ferritin, folate, B12 and vitamin D and these need to be maintained and you may well need to supplement these yourself as you may well be " in the NHS range " but not at a level that aids wellbeing for a hypothyroid person.
Optimal conversion on T4 only would see your T3/T4 ratio somewhere between 1 / 3.5-4.50 T3 to T4 with most people preferring a conversion ratio of around 4 or under :
When your results come back simply divide your T3 into your T4 to see where you sit :
Generally speaking in the UK the NHS treat and monitor in primary care with just a yearly TSH blood test.
This is the least reliable test of anything and it is essential that you are dosed and monitored on T3 and T4 blood test results with the intention being to balance both vital, essential hormones into the upper quadrant of the ranges.
The thyroid is a major gland responsible for full body synchronisation including your mental, emotional, psychological, physical and spiritual wellbeing, your inner central heating system and your metabolism.
In the UK it does seem near impossible to be prescribed anything other than T4 - Levothyroxine.
On the continent there are branded, fixed ratio, T3/T4 synthetic thyroid hormone replacements. There are also various brands of T3 - Liothyronine as there are T4 as we are all different and options are necessary.
In many places in the world Natural Desiccated Thyroid - pig thyroid dried and ground down into tablets, referred to as grains, is the first treatment option for hypothyroidism, and was successfully used in the UK for over 100 years prior to Big Pharma launching Levothyroxine, along with the blood tests and guidelines that now seem to be all that we are prescribed.
I was where you are and found this amazing forum and started reading other peoples health issues and slowly, through the brain fog, I started to understand a bit better where I was in all this:
I too simply accepted that the doctor knew best, and that I needed the anti depressants : I too never knew my actual blood test results : I too trusted the system : don't beat yourself up any more : armed with some information you too can turn things around and do something about it - which you have done by coming on here.
I am with Graves Disease and following RAI thyroid ablation in 2005 became very unwell about 7 years later :
One book that is a goto for me is " Your Thyroid and How To Keep It Healthy " is written by a doctor who has hypothyroidism, Barry Durrant - Peatfield and is available on the Thyroid UK website who are the charity who support this amazing forum and where you can find much more information about everything you may need on your journey back to better health.
Thank you for your reply, I have the ball rolling and expecting my blood testing kit to arrive this week.Hopefully my journey to reclaiming my life is just beginning.
First step is to get FULL thyroid and vitamin testing done privately
Medichecks have 25% sale today (if you haven’t already ordered)
125mcg levothyroxine is not a very large dose for a man
Do you always get same brand of levothyroxine
What time of day do you take your levothyroxine
Do you always take it on its own, no other medications or supplements and on empty stomach?
You MUST get copies of previous test results
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Rarely is more than TSH tested, which is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially after thyroidectomy
Are you currently taking any vitamin supplements
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...........NHS and Private
tukadmin@thyroiduk.org
Roughly where in the U.K. are you?
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...
important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
We need OPTIMAL vitamin levels before starting on any T3
What a fantastic chunk of information you have posted for me, thank you.I do get the same brand and take it first thing in the morning with water on an empty stomach.
I have ordered the medicheck thyroid plus antibodies and vitamins test which should be here any day now.
I will contact Thyroid UK for a list of recommended specialists as I feel my Endo does give much care other than my TSH number.
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