I started a trial of levothyroxine in may this year after a medichecks test showed borderline hypo. I did the test because I was severely symptomatic. I thought, at first, that it was due to CFS/ME getting worse(diagnosed in approx 2019, but i think now that i have had an uat for years. I looked at past tsh results over the past few years and readings have always been between 2.8 - 3.8). I showed results to my gp who ordered further tests and then offered a trial of levothyroxine in May 2023.
I take TEVA 50mcg levothyroxine tabs. (edited to add dose in)
I take them in the early hours of the morning (3am-ish) with just water.
I have breakfast and omeprazole meds and coffee at about 730am.
I’m not taking any vitamins/supplements at all. Don’t know if my results are optimal or not.
All blood tests have been done as per protocol from this site, except this first one (18 May) which was done after eating in the afternoon.
18th May :
t4 9 (7-17)
tsh 4.73 (0.20-4.50)
23 May started levo 50mcg
had weird hip pain at first on levo, but started to feel better about 5 weeks in, some symptoms subsided/eased.
18 July:
t4 11.4 (7-17).
tsh 1.71 (0.20-4.50)
TPO 4 Kiu/L (0-9)
total 25 hydroxy vit D 70.1 (50 - 250)
serum folate 18.2 ug/L (3 - 20)
serum vit b12 569ng/L (145-910)
serum ferritin 30 ug/L (10-150)
started to feel unwell again (joint pains and cramps feeling hot/cold, dizzy, mouth ulcers, stiff jaw) did a medichecks finger prick test:
22 Aug 2023:
t4 14.3 (12-22)
t3 3.5 (3.1-6.8)
tsh 2.830 (0.27-4.2)
tgab 262 (0-115)
tpo 12.5 (0-34)
NHS test 4 Sept 2023:
t4 9.8(7-17)
tsh 1.96 (0.20-4.50)
they don’t do the t3 on follow up tests and i can’t afford to carry on monitoring thyroid tests myself with the fingerprick tests
these latest tests have been reported as “normal.” My symptoms have settled down again, apart from stiffness/joint pains. Not sure what to do/what might be happening. Grateful fir any insights or advice
Thanks, JoJo x
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Thank you so much for your reply. Can you suggest the best way to approach a gp to ask for an increase? After my medichecks test when i felt things were sliding backwards I messaged the practice asking for an increase and then a triage nurse rang me back and kept going on about how the last results were “normal” and they wouldn’t increase and then got all shirty with me when i asked if a gp had seen my request, eventually she agreed to let me have another nhs retest to see how things were. Gawd. It fills me full of dread.
50mcg levothyroxine is only the standard STARTER dose
Levothyroxine doesn’t “top up” failing thyroid….it replaces it
Most people on just levothyroxine will need to be on high enough dose to bring Ft4 up at least to 70% though range
guidelines on dose levothyroxine by weight
Approximately how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thank you for the info. I will work my way through the links. Lots to think about. I’m not vegan or vegetarian, but i hardly eat any red meat. I’m 54 on sequential hrt. I think there’s a lot of room for improvement in my diet.
most important thing is to get next dose increase in levothyroxine
Print out guidelines on dose levothyroxine by weight
Email/post letter to GP saying you had significant benefits starting on levothyroxine but that some hypothyroid symptoms are now returning…..that your Ft4 is now only 28% through range and you would like to trail a dose increase in levothyroxine to 75mcg daily
Include copy of test results that shows you have high thyroglobulin antibodies
Conclusions: Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden
Thank you so much for this!I love how you have worded that. I know I probably sound like a right mardy, but it’s so hard to know how to approach these things with the triage nurses and the gp. I sent the medichecks results through with the tgab results last time, but to be honest i don’t think the triage nurse even looked at the results and she got really nasty when i asked if they had been shown to the gp. It was as if I’d slapped her with a glove and insulted her mother!
Oh I just saw this, sorry. I’m on Omeprazole for severe acid reflux that started a few years ago. I had a gastroscopy at the time that didn’t show anything. Every year I try to come off it, but by lunch time on the first day the acid starts up! Can low stomach acid actually be a cause of reflux? Will having a look at the links just now. Thanks for sharing all your knowledge and info.
