I'm hoping someone may be able to help with advice on my new symptom of insomnia. For about six weeks, I've been suffering on and off and go entire nights with no sleep. The worst was 4 nights with 2 hours sleep. I've been on 12.5mcg T3 and 125mcg of levo for about seven months now. I was feeling well apart from bloating until the insomnia started. I'm wondering if taking T3 might be to blame. When the insomnia developed, the GP did TSH and T4 tests and my results showed I could be overtreated with TSH of 0.04 and T4 of 17. Six weeks later, I'm starting to feel cold a lot, particularly after nights with no sleep. The GP performed the same tests six weeks later and TSH had climbed to 2.1 and T4 fallen to 12.1. I know further tests are useful but this is all I have right now.
My best guess is that repeated nights with no sleep have placed extra demands on the thyroid and it can't respond, leading to the changes in test results that make it seem like I'm under-treated.
Normally I'd expect to respond to these results with more hormones, but as mine may have been induced by overstimulation, I wonder whether I should go back to T4 alone and see if I sleep? I certainly used to when I first became ill. I can't talk to my Endo until October 26th and I'm thinking of dropping down to 6.25mcg of T3 straightaway. I know T3 has worked wonders for many, but maybe not me?
It may just be a psychological thing as I've got quite anxious in recent months. Having said that, last night I was feeling happy enough but just very wired throughout the night.
One other thing to mention is that I've been recently diagnosed with h pylori and have undergone treatment with antibiotics. I'll be re-tested next week to see if it's eradicated the bug. I'm hoping it'll allow me to eat more and get better nourishment from food.
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TiredDad
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It is not possible to say if your symptoms are caused by too much T3 unless you have recent FT3 results. A below range TSH is normal when on T3 and should not be interpreted to mean overmedicated (although most doctors will think so). When on T3+T4, you need to look at your FT3 and FT4 levels. Some need both high in range, others are fine with midrange or even lower FT4 levels and FT3 in the upper 25% of range. So it´s highly individual and may take some time to find your optimal dose.
You don´t include reference ranges, but the usual ref ranges for FT4 are 9-20 or 10-22 pmol/L. So yours are not over range in any case.
Since it´s very individual where we need our levels to be, it is of course possible that you are taking too much T3 for your needs (even if FT3 levels are in range). But your symptoms make me thing of adrenal fatigue. It could be that your adrenal glands cannot handle T3 since it´s stronger and more active than T4, so puts more of a strain on the adrenal glands. Some alternative/natural doctors will treat adrenal fatigue before putting patients on thyroid hormone. That does not necessarily mean you don´t need T3, though, only that your body may not be able to handle it right now. So, a good idea might be to order a 24 h cortisol saliva test from Regenerus or Genova to see how your body secretes cortisol throughout the day; levels should be highest in the morning and lowest at bedtime. In adrenal fatigue, you can produce too much cortisol at night, resulting in relestless sleep. Though not a recognised medical condition, adrenal fatigue is common in hypothyroidism (as low thyroid function affects the adrenal glands) and can affect how your body responds to thyroid hormone replacement.
Your most recent FT4 levels show you are undermedicated as levels are at bottom of range. I wonder if your doctor knows what s/he´s doing? No wonder hypo symptoms such as feeling cold appear. If on T4 only, you are likely to need FT4 levels in the upper part of range or even at the top of range to ensure adequate T4 to T3 conversion.
Was it your doctor who prescribed T3, or have you been self-medicating?
Unfortunately, a doctor who goes by the TSH and lowers your levo to the point of making your hypo is probably not going to be able to help you, especially not if you need T3 as well.
The good news is that there is a lot of expertise and experience on this forum so you are likely to get very good advice from members.
Thanks for the advice. I couldn't include the reference ranges because I was just told the numbers over the phone by the GP's receptionist.
I think I should probably try to put up with my insomnia for 2 weeks and see what a full test from medichecks reveals. My endo knows what he's doing (the GP less so) but I haven't been able to see him in recent weeks since my results started jumping around all over the place. Hopefully he'll be able to shed some light on what's going on when I have some test results for him to work with. He's the one who prescribed me T3 and he isn't aware of the weird and alarming results from the GP as yet. He doesn't just work with TSH.
I've read that sleep deprivation has been shown to increase TSH, and T3+ T4, so my insomnia could be skewing my test results. The research on sleep deprivation is with euthyroid patients so you could imagine that, for people like us, the body would attempt to increase levels of T4 and T3 and not be able to.
