I know that this seems to be the current dosage guidelines, and I've read it enough times on here, but I'm clearly not putting quite the right thing into the search, or into Google, as I'm not coming up with details about it on NICE or similar.
Was hoping to print out a couple of articles for my Dr when I see her next Friday, in a bid to stop her decreasing my meds (TSH has gone down out of range and she has said before she won't support any of my levels being out of range).
Not putting my levels on here as did a long post the other day, but if anyone can help me out with a link or two that would be fab!
Thanks in advance, and Happy Easter to everyone
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Fluffysheep
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1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Note that this is suggested as a "starting" dose.
Then read
1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
So dose doesn't necessarily stay at 1.6mcg per kilo of body weight, it's adjusted to individual needs, there is no one size fits all.
PS - don't forget, as I mentioned in reply to your previous post, you need Ferritin retested because if this is still low then thyroid hormone can't work properly, it's recommended to be half way through range.
And thanks for the ferritin reminder, I need it with my brain fog!! Planning on making notes and doing some print outs. Trying to remain positive she'll listen to reason............!
I usually take my husband with me, because he has a very scientific mind and can also remember things, which I unfortunately can't these days. I read everything on here and totally understand it, but then as soon as I have to explain it to someone else I just forget, and I really struggle to articulate myself properly. That's why although I'm trying to stay positive about Friday, I don't really hold out much hope that I'll be able to get across to my Dr why my TSH being 0.02 actually isn't that much of a problem and that I could still do with an increase in meds. Because of COVID-19 my husband obviously won't be coming with me this time so wont' be able to help with that. I will do my best and arm myself with notes and print outs, and see what happens.
When i tried proving my point to GP with research papers he said "i,m not going to argue with you , i have to go by NHS guidelines".
But when i said that in the past when over-medicated i'd had a fine tremor and i would recognise it if it happened again and of course i would reduce dose myself ,because i'm aware that the risk of Atrial Fibrillation causing strokes was what worried him,
he was more receptive.
I had also just told him that being on the reduced dose he'd put me on had led to me being totally constipated for 3 weeks and he said "i don't want to make you unwell, so i'm going to put a note on your records that you understand the risks,What dose did you feel well at? take that and see me again in 6 months".
So i wonder if giving her a way to get " off the hook", risk wise, may be more use in getting what you need.
It may also be of use to ask directly if they have ever tested FT3 when they have been worried that you are over-medicated.
I was very surprised to find in my notes that mine has been tested 5 times between 2014 -2018 when my TSH has frightened them , (usually around 0.04) .Sometimes it looks like the senior GP has requested it ,sometimes i think the lab has done it automatically because of the cascade protocol.
You could try saying you would be willing to reduce dose if she could show you that your FT3 was above range ........ then they'd have to test it! .
I told him i'd been at my best over the 9 years that my TSH was around 0.04 ,felt over-medicated when it dropped to 0.01 , and had twice been made ill by dose reductions putting it up to 0.55
Anyway i suppose i'm saying it may help more if they believe YOU understand the "risk's" ,
in a way that doesn't challenge their ego.....!
If you think you wont be able to keep it all together in a stressful, emotionally charged ,10 minute appointment~who can!~then write your points down in a brief list and take it with you.
( I did this once, scribbled on the back of a shopping list, and at the end of the appointment she asked if she could keep it to remind her ~ and lo and behold~ 3 years later i find it has been scanned into my notes saying "patients notes about herself" )
you have a caring practice..you seem to know how to ask for what you want but nhs guidelines have altered as t3 is not often prescribed as part of the prescription. mostly patients are given t4 and this has been difficult for people who cannot convert t3 from t4. so many people complain they are undermedicated and their dose is not working - their hair is falling out and they are tired and gaining weight. well done you for adapting to the new guidelines but many people may need the t3 but endocrinologists wont prescribe it. this is surely a huge error to presume that everyone will react the same to their medication. bot much the patient can do about it here.
Sorry if i sounded smug there, didn't mean to, just trying to be helpful.
But....Fluffysheep was talking about thyroxine not liothyronine.
I know how hard it is to get T3 in uk , i am in NW england on NHS and have never had any, although i would dearly like to try some.
I have only ever been given T4, hence my surprise that they have checked my FT3 so often, despite never having told me of its existence for 17 years ! .But by doing that they have proved to me that that's what they check when they are worried. so now i can use that to my advantage if they try to lower my dose because they are freaking out about my TSH.
