Before I write my story I would like to ask question is it not to much 100mcg of levo to start with ?
I feeling bad in general for few years and since January/2024 even worst, there is also family history of hypothyroidism in my family so I went to GP as i was having palpitations and irregular heart beats so my heart often skipped beat or had feeling of squeezed beat, hair loss, tired all the time and changes in moods, weight gain, no interest in sex, rumbling/gurgling feeling in chest, lines on nails, anxiety, panic attacks, not able to control breathing when tried to run, no morning wood, lower armpit temperature, dry skin, urinate lot at night and morning, pressure and pain on chest only in one place etc I had blood test and had high cholesterol, some damage on liver, low testosterone and on repeated blood test my T4 of 11,5 and TSH of 8 been told I got subclinical hypothyroidism, my test for antibodies been done result will know in 5 days when my phone call is booked with GP ... They put me on trial treatment with levo to see if my symptoms gets reduce in 6-8 weeks but they pescribed me 100mcg I do take it for 4 days only and may be my anxiety is increased and my mood changes are stronger also i though they will give me just 50mcg not 100mcg to start, I'm 31 years old, 110kg and my bmi is 37 and cardiac health probably ok as had 2x ecg and x-ray of chest but experience heart symptoms for long time, my blood cells been ok so i think there is not any anemia or vitamins deficity, it's all stressing me out and my health anxiety sky high right now
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Clementik
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So we can offer better advice, can you add ranges (in brackets after results ) for TSH and FT4, as these can vary between laboratories. Was FT3 tested? Do you have any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)?
If your GP is unable to complete all the above, you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
You could reduce to 50mcg a day as a starter dose, as I found when I made adjustments too quickly I had adverse symptoms (the worst being increased anxiety). When you are settled on 50mcg, you can then add 25mcg (using a pill cutter to divide your 100mcg tablet) and when settled on this, a further 25mcg. Some of us need to be more ‘tortoise’ than ‘hare’ when adjusting doses.It’s likely you will need more than 100mcg Levo over time to get your TSH closer to 1. It’s advisable to get levels rechecked 6-8 weeks after being in a consistent dose.
I would definitely ask GP to check for antibodies (eg Hashimotos) and key thyroid vitamins (folate, ferritin, B12 and vit D) in the first instance.
my T3 and key vitamins was not tested but can request it
thank you for link but hopefully my GP will do those tests
my antibodies been tested but don't have result yet
why those vitamins are so important to test ?
I'm on levo for 4 days now and talking 100mcg as starting dose, so you recomending me to change to 50mcg ? that mean 100mcg is to high ? or it's better to start with lower to avoid side effects ? or why ? thank you
I personally would reduce to 50mcg and increase slowly over time. I ended up in A and E with palpitations/ tremor/ fast heart rate when I adjusted medication upwards too quickly. 100mcg is not too high a dose, just too high a starting dose in my opinion. I would build up to taking that amount.
Key vitamins support thyroid health. They are often low in those with auto immune thyroid conditions. We don’t advise taking supplements until levels of these key vitamins are tested/ shared on the forum for further advice.
The traditional approach has been to start on 50, then increment every few weeks, to whatever is required.
However, there has been a move towards starting on at least a guess of the eventual requirements.
Personally, I think this is folly. Starting at something like 60% of expected dose seems sensible. But the idea of any higher is madness. We need to adjust to the dose.
At the same time, we need to allow that any individual might need to increase their dose a bit faster.
But estimating final dose is extremely difficult. I am on a dose far below what would be expected for my weight, etc., so very glad no-one tried a formula approach on me!
We are all different. What works for one might well be inappropriate for another.
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.
Or, a deliberate ploy, setting the patient up for Failure. They talk about 'a trial' of levo for 8 weeks, or whatever, which is a nonsense in itself and always sounds suspicious to me: if your labs say you're hypo then you're hypo, and whether taking levo helps or not is totally irrelevant. Starting people on too high a dose - and they do that with T3, too - is likely to make the patient worse rather than better. They can then say, oh well, it's not your thyroid making you ill, then. And another diagnosis is averted! These days it seems to all be about avoiding diagnosis people rather than making them well again.
