I’ve just had my test results back after increasing to 50mcg Levo for 4-6weeks.
TSH 4.8 (range 0.27-4.2)
ft4 18.6 (range 11-21.2)
Previously on 25mcg and last test before this one was:
Tsh 4.5
Ft4 18
I have felt very little difference with the last increase. I’m so confused and frustrated that my Tsh levels are going up!?
I am following all the advice on here for blood tests along with taking my levo in the mornings an hour away from coffee and food and no supplements until 4 hours later. I take Yasmin contraception but take this at night.
I’m feeling so fed up and upset that I’ve made absolutely no progress with my levels.
Is it worth asking to double my dose?
Be referred somewhere?
Should I change how I take my levo?
Grateful for any insight from anyone.
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ALWAYS take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I’m following all the advice you have mentioned above, thanks to you replying to my other post and have since slowly been introducing the supplements you recommended in my other post.
I’m just concerned I’m not responding well and that there may be something else going on as my symtpoms are still there and they tend to flare up and down all the time…but am going to contact gp for increase asap next week!
Why do you think you're not responding well? You'd be lucky to have much of a response on such a low dose. The increase in the TSH is so slight it is irrelevant. You can expect variations in the TSH on any dose. So, don't worry about it. Just keep on keeping on and things should eventually improve.
Doctors know so little about thyroid that they have totally irrealistic expectations of recovery. When I was first put on levo, my endo said that in 'two weeks time, you won't recognise yourself!' And, in a way, that was true. I didn't. But not in the way she meant. I felt a thousand times worse! I didn't have any symptoms apart from weight-gain on diagnosis. Two weeks later my symptoms had multiplied by lord knows how many times and I felt very, very ill. At least you haven't developed new symptoms. We all react differently, but doctors don't understand that.
You must not increase by more than 25 mcg every six weeks. It may seem like a waste of time, but your body needs that to to adjust. And, if you increase too fast, you could find yourself right back at square one, having to start all over again. 25 mcg isn't at all a small dose for an increase. Some people have to go even slower with 12.5 increases.
I really hope so as it’s starting to get me down a bit.
I suppose I’m also a bit worried that Gp will not want to prescribe more levo as my ft4 is a bit high at 18.6? Or is it okay for it to be that high…or higher?
I have an appointment booked for Monday next week so just preparing myself for a potential battle!
It's ok, you still have room to increase. And, I don't suppose your GP will even look at the FT4! He'll just look at the TSH, and that's much too high. Should come down to 1 or under.
Unless extremely petite likely to need at least 2 more increases to at least 100mcg daily
Roughly how much do you weigh in kilo
Many people find Levothyroxine brands are not interchangeable.
Accord don’t make 25mcg levothyroxine
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Most easily available (and often most easily tolerated) are Accord or Mercury Pharma
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for extra 50mcg tablets by Accord to cut in half to get 25mcg
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
Healing is not in a straight line. I know that logically our minds tell us that if we add more Levo then the blood numbers should reduce. Certainly in the early days of treatment this is really not necessarily the case. Your body has put in many coping mechanisms while you have been undiagnosed and untreated and it takes much time to right all the wrongs that have been happening. My TSH definitely rose at one point after a dose increase when I was starting treatment.
You're doing nothing wrong and this is just a very slow to recover from condition.
thank you for coming my back to me so quickly and your reassurance!
I was so disappointed to get the results.
I was diagnosed subclincal but was having debilitating symptoms. It does seem like pre meds my TSH levels bounced around all over the place.
My last blood test before medication was tsh 4.14 so it’s actually gone up continually since starting levo. I guess that’s why I’m so frustrated that there has been little to no progress in over 2 months all the while my health is having a huge impact on my work/personal/social life and it feels like no progress is being made…
Mine zigzagged quite a bit during my initial few dose increases, but they have now conveniently stabilised right at the bottom of TSH range for last 2 tests. Took a while and my biggest fluctuation was at the first increase to 50mcg where it shot up to TSH 26. Surgery were confused at the zig zags, so I tried to explain it to them but they just accused me of forgetting to take my tablets! Honestly I’d have gone mad and still be on incorrect dose without all the help and knowledge from this forum.
Don't get disheartened about the TSH .. it's come down from 7.1 and you;ve only been on 50 for 4 weeks , so it hasn't had very long to react anyway .
GP will presumably suggest an increase to 75mcg now . and that may well improve how you feel within a couple of weeks
however , there is mention in NICE guidelines of starting at full expected dose 1.6mcg /kg body weight .. so you could try pointing to that bit and requesting you going straight up to 100mcg since you have had no ill effects from 50 ... (and they wasted so much time already by starting you on 25mcg)
"1.3.6Consider 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." nice.org.uk/guidance/ng145/...
However that approach does run the risk of shooting yourself in the foot... if 100mcg is too much ,it will end up taking longer to feel better than if you'd been patient and tried 75 first.
i went from 50 to 10 in one go and it didn't cause any problems because my final dose was more than 100 .// however see my reply on your first post re. using much smaller increments than 50mcg once you are getting somewhere near full dose ~i went from 100 to 150 which i now think was a mistake . i may have done better on 125 or 137.5, but never gave myself chance to find out.
GP may not go for it ....but since they have let you retest on 50mcg after just 4 weeks , they do seem to understand the need to 'get on with it' . so if you want you could ask to try 100 next .. it's not unethical for them to let you try , the guideline does allow it.
thanks for replying! Yes I recall you being super helpful on my other thread!
I’m defo going to ask GP opinion about what the next dosage should be… I know it is risky though as based on weight my dose should be around 85mcg but also have to factor in I take an estrogen containing contraceptive to manage PCOS so it’s likely that I’ll need more than that but 100mcg may be waaaaay too much. It’s such a hard call so will ask what gp thinks.
