Terrible insomnia, at my wits end, do I even need T3?

So I've just made a second attempt to take 5mcg of Thybon Henning with 75mcg of Levo. I've experimented with taking 5mcg of T3 upon waking, at midday and also just before I turn the lights out and go to bed. However, I've suffered from terrible insomnia for days and feeling too hot. It's difficult to get to sleep and then I wake up at 4am or 6am. I'm at the point now where I am unable to function during the day. My monthly cycle has been 23 days twice in a row now and this month is especially heavy.

My latest results from 23/2/17 are as follows. These were taken after my first failed attempt to dose with T3 but a good week after stopping T3.

TSH 0.48 ( 0.27-4.20 ) mU/L

Free T4 17 ( 12.0-22.0 ) pmol/L

Free T3 3.4 ( 3.1- 6.8 ) pmol/L

DHEA: 1.8 ( 1.8-7.7 ) umol/L

My TSH has come down in the last few weeks. I think Free T4 is also good. Free T3 was 2.7 when last tested in November 2016. I'm currently on 75mcg of T4. I've been taking 200mcg of Selenium daily and a variety of other vitamins/minerals including D3, Zinc, Magnesium etc. I honestly don't know what else to try. Is even 5mcg too much? Does anybody know how much Free T3 rises based on a certain dose? Thanks.

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  • Considering your meagre t3 bloods 5mcg is hardly anything but if this is a new side effect that coincides w t3 then maybe something is going on. Were you very symptomatic on t4 only?

  • Well I was very tired, had slow brain, couldn't lose weight, high cholesterol, skin sensitive to the sun, heavy periods, vertigo etc.

    I was better on 100mcg of Levo (this was a year ago) but I don't think going back to 100mcg is a good idea now looking at my Free T4 levels. I think taking the vitamins and minerals has helped as my Free T4 was never that high even on 100mcg. I think stress has been a major issue for me in the past. I can't deal with stress easily. I'm not stressed now though. Perhaps adrenals are what I need to address. I'm not sure trying another brand of T3 will help.

  • Serendipitious Your lack of sleep is a form of stress. I think doing the Genova adrenal stress test would be a good idea.

    Your FT4 is only 50% through the range. There is plenty of leeway to increase your Levo.

    What's your ferritin level?

  • Hello SeasideSusie

    Yes I just realised myself that my Free T4 isn't that high. It's also far easier to increase Levo. Hopefully that will bump up my Free T3 as well?

    I did an Adrenal Stress Profile back in December so yes I could do another.

    Ferritin was 150 in January.

    My endo wants me to try DHEA if things don't work out with T3.

  • Serendipitious If conversion is good enough then your FT3 should rise as well as FT4 with extra Levo.

    Ferritin is excellent, so if all other nutrients are optimal then conditions are right for thyroid hormone to work properly.

    I can't comment on DHEA, mine was under range but my practioner suggested supplements that would address low sex hormones plus low DHEA/top of range cortisol and they didn't include supplementing with DHEA.

  • Yes that is true I should convert better and I do wonder if its not nutrients then it must be adrenal related.

    When you say you took some supplements do you mean the Nutri Advanced Adreset supplement or do you mean something else?

  • Adreset (there are others, it just depends on your needs), bioidentical progesterone cream, a multi (which I've now changed to give a better mix and leave out unwanted ingredients), probiotics. Lots of Vit C as this supports adrenals. Us Hypos need a good B Complex, a good multi mineral, co-enzyme q10 (I use the converted form ubiquinol).

    My sleep has always been dreadful, I was recommended 5htp but varying doses didn't help. Because my melatonin was very low, and it was tested as part of the sex hormone/adrenal tests, I changed from 5htp to Melatonin.

    It's a big jigsaw and it's finding all the right pieces and putting them together properly.

  • SeasideSusie would you say the following is a good B complex? I bought this a few weeks ago but I've not used it yet:

    uk.iherb.com/pr/thorne-rese...

    I once tried 1mg of Melatonin without any testing and I experienced even more insomnia. Did you Genova hormone test include melatonin as well?