When I was started on mine many years ago I was started with 12.5 and rechecked every 3 months. My increases were never more than 12.5 at a time either but that's done for anyone with blood pressure or heart issues. I'm shocked that anyone would be jolted with 50 or 100 straight for a starter. I know it's a money saving strategy but hate to see how many serious problems people have from that.
Most people are ok on a starter of 50 mcg, I think. And some people can even tolerate 100 mcg, from what I've heard. Also, for a lot of people 25 mcg is just too low and makes them feel worse. You can't please everyone all the time. But starting at 50 mcg seems a reasonable compromise. Thing is, people should be told that if that feels too much they can reduce it for a while. But, as it is, they aren't given any information at all, and just trust that the doctor knows what he's doing. Well, maybe he does, but he's not always doing what you think he's doing, and the problem lies there.
Well, for a start, it's not medicine in the normal sense of that term. It's thyroid hormone replacement. It doesn't cure anything, it just replaces the hormone your thyroid can no-longer make enough of to keep you well.
A TSH of 8 is pretty high when you consider that a 'normal' (euthyroid) TSH is around 1, never over 2, and you are hypo when it reaches 3. And in some countries you'd be treated when it reaches 3. It's just that the NHS wants to cut down on as many diagnoses as possible. Which is cruel and insane given the effect this disease has on people. It's also economically unsound.
As I said, putting people on a 'trial' of levo is an absolute nonsense. It can take years for people to find the right dose, so you can't expect much improvement in 6/8 weeks. But they either don't understand that - they don't understand much about thyroid - or they just don't want to understand it.
I think you're probably wise to reduce your dose to 50 mcg. When did they tell you to go back for a retest?
I am on a dose far below what would be expected for my weight, etc., so very glad no-one tried a formula approach on me!
That’s really interesting. Would it be possible to hear about your regimen? And I’m intrigued as to whether you rely on blood tests or symptoms when it comes to dosage, timings etc. Thanks!
Clementik , I hope you don’t mind me hi-jacking helvella’s response 🤔
I was started on 25 (GP was cautious as my TSH was not that high - though FT4 was almost at bottom of reference interval). And I went slowly.
Then had issues with the make that was failing to deliver its dose in around 2012. When I realised what had happened, I really started to understand the issues of how the individual patient feels. More or less, I had gone a bit downhill despite a recent dose increase.
When I got them replaced by another product, I immediately felt noticeably better.
I ended up on 100 with TSH towards lower end, and feeling reasonable.
Then came years in which I hovered between 100 and 125. Often taking 112.5. 100 was definitely not enough. But staying on 125 for more than a short time made me feel slightly over-dosed. More recently I have been on 125 permanently.
It appears some of us are very sensitive and react quickly to small dose changes. Whereas others seem to not notice anything for weeks!
I'm lucky. I had a bit of a disagreement with one doctor who felt he knew a lot. He insisted by atrial fibrillation was due to excess levothyroxine. When I saw another doctor about different issue (which was urgent so couldn't wait for him), I was offered a swap to her list. She seems perfectly happy to do a blood test every so often and sign the prescriptions!
While I have permanent afib, I don't think levothyroxine is part of that. And I have observed my heart rate reducing when I have changed from, say, 112.5 to 125, if I have felt that was what I needed.
So a combination of tests and feeling. But it took a long time to have confidence in my ability to interpret feelings. And I do think that, for me, a wrist-worn device (Apple watch) has helped me to look back and see how things changed.
So are you saying that you basically changed brands early on because of perceived absorption/efficacy reasons, as opposed to any obvious negative reaction (as is so frequently reported here)?
Sorry, another question. When you say that your TSH wasn’t particularly high (hence that GP’s cautious approach), may I ask how high that approximately was?
Like you, my FT4 was consistently scraping the bottom of the range and my TSH was 5+ (historically on one NHS rest but also via private finger prick tests) but I’m not officially diagnosed. Therefore I self treat but I’m dogged by self-doubt and insecurity about the validity of my hypo status. I’m still trying to figure everything out. I suppose I’m seeking validation that I’m not barking up the wrong tree. Thanks.
