Has anyone experienced such bouts of fatigue where you fall asleep and you just have to fall asleep that given moment and you are gone for an hour?
This started happening to me in July last year, but got increasingly worse over time. I thought it was my iron, but I fixed that with iron IV and with my ferritin being three times higher now at 109 (3-204) for the past 3 months, I'm still drifting away.
I have noticed that when I added recently 5 mcg more t3 they weren't happening, but I suffered horrible peaks and throughs and crying panic in the evening.
This sounds to me it is all about meds and maybe t3 in Armour is not doing as much for me. Potentially need splitting meds or adding T3 - this goes like a merry go round in my head.
I am scheduled for a private MRI of pituitary in case I have some issues there. I suffer with dizziness that results in fainting and breathlessness and dehydration. I was involved in three car accidents, nothing very serious, meaning, I was not hospitalised.
My endo wants me to do MRI or CT of adrenal glands and chest stomach pelvis to rule out any tumours.
I have taken hydrocortisone and that didn't lift my fatigue, only t3 did a bit (t3 also increased my cortisol saliva by a lot). Historically my saliva was low, then it came back much higher after adding t3. My blood serum was slightly over range. Prolactin over range. Hence my endo is thinking that maybe in fact I do have high cortisol and I'm unable to increase meds because it goes way too high with them. So I need to keep them low and be hypo for now.
So after being already ruled out for so much including EBV, HIV, Lyme, anemia, menopause etc. I am trying to see what else is there to check.
I will soon start on testosterone cream, apparently it is supposed to lift the fatigue.
If anyone has any other ideas, please let me know.
Thank you 😊
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I had the napping/sleeping problem you describe. I couldn't control it at all. It hasn't gone away completely but it is less of a problem now than it used to be. Unfortunately I don't know which of the things I've done has improved matters, but it could have been improving nutrients, optimising my thyroid hormones including T3, or finding a way to reduce my high cortisol.
I suffer with dizziness that results in fainting and breathlessness and dehydration.
Fainting and breathlessness could be low nutrients, particularly low iron/ferritin, or possibly low B12/folate. I have never associated either of those with dehydration though.
Note that medically, the proper name for fainting is "syncope", and there are lots of possible causes.
Do you include salt in your diet? Too little salt can cause dehydration. An experiment you could try (no prescription required), is to buy a pack of some rehydration salts from a pharmacy. Superdrug has their own brand - I bought some recently. Boots and Tesco have both had their own brands in the past, I don't know if they still do. And then there is the "big" brand - Dioralyte.
For what they are, I think those rehydration salts are way over-priced, but it is possible to make your own. You would have to add your own form of flavouring to make them more palatable.
Try taking one sachet with water soon after you first wake up, and then if nothing dramatic happens, try a second one just before lunch. Rehydration salts provide people with potassium and sodium - two of the major electrolytes. There are links to more info on electrolyte imbalances in this link :
Thanks again hb! My nutrients are optimal now thankfully, t3 seems to be lacking as per my recent experiment, and the cortisol situation is not very clear at the moment...
Ferritin is great after iron IV still, folate always good and B12 a little over range (labs done this week).
Oh yes, thank you, I have been taking electrolytes since June last year everyday. And still my sodium remains low in range at 137 (136-145) potassium is always good. My primary thinks low sodium is hypo. She told me to put salt on everything too, which I have been doing.
Oh yes, I drink adrenal cocktails, but trying to have less because of sugar. My glucose is a little elevated due to incorrect thyroid meds dose I think.
Involuntary naps, as I call them, were the earliest thing I started tracking 8 years ago. They started out once every 6 weeks, then 4 weeks, then more frequently until it was a few times a week.
When I started improving my Ts, the frequency decreased. But I noticed in my symptom tracker that when they happened they happened around 2 pm.
So at that time I started splitting my morning Lio, taking the second dose at noon so the peak would catch at 2 pm. It actually worked, and although I still nap/shut down/turn off periodically- it’s not at 2 pm anymore!
