These are my recent bloods on 100 t4 and 15 t3. I am due a review at the clinic but they are running behind so I have been given another t3 prescription but it came with a request to reduce t4 to 75mcg "to get tsh into range". I've been on 75/15 already and tsh wasn't in range and I didn't feel great. I have a few niggling symptoms and would love to get my exercise tolerance up. I refused to reduce t4 and said I would rather wait and discuss situation in clinic. My low tsh does concern me but it's always been low in relation to my t4.
Do you think I'd be better to reduce t4 and ask for increase of t3 to 20 or just try and stand my ground and ask for increase in t3 and stay on 100 t4? Test was 6 hours after t3 (I slept in and missed getting up to take t3) t4 was about 25 hours before.
Thanks in advance.
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The same endo team accepted my request that tsh be ignored and that I take full responsibility for this so that I can feel well and reduce symptoms. So don't reduce if you don't feel you have to
HiI haven't seen the sane one twice so there's no continuity. I've refused to drop t4 for now. I have no idea when I'll get my review. I'll just have to hope I don't see this one. He's the first man I saw who was deeply unpleasant to deal with. I just feel like I'm almost there but not quite! I will channel my inner Lalatoot and stand my ground! 😃
Yes I had the female last time and her letter was completely inaccurate. She also seemed quite scatter brained. I had to chase up my prescription three times!! I'm not going to judge though. She might be menopausal. Definitely not thyroid as she would be more sympathetic!!
I have found that a number of GPs don't have sufficient knowledge about how to diagnose or how best to treat their patients who've hypothyroidism. One in particular stated his rubbish response to me and I said to him "I am sorry doctor but that's incorrect'.
Initially on my first TSH which was 100 the doctor phoned to tell me I had no problems!
I am fortunate with the new one as he appears to have knowledge about hypothyroidism and has adjusted my dose. I feel well and am symptom-free on liothryonine (T3).
I don't understand why doctors who prescribe T3 have no idea that it lowers TSH often to the point of suppression. If they have no understanding of a medication they shouldn't be prescribing it.
If you increase your T3 your TSH will stay low. If you reduce your T4 and continue your T3 your TSH will stay low. You'll probably feel worse reducing your T4, your FT4 is already quite low in range and reducing T4 will likely take it even lower so besides not bringing your TSH into range you risk making yourself unwell.
Hi SeasideSusie That's what I was thinking. I've already been on 75/15 and it wasn't quite right either. I just feel close to being OK but can't seem to get over the last hurdle. I've been trying everything I can think of or have read about and I just keep coming back to my t3 being still a bit low. I am beginning to wonder if you can ever be symptom free or if I'm going to spend the rest of my life chasing something that won't happen. Not sure when the time to give up is. Arguing my point with arrogant, uncaring doctors is hard work! Thank you for your reply. You reiterated what I was thinking.
My Endo did the same... I felt awful and put my dose back up after 8 weeks! T4 below 50% miserable and my TSH unsurprisingly didn't budge at all 🙄
I wrote a letter explaining my actions and so far they are still prescribing what I want.. my last results were TSH 0.05 fT4 25% fT3 65% and they wanted to drop me from 100x6 T4 to 75! These results were after I'd reduced by 100 T4 per week...
I had already told them that my sweet spot is fT4 50%+ and fT3 90%
I then added back in the missing 100 T4 and upped T3 from 10 -15mcg... a month later and I was almost back to where I'd started before the meddling 🙄 and feeling a whole lot better
Luckily my early May appointment got moved to end of May and then we shall go toe to toe... bloods next week 🤞
Hi Eeyore100Your figures are not too dissimilar to mine. I have no idea when I will have my next appointment. Mines late too but I don't care. I'll just keep telling them I want to wait to speak to someone. I do think I need a higher dose of t3. My heart rate has dropped to between 51 and 55 beats per minute from 59/60. I'm no athlete. I used to be fit but the nhs ruined that! Are you on nhs? You seem to be able to tweak your dose OK? I can't do that. I'd run out of t3. Possibly not t4 in the shorter term but I would longer term.
Yes this is with an NHS Endo, keep good records of your RHR, Core Temp and BP so you can defend your case, this is how I justified raising my dose as all of these were dropping.
If they realise you are actually monitoring yourself closely and keeping your fT3&4 within range they really haven't got much of a comeback as they only look at bloods months apart and don't even ask about symptoms which just isn't good enough.