I changed make because what I was on was recalled by the MHRA.
Before I had any levothyroxine, I was aware that some patients found the makes were not equivalent. But I decided to take no notice of make and just plough ahead with whatever I got. Something inside me wanted to think most patients noticed no difference.
Afterwards, I realised that I really could tell differences.
Mercury Pharma seemed to have its effect sooner and with a higher peak - then fade before the next dose.
Accord seemed to be slower and have a lower peak. Thus slightly less of a trough before the next dose.
And I am convinced that the rate of change of FT4 after ingesting levothyroxine is an important factor in acceptability of products. (On top of the total amount absorbed, the effects of various excipients, etc.)
I now take Aristo (100 micrograms) and either Wockhardt or split Aristo to make up my dose. I think Aristo seems less peaky - but I could be completely wrong! I find it the best product available in the UK. (I don't expect everyone to agree with me!)
Thank you helvella, you have no idea how affirming that is. I’ve felt like a fraud, given my lack of diagnosis. I need to change that, I can’t carry on muddling through.
I’ve convinced myself at times that I need to get off the levo to induce symptoms so that my GP will take take me seriously. But obviously that made me really, really ill.
I need to secure a diagnosis privately, any suggestions for whom to use (from anybody reading this) will be gratefully received (via private messages).
I’ll put together a separate message if necessary.
Could not agree more. Due to heart issues and my age I asked to be started low, 25 mcg. Even on that I had, what I now realise were adverse heart symptoms. However I took the view that of course if my metabolism was being increased, I could reasonably expect my heart rate to increase. This has happened on every increase for me. I too am on a dose way below my ‘weight’ but FT4 near the top of the range. I hate to think what could have happened to me being put straight on 100 mcgs.
For the sake of anyone coming along in future, I also consider that some patients are kept on lower doses for far too long.
Some people find that even within days of starting, they get the feeling they are running out well before their next dose. They should be in a position in which they can report that back to their GP and get their dose revised without waiting longer.
Indeed, I'd go further and say that if we are close to some sort of continuous monitoring and dosing system, it is this stage which so desperately needs understanding. They should be allocated to early dosing and we should see very much smoother increments from initial dose up to a steady state.
And if we are not near enough, at least let us see more understanding of how patients feel. It is plain cruel to give someone a starter dose from which they feel some benefit. Then leave them to go from that to feeling worse, earlier and earlier each day, for weeks and months.
I was my very first 4 days on 100mcg as my GP pescribed me and i though that dose is to high to start with and also i felt after 4 days it's really may be lot so now I'm on 50mcg a day as many people here recommended me to cut it but i feel pretty much like before and also i find out that my heart rate is bellow 60 which never happened before any thought on this please ?
Some take a low dose and notice it immediately. Others take a much higher dose and hardly notice anything for at least several days, even weeks.
When it comes to heart rate, I am probably the very last person to ask! In the last month mine has varied from 42 to 184. I don't understand myself and my experiences, let alone anyone else.
Everything to do with thyroid takes time. If things happen quickly, it likely indicates too big a change which can come back to bite you. That applies when starting, increasing or reducing doses.
That’s the make o was on and I had all your symptoms I was on 100 mcg too they are messing with ingredients and makers I was on them 30 years with my new doctors blessing I stopped taking them two months ago and within 2 days I felt better xxx it’s my story and my journey I just take multi vits and minerals my new GP apologies Ed for the nhs mishandling and is monitoring me over the next 12 months
I am not aware of ANY actual evidence that they are messing with ingredients.
Indeed, it would be illegal for them to change the ingredients without approval. (It was an unapproved change that caused one make to be withdrawn in about 2012. The company had not understood the difference it would make nor that they needed to seek approval before making the change. They seemed to think it was pretty much the same ingredient from another source.)
And if anyone has issues - PLEASE put in Yellow Card reports.
Yes and that made me very ill but no one told us they did it and many were ill too x also they are make them in different countries and the price has to be low ???who can trust them xx I have never seen so many problems with this med and I have been a professional nurse for 40 odd years xx it’s scary !!folk are fearful and I feel their fear x This site helps but seems to have no clout in pushing for better care by the professional medics in this country etc xx.
