I’m on 87.5mcg levo for now (have been prescribed 100mcg, but am increasing slowly) and I plan to test again in another couple of weeks with MMH to see how my levels are doing. Over the past two weeks I’ve felt really well and have been out and about more - walking, shopping, out for coffee (only ever 1 cup), just generally doing so much more because I’ve felt well and lots of energy.
On Thursday, I felt shattered and unwell - as if I had a cold coming - so I just rested, took paracetamol and felt better on Friday so went out and about again for a walk and to the cafe for a coffee (did that Friday and Saturday). Afterwards, both occasions, I started to feel lightheaded and floaty and a little bit nauseous. I just thought I’d done to much again so decided to have a day at home today, taking it easy. Felt absolutely fine, but then my husband made me a coffee from the coffee machine and within about fifteen minutes I started to feel that same lightheaded, floaty, detached kind of feeeling. Now I’m wondering if it’s actually the coffee/caffeine that’s causing the issue.
I’m not overmedicated (if anything I’m still undermedicated, but am taking the increases slowly), my pulse and bp are ok. I’ve been gluten free for a few months and am doing great with that. I take my levo (same make) early am and at least three to fours hours before any coffee.
Is it possible to develop a sudden caffeine sensitivity? Anyone else had the same thing?
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JoJoloveschocolate
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Thanks for your reply, Buddy. I think I’ll stop the coffee for a few days and see if that has any effect on the light-headed/floaty feeling. Another thing to add to the long list of weird stuff that keeps happening!
Thanks for your reply, Obsdian. Sorry to hear that you have had something similar happen. How did it make you feel? I just get a feeling of being lightheaded and “floaty”, kind of on the edge of fainting, a bit of nausea, but not jittery or racing pulse like I would have expected.
I think our metabolism is undergoing pretty drastic changes when commencing thyroid medication. Anything else remotely able to impinge on metabolism (coffee) is bound to affect this process - for some people! The metabolism is effectively more sensitive at this time. Other things like ashwaganda, Gingko Biloba, green tea, sugar and even chocolate (the caffeine in it) can do this. Some of us have to be very careful and give ourselves plenty of support at this time by avoiding anything remotely stimulant. Previously I was practically running on these ‘stimulants’ trying to get energy. It creates a hypoglycaemic effect. It can also affect Hba1c numbers. This is reported from time to time on the Forum, even more noticeable when T3 attempted.
This is my very own experience. Both when I started Levo but much more so when introducing T3. I have no idea whether it’s permanent or not but I hope once truly stable on T3 my body should again be able to deal with this eventuality.
Makes sense. Funny, but when I have these lightheaded episodes I do feel ravenous, maybe it is affecting my blood sugar. I ‘ll stay off caffeine for a while and see what happens. Thanks for your reply, arT istapple.
Just realised the connection to your tag. Maybe you have already sensed this reaction in yourself on some level and chosen your tag wisely. Remember if you are a keen coffee drinker, stopping suddenly can also increase symptoms.
Hey JoJoloveschocolate I think we are at pretty similar stages. I've just finished 5 weeks of 87.5 trying to get up to 100.
I gave up caffeine in January as I was finding it exacerbated my anxiety and left me jittery. The floaty/light headed/nausea thing happens to me too, but I think it's either anxiety or it's what happens when I've 'over done it'. I have to rest for a while and it goes away.
I also found that weeks 2-4 on 87.5 I was feeling pretty good, started going out more but week 5 was not good and it was quite sudden, I just woke up feeling exhausted and it hasn't really gone away again yet. I'm now 5 days into 100mcg. I hope I get the good bit back again soon!!
Thanks for sharing this Dahliasanddaisies. I was just sitting here thinking it through and it’s either: caffeine, overdoing things, maybe dehydration, needing a levo increase….or all of the above! I’ll leave the coffee out today, drink more water, have a couple of days rest and see if it still happens. I definitely overdid things last week because I was feeling great so I was here, there and everywhere and ended up walking loads and shopping and chatting to everyone (now week 10, I think, on the 87.5mcg). I was going to do a thyroid test at week 12, but if this floaty lightheadedness doesn’t get better this week, I’ll do it next monday. I haven’t increased to 100mcg yet because my last tsh was 0.66 and I don’t want to drop it below range in case my gp asks for a blood test. It’s all very complex isn’t it… trying to get things stable and keep them stable…like trying to spin plates…juggle cats….while riding a unicycle! “Get the good bit back again” soon! Yep..definitely sums it up! And the “bad bit” throws up all kinds of weird issues, like a permanent game of whack-a-mole!
Yes it's a nightmare trying to work out what's causing what and how to fix it! The juggle is so wearing. I love coffee too this bloody condition has stopped me eating or drinking anything good!
Fingers crossed your TSH hasn't dropped too much. I really find TSH such a random test though, on 75mcg mine was 1 for about 6 months (still felt crap) then all of a sudden it jumped to 3.5 (my T3/T4 not moved much). It also was 3.5 when I was on 25mcg...so it's all a bit stupid.
I've got to wait until 1st week of September to do blood test. Feels like a lifetime (and a whole school holiday away!)
Totally agree - it really is very wearing, does my head in. After so many years of illness I feel like it’s now become a way of life! I just got out of bed after crawling back in for another snooze and starting thinking, actually this could be period/hormone related. I had regular periods until I started levo and then they went haywire with a period every two weeks, but now I realise I’ve missed the two week date and the four week date too, which was last week…maybe the light-headedness is something to do with that! I’m on hrt for night sweats and hot flushes, but now maybe I’ve finally tipped over into post-meno.