I didn't get them to check FT3 ,i discovered they had ,when i got my medical records recently .
The conversation with GP that i shared above took place 14 days ago, so current guidelines apply, for what they're worth!
Sadly, despite a TSH that many on here would be envious of......I too , know all about under-medication.
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
I´m afraid I won´t be of much help because if your doctor believes in the "Tyranny of the TSH", not much will make her listen to reason...of course, hypothyroidism should be managed by keeping an eye on the actual thyroid hormones - free T3 and free T4 - but not many doctors seem to know that.
I have come to believe that the "you should take 1.6 mcg of levo per kg of body weight" dictum is about as valid as statements such as: "everyone feels better on NDT" or "nobody should ever have a below-range TSH".
As others have pointed out, 1.6 mcg per kg of body weight could be a starting dose, not necessarily your maintenance dose.
If you are a poor T4 to T3 converter, taking 1.6 mg per kg of body weight may not do much for you.
The only dose of levo that made me feel even remotely human was 2.2 mcg per kg of body weight...which of course suppressed my TSH <0.05, but my doctor at the time was fine with it as he wanted a TSH <0.1 in Hashi patients (as he claimed the TSH is what triggers autoimmune activity...).
Funny that they don't necessarily use the same logic for other illnesses. For example, can anyone tell what the practice guidelines are for diabetics? What is the STANDARD dosage of insulin on which everyone does just fine?
True! Plus, maybe 1.6 mcg of levo per kg of body weight works in someone with optimal T4 to T3 conversion, but what if conversion is impaired...? Also, doctors will often prescribe a dose of levo that keeps the TSH in range so that the doctor can feel comfortable, regardless of how the patient feels. Are there any other illnesses where the treatment goal is more about keeping the doctor happy than about symptom-relief...???
I know it can be used as a starting dose. Unfortunately I was only started on 25mg last year, so it's taken me almost a year to work up to 150mg, and my results show that there is room for me to have more thyroxine (and I'm pretty overweight, so my starting dose should have been 175mg!). I wanted to use it to show the Dr that really, in a bid to persuade her to increase my dose.
Hi! Be grateful you started so low. My doctor put me straight on 150mcg and the anxiety, tremor, palpitations, fast heart rate etc were horrendous. My body didn't know what hit it. I've been left with PACS which are really annoying.
I remember seeing a endocrinologist when I first got diagnosed and I mentioned to him my sister (also hypo) who's probably half my weight takes 50mcg so I should probably take way more ? He said it doesn't work that way 🤷♂️.
Started me on a ridiculously low 25mcg, I'm now on 100mcg and my levels are at the top end.
A private gp was the one to diagnose me just based on my symptoms, I went to him after I experienced some shortcomings from my NHS gp and the NHS testing. He's been very supportive of me and I've had no problem with increasing my medication with him.
I'd recommend seeing a private GP, if your NHS GP isn't being supportive, as from my experience private GP's aren't overwhelmed like the NHS GP's and take the time to listen to your problems instead of trying to get rid of you after 5 minutes of stepping in the door.
P.s I'm sure the vast majority of NHS GP's are excellent, even my private GP was in the NHS for decades which is where I'm sure he got his vast experience from
Thanks everyone, this has raised some interesting discussions. The only reason I wanted a print out showing that this was the suggested dosage is to show the Dr that with my weight (probably around 17.5 stone ) combined with the fact I am still massively symptomatic and my T4 and T3 are still in range (and nowhere near the 75% through that is recommended) that despite my TSH being 0.02 there is still room for her to increase my meds. I doubt she will, as she, like most others seems to believe that TSH is the be all and end all, but I can try.
I´ve been wondering if everyone who has not had a TT still produces some hormones; what about people such as myself, with Hashi´s, and TSH-suppressing doses of NDT/T3...with a completely suppressed TSH, how likely is it that our thyroid glands still produce some hormone...?
Hi there, if you are after some research on T4 dosing the paper below is quite informative. But all these types of study are based on patients having total thyroidectomy.
To be honest best advice I ever got was from seasidesusie. She advised me to not get hung up on the right numbers for tests or the scientifically suggested doses, but rather to go on my symptoms. I’m an overweight middle aged male and 1.6mcg per kilo would give me a t4 dose of about 150mcg. On that I would have over range T4 and be a juddering heap. I can’t tolerate more than 125mcg. I’d really recommend going by how you feel and taking it slow to find what suits you.