Blimey!!! I didn’t realise that! I’m sending my email tomorrow asking for a trial increase from 50mcg to 75mcg. I’m absolutely dreading them saying no. I’ve worded it to include the info you suggested. I wanted to just ask about tgab and “symptom burden”…I think I understand what it means…seems obvious/self-explanatory…does it just simply mean more hypothyroid symptoms? Thought I’d just better check…in case it means something totally different🤣
Do you think the gp will accept the medichecks results that say positive for the tgab? Or just fold it up, along with my email, and use them to prop up the wonky table leg in his office?
Some are happy to accept…others take offence ….then propping up table leg more likely!
My current GP very happy to accept private tests …..long story short…when we moved area …new GP
I explained I normally did private testing as I am prescribed T3 on NHS alongside levothyroxine and even though NHS prescribing T3 …..NHS lab doesn’t usually test Ft3
“no need” GP said….”NHS will definitely test it all and all four vitamins”
So I had NHS test …..lab only tested TSH ….nothing else
So since then at my annual review i give GP copy of my full thyroid and vitamin private test results and they are added to my medical record …..I haven’t had NHS test in last 7 years
Private test includes TPo and TG antibodies……NHS only ever tests antibodies once ……both GP and endo fascinated to see how my antibodies have slowly reduced at each test
TG antibodies seem to reduce as TSH reduces (my TSH on T3 and Levo is completely suppressed)
TPO antibodies seem to reduce cutting out inflammatory foods ….in my case that’s strictly gluten and dairy free
I’m not even sure which Gp it will got to if/when it gets past the triage gatekeeper. Although mentioning antibodies…and an ultrasound scan might shift it along the conveyor belt a bit. To be fair, whenever I have managed to get past the first level of hell - Triage, the gp has always been lovely…that said….you never know!! Your G.P sounds great. Your tsh is completely suppressed! Wow…and no one moans about that?
from PULSE magazine for GP's... The article is available from ThyroidUK
If you want a copy of the article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
Thank you! Just emailed them for a copy. I’d love my free thyroxine to be in the upper part of the reference range! I think I’d be bouncing off the walls of my life and bloody loving it!
Sent my email…received a text…I have been summoned to the surgery…appointment next week. Arrrghhhh! I don’t know why the doctor just can’t ring me. The saga continues. Next riveting instalment - next Wednesday.
I have been thinking about Tgab, but just read this on Monitor My Health while looking at advanced thyroid testing and it has confused me as to what they are getting at. What do you think?
“ Why do you not measure thyroglobulin antibodies?Thyroglobulin antibodies also known as anti-thyroglobulin antibodies are another test related to the thyroid. Studies have demonstrated that TPO antibodies are linked to an underactive thyroid. The same studies found that thyroglobulin antibodies were only associated with an underactive thyroid in people who also had positive TPO antibodies. When thyroglobulin antibodies were found on their own they were not associated with an underactive thyroid. For this reason, we do not feel that measuring thyroglobulin antibodies adds any information above measuring TPO antibodies alone and so is not of benefit to our customers.”
Thank you! I actually bought some of the vit d mouth spray 1000iu per spray, but didn’t know whether to start it or not after i got the results. I’ll start it tomorrow.
Your tgab results show you have autoimmune thyroiditis or hashimotos as it's more commonly known. NHS don't normally test those antibodies just TPO if I remember rightly. You should discuss that with a GP, not the receptionist. If SlowDragon's advice doesn't work, ask to be referred to see an endocrinologist. Teva seems to be marmite, people either love or hate it so that's also worth remembering when you've had your increase and you're still feeling symptomatic with better numbers.
