Hi all,
Finally managed to get a trial of 50mcg of Levothyroxine. Do you guys have any tips?
The box just says to it before breakfast, and to avoid caffeinated fluids for 30 minutes after taking it.
The thing is, I also take 50mg of sertraline. When should I take that?
I also take vitamin D, b12 and a probiotic.
Thanks!
Levothyroxine is an extremely fussy hormone and should always be taken on an 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
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
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
Brands of levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Which brand have you got to start on
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
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 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
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.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Discussed here too
healthunlocked.com/thyroidu...
Thank you! If I take it at night - how long should I not eat before taking it?
Just checked and it’s Teva
Couple of hours... if you happen to get up in the night regularly you could take it then?
Just looked back at your other results, you could do with getting your Vitamin D up to at least mid range the sublingual oil based drops or Better You mouth sprays are an effective easy option 🤗
Main meal at least 2 hours before
A feast …..a bit longer ….3 hours
Nothing apart from water for at least an hour before
Avoid glass milk or milky drink as high calcium at least 3-4 hours
If that’s difficult, if you regularly get up for loo in the night ….can take in middle of night
I take my Levothyroxine when I wake up around 4-5am. I take a lot of medication so that leaves me plenty of time to take the rest of them.
I do this too - take my thyroxine about 4-ish, go back to bed and get up at 730 for breakfast and rest of meds.
It was suggested to me to take it 2 hours after food and an hour before, so I now take mine at bedtime. Works for me 
I take mine at night and it made a noticeable difference to me.
Thank you for the advice so far guys. Due to having an 8 month old daughter, I tend to get woken up in the night, especially around 5am-6am, so I will keep them at the side of my bed with a glass of water. That's what I did last night and took it this morning around 5:30
I always take mine last thing at night because I wake up and want my coffee.
Hi all,
Been waking up really anxious for the past few days. Could this have anything to do with the Levo? Been on it for about 10 days so far. It's really messing with my OCD/intrusive thoughts.
Cheers!
Give it time .
By adding thyroid hormone to a 'hypo' system that has got used to going a bit too slow . you have now speeded that system up a bit .. the whole system , all the cells , including your sleep patterns / brain / thought processing etc etc .
you body will adjust over then next few weeks . while it does , some areas may initially feel a bit too 'fast' , but will probably have slowed down again by the time you've been on it for 6 wks , because as the TSH reduces (in response to the higher T4 level) , it reduces the amount of T4 coming from your own thyroid.
eg (very over simplified explanation)
....if you made '10' of your own , you add '2' , so after a few days you have '12', but only for a week or so , then... TSH lowers (because it noticed T4 level went up) and so then you only make '8' of your own (plus the '2' you added)..... so now you only have '10 again . Then dose is increased to compensate .
When starting levo people often notice feeling better for a week or so (or if they are sensitive to it feeling a bit too 'fast') , then going back to how they felt before levo.
When dose is adjusted up this pattern repeats , but often with the 'better/ faster' bit lasting longer ,, and the 'worse again' bit being less bad .... until eventually the amount produced by your thyroid stabilises , and your dose stays stable too .
This process of adjustment takes several weeks to stabilise each time .. so try not to worry about any changes you notice during the first few weeks after starting levo , or when adjusting dose. just make a note of them eg keep a symptom diary of how you felt at the end of each week.
Give it 6 wks and weeks THEN decide what the effect it has had , once your system has had some time to stabilise on that dose .
Thank you for the amazing explanation! I think I did feel a bit better for a week or so, then the last few days I’ve been bad. That’s really funny that my experience pretty much tallies up exactly to what you said!
Hi Griffo_ Please consider signing this petition and sharing if you can. Thanks Tattybogle: healthunlocked.com/thyroidu...
Have signed it
“eventually the amount produced by your thyroid stabilises , and your dose stays stable too” Can I ask - so, does the thyroid continue to produce thyroxine in addition to the amount provided by the medication?
In many of us, yes.
My tablet dosage of levothyroxine simply does not appear sufficient (dose for a substantial person!) so I have to assume that my thyroid continues to make some thyroid hormone. The thyroid can also be involved in conversion of T4 into T3.
