I am currently taking 125 mcg Levo and 10mcg T3 daily. I take the meds together around 2pm. Having finally got relief from so many symptoms (eg fatigue, muscle pains, zombie brain, low mood etc) recently, I am experiencing almost daily energy 'crashes'. They are quite overwhelming. I get a headache and am so exhausted I can barely function. They last about 2-3 hours on average, sometimes more.
Has anyone else experienced this kind of thing? I would be really grateful for any advice or suggestions.
Thank you
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Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Levo is a very fussy hormone and does'nt like being taken with anything else other than water.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
What are your latest vitamin results?
What are you supplementing with?
We need OPTIMAL vitamin levels for our thyroid hormone to work well.
From what you and others are saying, it seems that I need to change the way I'm taking my meds - ie seperately and at different times, perhaps. My B12, vit D, folate all good at last test, and I continue to supplement. If my results are 'off' this time, I will post them and seek further help.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thanks for your reply. I have read your advice re: blood tests etc very carefully previously and have followed your advice to the letter, so I'm thinking the 'crashes' are due to something else. I don't think my hypothyroidism is autoimmune - I say 'think' as it is no. 1 on a list of questions for doc at next week's appointment.
I note your comment about the brand of meds - question no 2, for doc., although the brands have been consistent over the last year and a half, during which time the 'crashes' have started.
Thanks for working out the percentages, SlowDragon - they don't look great, do they? When I was finally diagnosed my TSH was just over 4.0 - not particularly high compared to many people, and my T4 was below range. Does it follow that a higher initial TSH requires more Levo, and a 'lowish' one like mine would require less Levo? I worry that my dose seems to go up and up when I wasn't 'very hypo' to start with. Or am I missing the point by miles? (I hope I've explained that properly.)
Yes, many members have sluggish/poor responding TSH at diagnosis and during treatment…..this can make it much harder to get and maintain correct treatment
People who get diagnosed when TSH is sky high often recover easier
A) medics take more notice
B) TSH responds rapidly to any deficiency
You should be aiming to maintain correct for you levels of Ft4 and Ft3 …..this is likely to be at least 60% through range minimum. TSH likely to be below range…..ignore it
Splitting dose T3 frequently necessary
I find it best to split T3 as 4 x 5mcg doses at roughly 6 hour intervals and Levo at bedtime
Personally I find it as important to maintain good Ft4 as well as good Ft3
(took 7 years experimenting with dose levels and timings) and absolutely essential to maintain optimal vitamin levels
That's very interesting and you have explained it very clearly. You say it took you 7 years to get it right, which gives me hope as I am only 3 years down the road. I am glad that you also think that T4 should be at a decent % level, as this is something I have started to realise myself recently.
My vitamins + folate are good - I have been supplementing and I monitor. I have been on a gluten free diet for 5 months now, and I eat no processed food and very little sugar. I am still too fat (Levo?) and while some symptoms have gone or improved, I'm not right yet.
I only take 5mcg of T3 - do I still need to be splitting the dose? Also, am I right to think that taking T3 will lower the T4 - and if so, should T4 still be 50-60% through the range? ie would I still need to up dose of Levo? It sounds counter-intuitive to take T3 which lowers T4 and then have to take more Levo to up the T4, but maybe I'm not understanding it?
A lot of questions, I'm afraid. And probably a lot of confused thinking on my part. If you have a minute, I'd be glad of your thoughts.
Often adding T3 results in lower Ft4 …..why ….i think it’s because metabolism improves and you start using/converting better
Frequently endocrinologist will reduce levothyroxine dose when starting a patient on T3. Very often this reduction seems to either not be needed at all or is too much
Personally I needed to be dairy free as well as gluten free
Yes, I've been getting those crashes with severe headaches and fatigue. Its gradually getting better as I increase my t3 (currently 15mcg). Have you tried splitting your dose to even things out through the day? At the moment I take 75mcg levo + 5mcg lio at 7.30am, then 10mcg lio at 12.30 (I was splitting it and taking 5mcg, with 5mcg at 5.30pm), then 12.5mcg levo at bedtime. I've found this gives me more energy during the day, then the tiny bit of levo helps me sleep through the night. I still have a late afternoon crash if I've had a fairly active day, but hopefully when I eventually add in some more lio that will help
You mention splitting doses, and also possibly 'upping' T3 which sounds like something well worth trying. I have a doctor's appointment next week and have taken a blood test this morning - results pending., but I find that getting info from this site BEFORE seeing the doc is invaluable. It is reassuring (not that I'd wish it on anyone) to know that someone else has experienced these symptoms.
