Hi. Needing some advice please 🙏 Apologies for the long post in advance. I've posted before, so won't go into everything again..........but in short after 11 years of feeling appalling on T4 Levothyroxine (and being ignored/gaslit by the NHS), I saw (in desperation with family financial help), a Private FMD & their Endocrinologist between 2020-2022. Through them I've been on T3 (Liothyronine) since September 2021, alongside a reduced daily T4 dose of 75mg. They've kept my GP informed throughout, and the GP followed their instructions to reduce my T4 from daily 100mg to 75mg because I was taking T3. I was first started by FMD on 30mg T3 Liothyronine (Sept '21), then down to 20mg a few months later - and in Oct '22 they further reduced it to 10mg because they said I was "obviously not feeling much benefit" even on 30mg!! So no thought to it actually being too low a dose from the start.....no, just keep reducing because its clearly not of much use to me!! 🥴 They were fixated on my TSH which is still very surpressed even on T3. They freaked out at my FT3 going up quite a bit from a very low reading. It then went low again after they reduced it, but they didn't click and were happy it was back to low normal. It didn't matter that I told them I felt sh*te. Truly despairing. There was no talking to them. So, I've continued to self-medicate on 20mg T3, alongside the 75mg Levo via NHS. I still have severe Hypo symptoms. No weight loss on T3. From being a perfect size 10 pre Hypo diagnosis in 2012, I've never lost the 6 stone weight gain since. To further compound the story (and as some will know on here), I've had a formal diagnosis of 'Myalgic Encephalomyelitis' (ME/CFS) these past 5 yrs - and this means that GPs attitudes are far far worse. The illness can be caused by Hypothyroidism, but of ofcourse they do not accept that do they. No idea what I'm doing tbh, and still cannot get the name of a T3 prescribing NHS Endo in my area (Stockport/Manchester) from this forum, which I won't go into as it's very upsetting - and frankly shocking as to why I cannot be provided with the actual name(s) of NHS Endos who have & will prescribe. Their workload is of more concern than us sufferers. So I've given up on all that now. The Thyroid UK list isn't much help because there's no guarantee anyone listed who might prescribe or has prescribed, actually will prescribe to me! Successive NHS Endos have refused me in the past, and even with a Private Endos request, the GP will not comply. I know of someone who saw a Private Endo and the GP will now prescribe, but I saw the very same Endo in 2020 and was refused and gaslit for £400. I cannot put myself through any more trauma over this. So, on Thursday I've been summoned by my GP for TFTs, not that they've bothered checking them for 3 yrs - and they've been quite happy to accept the private FMD/Endos results and instructions over that time. They've never once questioned my being on T3 privately. However, in October '22 the Private Endo requested them to prescribe T3 to me. By March '23 I'd still heard nothing from them so I requested a prescription. I got a call from the GPs Pharmacist saying they won't prescribe. No reason. I pushed and threatened legal action and the main partner said he "did not think it necessary (HAHA) but would prescribe T3". Needless to say it's still not happened, and on my record of that day the above sentence has been changed to "GP says T3 not necessary". My private FMD/Endo will not help me with pushing GP. I need to submit a formal complaint but haven't been able to face it all. So, my main Q is, do I stop taking T3 after today so my TFT levels have no T3 in them by Thursday morning? And, do I tell them I'm not taking any T3 privately anymore in the hope that they'll see sense when I tell them how awful I feel on T4 only treatment, and they may back down and finally prescribe T3 based on the Private Endos advice? I still have some amount of T3 left becausr of a very kind soul. I'm too scared to go all out and try more T3 beyond the current 20mg, and stop T4 altogether. Trust me the improvement of adding a tiny bit of T3 is marginal at best, but I do notice some difference, however small. Fyi, I cannot continue to afford a private T3 prescription or to buy from abroad. I'm a single mum who has been unable to work for 5 years due to severe ME/Chronic Fatigue. This illness has left me predominantly bedbound and housebound these past 5 yrs. It's absolutely horrendous. I've gone from a very full, normal life to one of a virtual standstill - and in all likelihood the main cause of my chronic ill-health is 11 years NHS mismanagement of my Hypothyroidism diagnosis (in 2012). If anyone can please advise me about my TFTs this Thursday I'd be very grateful. Many thanks xxx
Should I tell GP I'm taking T3 on private presc... - Thyroid UK
Should I tell GP I'm taking T3 on private prescription?