But if you have had a total thyroidectomy, or autoimmune thyroid diseases such that you thyroid is totally destroyed, then it might well reach the point of doing nothing.
But taking thyroid hormone will reduce TSH, so the thyroid is only being told to produce a smaller quantity.
Thank you, Helvella. It’s taking me a while to get to grips with it. Thank you for taking time to explain.
Regenallotment my eye floaters seem to be worse too and my stomach - could this be relevant too? So sorry for tagging you, I’m just really anxious / stressed and thinking I’ve got something really wrong with my.
Which brand have you been given? If it's Teva your stomach might be unhappy with the acacia or mannitol in this brand... Accord is often better tolerated but it does contain lactose if that is an issue? Teva doesn't contain lactose
Having said that taking levo can often lead to dairy intolerance as it can switch off the production of lactase...
Teva is what I’ve got. Having lactose with being vegan wouldn’t be ideal, but I’d give it a shot if it meant me getting better.
I also take:
Vit d: 1000iu per day
Vit b12: 50mcg per day
Not sure if that’s enough
Sounds like you'd be better on Aristo / Vencamil like me, but they only make 100mcg at the moment, they are supposed to be rolling out all the other sizes this year...
They do break in 2 really easily but some pharmacist aren't keen on pill splitting as it doesn't actually recommend it though the tablets are designed for it 🤷♀️ maybe worth speaking to you GP as the other option is liquid which is crazy expensive and hard to get hold of
Vit D (&K2?)... depends where your levels were to start with but anything up to 5000iu is ok, my level drops in the summer if I stop taking it even though I'm out and about several hours a day, so always worth supplementing
Vit B12... it that from the GP cyanocobalamin? I tend to use liquid (sublingual) as I absorb it better (same with Vit D.. Nature Provides) methylated versions are also more easily absorbed, I take around 1000mcg everyday at it keeps me near the top of the range... you don't store B12 so excess is just expensive pee
I think other dosages of Vencamil will not arrive this year.
The hold-up appears to be MHRA approval.
Seems that MHRA has huge backlog of changes in medicine approvals due to, you guessed it, brexit.
Loads of medicines are getting PLGB or PLNI approvals - which is confusing the heck out of me. But looks like they will have to working through thousands...
The MHRA has just added three organisations which can issue approvals for medical devices - which will help with those.
Three new UK Approved Bodies to certify medical devices announced by the MHRA
The Medicines and Healthcare products Regulatory Agency (MHRA) has designated three new UK Approved Bodies, almost doubling the UK’s capacity to certify medical devices, supporting faster certification of safe and effective medical devices for healthcare professionals and the public.
gov.uk/government/news/thre...
As the organisations are all German, I suspect that this is effectively reverting to the state before brexit where we had mutual approvals agreements. But I'd like someone to confirm that, if they know?
I take nothing that the GP has prescribed me other than 50mg of sertraline (which I know can make levo less effective). I think my nhs gp surgery only like to prescribe SSRIs and statins!
It’s cyanocobalamin that I take indeed.
When I’m as anxious as I am, it really impacts my stomach, so most of those problems are probably due to me not being able to eat much over the past few days?
My head just keeps saying “nah, you definitely have pancreatic cancer or something like that”. I struggle with health anxiety/ocd. I’m hoping treating my thyroid will help with this 🤞
They all seem to have their go-too scripts... presumably getting a good backhander?
You will be amazed the difference it will make to the whole of you once on the right dose of thyroxine.... honestly I thought it was early onset dementia after years of inadequate treatment, I was about as lively as a 90 year old! It has a knock on effect to all your hormones.... a real mindbender too😣
You sound very much like my daughter and she is much improved with good supplements
I can thoroughly recommend the sub lingual route, other like the sprays as at least that is less burden on your stomach and absorption can be more reliable, cyan is synthetic and methyl natural, there is also adenosyl being another biologically active one.. what were your levels like? Low folate and iron also make you feel dire
Do you take magnesium? Good for relaxing
Just looked back at your old post
My vitamin levels when last tested were:
Ferritin - 97.7 [30 - 400]
Folate - serum - 35.9 [8.83 - 60.8]
Vitamin B12 - >150 [37.5 - 188]
Vitamin D - 87.9 [50 - 250]
Not bad... certainly up the Vit D as this is good for mental health 🤗
Must be a backhander! One dr decided it would be a good idea to switch me from sertraline to paroxetine. I told the private GP this and she said she never prescribed it - it’s far too hard to come off and has a low half-life.