8 years ago I started googling things about these naps - like, what disease makes you fall asleep. When I talked to my doctor when my 50 Levo didn’t make me feel better, even he brushed it off like I was making it up and was convinced I was depressed.
So helpful, thank you FallingInReverse 🤗 I was also told I had depression. Then it turned out it was my thyroid. I might have to do something with my dose. Maybe my issue is taking it all in one go.
Oh no way, 20 minute naps? That was me in the beginning, 20 minutes, then 40 and now 60.
Actually you are reminding me, in my early Levo days (my 9 months on 50 mcgs), the naps became less frequent but when they happened they lasted longer - I think similar to you like 40-60 min.
I also started “losing” entire days to the fatigue/naps. I’d never quite wake up, when I got up, I’d end up napping, and a series of several “trying-to-be-productive” interrupted by the “rest-eyesclosed-sleepforanhour-wake up and try again” cycle. The whole day would be completely unproductive.
Oh dear...yeah I'm definitely underdosed in some way..Would you feel quite groggy for a long time after napping? I had to stop working, because I can't function due to this.
I just ordered a cortisol test, as I feel groggy upon waking after a full night sleep, and to be honest it’s been a bad couple months and I’m beginning to forget what it feels like NOT to be groggy…
I have no choice but to work, and it is near-impossible these days.
Yes, good idea to test cortisol, did that myself recently.I relate, I've been poorly for 6.5 years and last year I started to feel like in was getting somewhere. And then crashing again.
I feel you. I'd love to go back to work, but with dizziness and fainting spells is impossible 😞
Symptom tracker - nothing fancy, it’s just what I call where I write down my symptoms. I have used many forms over the years, but they have all essentially been the same process: when I notice a symptom, I write the date and time and the symptom!
I do not go looking for symptoms to write down, it’s just when I am interrupted by one, when something makes me dysfunctional, when I notice a new sensation spontaneously. Then I am able to look back and connect dots that don’t make sense when they are happening.
So I’ve got a list of date/times for naps literally going back to like 2015. And over the years all the other multitude of others that were mysterious and scary and endless. And only in 2022 upon diagnosis I realized that every… single… symptom… was caused by a failing thyroid.
falling asleep involuntarily was my very first symptom when I first started with Hashimotos in my teens.
Last year I went through a phase of dizziness and this forum was brilliant. Some pernicious anaemia folks suggested that although my b12 was officially a bit over range (like yours ) it might not being absorbed. So I added in a good multi B and I’ve been so much better.
Also I know this might sound counterintuitive but doing yoga inversions like handstands and headstands challenged my vestibular system and have helped me enormously with the dizzy spaciness I was feeling. If you haven’t done those since you were a kid don’t worry you can just do things like bending forward take hold of your elbows and gently rocking from side to side. It’s nice for the lower back too but the main thing is to strengthen your balance system.
Lastly, at around the same time I had this going on my son developed autonomic dysfunction which basically means his heart rate wasn’t being properly controlled by his nervous system causing him dizziness and passing out. humanbean suggests trialing salt to help with dizziness which is exactly what the heart doctor recommended to my son. It helps you retain water when you’re dehydrated. The heart doctor said she was dealing with a lot more of this issue at the moment because of Covid. Have you had that recently or the vaccine. She said either can have the rare side effect of autonomic dysfunction.
Thank you so much, this is very helpful! May I ask which B complex are you taking? I take only B12 methylocobalamin by Solgar and B9 Quatrefolic by Swanson.I need to get back into yoga, I used to teach it, I'm fatigued so much some days it is so hard to do anything.
I did have Pfizer x 2 and Moderna x 1, but this problem has started before them, in 2017.
I drink electrolytes everyday and put good quality salt with all minerals into everything
I use the ingennus multi B. V small. Take 2 a day. Give a really good lift in energy so recommend taking them with food in the morning or lunchtime.
