GP increased my levo to 100mcg at the end of April 2024, but I decided to go low/slow and just take 87.5mcg daily , at least until my nhs test, partly to try to prevent my tsh going below range as I knew my GP would try to decrease the dose.
I don’t feel horrendous…now, although it has taken a good few weeks for this increase from 75 to 87.5 to settle/symptoms to level out. I did actually have a change of brand at the same time as I had the change of dose(from combo of Teva and wockhardt to Accord).
That said I do feel like I would benefit from going up to the full 100mcg dose as I still feel cold, on and off, and a bit of constipation creeping back in again.
Do you think I have room for the extra 12.5mcg daily increase? I’m a bit worried about my tsh dropping below range and never recovering again! Or going over-medicated. Although….I do have a year to go now until my next NHS test…
Question: Should I leave it a bit longer retest with mmh and then decide…
or should I just up the dose to 100mcg daily…
or maybe there is another daily/weekly dosing regime that would take it up a bit but not to the full 700mcg per week? Can’t decide what to do. Any thoughts to help me decide would be appreciated. What would you do?
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Hiya Dahliasanddaisies! I think I might be looking at needing to add some t3 at some stage. I’d really like to get my t4 up a bit and see if that helps at all. At 87.5mcg the t4 seems to be holding steady for now at around 17, but I do think it will drop again as time goes on. I’d like to try and get to a levo dose that will hold the t4 up and steady at around 75%-ish. My TSH seems to react quickly to an increase but then the t4 drops, t3 drops and tsh moves upwards like a snail!
Haven’t tested my vitamins yet this year. Last time my b12, vit d and folate were all good, but my ferritin was low. I was having very heavy hrt withdrawal bleeds/periods, but my last bleed was really, really light (more like a withdrawal bleed than a period) so I think I might have just tipped over from perimeno into menopause now. I’m hoping that will help my ferritin. Maybe I need to do another check now. An extra 12.5 a couple of times a week is a good idea. I might give that a go. Thanks DandD! x
Yes I know what you mean about levels. When I went up to 75 my TSH stayed around 1 for 5-6 months, then shot up to 4. I've no idea what it's going to be like when I test again in September.
You can but try a little increase for 6 weeks and see how you go. If you go slowly hopefully you wont over shoot your 'sweet spot'!
I think when I went to 75mcg my tsh dropped to 0.1 and stayed there for months and then eventually went to 1.96. Since the increase to 87.5 it’s been 0.66, 0.83 now 0.87…bloody glaciers move quicker!! Might do a small increase for now and then retest. I think my pituitary is asleep half of the time.
You are under-medicated no matter what the TSH says. And you cannot spend your life worrying about the TSH if you want to be well. It's the FT3 that is the most important, and yours is so low it's just hanging onto the bottom of the range by the skin of its teath.
You're not a very good converter, and that may be because of your low-ish TSH, but there's not a lot you can do about it. Ideally you need some T3 added to your levo, but that would suppress your TSH. Although that's only a problem for doctors, not for patients that actually live with the TSH. You don't even need it because it's not doing much.
Thank you GG. It’s a quandary. All the GPs at my practice worship TSH. I don’t know what to do. If i ask to see an nhs endo for t3 it will probably be months and even then they might not agree. If I see a private GP, I’d probably get the t3 I need, but that would prob suppress my tsh as you say and then my gp would question that and then reduce my levo. Same with Roseway labs. I’m not sure I can afford to pay privately for all my bloods and reviews and treatment. Not sure what to do…what i can do.
I don’t blame you for doing that at all - must be great not having to deal with all the hoop-jumping and TSH-worshippers! I don’t feel confident or comfortable to go down that route for myself. I need to mull over the options. I might get an appt with The Thyroid Clinic or somewhere like that that does online consultations and see what they say.
If you learn the basics of how it all works, and stay in touch with those that can help you, and learn to read your own body, self-treating is not all that scary or intimidating. After all, you couldn't make a worse hash of it that some of these dumb doctors, could you! Look at what they're doing to you! Are they making you better? No. But they haven't killed you yet, so it can be all that difficult.
“After all, you couldn't make a worse hash of it that some of these dumb doctors, could you! Look at what they're doing to you! Are they making you better? No. But they haven't killed you yet, so it can be all that difficult.”
Oh that did make me properly laugh out loud! Sooo true! Thanks GG. I dunno. I need to mull it all over think. I might make a private appt with a gp who has been recommended…run it all by them…last ditch attempt at some sanity.
Do you think it’s worth increasing the levo dose a little in the meantime?
You could self source some T3, its much cheaper than going private and you are in control of dosages, timings. Lots of us do it, ideally everyone would get it via the NHS but we dont live in an ideal world, unfortunately.
Looking at your poor conversion its looking very likely that you'll end up needing T3 at some point. If its an avenue you want to consider you could post asking for PM sources.
Thank you Sparklingsunshine, I don’t want to self-source if I can avoid it…although there may come a point where I can’t avoid it. The thought makes me very anxious though. Very kind of you to offer info re:sources. I’ll bear it it mind.
I started last December. I went upto 200mcg Levo and although my FT4 was very high, in range but still too high, my FT3 wasn't reflecting that. So I decided to add T3, which has worked well for me. Long term high FT4 can have health implications.
I do completely understand about not wanting to self source though. I know a lot of people like the reassurance of having a doctor in charge and it can be scary doing it diy. I think though that after 4 years of messing about with various things that werent working I was ready to try something new.
My NHS area is one of the better ones for prescribing T3 but I didnt fancy the long wait to see an Endo or the disappointment of them saying no, or being beholden to them for how much I could take. There's a lot of experience on the forum from those self sourcing T3 and I've found it quite liberating being able to please myself.
I can definitely see the benefits. I’ve suffered for a few years now , after being lumbered with the all in your head then fibro/cfs labels. I think I’ve been soooo slowed down by it all that it’s taking me longer to reach the end of my tether! 😂
Totally agree - al that waiting for the nhs endo….will it be a yay or a nay?…followed by all the malarkey about dose and tsh…urrrghhh…fills me with dread. With my tsh as it is my Gp would probably refuse to refer me anyway. I’m very scared of the DIY route. Thanks for sharing your experiences.
Everyone else gave you the best advice, so just a theoretical question - if your NHs doctor knows less than you do, and certainly less than the collective wisdom of the forum, then what are you worried about taking your dosing into your own hands?
If it’s money or something like that, makes sense, but that’s different than being scared.
Genuine question, not being sarcastic, wondering what you will be losing by departing the NHS route?
Also - your free Ts are so low that as everyone says, if you try to outsmart your TSH you’ll just prolong feeling bad.
Btw, my TSH leads with a .0
I’ll be revisiting in my own post soon, but glad to hear your update!!
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