  • Serendipitious Thorne is a good make. I started off with their Basic B. The only difference is in the amount of the ingredients.

    I've seen it said that we should take a B Complex with at least 50 of everything, sometimes 100 of everything. But I've also seen that B6 should not be more than 10mg long term because it can cause tingling of extremities.

    Always confusing and conflicting information so it's really hard to know what's best.

    My Genova hormone test was the Menopause Plus and it did include Melatonin. It was expensive but it was a very comprehensive hormone test and included the normal adrenal stress test as well.

  • I think I was confusing my GP's lab range with the endos lab range. The former is 7.5 - 21.1 but the endo's is 12 - 22. So yes I am only roughly half way through the range. Sorry being sleep deprived doesn't help. Thank you for pointing this out.

  • Sorry to butt in - interesting post stream for me :O) Is the Genova Adrenal Stress test the saliva one? and which company would you recommend?

  • Cuileann-6 Yes it's the saliva test. I've only had mine done with Genova. You have to go through ThyroidUK who provide the 'practioner' as Genova don't deal direct with the public.

    Details of tests available in the PDF linked to, and information about how to order tests and receive results:

    thyroiduk.org.uk/tuk/testin...

  • No, I wouldn't hang my hopes on another brand.

    So there are a number of things you could try. If you're seeing some improvement w other symptoms but now have insomnia for the first time (ie didn't have it on levo) I wonder if there is a tweak. Have you read about the circadian method (CT3M) as detailed in the book Recovering with T3? stopthethyroidmadness.com/t...

    Imo (I'm not a medical professional) 5 is such a tiny dose, I can't remember ever reading about anyone here feeling their problems were solved on 5. It is more of a trial dose. I don't doubt it could be tangentially related to your sleep issues but I don't think it's because of too much t3. It might be that your ratios are a little out now, it may be that you're just not built for t3/t4 combo, it could be fillers etc.

    If you felt better on 100 levo maybe you're now undermedicated. One of my big hypo symptoms was insomnia, or very light sleep w frequent waking periods. I thought I'd go mad.

    Also, if you just want to jettison this experiment for a while (until you've recovered from this period of disturbed sleep) could you go back on 100 levo for a month or two? Looking at your t3 bloods I'm not sure why you think it's not a good idea? Your t4 has plenty of wiggle room.

    Sorry, some crossover w SS as I was writing as she was posting. :-)

  • puncturedbicycle I have heard about the CT3M method but my cortisol is high so I don't think that will apply to me. I was actually sleeping alright without T3 so its a mystery that I had insomnia with T3. There again the PIL does list insomnia as a side effect and says the dose needs to be changed however it doesn't say whether to reduce or increase it. I think my adrenal glands must have something to do with this as I was waking up during the night to visit the loo more and I felt thirsty too.

    I am seriously considering upping my levothyroxine to 100mcg and then retesting. Thanks for the suggestion.

  • Yes, it is quite odd. I suspect insomnia is being called a side effect because it can be a sign of overmedication, but it seems utterly unlikely that you're overmedicated on this dose. I agree that adrenals might be an issue esp if you already know your cortisol is high.

    I think you're right to do a little backtracking (to levo) now. There is only so much sleeplessness a person can tolerate. You have all my sympathy. I wish you a good night's sleep! :-)

  • Yes it doesn't make sense. My blood results show I am low in T3.

    I recall reading one of your old posts where I believe you spoke about how 10mcg of T3 helped you feel a lot better. It was really encouraging. I hope once I sort out my adrenals or whatever it is I can try T3 again. I'm feeling very bloated too. Although I was better on 100mcg than 75mcg of Levo I still had high cholesterol and a whole host of other symptoms.

    Thank you for your encouraging words puncturedbicycle

  • I suffered with terrible insomnia. Had a female hormone test and found I was oestrogen dominant and had a low progesterone reading. Am currently taking bio-identical progesterone lozenges, prescribed by a holistic Dr, and my sleep has greatly improved. Even if I get up in the night I go back to sleep, before I would have been awake for ages. Have started to dream again I have not done that in ages. I am going to try the cream when I have finished the lozenges as they are very expensive.