I was surprised how bad I felt when my fT4 dropped as I'm a bad converter (DIO2) then dropping my T3 back from the 12.5mcg I had been on to 10mcg it put me back to bed for most of the day!
I've managed to up my dose early by jumping in asap with my next prescription which luckily the pharmacist stocks for me and the GP has since upped my prescription ( I think they misread the Endo letter which said she wouldn't increase my T3 dose! Between them they are a shambles) I do have a stash of Tiromel but trying not to mix things to see if I actually can manage on Roma.
If you have enough stock I would up your T4 as this will likely also increase your fT3
HiMy rhr has dropped to about 55 roughly. Can swing between 51 and 59 but mostly low 50s. According to horrible endo it's because I'm hyper! Honestly he didn't even look at me. Looked at his monitor the whole time. The others are easier to engage with but this one is awful. How do you fare on roma? I get Morningside. I had thybon henning when I was private and that felt better quality and I felt I needed less on it.
If low 50's is hyper then where on earth are hypo's on the scale???
I don't like Roma as much as Tiromel (even with the lactose) but NHS won't prescribe Thybon Henning which is likely the best lactose free option.... the only other option has mannitol or if I can get my dose put up to 20mcg they would offer me Teva which sounds much like Roma... 🤷♀️
It seems better now I have my fT4 level back up which took the first month on Roma but it really needs another couple of months to give it a fair trial and settle down.
I initial experimented with more Roma as it didn't seem to be working but bloods showed it was, I was just suffering from the lag of low fT4 for 3 months 😕
It's so complicated. I just wish we could have more autonomy and control over our doses. Nobody is going to abuse it and make themselves over medicated on purpose. We all feel like crap....we are not going to make ourselves feel even more crap!! Thybon definitely better for me but nhs can't seem to get it!!
Do stand your ground. As SeasideSusie says they should know better. There is a pinned post of Tattybogle's about TSH - VERY USEFUL.
But coming from a different scientific discipline here is what I find appalling.
TSH is an Indirect measure. Why not use the actual thyroid hormones? Doh!
Afterall, TSH is NOT not a thyroid hormone 🙄
We know it is an indirect measure. There are numerous factors that can render it unreliable, including issues with
the H-P-T axis,
other medications,
when test is taken,
illness,
nutritional deficiencies,
damage to pituitary
etc etc.
From first principles it really doesn’t make sense putting so much ‘weight’ on the TSH measure (THE MOST UNRELIABLE MEASURE).
I’m always baffled- where is the scientific rigour? Can’t remember if I have shared my analogy that I made up to get it clear in my mind.
The neighbour analogy.
So I want to know how you are and I decide to go and ask your neighbour. Depending on your relationship with your neighbour, I could get anywhere from ‘I do not know’ to ‘oh yes they’re okay I saw them a few days ago’. The question has to be asked - if I wanted to know how you were, why wouldn’t I come and ask you directly? Quality of information from your neighbour can never be as reliable as asking you. 😊
There is absolutely no logical rationale for using TSH to dose patients. The real deal are your actual thyroid hormones and even more importantly symptoms as there is no one size fits all.
It’s as unique as a finger print. Being in range is not all there is to it. MANY Doctors think just ‘drop kicking’ you somewhere in range is sufficient. In fact, it is important to get you in the right place (if indeed the range represents your circumstances anyway).
There are limitations to any model and the blood tests with their ranges are no exception (if only the doctors did but know). The most important thing is that your symptoms are considered in conjunction with your test results, not ignored in favour of test results. Test results should never be prioritised over the symptoms
AND they should be calibrating the tests to you, not you to the lab work.
We are all different. So when a person says “oh doc I feel terrible!” and a doctor says “But I can’t understand it???? your bloods are fine?” That is a classic case of treating the lab work.🙄
I’ve been reading round the subject nearly 2 years and slowly getting up to speed and these three issues confound treatment.
Over reliance of TSH
Ignoring symptoms
Treating the lab work (not patient)
You can also read my bio, which I wrote as a case study, which may help to put things in perspective, Our treatments may differ but the issues surrounding TSH are fairly generic.
I have also written a few posts on advocating for yourself 😊👍
Hi Charlie-FarleyI love your analogy with the neighbours!!! That's very good. Funnily enough I said to my friend just this morning when I was telling her my predicament. I have seen three endos and not a single one has asked how I am. In fact this particular one who was horrible told me in my email to reduce my t4 to 100/125 alternating days. I had to go back to him and tell him that I was only on 100 which was then he told me to reduce to 75!!! He had no clue what dose I was actually on!! It makes a mockery of the principle of person centred care!!!