I think with your yoga practice try getting back into it when you have your most energy during the day and of course pranayama - breathing exercises- will help energise and regulate the nervous system. Yoga nidra before bed is very relaxing
Gradual improvement over 6-8 week period. I also did inversions eg headstands to challenge the vestibular (responsible for balance) and this seemed to really help. Inversions are also uplifting. One of my yoga teachers says a handstand a day keeps the psychiatric doctor away. 😊 🤸♀️
Thank you 🤗 when you were dizzy last year, did this also correlate with your thyroid dose, did you reduce it? Did you check your cortidol at the time by any chance?
The same thing is happening to me, it's not like I am sitting down and yawning all of a sudden I have gone and I am not aware of anything. I can be gone for a short time or a longer time I have no control over any of it. Regards Carole
Yes! That's it, exactly, thank you Carole! When I have a visitor and this happens I basically struggle a lot and have to tell them to go, not being a great host lately!
For years I was getting more and more tired. After a head injury 5 years ago it became worse and I sometimes needed 3 naps to get through the day. I have spent ages looking for answers as it's so frustrating that you feel your tiredness is eating away at your life. Anyway as well as discovering 18 months ago I was hypothyroid I also hit diagnosed with adhd. Afternoon tiredness is a big symptom for many people who have the condition. I now take stimulant medication most days and can go most days without napping.
I am not saying you have the condition but 1 in 20 do so someone reading this will be in the same boat as me. What I would say is that I was completely convinced it was my thyroid that was the issue but it's not in my experience that straightforward.
Thank you Stanley, this is very helpful, I will look into it! The issue is I have a lot of other hypo symptoms, from being overweight, retaining water to brittle hair. The dizziness, fatigue etc are bothering me the most 😞
I had it for an extended time after my thyroidectomy. It honestly felt like I assume narcolepsy must feel like. I would be in the middle of text conversations - and not remotely boring ones 🤩- drop the phone from my hand and fall right into sleep.
It was aggravating for those around me a la "How is that even possible you just were talking (texting) ten seconds ago?"
I do not have any insight. It has improved, and I do not know why. I do still have fatigue, but feeling like someone just drugged you is not the same as fatigue.
Thank you Litatamon🤗yes! My phone would slip out of my hands and I'm gone in the land of zzzz's....scary! And it is a drugged up feeling, like your head is spinning and you just have to sleep. Lol
Thanks Opposite🤗I'm sorry to hear that. Have you not had it before going on Carbi and Propranolol? Propranolol definitely decreases BP, also decreases peripheral conversion of hormones. My BP is normal when it happens so is my pulse. So weird.
Thank you. No, not before. I suffer with insomnia so when I'm not well it does tend to catch up with me and makes me a bit sleepy but nothing like this.
I've weaned myself down to 20mg over the past couple of days and I'm able to do a bit more. Still napping but seem to have more energy in between. I definitely think it's the Propranolol for me.
I pick up my prescription for a different beta blockers tomorrow so I'll let you know if it makes a big difference 🙂
Originally 100mg but I was in Thyrotoxicosis and apparently had dangerous levels of adrenaline.
I'm now down to 20mg, my T4 levels are almost in range, and I am starting to feel a little better. Still napping but able to do some stuff in between.
I am still experiencing hair loss. No bald patches yet but my hair line is receding and my ponytail is half the thickness it was. I started Dewty collagen drinks a few weeks ago on a friend's recommendation, as well as wrapping it in silk before bed, using castor oil, and only brushing with my fingers. Obviously you need to get to the cause but perhaps these things could help slow the loss a little for you too.
I’m aware poor blood sugar control can cause sleepiness and actually boredom and doing nothing but I’m aware myself with health issues it’s a vicious cycle.
Blood sugar can throw many things out, have you had an oral glucose tolerance test not just general HbA1c test.
My tolerance test was perfectly ok but my HbA1c can be high end towards pre diabetes. I’m sure I have read hypothyroid patients can have elevated blood sugar levels, wasn’t sure if Levothyroxine also didn’t help but have to read up on that to check… wasn’t sure it was down to under medicated just the condition or side effects of drugs 🤷🏻♀️
Stress can exacerbate poor blood sugar control and obviously eating wrong things for you…as what might raise blood sugar in one, might not in another… most culprits are starchy carbs in excess and professed foods and sugary foods.