The TSH is weird. Mine drops like a stone with a levo increase, my t’s go up a bit then hold for a while before slowly dropping again and the tsh rises very, very slowly again. My gp surgery only check tsh though so I want to try and keep it from becoming suppressed…if possible. My plan is to check it next week with MMH - if the tsh has shot up I’ll ask my gp for a test; if it’s still low I’ll carry on with 87.5 for now, if it’s around 2 I’ll increase to the full 100mcg. The whole condition is all-consuming isn’t it…
Yes it's definitely taken over my life in the last year. It's the never knowing how you'll feel which is also so frustrating, planning anything is a risk. Good plan ref your levels, don't want to spook the GP. My GP refused an increase wity a TSH of 3.5 (it is range..hahaha). I've paid privately for an increase to 100. Hopefully I can 'prove' to the GP that it's the right decision and then she will agree to increase my levo on the NHS. It's such a song and dance
refused an increase with a tsh of 3.5! Nuts! My Gp has put in my notes now that I actually feel better with tsh running low in the range. The last two times I had a return of symptoms they did blood tests and my tsh was 1.96 both times so they couldn't really argue that when my tsh was getting towards 2 it was my tipping point. I convinced them by asking for a “trial” increase each time.
I'm yet to find a GP at the surgery who has a clue. They are all so freaked out by TSH ranges. This is my 2nd GP practice and about the 6th GP I've seen. She's the female hormone specialist which is hilarious.
Grrrrrrrrr…it’s so frustrating…boils my p*ss! And yet the private people have a agreed you need an increase!!! I don’t understand this huge divide between what the gps know and what the private gp knows/understands. If I had the cash I’d be private all the way on this hashi/hypo malarkey.
*Boils my piss* hahaha Yes I know, the private GP is also an NHS GP but she has Hashimotos so gets it is suppose. I just don't have the energy to fight with the NHS about it anymore. It's been 3 years of me telling them I'm not well (I've got long covid apparently) convenient there isn't anything they can do for me.
Been offered antidepressants and HRT (tried that). If I ever get well, I will look forward to writing a very long letter to the GP practice about my treatment and their incompetence.
I totally understand what you mean - no energy to fight any more…it’s draining.I was lumbered with convenient/no treatment diagnoses of FMS and CFS/ME, but I’m sure it was my thyroid back then that was the real issue. Even though my tsh was “in range” it was heading towards 4 even then. I don’t think they tested antibodies, but even if they did they only do the tpo and i found out later i was only positive for the tgab. Last year I tested myself with a finger prick test because the symptoms were out of control and the constipation was getting worse and worse. The test showed mildly underperforming thyroid with a t4 of 12.3 on a range that started at 12! The gp retested and offered me a “trial” of levo which has carried on.
Are you with The Thyroid Clinic? I looked at them a while back because they write to the gp if necessary. I thought it might be a useful option in the future if my gp was reluctant to increase the dose.
Oh funny (not funny!)we have very similar experiences then. Chronic fatigue was suggested to me but with 'long covid' now muddying the waters, they didn't pursue this. Yes I'm seeing The Thyroid Clinic. It's a means to an end, definitely worth considering if you get to a point where your not improved and the GP won't help anymore. They can prescribe T3.
I was diagnosed CFS in 2018/19, but my multitude of problems started some time before that. I kept mentioning thyroid because all my symptoms sounded exactly like that and my mum has Graves and my nan and auntie had hypo. I think my tsh is a bit sluggish because I think it really should have been higher with a t4 at the bottom of the range. After the CfS diagnosis people just kept saying every symptom/problem was down to that. I coukdn’t carry on working because of the fatigue and pain.
I’ll definitely keep the thyroid clinic in mind. My GP is an older woman and I think she has thyroid issues herself because she’s so easy to deal with. When a locum refused my last increase she gave a second opinion and had no problem at all prescribing the 100mcg and documenting that i was better with tsh running low. I stick with her for now and take things slowly. Hope you manage to get the increase soon.
Well I'm glad you have a sympathetic GP, it gives me hope! I'm sorry you've been messed around for so long. Here's to a healthy 2025!! Thanks to the NHS app I can see that blood tests I had in 2014 to establish why I kept miscarrying show my TSH as elevated at 4. Which back then was over range. They never told me this. Now the policy is to get TSH to under 2.5 for women trying to conceive. I'm so angry that I wasn't informed and even though I now have a lovely boy, my horrendous journey with it all could have been helped. And maybe if I'd have started levo back then, I wouldn't have got so poorly this last year.
That is shocking! Really sorry to hear what you have been through, so glad you have your lovely boy. The more I hear people’s stories related to hashis, and how they’ve been treated the more angry it makes me. I think I walked around in a daze for years just accepting everything I was told because I felt too ill and too confused to questions things. It’s really like kicking the crap out of people who are already down. There are some good gps around, keeping my fingers crossed that my gp doesn’t retire any time soon! And yes - hoping 2025 brings much better health and stability for us all. Wouldn’t that be something. x
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this bloody condition has stopped me eating or drinking anything good! 
Have been prescribed T3!
Timing of levothyroxine dose
Severe lightheadedness? 
TSH going up on Levo?