I don’t take magnesium. What do you recommend / how much per day?
Take a look at this for a start as there are various form of magnesium I tend to pick a complex which will have generally contain 3 or 4.... you are looking for 300-400mg daily...
Not necessarily to buy this product but an explanation of each form so you can find a mix that suits
healthline.com/nutrition/ma...
drjockers.com/best-magnesiu...
Just check that it is ok to take with Sertraline maybe avoid citrate as it has a laxative effect 🤗
Hey Griffo_ how are you doing, sorry for the slow reply. I’ve been away and back into full time work. I see our dear old donkey has said all the right things. As Tatty said above, it is going to take time. I hear you in the dodgy tum and intrusive thoughts, I’ve got the T shirt on those.
Remember I mentioned early on in our discussions it might get worse before it gets better, you will need to hold out and use all the mental health strategies in your kit bag till you can blood test, and hopefully increase at 6-8 weeks, I have heard of people doing it faster, the patient info leaflet for Teva says fewer weeks, personally I need 8-10 to really settle, I always find week 4 my toughest. If you absolutely can’t wait talk to your private GP about testing and titrating up to relieve symptoms, see what she says.
Things that helped me keep my head during all this were.
Reading everything I could get my hands on related to my new diagnosis.
Noting down every single little weird symptom in a little book. With dates. This is useful to refer back to and also helps you see when you suddenly have a better day and completely forget how bad it can be.
Talking through the symptoms and garbage in my head with my very patient and understanding husband, he was really shocked at how much I had going on that was apparently not obvious on the outside. That cut me some slack at home as he tried to make life a bit easier for me.
I started Iyenga Yoga which is not the floppy relaxing kind it’s more of a full body workout this is truly one of the best things I’ve done.
Optimise everything else in your control, sleep (yeah 8 month old I know) circadian rhythm, diet and gut health, avoid fizzy drinks, increase acidity consider stopping alcohol. Gluten is the biggie for me. Start being an absolute Prince about your recovery.
Floaters yes I get these too, seems to come and go. Sudden onset is worth asking at specsavers or similar, I’ve been a couple of times and they said all normal nothing to worry about but keep coming back if you get them again.
Like TiggerMe said there is a chance the mannitol in Teva doesn’t suit you. Were you a bit constipated when hypothyroid? That’s quite common. I got a bit ‘loose’ when I was over range so it could just be your body adjusting. My body is definitely better on Aristo as the others mentioned. I cannot tolerate lactose and Teva gave me silent reflux. I split mine into quarters I’m back down to 75 at the mo.
If you feel you are being beaten up by the Levo you could split your 50mcg tablets in half and take alternate 25/50 or take 25 morning and 25 night or drop to 25 for a week or two and try going up again. There are loads of options and little tricks we all learn here.
Keep the faith, you are doing great 😊 baby steps and long term thinking. I don’t know if you are a hugger, but if you are sending you Hugs 🤗
🌱
Honestly? Pretty badly. I'm only able to eat once a day (and not much at that) due to my anxiety and nausea. I went to my NHS GP again yesterday as I just didn't know what else to do. The discomfort i was having in my sides, back and upper abdomen are back. This made my health anxiety/OCD go crazy and I've been convinced I have pancreatic cancer. He sent me for bloods (my choice, he didn't see the need to do them) and my liver function has come back fine (which I understand is a good thing when it comes to issues with the pancreas). I've got bad constipation now too which i imagine is due to not eating or drinking enough while i've been anxious. Normally I'm able to switch off in bed, but even that was difficult last night.
I just don't understand how a week ago I was on cloud 9 (compared to how I've felt for a long time anyway) and waking up at 7AM and starting work straight away (normally i'd start at 10/11) to this.
I've sent a 2-week update to the private GP i saw as i've been on them for two weeks now, so i'll see what she says.