Thank you for your reply. The tgab was found on the medichecks test and the nurse i spoke to last time didn’t take kindly to the fact that i’d had tests done with medichecks, she just ignored what i was saying about how i felt and kept rabbiting on about the numbers being normal. I’m soooo tired of having to argue my case with people. I had all this thpe of malarkey when i started hrt. It’s soul destroying. I was diagnosed with cfs which i think was really autoimmune thyroid disease, but they treat me like a hypochondriac when i call which i very rarely do. I’ve suffered in silence for a long time thinking oh well, must all be due to Cfs! It’s so tiring isn’t it. x
There’s almost 2 million people in U.K. diagnosed as being hypothyroid….about 90% caused by autoimmune disease
And 90% are female
This is not a rare disease…..but rarely understood or treated correctly
Please consider signing this Government petition for much needed funding for helping to get better testing, treatment and understanding of thyroid disease
Petition started by forward looking, pro T3 U.K. endocrinologist
It really is tiring, I'm in a similar position and was diagnosed with fibromyalgia when in fact I was suffering with low T3 syndrome due to poor conversion. I first had any antibodies checked when they were investigating the fibromyalgia 10 years after finally being diagnosed hypothyroid with TSH of 150 after 13 years of testing and being mostly borderline due to being symptomatic, despite the first test I ever had when I was being investigated for infertility showing a TSH of 18.6 and in range T4. They didn't routinely test fT4 or T3 of any kind 30 odd years ago. I also followed the advice of this fabulous forum when I joined just over a year ago (many years late to the party) and had my TPO and TGAB checked privately a few times and they have never been raised. However, 20% of autoimmune folks are seronegative and given I have other autoimmune diseases the consultant rheumatologist thought that was probably me as something should have been positive. The antibodies only have to be raised in one test to prove autoimmunity. I would definitely ask for a referral to see an endo and bypass the jobsworth nurse. I'm having similar issues with my HRT too though may actually have found a doctor who is actually listening to me. Time will tell though, I don't want to raise my expectations and end up disappointed again. I'm prescribed T3 as well as T4 so my TSH is always suppressed and that causes all sorts of drama every time I get tested so I'm trying to avoid it as much as I can, I test at least 3 monthly privately at the moment trying to find my optimal and check for sex hormone changes making any difference so not worried about suppressed TSH when my fT3&4 are well within range. You definitely have to learn to become your own advocate and expert in your conditions, unfortunately I only did following the fibromyalgia diagnosis as I didn't believe it wasn't something else causing the symptoms. Best of luck and keep fighting the good fight. 🙏💜
Thanks for your reply FAB-jellybean. Yes, I’ve had a diagnosis of Fibro too before the CFS diagnosis. I’ve never really accepted these conditions and like you - always felt there was something else causing the symptoms. I’ve considered hypothyroidism many times, but always been told nope…all good! I’ve felt ill for years now and had tsh tests down the years that were all “normal” although showed a steady rise from 2.6, 3, 3.6, 4.3 and then recently 4.7 when they offered me a trial of levothyroxine. I felt bad enough then so don’t know how you managed with 18.6 and 150!! I know exactly what you mean when you say “i don’t want to raise my expectations and end up disappointed again” I’ve got a face to face appointment next week after I sent an email asking about the tgab result and if i could possibly, maybe, pretty-please, beg-like-a-dog, dare-to-suggest to increase my dose. Dreading it, but I’m not taking any crap. Usually when I go in for one thing they derail the conversation and start going on about stopping hrt or some other blah-blah-blah. I lay in bed last night running through all the possible scenarios for the appointment next week based on past experience and in my mind not one of them had a good outcome. There are so many horror stories about people suffering for so long and battling to get the correct treatment, or feeling great when they start treatment only for everything to hit the skids again, which is where I am now. I’ve lost faith in doctors, nurses, receptionists. I don’t trust any of them now and actually think some of them are not fit to be around people at all!