Hi TiredDad . i think your NHS bloods will probably be tested at the same hospital lab as mine are (RLI) .. if so, their range for fT4 is FT4 [7.9-14] which would make your previous fT4 of 17 'over range' (149%) , and your latest of 12.1 'in range' (68%) , so still not very low. Hidden
(This is the fT4 range they have been using for the last few yrs, but i haven't had bloods for 12 mths, so it could have been changed since.. but i doubt it )
I think you're right to keep same dose for awhile longer until effect of antibiotics is over .. i liken antibiotics to a nuclear bomb on your body.. necessary sometimes , but unfortunately kills everything good and bad alike .. so look after putting the good stuff back in . and tell yourself the insomnia is just an effect of all this drastic changes in your gut /brain connection ... try not to get stressed about the lack of sleep. It's hard enough not having enough sleep , without worrying about it as well.
Hopefully a full blood test in a few weeks time will be more enlightening about what to do next ,, but it wouldn't surprise me if killing off the H-pylori does alter your thyroid med needs long term, but it's also quite likely that all those antibiotics will have messed up your dose in the short term.
So you’ve been on combo treatment for 7mths but I’m the last 6wks you’ve had bloating amd insomnia and diagnosed with pylori?
However, despite being on combo treatment, your GP does not understand that you need FT3 testing?
If I’ve gotten the jist of what’s happening with you, despite not having a FT3 reference, based on TSH and FT4 results only, I’d say you are now under-medicated. I definitely would not be lowering my thyroid meds. You need an FT3 test and also vitamin and mineral tested too.
I may have explained myself poorly (I'm sleep-deprived!). I've had the bloating for nearly 2 years, not six weeks. I hope the eradication of H Pylori will get rid of the bloating.
I've had insomnia for about six weeks. It was brought on initially by worries about being ill. Now I'm not sleeping even when I feel quite calm.
Yes, you're right that it's poor that the GP didn't test T3. I'll have to get some private tests done and see if it helps me and the endo to work out what's wrong.
I didn't know that antibiotics can reduce absorption of levothyroxine. Maybe it could be undermedication again. I'm confused now, especially because the insomnia started in the week I had the antibiotics, so it would be surprising for it to have an effect on hormone levels that quickly.
I haven't considered taking the T3 at bed time because I thought it would make insomnia worse if anything. Doesn't it raise your pulse? Not what you want if you're trying to calm down and go to sleep? The endo has me taking it at 6am and 1pm so I get the benefit in waking hours.
Taking a quality probiotic before commencing but also during and after antibiotics is helpful in keeping the gut biome in balance and/kefir for those who don’t have intolerances. Yeo make a really nice kefir
Many people find that taking a probiotic all year round helpful. As do I. I get less bloating nowadays and even less when I eliminate gluten but that’s another story!
Change nothing otherwise you risk making things worse. Antibiotics can affect absorption. This may be what has reduced your hormone levels.
Without ft3 being tested you have no idea if you are over or under medicated.
My guess is under.
You need to wait for things to settle again as your gut and antibiotics are at the root cause.
Re t3 not being of benefit idea. It is not a quick or instant fix. It has taken 2 years of slow and low adjustments of lio and levo doses for me to find doses I am happy with and now a further 6 months later I am beginning to feel the real benefits.
I agree that changing things now would be a mistake. It's tempting when sleeping is so hard. If there's one good thing I can remember about being very under-treated, I got plenty of sleep.
I can sympathise...I spent years being unable to sleep properly. I was hypo when on T4 only, in a lot of pain, and had very low nutrient levels. A lack of sleep affects everything. Hopefully you will be able to put this behind you soon, and your next results will be negative. Dr Stasha Gominak (neurologist and sleep specialist) has lots of videos re sleep. At worst, they may help you while away the long, sleepless hours ☹️
I found her protocol very helpful, and managed to restore a normal sleep pattern and lose my awful daily headaches. It took a while though, to restore all the B vitamins and D to the correct levels, and I had to buy separate B's in addition to the complex, but I got there 😊 This thyroid business can get so complicated! Good luck🍀
You might have got sleep, but I'm betting it wasn't refreshing sleep.
Everyone else has said it, but don't reduce your T3. We have all been frightened off it by medical misinformation and so when we get some we tend to blame it and try to stop it for everything that goes wrong.