Sorry your GP won’t help you base treatment on how you feel. Their advice does vary, my usual GP wasn’t in so I had to speak to two GPs for something unrelated to my thyroid this week. Both noted my low TSH in passing, one said your TSH looks under control the other said you look too low. Luckily I’m under an endo so I can just direct them to him. Have you considered an endo referral if you feel better with an atypically low TSH? They might support you.
Good luck in getting your health back.
Michael
2013 Mar;205(3):360-3; discussion 363-4. doi: 10.1016/j.amjsurg.2012.10.015. Epub 2013 Jan 28.
Levothyroxine replacement dosage determination after thyroidectomy.
I would love to go just on symptoms and how I feel, but it seems that most gps don't unfortunately, and they get very hung up on numbers. That's why I'm trying to show that with my bad symptoms and high weight I can afford to go up with my dose of thyroxine.
I can't really fault my GP, it's not like she is the only one like this, the majority of them are unfortunately. Despite this she is very approachable and actually listens, she is the head GP in the practice so I'm not sure I'd get different advice from anyone else there.
I did actually see an endocrinologist early on when I first got my medichecks results and I managed to get a different GP in the practice who was clearly clueless about the thyroid to refer me. I was seen once, and it was completely pointless. What we discussed in the appointment wasn't what was said in the letter he sent to the GP. He wanted me to stay on 50mg of thyroxine and was trying to suggest my symptoms could be other things. Luckily my GP was happy to disregard and keep upping my meds, but only on the basis my TSH and T4 stay in range. TSH has finally gone out of range which is why I'm worried about my appointment on Friday.
Hi Fluffysheep, sorry, yep I totally get that you want evidence for your GP and you already know what works for you in terms of dose. It is terrible that you have to push so hard to get the right help and that consultant endos haven’t really helped you either. I’m fairly happy with my medical management now but it took along time and I’ve been lucky to have good medical help. I had three endos, the first specialised in thyroid problems, completely accepted some people struggle on T4 and arranged a T3 trial. She moved on and was replaced by a nice guy who told me he knew nothing about T3 and had no idea about dosing. He then moved on too and was replaced by a very experienced diabetes consultant who was completely guided by standard medical advice and said T3 is not helpful and if I still had symptoms on T4 only this could not be attributed to hypothyroidism if my TSH was in range. Even if I don’t agree I accept this is what his guidelines tell him. I liked all three and knew they were aiming to do their work professionally and appropriately but it’s hard when they don’t agree with each other or they don’t acknowledge the patient’s experience above a TSH score. I used to put total faith in doctors but hearing people’s experiences here I can well understand how some people on this site become their own expert and take charge themselves and source their own T4, T3 and pay for private testing.
On a less despondent note I was wondering if the article by Dr Toft saying some people do better on a very low TSH would be another useful piece of information for your GP? I think there is a link to it on the thyroiduk websites.
I have been on t4 since 1992 and have never heard the dosage being based on body weight. It is more of how you feel. The doctor will get a dose that seems good. Then regardless of the numbers (within reason) they will ask you how you are doing, do an evaluation and then adjust accordingly. I have been to about a dozen different specialist over that time period
It has been going round and round for many years. The latest NICE guidelines seem to want to push it.
I produced a spreadsheet which calculates a dose using several formulas. Therefore, it suggests several different doses. Which rather undemrines the whole concept of calculated doses - if they can choose different formulas and come up with different numbers.
hi Scrumbler, After my thyroidectomy I was forced to wait 2 weeks before Endo would prescribed any thyroid meds and once the Endo prescribed it he put me on 125mcg synthyroid and when 125mcg failed to get my TSH to drop my TSH was 25 on 125mcg and he then added another 50mcg every Sat and Sunday and still it only dropped my TSH 4 ...... I blame this entire process for every pound I gained and pain I collected... I fired that slob ... he always had food on his shirt and a desk that was so messy it stressed me out... if your desk is a pig pen as a doctor so is your care! Really hated that Endo.... lots of bad memories
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) combined with the fact I am still massively symptomatic and my T4 and T3 are still in range (and nowhere near the 75% through that is recommended) that despite my TSH being 0.02 there is still room for her to increase my meds. I doubt she will, as she, like most others seems to believe that TSH is the be all and end all, but I can try.
Does anyone ever loose weight once on thyroxine?
Increasing Thyroxine Dose Question.
Would taking Thyroxine if not needed make you hyper
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