Probably a diabetes specialist - same amount of non-knowledge as a GP but an even bigger ego. Have a look at their profile on the hospital website - we must never mention names but I would wager a diabetes specialist 😱
I think you might be right. I did see one man who was nice and wrote that I feel better with my tsh suppressed. Think I'm going to have to dig that letter out!!
I think there should be a posse of advocates to take people like me who struggle to advocate for themselves. I can do it no bother for other people but I find it hard to do it for myself!!! I know its wrong to treat labs not people. I just wonder what happens to these doctors to make them think it's OK to do that!!!
It's unconscious - they all learn (or should I say not learn) the same stuff. I get the impression its more learning by wrote than critical thinking and certainly no thinking out of the box. This is why it is so difficult to get through to them.
The attitude is "Well we all know XYZ so therefore if we are all in agreement we must be right."
Talking to a person who trained as a vet - very good one actually, Doctors don't have to learn basic stats so don't understand basic stats - yet it is the stats that generate the ranges for the blood tests - so they don't understand the limitations of the model and that's why they drop kick people into the range and say "Your NORMAL"🤪 RED FLAG😱
Excellent analogy 👏 I shall hold firm as I found my sweet spot before getting involved with the NHS Endo so I know where I'm aiming... just need to educate them 😏
I did point out in my letter to them that I refuse to be treated based on TSH and shall be guided by fT3 &4
Thing is the axis will only work if everything works so if there is a problem with pituitary or hypothalamus, the feedback loop is corrupted. It may still work (in a fashion) but by no means should a pituitary hormone be used to determine efficacy of thyroid hormone replacement. On first scientific principles it should never have been chosen. It was a crude indicator for diagnosis of Hashimoto’s back in the day and even then missed a sizeable minority who’s TSH just never got that high. Who ever decided it was ok to use as a management marker should be sat in the corner with a dunse cap on. Thousands of peoples lives has been impacted as a result.
Once upon a time, when my meds had been lowered (yet again), I felt miserable and was sent to a rheumatologist, because I had "fibromyalgia". The rheumatologist, looking at my blood results, said, "You are hypo" (which I already had tried to convey to the prescribing doctor). Just to show my "ignorance" I responded that I was confused because my TSH was perfect (because that was what I had been told) and got a response that I will never forget because it was so right and, unfortunately, so rare. "We are not accountants. We are doctors. We don't balance numbers. We treat people." I think that has become a lost art. Treating numbers takes less time and brain power than treating people. It therefore has become the standard. But it really should not be. So now I always ask myself whether I'm listening to an accountant or a doctor. My decisions will be based on my findings.
Your results are very similar to mine. I have been asked to lower my t4 to 75mgfor 3 days and take 100mg for 4 days. I take 15mg t3 in addition. That was 2 weeks ago, my symptoms have all returned. I am with a private endocrinologist. I do not know what else to do. My ferritin levels are very low . Please can anyone recommend a good vit c to aid iron absorption. 🙏
HiI've already been on 75/15 and it wasn't enough for me either. My ferritin is low but nit out of range. I can't help with the supplement but even having a drink of orange juice with meals can help with iron absorption. I am finding it really hard to raise my ferritin with food though. Hopefully someone will chip in. Or maybe start a separate post with that title?
Thank you for sharing your experience. I have gained quite alot from the responses. The doctors do not seem to know what they are doing . I have been having orange juice the big issue is I am vegan can't have any red meat . I will start a separate post. My ferritin is not out of range but extremely low. I think it is 35
Hi cbraffeI think as a vegan you will find it difficult to get iron up but not impossible. A separate post will be a good idea. There will be others who know more than me but I know how difficult I have found trying to get Ferritin raised and I eat meat. Yours is very low. It can't be far off Deficient?? Have you asked gp to run bloods?? I know that's easier said than done but sometimes you have to make a nuisance of yourself. I did. I think I have my own ring tone at the surgery 😅 but it helped. If I'd waited for gp to help I don't know where I would be if I'd not found this forum and gained knowledge to fight my corner. I just struggle a wee bit with the consultants.