If we exercise shortly after we eat it can use some of the sugars more efficiently.
Thanks CoeliacMum1🤗 yes, it seems like an awful vicious circle.I had glucose tolerance test and it was fine, but that was years ago. I wanted to do one now, but I'm not able to walk to the lab sadly because of how I'm feeling (weakness). My HbA1c was good, but morning glucose today was 101-105 (or 5.6-5.7 in the UK). My reaction to meals seems good. Recently I started craving more carbs, it must be because my energy is so low. I had my insulin tested some months ago when this started and it was low in range.
I think high blood cortisol doesn't help with sugar either
Hi I've had this, it was awful and I had to stop driving. Not sure if the same cause but, I use a CPAP machine (for sleep apnoea following complications after a total thyroidectomy) and my Dr wouldn't address this issue until I had been to the sleep clinic. I saw a lovely sleep specialist who advised that my machine was working perfectly and I was not sleep deprived. He thought I was experiencing an extreme reaction to carbs, brought about by digestive issues in not being on enough medication (levothyroxine). Although eventually after a long fight I've had my Levo increased to an amount I'm living happily on, that day when I got home, I immediately lowered the amount of carbs I was eating (which wasn't a huge amount) and saw a massive change. I'm still doing that - eating only very limited carbs - especially complex carbs - and no longer have that problem. I've also lost weight!
That's amazing CernCrystal, thank you🤗So the increase in Levo and decrease in carbs helped, that just confirms what I'm suspecting, I'm on a dose that is too small for me.
How is your sleep (at night)? Have you had a 4 point saliva test (not blood) to get a more accurate display/tracking of exactly what your adrenals are doing? How is your gut any bowel issues?
Hey dealsgap 😊 my sleep is very good, one thing that works well, I fall asleep fine and sleep through the night . Yes, I had two salivary tests in a space of 6 months, in September my morning and early PM sample were low, also my blood cortisol was just above midrange, right now after adding more T3 they all went up a lot.I have untreated SIBO and I really need to start Xifaxan for it. I wonder if SIBO can be contributing to it so much?
I had it too, I was on T3/T4 medication but the T3 was just 5 μg a day in the morning. I up it to 8 μg in the morning and 8 μg in the evening and I feel great, no more sleepiness in the day. Armour is a very difficult drug, it would be better to take T3/T4, your response will be much more predictable and you can adjust better the dose. Interestingly your fainting symptoms and dehydration seems like Addisons not high cortisol...if you add cortisone to your scheme your thyroid medication must be upped
Thanks Fusk1🤗yes, Armour is difficult, but on t3/t4 I felt worse unfortunately, stayed on them 2 years. I never split the dose and I wonder if this is the issue?I also thought Addisons, but that's ruled out by my high blood cortisol, and my salivary cortisol goes up as I add t3. I tried hydrocortisone, but sadly it didn't do muchand my ft3 was just stuck at 99% of range.
Definitely try to split it, you'll feel a lot better without ups and downs. One dose a day never worked for me, I was like a zombie in the afternoon....
Yes , I know exactly what you are talking about. I believe it is" post prandial hypotension." You can google it. Systolic blood pressure drops after eating. It is a response to food, and I think because we have hypothyroidism, it creates insulin resistance. I managed to test my blood pressure with a blood pressure monitor on one occasion just before I basically passed out, and the reading was way below range. It happens with me after eating and I know I'm going to fall asleep whether I like it or not as my breathing changes, and I cannot breathe at any other rate no matter how hard I try. I can be asleep for up to an hour and a half at a time, and a lot of the time I am aware of the television playing in the background, but I am sleeping nevertheless. I suspect that my cortisol has most probably gone far too high, as I have read that if your cortisol is too high , the body makes you nap to lower it.
edit: I believe I too have a problem either with my pituitary and/ or hypothalamus.
Thank you Wua🤗it definitely can happen to me after food, but if happens without food also, and my BP is always normal. So weird. Oh this is interesting, I do have high blood cortisol.