No not all you are correct !!! They are packaged over here to make them look Legit but most don’t even have ingredients listed now I have checked my pharmacist days they place for instance accord in almus packets and not sure that should happen
I was started on 100mcg Levothyroxine in 2011 after years of being ill due to inadequate thyroid hormones. It alleviated a few symptoms but bought a whole set of new, such as very frightening heart issues, vertigo and ‘swimy’ head.
Looking back I would say it was the sudden forced increase in a metabolism slowed for far too long, and that had affected every other bodily system. Therefore a lower dose and slower introduction of thyroid hormone replacement would have allowed a gentler reversal of damage to all systems. I also now know my under-range adrenal hormones should also have been addressed alongside.
I think this set my recovery back several years, and if I was you I would reduce to 50mcg, and increase by 25mcg in a months time if you are tolerating meds. Then increase again after another month and test levels to assess a more final dosage.
Many of us have been so poorly treated and are sceptical of a GP’s ability to medicate us correctly, and I suggest you don’t tell your GP about reducing for fear of your prescription being changed and further increases denied.
I was prescribed 100 mcg of Levothyroxine when I was first diagnosed with hypothyroidism. It was definitely far too high a dose and it took several years to recover from this. It is much better to start on 25 mcg and gradually increase until your body tolerates the drug. It has taken me seven years to feel reasonably settled and am now on 112.5 mcg after a break from thyroxine and then restarting the whole programme on the lowest dose.
I was started on 100mcg and it was far too much for my body to deal with. I had to reduce to 50mcg and slowly build back up to 100mcg. I have only just increased to 100mcg today a year on
Hi, Sorry you are having such a tough time but your not alone and the experts on this site can be so helpful . I am not one of those experts or medical , just been on a long horrible health journey which is still on going , so what i’m about to say is just what i’ve learned and helped me through the years , im not symptom free and many symptoms now back with a vengeance ( i believe due to perimenopause e ) . i’m currently on 150 almus levo increased from 125 5 weeks ago , also on hrt and about to get all my hormones tested again to monitor what might need adjusted . So basically i’m not an expert and in no way miraculously fully better unfortunately but here is what i’ve learned so far.
I think what the others have said about starting on 25 or 50 and working up in 25 increments every 6/8 weeks after blood tests and assessing your symptoms each time is usual way to go.
In relation to your anxiety and heart palps , these can be due to many things from thyroid issues , low vitamins and minerals and hormone imbalance like low testosterone or high cortisol etc. For example , whenever my folate used to drop really low , my palps would go crazy and blood tests confirmed it. once back on folate for a top up my palps went away . another example is my anxiety and ibs and breathing going crazy all of a sudden every 4 weeks , gp ran tests and told me i was perimenopausal and so they started me on hrt and extreme anxiety symptoms and ibs calmed right down . Any hormone imbalances can cause your cholesterol to rise and once fixed you may see an improvement on this too ( unless caused from other things like diet and general physical health ). Also i believe anxiety is a symptom of other things not working in our body but can be made worse if we give it attention and worry more about it. so medication and supplements when deficient can help a lot with anxiety but alongside things like walking , cbt , podcasts self help courses or books and mindfulness etc but it’s a long road and not easy , ive lived with anxiety my whole life but i know when it suddenly increases for no apparent reason that something is usually unbalanced in my hormones or vitamins and i go straight to gp to check thyroid and vits again as a starting base for how to deal with it.
if it was me , i would start levo at 25 or 50 and increase in 25 increments but ensure regular blood tests till right dose and blood measurements achieved. see others on here for measurements to aim for. Everyone’s ideal tsh is slightly different though. But also consider getting b12, folate and vit d tested as in my experience e all these being low can make you feel physically awful , exhausted , affect heart palps and increase anxiety . My vitamin d was at crisis level and i was very exhausted but the biggest symptoms was a sore hip for no apparent reason. once on vitamin d hip pain disappeared within 2 weeks. People with hypothyroid and/or hashis also can often have gut problems , vitamin and mineral absorption problems and makes us low in these and need supplements , but best to check with gp and blood tests rather than supplement blindly. also if you wanna go deeper, consider looking at improving your gut health with pre and probiotics while you try to balance everything. Also , once you get your antibodies test back , if they then tell you you have hashimotos then please reesearch more information on what it is and how it affects you because in my experience the gps don’t do this and then people don’t understand their diseases and understand that it can flare up and down and what can help reduce flares.