  • rosw thank you for sharing your experience.

    I'd like to get my hormones tested too would you please mind telling me how you went about this? Was this through your holistic doctor? I'm tempted to supplement bioidentical hormones especially progesterone cream but I'd feel better if this was under guidance.

    Funny thing is my sleep was alright before I started T3. I did wake up every so often to visit the loo but I'd go back to sleep again. I've heard that shouldn't happen because again it could be due to elevated cortisol but it wasn't a massive issue.

  • Serendipitious,

    I've just read your post and I admit it's a it of mystery. I have few comments:

    - your last ferritin result was excellent but your first post on this forum, which you wrote only 4 months ago, indicated hat you had difficulties increasing your iron levels (your private doc offered you iron infusions). It makes me suspicious towards this excellent ferritin result... Ferritin can be elevated due to inflammation and infection. Hence, it is not a very reliable test. You would have a better idea what our iron level is if you did the serum iron and TIBC (total iron binding capacity) tests.

    According to Paul Robinson ("Recovering with T3") the optimal results in the above tests are:

    - serum iron: over 90 μg/dl, ideally close to 100-110 μg/dl

    - TIBC: at or above the lower quartile of the reference range.

    Once you have your serum iron and TIBC results you can calculate your Transferrin Saturation Index = serum iron divided by TIBC x 100% . Optimal Transferrin Saturation Index is 35 - 45%. Minimum saturation of 30% required to successfully treat with T3.

    You mention that you take D3. How much are you taking? Have you had your D3 level tested? If you are severely sufficient (I was) you may have difficulty tolerating T3 medication.

    You didn't mention B12 at all. We hypo-people need to have B12 level near the top of the reference range.

    It sounds like a good idea to stop T3 and give yourself some time to figure out what the problem is.

    All the best and take care

    Kitten

  • Kitten1978 thank you for replying to me.

    Yes I did have an iron infusion, 1000mg of Monofer, back in November 2016. I only have iron results prior to having the iron infusion through my private Endo.

    November 2016

    Serum iron 8 umol/L (6.6 - 26)

    Unsaturated Iron Bg.

    Capacity 62.4 (H) (

    20 - 62) umol/l

    Iron Binding Saturation % 11 (15 - 50)

    It was these results I believe prompted him to recommend the iron infusion.

    After I had the iron infusion I only had Ferritin tested through my GP and it was 150. Unfortunately, I didn't have this tested via my private endo and nor did I have the iron tests done via my Endo. I think he was happy to see that my Ferritin had risen.

    Am I able to have the tests you mentioned via another lab?

    Vitamin D3: I was taking 3000iu/day and I've now increased it to 5000iu/day. When tested in January 2017 it was 68 nmol/L (51 - 75). B12 was 2000 ng/L. Even without supplementing it was around 800. For some reason I have naturally high levels of B12.

    Thanks.

  • Hi Serendipitious,

    I’ve looked up the Unsaturated Iron Binding Capacity Test (UIBC) and, according to this webpage, it’s exactly same test as TIBC: labtestsonline.org/understa...

    Hence, you simply need to repeat the following two tests, which you had done in November 2016: Serum Iron and Unsaturated Iron Binding Capacity Test. If I were you I would go and ask your GP to do the above tests.

    It’s very important that you stop taking any iron supplements and vitamin C supplements at least 5 days prior to your iron being tested (some authors, Paul Robinson for example, advise to stop 7 days prior to the tests).

    As your B12 and D3 are fine, your iron level is the most likely culprit.