When you keep googling the subject, it says , I think, that food can trigger it up to 2 hours from having eaten. Adequate vitamin b12 levels are also needed to try to avoid it happening.
I 'm not clear about your question asking if I've been to the MRI?
Yeah my B12 is over range, I've been supplementing for years.Yes, you mentioned that you suspect you have a pituitary hypothalamus issue, I've been curious if you had an MRI performed on your pituitary
I had an MRI brain scan a few years ago , ordered by a neurologist who also said I needed nerve conduction studies. I had waited about a year and a half for the neurologist appointment. The nerve conduction studies were then refused.. At the neurologist appointment ,( thyroid was being ignored at this time), I warned him that I hadn't an ankle reflex on the left going back as far as 2001 at least. He tapped my right wrist with a small hammer and said, "you have pins and needles now?" I had no change of sensation. I think i should have felt pins and needles, and didn't. He had come up (NHS) from Norwich to Scotland on a Saturday , during the tail -end of Covid restrictions, as part of the lowering of waiting lists. Part of my problems at this time included a couple of episodes of paralysis . I was experiencing cubital tunnel syndrome, and carpal tunnel syndrome, losing feeling in the soles of my feet (b12 needs to be over range to stop this) and I had experienced a few episodes where my arms didn't move on command (no nerve stimulation reaching the muscle). The neurologist appointment was not to do with thyroid. The old fashioned way to help diagnose hypothyroidism includes "loss of deep tendon reflexes". Most especially, the ankle reflex. It totally must not have occurred to him that thyroid could be involved. If anything deviated from his speciality, he ignored it. There was an incidental finding found on the brain MRI suggestive of a 2cm thyroid nodule. He said he was writing to my G.P. with the results and "leaving it in their capable hands" as to whether this would be followed up or not. I wrote to him ,via his employment agency, in Sutton Coldfield, to pass on to him in Norwich, ( took weeks, they said they had it and didn't etc., etc.,etc) because of something else which would take too long to explain, asking that he emphasised to whoever read my brain scan , to go over it with a fine tooth comb, and why. I had accredited genetic lab results to back up this request. I asked him to include my genetic results in my NHS file. Turns out he didn't. Because he didn't there was nothing recorded in my NHS notes that I have an enzyme deficiency for mannose. Mannitol, as found in Teva levo tablets , is an alcohol derivative of mannose. When I eventually got a hypothyroid diagnosis, I was then given Northstar levo 25mcg tablets, a re-brand by Lloyds of Teva levo tablets. I only discovered , quite by accident, that they contained this. The reason for this wouldn't affect anyone else on the forum. I'm trying to keep this short.
After waiting 8-9 months for an NHS thyroid scan, I paid for a private one as I was aware there was something new and untoward with my neck as i was now gulping in bed. The private scan showed a second nodule. I eventually got an NHS thyroid ultrasound, about a year and a half after the MRI. I now had 3 nodules. No autoimmune damage. Nodules are considered by the NHS to be normal and common in the general population.
I insisted on a thyroid test from my G.P. when a tooth root exploded and I had to lose a tooth and a crown I was having absolutely no problem with. (spotted on dental x ray) I told the G.P. that an underactive thyroid can cause dental problems and my thyroid needed to be checked, and that dental surgery that I had had c.2002-2003 to remove a blocked salivary gland, on the advice of my dentist, was a thyroid problem manifesting way back , even then. G.P. said they didn't know anything about teeth, and unaware that hypothyroidism can cause dental problems. I asked if I could have a parathyroid problem, as the root had exploded , was in small fragments, and crumbled when it was being removed by a specialist that I had to pay privately. My dentist has never seen or heard of anything like it, and was totally mystified and stunned. Dentists don't know anything about thyroids, G.P. s don't know anything about teeth. Dental problems can be caused by thyroid.