First
There’s absolutely no point changing dose of T3 now
Any dose change needs to be minimum 6-8 weeks before any blood test
You need FULL thyroid test and vitamins
See what GP will test first ……get any missing tests privately
Request vitamin D, folate, B12 and ferritin levels are tested
Are you still absolutely strictly gluten free
What about dairy free?
Which brand levothyroxine is 75mcg
Do you always get same brand levothyroxine
Which brand is T3
Exactly what vitamin supplements are you taking
Do you have some recent private thyroid and vitamin results you can add?
ALWAYS test thyroid early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Do you normally split your T3 as 2 or 3 doses spread through the day.
Day before test ALWAYS split T3 ….last 5mcg dose Approx 8-12 hours before test
On almost any dose of T3 it’s likely TSH will be extremely low or suppressed. Most important results are always Ft3, followed by Ft4……and all four vitamins maintained at OPTIMAL levels
Many thanks for your reply. GP highly unlikely to test my FT3 (as they never do in the UK), although I have asked in advance.. ..and they do not take kindly to external test results being submitted I.e thriva, medicare etc. They've ignored a UK FMDR + her Endos advice (private) and she was a GP at their practice for 10+ years.
Always been on the same brand of T4 Levothyroxine.
I take my T4 (75mg Levothyroxine brand? No boxes left, but its been the sane brand for 11 yrs) & T3 (20mg Liothyronine/Thybon Hemming ) first thing in the morning upon waking with 1 hour before breakfast. Same as I always did with T4 only. Taking 10 AM then 10 PM made no difference to my energy levels.
The only appointment I can get is 10.30am on Thursday. They only have 1 nurse and impossible to get earlier appointments as she never has them.
I take big doses (not OTC) of all the usual Vitamins, and listed in previous posts. My levels have apparently increased a lot according to FMDR, but still CFS persists unrelentlessly.
Thanks again.
If your levothyroxine is single tablet and 75mcg dose brand will be Teva as Teva is only brand that makes 75mcg tablets
Teva brand upsets many people
So that’s something to consider
So you need to test full thyroid and vitamins yourself at least annually
Test vitamin D twice year
Add most recent private test results
TSH will be suppressed or very low on T3
Essential to test Ft3 and Ft4 yourself
Test early morning, between 8am and 9am. Only water between waking and test
Last dose levothyroxine 24 hours before test
Last 5mcg dose T3 9pm night before test
Come back with new post once you get new results
Hi, just to clarify re T4 dose.... I take 25mg + 50mg =75mg. So it won't be TEVA. I've always had the same brand, but I'll check the name when I get another prescription as I've no boxes right now to do so. As I said, it's never helped me in 11yrs of taking, so no idea whether I should even be on it or if I'd be better on T3 only... .. but this is the Hypo merry-go-round we go on isn't it. Yes, I'll post after the next results come in. Thanku again.
I wish someone had the authority to put the naysayer's backs against the wall and demand they explain in medical, not financial, terms (and with firm justification ) why T3 is considered such a contentious medication.
I need high dose T3-only to function but that point doesn't seem to penetrate the skulls of the decision makers despite the very obvious fact that it has probably saved my life.
I have to self source and self medicate my T3...long story in my bio.
Thankfully my GPs have now understood what I'm about and leave me to it....this makes no difference to any other treatment. The can do nothing and the endo I saw was clueless and concluded that I should take Levo....which caused the problem because it was the wrong medication.