Appreciate the hugs - thanks!
Bless you it’s so tough this.
One way it was explained to me is that your poor thyroid has been doing it’s best but when you replace the hormone it basically shuts down, so while on 50mcg which is not enough to fully replace your thyroid you will logically feel worse until fully replaced, hopefully the next titration will be an improvement. It really takes a long time to solve. 🤗
Seen an NHS dr a couple of times this week as I’ve been so low. Think I’ve found one who will take over the prescribing, as she said when I next do my bloods, make sure I do it through them.
I voiced my concerns today about me feeling more hypo now I’m on levothyroxine with it taking over. She said it doesn’t take over the thyroid but adds/helps it. Everything I’ve read on this forum says otherwise?!
My SSRIs have been upped in dosage. She said this might be why my stomach has been off if I haven’t been eating much, as Sertraline can really kill your stomach.
Yeah your doctor will say "lets late over the bloods", but they will only test TSH which tells you precisely nothing. When you make a fuss the lab will test FT4 (or if your TSH is out of range) but highly unlikely to get an NHS FT3 test. Mine says this every time and I still send off to get my FT4 and FT3 that are more meaningful for me. She hand wrote she wanted to see FT3 on the last request to the lab as she was game for trying... wasn't done.
GPs are often less informed than the life experienced members here who aren't General Practitioners but have gathered knowledge and experience and have read al the recent papers from the amazing scientific studies that are constantly coming out.
But its good you went and good she'll take it over, insist they do bloods every 6-8 weeks so you can titrate up as soon as possible, NHS GPs often want to wait 12 which is sooooo long when you are on the lowest doses, makes sense towards the top end but not on 25 and 50mcg. Did she agree to make you a prescription or will you have to go back again for that.
I'm a bit confused - weren't your SSRI's dropped down? Was it the down that upset your stomach or have they been upped before, or is that today.... sorry I can't quite follow, long day 🥱
I know we have mentioned this before but it could be the mannitol filler ingredient in Teva upsetting your stomach.
Ask if you can get a replacement prescription for 100mcg ARISTO or 100mcg VENCAMIL to try it out and explain you can split them easily in half as this one has no mannitol and no lactose.
I started on Teva, thought it was fine, was given Accord once - had an awful instant lactose reaction, changed to the pharmacy attached to the doctors surgery and begged to try Aristo, they made noises like they couldn't get it but said leave it with me, then rang me later that day to say they had loads arrive by complete coincidence and they'd put it out of reach on a high up shelf so it wouldn't get used up 🤣 I always check my bag inside the pharmacy in front of the desk and they always laugh and say... its the right one, we checked, and I always say... I trust no one 😜 They are very good about it but honestly, I don't. Where was I going with this ... Oh yeah so after Teva and Accord, I then got this Aristo and oh my goodness, not a peep out of my tummy, no rumbles, no tight barrel feeling, less skin itches.... it could be a thing for you too maybe?
They’ve upped my SSRIs due to my declining mental health. I should’ve only been coming down on them to switch over to another one, but didn’t want to switch in the end.
I’ve almost done 4 weeks on the Levo and have an appointment to see the Dr in two weeks, so hopefully she will let me do my bloods then.
I just hope she doesn’t say “you haven’t improved - no need for Levo” and takes me off it, rather than upping the dose.
So do I need to ask for TSH, T3, and T4? No doubt I’ll end up having to do a medichecks one as well.
Yes you need TSH, FT4 and FT3 in order to work out the next steps.
Try and get the blood tests done before the appointment otherwise you will be waiting around for results and have to have test another appointment to discuss and increase, keep in mind tattybogle advice about NICE guidelines for Hashimoto’s titrations until symptoms resolve .
It will be 5 weeks and 3 days that I’ve been on Levo when I see the Dr. Should I still try get a blood test in for then? Or is that too early?
I’m also really stressing about brands if my nhs dr prescribes, as then I’ll be using my usual pharmacy and don’t know what they have. So then I’ll likely be changing dose and brand.
Yeah I hear you, it’s stressful at first, I remember it well. It won’t be long before you are an old hand and all these new experiences will be water under the bridge.
Drs appt yeah a bit too soon for bloods ideally do that the following week.