When thyroid tested, TSH 4.02 (0.27-4.2), FT4 5.5 (12-22), FT3 6.5 (3.1-6.8). So, hypothyroidism. Put on 25mcg levo, and left at 25mcg as many of us are. I insisted this was Central Hypo and indicative of a pituitary tumour. My G.P. emailed NHS ENDO and I have written on my calendar, that they suggested to her ,that it was transient Central Hypo or non thyroidal illness. Since transient, I don't think they were happy I had been given levo, or they had suggested a trial of 25mcg levo, They suggested I come off it. Two years previously, my FT4 was under range at 10.6 and 10 with no FT3 done. FT4 was supposed to be checked to monitor, but during Covid, and lab only did usual TSH, when it was the FT4 which was supposed to be done. Couldn't get them to do it, and was shouted at by G.P. that nothing wrong with my thyroid, and not to ask again for it to be checked. I argued it wasn't transient .After taking 25mcg levo for nearly 10 weeks, FT4 was 8.4 (12-22). The blood lab then, unknown to me, flagged up possible rare hypopituitarism or non thyroidal illness, if not on thyroxine. I was on thyroxine for this blood test. Not followed up.
So, I had a brain MRI , before the pituitary was an issue. Had there been something amiss at the pituitary it should have showed up. They would not , however, be looking for a pituitary problem. It was not done with contrast. The MRI showed white matter vascular changes which they were writing off to age. Also degenerative disc disease to my neck, and possible 2cm thyroid nodule.
I have had one Endo appointment and was told I don't have Central Hypo as they want FT4 to be 1 or 2 , when the range is 12-22!
Re. your blood pressure being normal. Over range methylcobalamin B12 gives me practically perfect blood pressure. Before this my top reading could reach 211, in a hospital setting. At the neurologist appointment when they did my blood pressure I was ecstatically happy and amazed that my blood pressure was perfect at c.121 over 79. So, for me, high, over-range B12 levels, I realised normalise my blood pressure. I was supplementing very heavily at that appointment, as G.P. had shouted at me again, saying there was nothing wrong with my B12, when I argued there was. As a result she said she was worried about my mental health! I stopped supplementing on her advice, reluctantly. I had B12 checked again and it had halved from over 1000 to 500s in a short space of time . She argued it was just my body getting rid of the excess it didn't need. I argued that in my case it would drop to being a deficiency again. I regret allowing it to drop as low as 500s, as I was back to having no feeling in the soles of my feet again. It took a long time to get it back up over-range again and get my feet back to normal. The G.P doesn't understand that I have a B12 problem which is most likely genetic due to a CBS mutation. Despite your blood pressure being normal, if someone could check it for you when you've crashed out, your readings will likely be well below range.
I'm mainly on paleo, healthy complex carbs, 80% dark chocolate, nuts. I have seen her website indeed, thank you! This has all started getting bad with me lowering doses since 2022.
Chocolate would be a processed food, also sugar/carbs.
I know this isn't usually advisable with hypo, but intermittent fasting can help. I think theres just a group of people who have odd mitochondria and it helps their cells work better. Not recommending this for weight loss though!
I lowered it, because I started getting horrible symptoms, looked like an overdose, my ft3 ft4 were high at 75 and 78%. I wonder if I need to split my dose, because I seem to be getting nowhere. With these results I still had hypo symptoms including high cholesterol.
Splitting a T3 dose is always a good idea. Can try twice or 3 times a day.
Did you up your omega 3 dose or change brand?
Low omega 3 (good fats) can be responsible for raised cholesterol. My nutritionist said to be very careful about what Omega 3 you buy as so many not good quality and won't help much.
I was only taking 2.5-5 mcg t3, couldn't really split it and with Armour is tricky 😞 it's much longer acting so when I was splitting I used to feel strange. But have to reconsider it.I upped my omega 3, but the raised cholesterol has been always here along water retention, brittle hair, being 9 kilos overweight and horrible fatigue 😞
You could try a different brand of Omega 3. There's a lot of variety within whats on offer to buy. I know you're not in the UK but Bare Biology offer the best on the market at the moment. I'm also having 'bulletproof' coffee made with a tablespoon of flax oil as a back up. It can take a very long time to work.
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