I hate to think how many people are in the same position and yes I think many forget that they should "do no harm" and what that actually means. You should take someone with you to your appointment. I've found since the issues that caused the fibro diagnosis that if I take someone with me (particularly if I'm asking for something specific eg a change or a referral) I get what I want, albeit grudgingly. I had a really horrible condescending appointment with a junior endo when I was trialling T3 when I went alone. He then wrote to my GP telling them he wouldn't increase as he believed my TSH of 6.9 was due to me willfully not taking my medication as prescribed (not true) and not because they'd dropped my Levothyroxine from 150 to 100 mcg to add 10mcg T3. So I took my friend to the next appointment ready for a fight. This time I got the actual consultant and put my case calmly but assertively and he said ok, no problem. I got my increase to 20mcg T3 and he wrote to my GP telling them to prescribe it as I obviously needed it and to monitor me as usual. My friend didn't need to say a word. Her just being there made all the difference. And that's just one example. You could get a friend or family member to carry a printed copy of the relevant NICE guidelines to refer to if they try to derail you again. Most of the time the other person doesn't have to say anything but a quick question or comment to steer the conversation back on to your path helps immensely. I've had to do the same at my daughter's appointments and if I'm not there, they just dismiss her as being young and stupid. And if all else fails bursting into angry tears also helps! 😂 Best of luck, let us know how your appointment goes! 💜
I could take my husband but he has a way of making things worse. He’d probably end up telling the doctor his own sob story about how bad it is being married to me with my never-ending list of ailments!!🤣🤣. Blimey, the endo writing to your gp to make out you were purposely not taking the meds!! Gawd, It’s the absolute stuff of nightmares that is!! That’s what makes me worry about bursting into tears, or getting irate in any way…they might start trying to make out it’s all mood-related, in my head, and put me on antidepressants instead of upping thyroxine. I also worry about them saying “oh, forget about the antibodies” as they brush them under carpet…and then trying to pick apart the hypo symptoms and saying it’s a mash-up of these thirty other undiagnosable conditions instead of what’s staring them in the face. It shouldn’t be this hard should it. I’ve decide to try and forget about it and go with the flow, and if it goes south to politely demand a referral….onto to the next level of Hell - “The Endo” so I can at least be belittled and patronised by a specialist in belittlement-ology 🤣🤣x
I would take him and tell him exactly what you need him to do, even if that's just sit there and don't speak. If you get the correct treatment you'll feel much better so his life will be easier too. Him just being there makes the doctor more accountable. And you're probably right about them trying to give you antidepressants rather than upping your levo if you cry. But asking for a referral if they don't feel comfortable in dealing with autoimmune thyroiditis effectively is definitely a good idea. Will make them realise you're questioning their expertise and will either up their game or do as you ask. Wishing you all the luck in the world.
Aww, thank you so much! And also for sharing your experience and advice. I’ll take him and tell him what I need him to do. That’s a good idea because I’ve never really had that conversation with him and he does look at things differently - doesn’t really worry about anything, lives in the moment.
Just read the Nice guidelines again and it seems that there isn’t a titrate-by-weight option/increase dose option . It seems to just say that for subclinical( like me) then do a 6month trial and if symptoms do not improve(mine improved then started to creep back) remeasure tsh (mine is now 1.9, although not at the end of 6 months yet because I only started in May) and if it remains raised adjust the dose. If symptoms persist when tsh is within range then consider stopping.
The weight-based approach is, in my view, very questionable.
But, once you are on levothyroxine, there is no reason to use it - at all. About its only possible use would be to raise questions if an individual's dose is much less or more than calculation implies. But useless for dose adjustment.
helvella's calculation document and spreadsheet can be can be found by following this link:
helvella - Estimation of Levothyroxine Dosing in Adults
A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.
The weight-based approach doesn’t appear to be even applicable according to the guidelines for people, like me, who are classed as “subclinical” with readings over the reference range, but less than 10. Also, the way I read the guidelines it doesn’t seem to give an option for increasing the trial dose if the tsh is within the reference range on restesting. My tsh is within the reference range now even though my t4 has dropped again from 11.4 to 9.8. Am I reading the guidelines (NICE and Gp Notebook online) wrong do you think? I’m trying to prepare for my gp appointment and I’m getting confused.
I'd have to check - but I'm not at all surprised if what you say is exactly how they read.
The more I think about guidelines, the more I realise they should take a load of cases (real or invented), and see what happens to each case as you apply the guideline recommendations. Time and again some cases seem to fall outwith their guidance. Yet these are often perfectly reasonable cases where good guidance is needed.