Here is what I would do (and did)
1. Go and chat to the pharmacist, ask for their advice and guidance. Say you have some tummy symptoms that you think might be caused by the Teva. Explain NO lactose and ask if they stock or can get Aristo and/or Vencamil. Just a fact finding mission so not putting anyone out.
If yes
2A. Ask the kind pharmacist how to get the GP to sort the prescription for them so they can dispense the right amount. It’s often posted here that the GP can quite easily word the prescription wrong with the brand in the wrong place meaning they can’t dispense what you need. My pharmacist said that wasn’t necessary she can override at her end so has it logged I always have Aristo in the pharmacy computer system.
if no…
2b take a walk and see if you have an independent pharmacy not Boots not Lloyds, usually not the ones in the supermarkets. Ask them the questions in 2a. Keep trying till you find one, you can also do 2a by phone, if it’s too much a partner or friend can also do that for you.
3. Explain to the GP about the tummy trouble. Explain that someone else experienced similar on Teva because of the mannitol. Ask if they can request Aristo/Vencamil for you.
4. The only complication; Aristo Vencamil is currently only available in 100 mcg tablets.
So the GP just prescribes fewer tablets and you cut them up. I’m back down on 75mcg and just cut one tablet in half and one half in quarters. My GP couldn’t get her head around this at first but I explained and then she realised I was chopping the tablet up and was totally fine with that.
I use one of these for the tablet cutting
GeekerChip Pill Cutter[2 Pcs],Pill Splitter with Blade in Half Quarter,V- Grip Pill Crusher and Cutter for Tablet Vitamin Medicine,with Pill Storage Compartment(Blue+Black) amzn.eu/d/e64gPwr
Hugs 🤗🤗🤗🤗🤗🤗
TiggerMe Regenallotment
Went to see my NHS GP today for a "mental health review" following me upping my dose of SSRIs. That's not what I wanted to go for though.
I mentioned that I thought my mental health could be worse because of my thyroid - she said she wasn't sure that's a thing (yet the NICE guidelines say to test the thyroid of anyone who presents with anxiety or depression, so there must be a link)
She said to do my blood test at 8 weeks. I ony have enough Levothyroxine from the private GP to last me eight weeks. She has only given me a form for TSH. Not even T4!
I asked her if she will take over prescribing, and she said if the bloods come back indicating a need for it then she will. But what is she looking for? What level TSH? In hindsight I should have asked this question.
I feel like it has been a step backwards today.
All my aches and pains that have come back, plus other things, she puts down to my health anxiety and me being hyper aware of sensations in my body. I told her i've been having rib discomforts and she just said i'm having rib discomfort!
I have health anxiety BECAUSE of symptoms! BECAUSE of the aches and pains. Not the other way around.
I told her I feel 73, not 33 - she just laughed. It's a shame, because other than this thyroid stuff, I think the GPs at my surgery are pretty good.
I think I will probably have to book another appointment with the private GP, but will need bloods. Will I be OK to get private bloods at 7 weeks instead of 8? I only want to do that so that I can have them ready to see the private GP (or NHS one) at 8 weeks. I will still have the NHS blood test - not that it will tell me much.
Sorry for the slow reply Griffo_ haven’t been on the forum for a few days. Trying to be more ‘present’ in my home life rather than stuck to a phone. I’ve been doing the Zoe nutrition programme and that requires daily logging and app reading so being on the forum has slipped a bit. I’m off work with Covid so have more time today.
Yes do the blood test at 6-7 weeks in that case, so you have the results back in time. Have you seen SlowDragon advice re testing? Patient to patient advice to ensure you get the highest TSH etc.
No Levo for 24 hours before test. Take it after the test.
Test 9am or as close as you can manage. Fasting water only before hand
Stop any Biotin containing supplements (eg B Complex) for 5 days before hand.
Did you investigate other brands of Levo?
You can ring the private GP for a repeat prescription and buy yourself some back up stocks that way.
Strongly advise making a new post each time you have a question , there are literally thousands of helpful members here who won’t see a long old thread like this. It’s absolutely ok to keep making new posts.
Health anxiety is a swine, take care, 🌱
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