I was diagnosed with both CFS and Fibro about 20 years ago and basically " they" thought it was all in my head and suggested a talking therapy.....that got an icy reception!
Taking T3 will naturally reduce both TSH and FT3...do they understand that!
That endo clearly had no idea how to use T3....we start low and increase slowly. You were hit by jumbo jet!
There was no need to reduce levo when you added T3....FT4 will drop when T3 is added.
Research tells us that TSH is not a reliable marker particularly after adding exogenous hormone.
Your medics are barking up the wrong tree!
Do you know if you adequately convert T4 to T4?
Have you been advised to optimise vit D, vit B12, folate and ferritin?
Have you had thyroid antibodies tested to check for thyroid autoimmune disease/ Hashimoto's?
Can you post any previous labs including ref ranges and stating dose at time of testing?
You are legally entitled to request copies of result from your surgery.....not the GP.
I'm not a medic so can only speak from personal knowledge and experience but I suspect low (cellular) T3 may be your problem....perhaps caused by poor T4 to T3 conversion.
But guessing is no good so we need labs...
I've read that most people will clear T3 from the serum in around 4 days but it will take longer to clear from the system
thyroidpatients.ca/2020/06/...
However to get anywhere close to an accurate test result we need to be on a steady dose of hormone for at least 6 weeks so that it first settles in the system.
On that basis in your shoes I would go ahead with the test on Thurs and explain that you are taking 75mcg T4 with 20mcg T3...that will give you a base to work from. Post the results here and members will advise
Do not allow them to alter dose based on TSH... insist both FT4 and FT3 are tested before any change is made. And ask to have the above nutrients tested along with thyroid antibodies TPO and Tg
thyroidpatients.ca/2021/07/...
Medics are duty bound to consider symptoms during any diagnosis....problem is that many are clueless about thyroid disease!
They should not be making decisions without having all the facts to hand!
Labs first...
You have my sympathy...it's a hellish situation to be in but you are not alone here.
This is just my take on your situation others may offer different valid suggestions.
Good luck!
Hi & thanks so much for your reply. In answer to some of your Qs, I forgot to add to my Q that I was diagnosed with Hashimos in 2021 & I also have the faulty DIO2 Thyroid Gene. My GP has all of this info via Reports from the *Private Endo (+ loads of other test results from tests NHS would never do), but they just ignore it all as I've said. I've been taking loads of big dose Vits (incl the ones you said) since mid 2020, and my levels have improved on paper but I'm still predominantly bedbound due to CFS. By the way, my *private FMDR was my NHS GP for 6m before they went Private as a FMDR (set up own FM clinic). I found them because of a tip off from a Healthstore that they believed in and understood ME/CFS! On my first NHS consultation with her she immediately said I needed a course of B12 injections right away for 'pernicious anemia'. This is when all previous GPs at the 2 different practices I'd been at for 10 yrs had said my B12 levels were always "fine", even though it was always extremely low and I was feeling dreadful 247! Clueless. Anyway, the GP (who was to become my *private FMDR (but who has now left the NHS & I can no longer afford to see) said that after the intensive B12 Course I would need to self-inject B12 atleast weekly, but she could only prescribe 1 injection per quarter on the NHS! So I was privately prescribed got Hydroxocobalamin and have been self administering weekly ever since. I get it elsewhere now. My levels are now very high but I still feel terrible CF. Needless to say my current set of GPs who my FMDr worked with *above for years, are utterly clueless and now *above Dr has left the GP Practice I'm definitely viewed as a 'trouble patient'. Thanku again very much for replying.
I strongly suspect your FT3 is far too low but they don't seem to understand that for good health every cell in the body needs to be saturated by a constant and adequate supply of T3
Low cellular T3 = poor health
Stick this under their noses!!
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
frontiersin.org/articles/10...
Also, you say below that, "my TSH has been historically surpressed on T4 only treatment".