Phone the surgery reception and ask for a copy of your results to be emailed to you, with the lab ranges. That gets you around the problem of only being given half the info. You are legally entitled to copies of your results. That will help you to know where in the range you fall.
But it is pointless doing TSH and FT4 when you are on T3 as well.
Hey that's great you've had the gut investigated, even if the results weren't so inviting 😬.
H.Pylori has far reaching tentacles & this is a perfect possible reason why meds weren't previously working and for present symptoms.
Many doctors aren't clued up on best antibiotics as are dependant on exactly where H. Pylori is located. Are you having triple therapy? Latest research is suggesting Metronidazole, Tetracycline and Bismuth subsalicylate, or quadruple therapy the same with a PPI. We previously discussed the possibility of low stomach acid & supplementing Betaine HCL but this mustn't be done when eradicating H.Pylori which will hopefully go a long way in repairing gut issues anyway.
Your body is going through a lot and antibiotics can effect med absorption. Sleeplessness, feeling wired & ongoing anxiety can be the result of adrenals issues (excess adrenaline), inadequate uptake of meds and a possible remaining intolerance of T3. How are iron levels? How are VitB12, folate & Vit D levels. To overcome H.Pylori and get everything working effectively you are going to need all cofactors to be optimal. Also, according to Isabella Wentz adding S. Boulardii probiotic (which works differently from others) increases eradication rates whilst reducing gut dysbiosis resulting from the strong antibiotic use.
Hi. Thanks. Yeah, it was relief when I finally got a diagnosis for what could be causing my digestive problems. The Endo said the same as you, i.e. that it could be responsible for lingering thyroid symptoms even when tests showed my thyroid condition was well controlled.
I was given the standard NHS first line treatment of omeprazole, amoxicillin and clarithromycin. There's been some improvement in symptoms but my digestion remains slow and my appetite low. I'll be returning the sample for them to test next week so I should know soon if it's gone or not. Even if it has gone, I suppose it could take a while to get better. I just pray it's the only cause of my digestive woes and things improve. I'd feel more confident with the thyroid challenges if I could put a bit of weight on.
I haven't had my vitamins tested since August, apart from an iron panel last week. My iron was high at 31.5 umol/L (10.6 - 28.3), which surprised me. Maybe I'm having more joy with absorbing it now. I also drink ensure drinks which contain iron I think. My transferrin saturation was also high at 59% (20 - 55 R), while my ferritin was normal at 117ug/L
(30 - 400). TIBC was also normal at 53 umol/L (41 - 77). Back in August, I had other vitamin results including Folate serum 10.5 ug/L > 2.9 R; Vitamin B12: 108pmol/L (25.1 - 165); VITAMIN D 100 nmol/L (50 - 200). As far as I can see, none of them are alarming.
I've been taking VSL #3 Probiotic, along with kefir, but I need to be better at taking the probiotic. I guess I could give the S. Boulardii probiotic a try too.
You don't want the high iron, it's toxic! It's also unusual for iron to elevate too much on diet alone. Did GP suggest retesting in say 4-6 months? Agree other nutrients look fine.
Also did GP suggest testing family for H.Pylori? It can live in saliva and is common in children.
One possibility is that your body has been " happy" to have T3 added but symptoms suggest it now needs more .
Anxiety, exhaustion, antibiotics all contribute to ill health when on thyroid meds.Antibiotics have made me feel very unwell...things improved after completion of the course.
IBS is a symptom of undermedication...been there!
Following diagnosis TSH is not a reliable guide to dosing.
FT3, being the active thyroid hormone, is the most important reading but medics just don't seem to understand this....they are trained to focus on TSH.
If your TSH is suppressed then they may go on to test FT3 and FT4....happened to me once. I self medicate and test privately
Difficult to comment further without full testing -
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies
I wouldn't change your dose until the antibiotic is out of your system, then I would have a full thyroid test as above
I suspect that your nutrients may be deficient, which can affect thyroid function and that you are also undermedicated, but without full labs that's only speculation!
I'm high dose T3-only and take it at bedtime, it keeps it away from food and drinks. Some people find T3 helps them to sleep.
I'm afraid trial and error is a big part of thyroid treatment because we are all different with different needs...just a few thoughts you might wish to consider.
Hello TiredDad, this sounds pretty grim for you. This may not be relevant to you but I cannot sleep if I don't eat enough, or, if I don't eat enough in the evening. Could you take some liquid nourishment in the evening to see if that helps?
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