    How do you feel about eating liver??? After having the above tests done, of course… Eating liver once a week has been mentioned on this forum as a great way of increasing iron level…

    I hope you will figure it out. Many people find T4/T3 combination therapy very helpful but you need to be able to sleep ;)

    Take care

    Kitten1978

  • Hi Serendipitious.... it seems that you're getting brilliant advice (still learning myself, and finding your posts and answers really helpful) So sorry to hear you're having such a torrid time of it with your insomnia. May I ask you about the Thybon Henning? Do you buy that from Gold Pharma in Germany? sorry to intrude! Hope you've got the answers you need :O)

  • Hi Cuileann-6

    Glad you're also benefiting from the great knowledge here. The members here are also very nice too.

    I had a private prescription for Liothyronine and I bought it from a German pharmacy. I don't think it was Gold Pharma though.

  • Ok, thanks for that. Just trying to get the actual name of the product, so that's really helpful! ;o)

  • The one I bought is called Thybon Henning. Comes in a 20mcg tablet which you can easily cut with a pill cutter if you need to. One thing that Helvella, an administrator, pointed out is that it is Liothyronine Hydrochloride. Other brands produce Liothyronine Sodium. I'm not sure if that makes a difference to anything.

  • Thank ..... That's helpful ;o)

  • After going through a spate of deprived sleep my patterns have changed in the last few days. I live in a small bungalow and had a Decorator in for three days, consequently I had to move all the clutter etc from the kitchen, hall and bathroom into the living room. This meant I had to potter around much more than usual carrying stuff. I did find the whole process very tiring but through gritted teeth managed it and have also slowly put everything back. The upshot of it all has meant I have been going to bed earlier as extremely tired but miraculously have slept through the night except for one trip to the bathroom. It does make you wonder about the power of exercise when one can manage it or is forced into it. I thought I would mention this as it placed a different stance on my sleep situation instead of wondering if it was adrenals etc. I have to say after the first night of sleeping fairly well I woke up with the feeling of astonishment, nice though for a change.

  • I am no expert on the medication side. But have suffered for eight years with an underactive thyroid. I can highly recommend the thyroid secret - currently screening online. It talks about the importance of diet and toxins as part of the recovery.

    After 8 years and two weeks of research and watching the thyroid secret I have energy for the first time and I am sleeping. I cut out coffee, went gluten free and I am removing toxins from my house.

    Just worth a read and a natural response to your body. It is truly fascinating. You have to try it to beleive it.

  • I did sign up for the thyroid secret but haven't watched it. What would you say are the biggest factors in improving your health?

    I've been gluten free for months. I've also gone dairy free in the last two weeks as I was always bloated. I haven't really looked into reducing toxins yet but I know that detoxification is really important.

  • It is a heavy going documentary in my view. 90mins per day of viewing is hard to fit in and the downloads are only available for 24hours. I beleive it can be purchased. There is too much in it to write.

    Gluten free, dairy free, paelo diet, remove coffee, reduce alcohol, remove processed food from your diet, (tricky but worth it and cheaper once mastered), eat organic if possible and if budget allows, reduce toxins in cleaning products, reduce nasties in skincare (this is tricky) but worth reading up on, filter water, the importance of vitamin D.

    Really is worth trying to get a copy. It's worth the time investment.

    I have been 2 years GF, 2 months process free, 1 week coffee free, almost dairy free. Almost sugar free.

    A great nutritionalist on line called Dr Natasha Campbell McBride. ( You can view you tube links for free).

    I have to say it's now starting working for me after eight years of horrendous symptoms. But it takes some time to work out what's working and what isn't. I don't beleive there is a quick fix unfortunately but there is hope out there. It just involves some lifestyle changes. But really worth it to get your life back.

  • Have you tried sleeping pill zopiclone? Having discovered after years of insomnia, with

    aa Mount Etna thyroid going hyper every so often, I was treated for a sleep disorder which was brought on by stress. It has improved my level of sleep so if I go to bed by 11pm I can sleep

    through to 6am, Go to your doctor as insomnia is part of hyperactive thyroid disease undermining

    your health. Take care.

  • I had problems when first taking t3 also. I found taking a small dose of melatonin helps, this is natural in our bodies anyhow. T3 can deplete it sometimes. You can't buy it anymore from the UK though. You can buy it from outside and get it shipped in though for personal use. It used to be over the counter but is prescription only now here.