Yes, I agree, you need to go to the gp armed with knowledge, knowing exactly what you want! Also, check your vitamins - I stopped taking B complex for a few months which was a mistake, now back on them again which is helping.
I used to get the same symptoms you mention, and in my case I think the problem might be low blood sugar.
I used to think the problem was also related to low T3, particularly in the early years of taking thyroid hormones but I'm not so convinced about that now - my last Free T3 result was really quite high in range.
Do you get your crashes couple of hours after taking your medications? It sounds like over medication. Think it would be best to split your medication throughout the day and see how you feel. I always split my T3 8hrs apart. I also split my T4 levo dose. If I took it all at once I would definitely crash a couple of hours later. Once you’ve split your doses then get your bloods done to see if they improve and importantly see how you’re feeling.
do you notice feeling any different after eating different things for lunch? I have this at around 3-4pm and really improved when I gave up caffeine and had less carby breakfast and lunch. I was having massive blood sugar crashes- feeling dreadful so having sugar and caffeine and then riding the blood sugar rollercoaster all day.
If you have hashimotos it could be your diet - high carb / high sugar foods can cause massive energy drops when you have hashimotos. Like i could hardly keep my eyes open after eating something sweet.
Thanks to SecondAngel, and all replies. It's so helpful to get various opinions/options to try.
I gave up caffeine about 5 years ago - before I was diagnosed, as I realised it gave me bad headaches (I gave up alcohol for the same reason many years before) so maybe caffeine isn't the problem this time. But I do think the comments about splitting doses, and also blood sugar levels could well be relevant. I get these 'crashes' both before and after taking meds (I have varied times) - BUT crucially I nearly always get them after lunch , so blood sugar could be the culprit. I have a healthy, gluten free diet and am carful about sugar intake - perhaps I need to be even more careful?
The last thing I would love advice on is that one of Levo's side effects is headaches. Do brands vary in this regard? I have always suffered from Migraine, but this day-in-day-out situation is nearly impossible to cope with.
Back to those B vitamins again....Studies have suggested that B6, B9, and B12 can reduce the severity and frequency of migraine attacks.
This 16-week study on women with EM showed that supplementation with vitamin B9, B1, B6, B12, and a combination of these vitamins resulted in a significant decrease in the frequency of headache attacks and number of abortive drugs consumed, and improved the migraine disability score compared with the placebo group
Just a thought, our daughter used to have daily migraines - after suffering for a number of years found dairy was the culprit. She had to take daily migraine meds to get through the day but after seeing Dr Sarah Myhill the culprit was revealed. she now has oat milk+never looked back.
Thanks for your reply. I'm glad your daughter has got a result. Constant headaches are awful! I have tried many headache tablets without success, so am interested to know which tablets taken daily helped her finding out about the dairy issue. It might help me in the short term, and I could then (reluctantly, I must admit) to cut out dairy myself.
Our daughter's ditching dairy came about after a friend told me about Dr Sarah Myhill, a private GP (she's based in Wales) and I managed to get an appointment. Our daughter had also been diagnosed with IBS (a dustbin diagnosis as far as Dr Myhill is concerned) following helicobacter pylori when a young teen. She suffered so much pain+bloating+we paid for private consultant+never got to bottom of the issue, just an IBS label. Dr Myhill said gluten free for IBS and dairy free for the migraines. As soon as dairy stopped, so did the migraines and going gf helped so so much with the so-called IBS. Dr Myhill was just brilliant!
Hi, and thank you four your message. I found Dr Myhill myself but was living abroad at the time and could not get an appointment - still haven't been able to, sadly.
The dairy free solution is well worth trying, as my headache situation is awful.
With our daughter who, by that time had been suffering for about 10 yrs, I emailed giving the details of her plight (as by then she wasn't taking new patients) and needed advice if nothing else. We had relatives living about an hour away+referred to this. So, surprisingly, got an email back saying an appt available in 6 weeks, which we jumped at. Had to fill in a medical form to send in prior to the appt. Well worth the drive+cost. Could you get some info/support from Dr Myhill, even if no face-to-face appt available. I would ask! If you don't ask ......! Trust you get sorted as migraines are so painful+debilitating.
Thanks for the info -a few years ago I did see that Dr Myhill offered online advice. I think the cost was about £300 at that time (if I remember right). I felt that I really did need to have a face to face meeting, so did not follow up at that time. Maybe I'll try again.
I have just received the result of a folate blood test - 6.5 ie below range. This may be the problem! I will fix this first, then maybe up the Levo, and try dairy free if I still have a problem.
Thank you. I really appreciate your advice, indeed, all the helpful advice.
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