If your T4/ T3 conversion is poor ( as you say) then your FT4 will be/ remain high. The pituitary will sense this high level and consequently will not send out a signal via TSH to the thyroid to produce more hormone So keeping the THS low or even suppressed.
What medics seem to forget is that TSH only indicates the overall level of hormone in the serum ( T4 +T3) it does not indicate the level of each hormone.
Medics see your low TSH and immediately think "overmedication" and lower the dose which improves nothing.
It is essential for good hormone evaluation to look at both FT4 and FT3 because ( in your case) FT4 is high so they then base their diagnosis on the resultant low TSH ..but they have no idea where your FT3 sits and most of them seem to think it doesn't matter which is complete nonsense.
So, first we need a full thyroid test which should help provide you with an argument to instigate better treatment.
Hope this ramble makes some sense
Bottom line have the test on Thurs as arranged explain you are taking T3 ( otherwise your results will confuse them even further)
You say you have the Dio2 polymorphism.....this should help you achieve a T3 prescription. Do you know if this was inherited from one or both parents...if from both your case for T3 is even stronger
Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients
academic.oup.com/jcem/artic...
You may need to do some reading to build your case but the justification is there if you can persuade medics to get off their high horses and listen. They are supposed to listen to patients concerns....not to dismiss them!
You are not a "trouble patient" you are a patient with good reason to be listened to!!
The duties of a doctor registered with the General Medical Council
gmc-uk.org/ethical-guidance....
❤️ thanku again. No printer but will get those articles printed off somehow and submit to GP via recorded post! My Faulty DIO2 Thyroid Gene is from 1 parent so I guess that'll be no help?! Hasn't been thus far! GPs completely ignored. They do not get the T4/T3 conversion stuff 😒 However their Pharmacist did get it on a TC with them in March '23, and she spoke to GP who said to them that that in his opinion "T3 is unnecessary, but I will prescribe." I was elated but it was shortlived. I'm sure he only conceded at the time because I threatened them with a Med Neg Lawyer (as per my original post), Since then no prescription has been provided and the GP has purposely changed the notes of my consultation with their Pharmacist which now just reads "GP says T3 not necessary"!!! I need to submit a formal complaint, but have really not got the energy/stamina to make further demands or get into conflict. I'm predominantly bedridden these past 5 yrs, which most Hypothyroid sufferers aren't. My life is extremely difficult. Most of the ME/CFS sufferers I know of aren't Hypothyroid, but a rare few are and suffer badly like me with conventional Drs. However, Hypothyroidism is definitely a cause of ME/CFS. The fact is that NHS Drs just think I'm mad. What they'll not acknowledge is that for 27 yrs prior to 2018 I held down a full-time Professional career, and was a very active Mum, and in my personal life too. Always on the go, including gym etc. I was always shattered since before my Hypo diagnosis in 2011, and even on T4 Levothyroxine.. but I figured this was my lot. Fast forward to 2018 and since, I get severe Post Exertion Malaise (PEM=Key feature of ME/CFS illness) from having a 5 min shower and climbing the stairs. It's a joke. The NHS has simply locked the door and thrown away the key. They won't work with me on any of this, and its been T4 Levothyroxine or nothing for 11 years now, nearly 12 now. Thanks again.
I understand....your journey / situation is very similar to mine. It's hard going and soul destroying.
In the end I had to self diagnose and self medicate.
I'm now aged 78 and the last 50 years have involved trying to discover why my health was slowly deteriorating and had reached the point where I could barely function.
My professional career came to an end, my social life became non existance but thankfully I have a supportive husband ( and now grown up sons living away) so my life was primarily based at home.
I told one GP that if she had no answers then I would find them myself.....she told me not to get upset and do what the doctors advised! Not on!!
So I started my research....
It strikes me you need more T3 and less or no T4....
Would you be prepared to self source and self medicate if the NHS won't help.