  • I tried 1mg of Melatonin a few months ago before I even tried T3 but it gave me even more insomnia. Maybe there is something else wrong and I need to investigate it.

  • Yes could be. I've had insomnia for years off and on. Melatonin helped me get off to sleep but then I did wake again later. I will think I've got it sorted then I am awake again for hours. It comes and goes in cycles. Hope you get it sorted.

  • I find that covering my eyes with something, sleep mask etc helps getting back to sleep

  • I've been using an eye patch and ear plugs for years. Good tip though.

  • I think high cortisol has a lot to do with it. I went to bed at 9.30 last night and although I still woke up to go to the loo or drink some water I did sleep better than the night before. I've also been doing some yoga online which really helps to relax you.

  • Possibly yes. For me it is also important to eat enough, and especially eat before bed, if I''m hungry I cant relax. Other very self-explanatory "tip" is to hit the hay when I detect yawning, more than usual. If I miss that "call", I start getting alert again. Bit of a night owl..

  • I think I read on Dr Myhill's website that we have a sleep cycle every 90 minutes. Also balancing blood sugar is really important for cortisol which again affects our sleep. Carbohydrates tend to lower cortisol.

  • makes perfect sense :)

  • I have gestational diabetes at the moment and do wonder if I've had insulin resistance/ blood glucose problems for a few years also as I was craving sugary snacks and carbs before pregnancy for a good year or so, so this makes sense.

  • Congratulations and I hope everything goes well for you.

  • I was on thybon also (now prothyrid), definitely was a little rocky at first, but after a couple weeks it did the trick. I don't think it's easy for a body to just get adjusted to an instant dose of t3 (thybon is very fast acting) and you have to maintain a schedule with it and allow your body to become used to it. Eventually I needed to raise my dose to 10mcg and felt even better, infact LESS sweaty, palpitations gone, insomnia gone, and I even found I can sleep after taking t3 if I'm tired enough (although it does wake me on a normal day). My Endo says 5mcg is a tiny dose and not usually enough to make any difference, so for me I just wasn't used to having T3, it was so low in my body for so long that having it all of a sudden was a small shock.

    This is my experience, I can't speak to yours, but it was a "weird" start for me with racing heart and getting sweaty and what not, but that subsided after a couple weeks.

    Ps if you take selenium please make sure to regularly have your levels tested by a doctor as selenium toxicity causes many problems similar to hypothyroidism and with our western diet which is rich in selenium it's quite easy to reach this toxic level, happened to me after only 2 months at 200mcg a day, now I'm off it and doing better (it's not for everyone).

    All the best!

    Dan

  • I tried to tolerate T3 for as long as I could but I couldn't stand the insomnia anymore. I took it for 9 days. In fact after recovering slightly once I've been unable to sleep properly for the last two nights because my feet were too hot. This has been a frequent issue for me. I'm not sure I'm brave enough to try T3 again.

    I'm concentrating on improving T4 to T3 conversion naturally through food. I know liver detoxification is also really important so I want to focus on that too. I was taking Selenium upon the recommendation of my endo but I am concerned about the long term effects after what you've said. I had my heavy metals and minerals tested via the Genova Elemental Analysis test back in October 2016 and at that point Selenium was half way through the range. Maybe I need to retest.

    My cortisol levels aren't right which is probably why I have terrible sleep problems and it seems T3 has made them worse. Do you or did you have cortisol issues dang ?

    I've since upped my Levothyroxine too 100mcg. It's been 5 days but I can't say I feel any better just yet. I was on this dose for almost 3 years until my GP reduced it back to 75mcg in April 2016 because my TSH reducing! I've been a lot worse since then and its taken me this long to realise that there may be a connection. I'm going to see how it goes and also retest TSH, Free T4 and Free T3 in 6 weeks time. Thanks.