I did a blood test he said it is low, "if I want I can buy iron tablets". My sister suggest I get iron infusion privately. That is what she does. My dad almost died, he has no thyroid like me and was taken off medication by his doctor and since having a thyroidectomy he is on 50mg levothyroxine for the past 10 yrs . He lives in Africa . This condition is not understood at all. I am a social worker and most my clients with dementia are on levothyroxine which mean the lack of proper treatment has long term effects
HiI too work in health and social care and have noticed to poor health outcomes in those on tiny doses of levo. I often come back to the office and tell my colleagues how much it worries me!!! I'm glad it's not just me. I met a lady the other day who must be about 19 stone on 75mcg. She is also on amytriptiline, gabapentin blood pressure stuff and antidepressants and a raft of other meds. It's ridiculous. I said she needed to get back to gp o review thyroid meds!
It is sad. They are killing us slowly. I have several who have depression, breathing issues, high cholesterol, heart conditions and the most worrying one is dementia. We need to continue standing up to the doctors and take matters in our hands
There are aware of the long term effects but definitely do not care. It took 8 years to get a diagnosis. I was bed bound for a year and felt suicidal yet my GP kept telling me I was spoilt because my husband used to follow me to all my appointments. I was so anxious and had lost 3 stones in weight and could not eat anything. Yet my GP said it was all in my head. It was only when I met a Nurse I'm A&E who had a thyroid condition she just looked at me and asked me whether they had checked my thyroid function. I could barely roll my eyes as I have severe thyroid eye disease and had a runny stomach for a year. I was being tested for stomach cancer, MS but no mention of thyroid
What an experience! Lucky you met that nurse! Cant believe thyroid was never mentioned. I was diagnosed quickly. Thyroid was investigated as part of the bloods i had done at the start. I got worse after i went on thyroxine. I think the damage being undermedicated does takes a long time to undo if it ever gets undone! I consider myself lucky that I can access the research and have found this forum. I see so many who can't and it makes me want to cry. I don't understand why the medical profession think thyroid is an easy fix!!!! I mean, they must notice a pattern of behaviour with patients. We can't all be not taking our medication properly!
I was asked to lower my T4 too because my TSH was sitting pretty at 0.01
Within 3 weeks I felt like I’d hit a brick wall (probably the neighbour’s in the analogy above 😉). I put it straight back to where it was and told them never again.
This year my TSH reached the dizzy height of 0.02…….my endo was delighted. My FT4 and FT3 had dropped lower and I felt rubbish. Due to me saying I had days where the fatigue was so bad I couldn’t function and my migraines had stepped up a notch they agreed I could up my T4 by 50mcg per week. (That’s rounded each day to 100). There’s been improvement, it’s not amazing, but at least the migraines are less severe. I bet in my next blood test the TSH will be 0.01 and they will be moaning again.
The issue I’ve read is that our TSH is under 0.03 if it was that high they would be more inclined to leave us alone. But obviously some of us just get a very low TSH when on T4/T3 combo and there’s nothing we can do about it 🙁
I hope you are able to get on the right dose and feel more human soon 😊🧁
Hi LovecakeMy tsh went low when 125/150 but I was still symptomatic with headaches, palpitations loads of things. When I told the horrible endo that I just wanted to be well he said "so do we. ....to a point" then suggested that I might want to take t3 until I was 50 then stop!!! I have two years to wait till I'm 50. I'm not sure whether I'll be fixed or life won't be worth living!!! The anticipation is nail biting! Maybe tsh goes up at that age,!!!
My TSH is 0.17 was asked to reduce my t4 to 75mg on alternative day with 15mg t3. I have been in bed freezing cold with aches and pains all over and the worst joint pain. Sometimes I feel like no one understands or cares
I know. It definitely feels like the medics don't care. But people here care so that's good. And unless you have this it's impossible to know what it's like. I don't know how often people respond with "I know, I never slept last night" when you tell then you are tired. It makes me want to smack them and shout that I slept 10 hours and I'M STILL B@£#&Y TIRED!!
This forum is my saving grace . Without people on here I would not know where I would be. I was put on antidepressants and it only when I joined this forum that I took matters in my hands . I am alot better pay a private endocrinologist
That sounds like me except I refused the antidepressants because I told the doctor I was ill not depressed. This forum is a lifesaver. I don't do social media at all so it took a lot fir me to join. This is such a safe space and you know that there are others who struggled like you. It's a great resource!!
When I can't sleep I come here and always feel better after reading someone's journey. Sending you hugs . I wish we had a met up support group. There are individuals here who know about me more than even my family
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