If 100mcg is too much could you just reduce back to the 75? I don’t want to make myself ill but at the same time I don’t want to carry on like this either….
mine should have been about 97mcg / day based on weight , but that would not have been enough .. i still need 112.5/day 20 yrs later , same weight and doing MUCH less physical work than i was in my 30's .
So 1.6/kg is really just a 'guestimate' .
if you do go too high , then yes you can just come back down , no real harm done .. but the problem is, it takes more time again ..... and most of us who've experienced overmedication would say it feels far worse than undermedication . eg. anxiety/ insomnia can be really horrible .. not to mention realising you've just yelled at someone for 10 minutes and come across like a stressed out nutter .
trying 75mcg and suck it and see for a few more weeks is probably a much safer route ... i suggest you try it and just hang on to the fact that your getting there steadily .. even if it doesn't feel like it yet .
that’s very interesting to read that you needed more and has got me thinking!
It’s such a hard judgement and I have heard that being over medicated can be more horrific so it is a hard call. Gonna ask GP and if she immediately shoots me down then I’ll stick with 75! I think her concern may be that doubling the dose may push my ft4 out of the top range, but we shall see!
Tbh I sort of knew my levels probably hadn’t budged too much based on how I’d been feeling since the increase but was just so desperate for some progress.
some people on here need less than the 'estimate' ... if there is an intelligent way to estimate, it can't be as simply as "body weight" .. it must surely be a combination of muscle mass/ body weight/ height/ activity levels,... i was 9 st. 7 , doing heavy work , had lots of muscle and was slim. 5 ft 7
someone else's "9 st 7" could be 5 ft 0 , inactive and more fat than muscle.
For reference:I am 5ft5 and hover around 53kg (but have defo noticed slow gain since starting levo, used to alaways be around 50kg) but would still say I’m pretty slim. I used to be very active and had more muscle than I do now though.
It’s a shame there isn’t a more accurate way of working out dosages for people! it would be amazing to just know the amount you need straight away (im living in dreamland I know lol)
Hi, I am fairly new to this. It is hard at first. Brain fog and fatigue and lots of new things to learn. Feeling poo.
This forum terrified me at first, as so many are struggling but I think a lot more are fine from talking to others. (I am now masively better). The wisdom and kindness that is shared here is amazing and uplifting.
You have not really mentioned your symptoms and whether you are seeing some improvement.
NICE guidelines, I think say doctors should dose based on symptoms as much as bloods.
Advice on here is to get vit d and b12 and folate etc at near top end of range. This helps you get levo into your system properly. Do not supplement before you know your levels. I did this at your stage. I was low on D and B12.
If you can I would be getting T3 measured privately if you can. I did through monitor my health for about £30. DIY finger prick. I wanted to know if the levo/T4 is converting to T3 properly. Else you have fuel in tank and a blocked fuel pipe so little fuel gets into iour engine. I am still not sure I am converting properly.
I logged temperature under my tongue first thing in the morning. As a man I do not have 28 day cycle moving this temperature about though. I have gone from 36.0 to a bit over 36.5C as it kicked in. To be honest I was cold in bed last summer and as I repaired started just crossing my legs in bed I could feel warmth had come back. Bliss.
I measured blood pressure and heart rate.
Recorded weight.
Did this once a week with symptoms.
I also wrote down what next, like blood tests etc.
I had gut issues and looged foods I was already gluten free.
Be aware that thyroid blood tests need biotin stopping for a few days before and no levo on the morning of the test. SeeTUK and other posts on here for more details.
Read the Thyroid UK info. I bought the paper pack. Easy ish to read pamphlets on all sorts of things.
I’ve actually just ordered a more private test which includes the t3 and also b12, folate, iron panel and vitamin d.
I had all bits tested back a few months ago and posted on here- none were optimal and vit d was low so have been working on slowly introducing supplements.
As for symtpoms I struggle with:
Severe constipation and acid reflux( on levo this is improved slightly but still very uncomfortable)
Fatigue and tiredness
Brain fog: lack of focus and concentration and struggle to think clearly. (Used to come and go before levo but now is always there really)
Low mood and motivation
Joint and limb pain and aches:this is improved slightly but still very uncomfortable and flares up every time I change dosage.
Feeling extremely cold
Dry skin
For comparison:
I used to be full of energy and a very hard working self employed career woman. Multi tasking was never an issue and I loved my job so would often work long hours as well as having a full social/personal life.
Since all this started I haven’t left the house much because I’m feeling so lousy and work has been near impossible to keep up with.
I just don’t recognise the person I am anymore and worry I’ll never get back to being me…
And also I worry a lot what will happen if I find I need t3 as know nhs don’t prescribe and having had a quick google it seems extortionately priced which is a no go for me as a self employed freelancer.
Sorry to off load on you, not feeling very positive about all this today.
Good that your getting bloods done. There are low cost T3 sources I think but check with TUK to make sure feedback is OK.(just checked and for 100 off 25 mg tablets £12. ) I bought some for just in case. I reckon about a quarter of a tablet a day may help.
I am also self employed and have struggled.
Be kind to yourself. Get enough rest to help yourself recovering when you need to. Let people around you understand what is going on.
When it starts getting near t right dose, you may well feel euphoric for a bit.
Going to 75 from 50 is a massive jump. 50 % more.
I felt better at 125 mg and have been on 150 mg for last 5 months. 1.6 ratio seems about right for me. I went 50, 100 then 125.
When I have gluten by accident or as a test it wipes me out for 4 or 5 days.
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