  • I'm not sure I have/has cortisol issues, I did have really bad insomnia on T4 alone for the first 2 months, and this coincided with a lot of pain around the area of my adrenal glands. After a couple months it went away and by the time I had cortisol checked doc said results were normal, but I suspect that during my insomnia phase my adrenals were shot and my cortisol must have been affected, and I'm 100% certain this was from the sudden 50mcg dose of Levo they started me on, when most likely I've been hypo for at least 15 years prior and my body wasn't prepared for such a drastic change.

    Most likely your insomnia is related to your adrenals and cortisol production, I really feel for you insomnia is no fun experience.

    Have you ever had your FT4 high in the range or over? That's what was happening to me from Levo alone and it caused me issues, my FT3 was always low.

    It's good that you got your selenium tested and plan to test again. I'm not sure if I'm just a weird case but mine was halfway in the range, then after 2 months of selenium became almost DOUBLE the range! Both Endo and Naturopath urged me to stop, Endo said I could lower to 100mcg if I wanted to but I decided to get off it. Weird thing is I don't eat nuts or bready things that contain selenium (I'm gluten free and avoid all grains and nuts), I should have had a low selenium count to start, I was technically the "perfect" candidate for selenium treatment, but not theory and practice are different things... weird how bodies work.

  • It sounds like you don't tolerate T4 at all and maybe that's why even a relatively low dose caused you so many problems. If your T4 was over range then maybe it was pooling in your body and not converting to T3. My T4 has never been over range. At the most it's probably been at the upper third of the range. At the moment I believe its halfway through the range but T3 is low in range. So I do convert to T3 but just not as well as I should.

    Here's an interesting quote I recently read from the book Stop The Thyroid Madness 2 by Janie Bowthorpe:

    "Chronic stress is bad for thyroid function. If you are prescribed thyroid medication and it makes you feel terrible, it is because you are stressed and your HPA axis can't handle it. You have to decrease stress and calm down the HPA axis before you add thyroid hormone."

    I'm thinking of trying Phosphatidylserine to bring my cortisol levels down. I think I first need to give the increase in Levo a few weeks, perhaps retest my cortisol levels and then take it from there. Sleep was better last night despite waking 3 times. I just need to make it a priority to everything else.

  • That's possible about the T4 pooling, I've got a blood test coming up and I'm interested to see if it's gone down since I've introduced and raised T3.

    I think the point you make about stress is spot on. It's something I often ignore and I am generally under a lot of stress. I'm glad you had better sleep last night. Both my Endo and Naturopath are always telling me to destress, I haven't done any of the breathing exercises my Naturopath gave me. The quote you forwarded really struck a chord with me I'm going to take it more seriously.

    I'm glad you had a better sleep last night. I know nothing about Phosphatidylserine, what is it? My mother has chronic insomnia maybe it's something I could recommend for her.

  • If you've never looked at the Stop The Thyroid Madness website I would highly recommend it. Here's a link about Adrenal Glands which leads onto all sorts of other related issues: stopthethyroidmadness.com/a...

    You could get your salivary cortisol levels tested through an Adrenal Stress Profile test if you suspect you are affected by stress. Genova Diagnostics do one:

    gdx.net/uk/product/adrenal-...

    When I last tested in December 2016 my cortisol was high throughout the day. It should be highish in the morning and slowly decrease by the end of the day so that your body can then create melatonin to help you sleep. High cortisol interferes with this.

    There are different courses of action depending on whether you have high cortisol or low - there are different stages of Adrenal Fatigue. This is all explained on the website. Phosphatidylserine is a way to lower cortisol. I wouldn't advise that you or you mother take anything without proper testing and professional help. Perhaps your Naturopath can help with this or a Functional Medicine specialist.

  • I've looked at the site but it's been a while and I still have a lot to learn. Thanks for sharing those links I'll take a look at them and do some research. I've had my cortisol levels tested, but I didn't do a salivary test it was a blood test each time. I'll definitely recommend to my mother to get her levels tested because I don't think she's done it.

  • A saliva test is far more accurate than serum. Here's another good resource by Dr Myhill who is also an advisor to Thyroid UK:

    drmyhill.co.uk/wiki/Adrenal...–_underactive

    All the best!

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