Medics are very good at calling collective symptoms "syndromes" but not much good at understanding why those symptoms exist....and we are just expected to suck that up and suffer as a consequence.
There are plenty people here who have both the knowledge and the personal experience to offer help.....they saved me!
Keep pushing your medics!
I wish you could come with me to my GP appointment!! So sorry for your struggles too 🫂 Thankfully you've had a supportive husband & family. Priceless. Sadly my ex-husband was always abusive the entire marriage & when I was finally diagnosed with Hypothyroidism he just shouted at me because I'd gained weight, and told me he was ashamed of me. The year before he'd threatened to kill me and was very nearly successful. I finally left him shortly after, taking my Son with me. Its been a very long, dark road but I won't give up or give up hope. Thanku ❤️
You asked if you should tell your GP... Yes.
In my opinion you should tell him/her. He's trying to complete a jigsaw with missing pieces. Also, if you are suddenly ill / have an accident the paramedics/hospital doctors can turn to your online record and will have reasonably up to date info. The jigsaw again!
There was a discussion about this a while back but I don't have the link. You'll find some under 'Related Posts' on the right of the post (on my screen).
Stopping T3 now wont be enough time for TSH to rise before thursday , that would take weeks / months .
and GP will be a mainly interested in TSH result (and is unlikely to even test fT3)
NHS won't be able to tell from the fT3 result that you are taking T3 unless it's over range , and then they will probably suspect you are, even if you deny it .
NHS guidelines mean GP's are not allowed to initiate the prescribing T3 on the instruction of a private Endo .. it so there's no point complaining officially regarding that , it's a waste of your mental energy, and won't get you anywhere ~ To be allowed to prescribe on NHS, the T3 must to be trialed by an NHS endo first, and then (if NHS Endo considers it's needed), they would request GP to take over prescribing (assuming your CCG/ ICB area currently allows prescriptions for 'new' patients ~ not all areas do at the moment some only allow prescribing to existing patients ~ and you would be considered a 'new' patient for NHS purposes , even though you have already had it privately )
i would ... continue taking your 20mcg T3 / 75mcg Levo as usual and tell the phlebotomist that you are also taking T3 so it's noted on the form (this may increase the chance the lab will test fT3 and gives an explanation if TSH is supressed) and wait to see what the NHS results are .. it's hard to know what 's your best plan of action going forward until you have results from 75/20 and know what gP's reaction to them is .
In future , you could always decide to buy T3 without a prescription if the ongoing costs of private prescription are unsustainable...... and if your fT3 results (after 8-12 hrs) do indicate a higher dose of T3 might be worth a try, then you could increase dose yourself without all the hassle or expense .
(p.s most people here would think 30 mcg was far too large an amount of T3 to start on. , but we're all different ).
The day before test take last dose T3 8-12 hrs before test , and last dose levo 24hrs before test. and just wait and see what the NHS actually test... if they don't test T3 , then get a private one done yourself (Monitor My Health is about £30 if you only need TSH /fT4 / fT3) then decide where to go from there ....
if NHS don't test fT3 and say they want to reduce your Levo dose due to low TSH , then ask them to wait while you get an fT3 test done first, so you know where you are. If fT3 / fT4 are not over range then you'll have a stronger argument to keep Levo dose as it is , even if TSH is supressed.
Thanks very much for your reply. I should've added that I have Hashimos & the faulty DIO2 Thyroid Gene (from 1 parent, which GP knows but ignores) + my TSH has been historically surpressed on T4 only treatment. Thanks again.
As you are on B12 injections are you taking a daily vitamin B complex
Remember to stop any supplements that contain biotin 5-7 days before ALL blood test (biotin usually in vitamin B complex)
As you have Hashimoto’s are you on strictly gluten free and/or dairy free diet
NHS won’t prescribe T3 based on private consultation with endocrinologist or doctor
There are a few NHS endocrinologist who will prescribe T3 on NHS
List of thyroid specialists and endocrinologists
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