I’ll have another read later when I’m in less of a panic and have had a rest. I think it’s important for me to get it straight in my head if there are actually seem to be different guidelines for people who are “subclinical”with a tsh “less than 10”, before I start all-guns-blazing with my Gp about what the guidelines say! Maybe the gp will take note of the fact that my t4 went up at first at the start of the 50mcg trial, and then dropped again to 9.8 (it was 9 before the trial started). Or maybe I will just have to wait until November till the end of the trial to have another blood test then. Or maybe the Gp will stop the meds and I’ll have to wait for my thyroid to keep wheezing and spluttering along for another ten years till my tsh reaches 10. Ahh well. There it is.
I started levothyroxine at a TSH of just over 5 and a FT4 right at bottom or very slightly below.
Now I take 112 micrograms and have done so pretty steadily for years. (Occasionally issues which I have mostly put down to the actual batches/makes of levothyroxine have seen me slight adjust.)
That is not as much as a weight calculation would suggest. But I have NEVER thought of myself as being "subclinical". I had symptoms from before my first ever TSH test.
I don’t think of myself as subclinical either. I think of myself as someone who has had severe hypothyroid symptoms for years who has been diagnosed with cfs and fibromyalgia, and has been very unwell for a very long time. I think subclinical is a terrible “label” because it gives the impression of “meh, not so bad,” but it is referred to in the guidelines from NICE. If it’s ok to ask - How did you first start thyroxine? Did you do a trial to start with? did you start on a lower dose and, if so, how did it get increased - by who and when?
A fairly "normal" path of increments from, if I remember correctly, 25, 50, 75, 100.
But messed up by being on a product that was not delivering its claimed potency (in 2012).
I did go slowly. With hindsight, too slowly. But once I'd experienced being under-dosed, I cared far less about what "they" said. Now I care nothing for them except that I have to ensure I keep getting prescriptions and an occasional NHS test!
The NICE guidelines seem to differentiate between primary and subclincial hypothyroidism as far as i can tell, and then within subclinical - those with tsh above 10, and then those with a tsh above reference range below 10 with symptoms. The recommendations are different. All very confusing. I think I need some chocolate..and a nap…
Having read through all of what you've said you're trying to appeal to the GPs sense of logic as well as compassion. Do forget about the guidelines, you tell them that you felt a lot better when your fT4 levels were higher and that as you have autoimmune thyroiditis, your thyroid is failing by the attack from the antibodies and will continue to fail so you will need levothyroxine from here on in. There is room in your TSH levels for an increase. Could you please trial a 25mcg a day increase for 6 weeks to see if it helps you feel better. You can drop back down again if it doesn't work or it's too much. You just want to feel better, not just for you, but for your husband and family. So definitely take your husband for support. Only a cold hearted sod would ignore that request.
Thank you so much for your reply Fab-jellbean. I got myself into a right panic state over the guidelines and went into complete anxiety free-fall!! You’re absolutely right - I need to forget the guidelines, simplify and just tell it like it is. Feel a lot calmer now. Thank you. It’s so hard because I think my thyroid has been the problem all along. I hope I get a nice gp that listens and understands. I’m taking a few days off from the worrying now. Thanks for your help. x
I think I’d ask for a dose increase for sure. You do seem to be responding well to the Levo but an increase will likely help. Most people feel better I u derstandwhen their tsh is1 or under.
Thank you JAmanda, I will send a message/email to the practice on Monday. I definitely started to feel better when my tsh was 1.7 and my t4 went up to 11.4. I’m starting to recognise the symptoms that creep back in when things are not quite right. I just hope I don’t have to speak(argue) with anyone who is stroppy or stubborn or bigheaded…urrrghhh
go in well prepared. If all else fails ask for a trial of an extra25 to see if it helps symptoms - that’s the aim not to get to a specific number - and promise to report back in 8 weeks and be retested to ensure not over medicated
I have been taking Levothyroxine 125mcg I have never seen the results of my once a year blood test. I just take my meds as and when I need every morning, I have no problems.
Good to know that there is hope! I’ve just recently started on 50mcg and started to feel well after a few weeks….but then symptons came back again. I believe 50mcg is classed as a “starter” dose so I don’t think I’m on a big enough dose yet to maintain my t4 levels. I hope one day to be like you where I take my 125mcg pill every day and have no problems.
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