Good luck with everything , i hope your symptoms improve soon and just know you aren’t alone in this and try to not let your anxiety get the better of you. Anxiety is your brain trying to protect you but for some reason it is overreacting right now . Hope some of this helps.
Even if your full replacement dose is ~100mcg, it would be unusual to start you at that dose. Usually the dose is moved up slowly to avoid shocking the system. If you do in fact have Hashimoto's autoimmunity, keep in mind (speaking from personal experience) that you might not even be able to reach your full replacement dose without high anxiety or other problems, IF your gut has been trashed by a food allergen such as gluten. If you want to know what your full replacement dose of T4 is, multiply 1.7mcg/kg by your weight in kilograms.
I was started on a 25mcg dose and gradually titrated up to 100mcg when it was found that I didn't convert very easily so now I am down to 75mcg levo with 10mcg T3 added in. Personally I think I'd be better on 87.5mg levo but the doc insists on testing again in six months.
I had quite scary symptoms almost every time I titrated up until my body had accepted the increases so I cannot imagine what going straight onto 100mcg levo must be like. I do also wonder (like some others here) if there is now a movement afoot to scare people into not wanting it. But that is maybe just my cynicism from having to negotiate this problem for the first time during the past three years.
Either way, I agree with most on here: 100mcg would not have suited me straight away and I would likely have given up. If I had my time again, I would focus strongly on my vits (just as important in my experience) and start low and slow with the levo. You can always get private checks as you go (if your docs are on a minimum co-operation jag) so you can monitor your own progress and post on this forum for good advice on how your numbers are looking. The folks here feel more knowledgeable and trustworthy than anyone else I have encountered along the way.
I would also make sure I had the same brand of levo every time so that one major variable was removed from any reactions you might have to increasing. I use Mercury Pharma but lots of people are happy on other brands. Just stick to one if you can tolerate that one.
I wish you all the best with your recovery and I hope that you reach optimum supplementation levels and better overall health before too long. It can be a lonely journey but these guys are amazing. Tap into their kindness and lived experience.
its normal to bounce around a little when startign Levo, I had 3 disctict ' hyper' episodes in first few months when I started but my body settled down and adpated quite quickly. that said findind the right dose/ solution for me did take a while.
there are two schools of thought, one start on 50 and titrate upwards the other go in higher, there is no single answer and everyone reacts differently. if you feel 100 is too much cut it back, and ask doctor to increase in increments. Either way it is a multi month feedback loop so dont expect instant changes and dont change too many things at once. I know that can be hard when suffering.
there is a lot of nonsense around about thyroid management (not just in the NHS), be prepared to have to be curous, self researched and push back or go it alone. synthetic hormones is a developing field, look what women have gone through with menopause in last 20 years, many still suffer needelessly at the hands of poor clinical guidelines and advice. Science is evolving fast though institutions can be 5 to 10 years behind the medical innovation curve. AI will accelrate this. I dont think thyroid attracts a lot of funding when the preferred treatment (levothyroxine) is cheap as chips.
keep an eye on your sleep (or have someone else do it), i have sleep apnea and low thryoid as common comorbitdities particularly as men age and quite a few of your symptoms could be linked to poor sleep. Just something to consider. good luck
people who have underactive thyroid (hypo) can occasionally swing over (hyper). Hormones can bounce up and down for various reasons. When you first start synthetic hormones the same can happen until your body adapts to new regime. So when I started levo I had some definate hyper swings lasting a few days which ultimately balanced out. these were heart racing, mild palpitations, feeling scatty (brain). Same when I started T3 - felt a bit overwhelmed and anxious for week or so.
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And best of luck.
Still not 100% after months on levothyroxine
Bisoprolol (2.5 mcg) in combination with Levothyroxine (100
Why are all brands of Levothyroxine (100) not the same?
Increase in Levothyroxine
