Hi,
Does anyone experience problems when waking up in the morning with not being able to keep their eyes open? I really struggle some days, unable to keep my eyes open and stay a awake even though my bloods are within the normal range.
unable to wake up: Hi, Does anyone experience... - Thyroid UK
unable to wake up
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jfup
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Yes I have that, it happens when my thyroid levels are low, but also when my iron levels are low. Have you had your iron checked recently?
Yes everything is within normal range. I feel I need to have my levels at the top end of normal in order to function The problem appears to be if my t4 slips down & my TSH gos up but both within the normal range then I start to struggle to wake up even if I have slept 8-9 hours, its driving me nuts
As far as I can gather the 'normal' range seems to have been set fairly randomly a while ago and isn't very useful for helping us fine tune our meds.
I mentioned iron because it works with the thyroid and helps improve my symptoms without the thyroid dose being changed.
I see from your reply below that you don't have hashis, but something a bit more unusual. If you post your last blood test results, including any vitamins tested and the ranges, someone more knowledgeable than me will be able to comment and make some suggestions.
bloods taken a month ago TSH 1.01 mu/l. T4 23.6 pmol. Vit D 59ng/l cholesterol 4.9 mol Triglycerides elevated at 3.8 Iron 23umol/l Ferritin elevated at 382 folate 11.8 ug/l. I was taking 100mcg daily of thyroxine. Now taking 100mcg alternate days 75mcg of thyroxine.
Triglycerides are a measure of the amount of fat you have in your blood stream. Doctors often mention saturated fats or other fats as a cause of high triglycerides and suggest a low fat diet or eliminating saturated fats. This is not true.
It turns out that the biggest cause of raised triglycerides is the amount of sugar and carbs people eat. (Although alcohol may be involved too - but I'm not sure.) Reduce the sugar and the triglycerides should reduce.
You might find this picture of interest :
Cholesterol beliefs of doctors - history
thanks for the reply, I don't drink any alcohol, tea total although I do drink far to much tea. don't take sugar or eat biscuits, like the odd bit of chocolate and the odd cake once a week. Carbs could be the problem though on reflection, currently trying to reduce them, some times it seems I have cut out everything to manage my thyroid problem though. I was born with a pancreatic defect that has caused liver function/blood problems hence why I don't drink alcohol so that may be a possible cause or contribute I don't know but medics have said they not worried about liver blood results!
I was born with a pancreatic defect that has caused liver function/blood problems
That must be very annoying. I have found that any of my medical problems that are related to things doctors are interested in (like cholesterol) are often overlooked because doctors will often not read a patient's medical history, and I have to defend myself over and over again.
It is, I went under active due to levothyroxine being reduce during lock down, it took that long to speak to my GP I had gained a stone in weight, bloods showed my TSH was 7.5 t4 10. Doc said "are you taking your medication" I was fuming as I had not wanted her to reduce my medication in the first place. None the less my answer was polite but I have been struggling to lose the weight since
I know got the t- shirt, try saying you don't drink alcohol and immediately the look of "really" ! Then followed by are you an alcoholic? NO. Grrrr
That makes it sound like they disapprove of people for not drinking alcohol and immediately assume addiction. Doctors really don't have a good opinion of patients at all.
No I don't think they disapprove, they just assume patients lie about their alcohol intake, probably with good reason, which I do understand it just gets a bit tedious having the same conversation every time I see a doctor who has not met me before. So I now start with the birth defect and then get to reason I'm there, so when they ask about alcohol intake they jump to the right conclusion,
Just testing TSH and Ft4 is inadequate
ESSENTIAL to test TSH, Ft4 and Ft3 together
all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in U.K.
looking at vitamin D result……
U.K. units are usually nmol ……not ng/mL
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Yes I.m in the uk. Bit D 59 mol/l sorry keyboard error. levothyroxine are just a generic brand 100mcg from mercury-pharms. 75mcg from Teva uk ltd
Teva brand levothyroxine upsets many, many people
Suggest you test TSH, Ft4 and Ft3 levels now
Test early Monday or Tuesday morning and last dose levothyroxine 24 hours before test (make sure last dose is 75mcg ….not 100mcg)
cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
See what results show
Are you currently prescribed 75mcg tablets
Teva is only brand that makes 75mcg tablets
If want to consider getting all Mercury Pharma brand levothyroxine
GP will need to write new prescription for 25mcg and 50mcg tablets (which are cheaper for NHS than 75mcg tablets anyway)
25mcg are 90p per 28 tablets
50mcg are 85p per 28 tablets
75mcg are £2.58 per 28 tablets
Thankyou for the private blood testing info
could you tell me how to get a private nhs test. Is this at my gp office or through a lab?
Monitor My Health Website
looking at previous posts
You have Hashimoto’s
Really need to retest vitamin levels once year
could use this new test
monitormyhealth.org.uk/full...
I live in the US. does monitor my health take bloodwork from People in the US? I emailed them but have not had an answer. Thank you
No ….it’s U.K. only
monitor My Health is private testing service run by part of U.K. National Health Service.
sorry about late reply just learning how the site works
Hi and Welcome ! Do you have Hashimotos ? Just read your Bio - hence my ?
Hi, No I was over active and recieved iodine treatment but it was over done so now thyroid no longer functions so have acquired hypothyroidism
Have you had a recent ultrasound of your thyroid?Asking because even though I explained I had this due to levothyroxine, well I also had it before my thyroidectomy.
I had multinodular goitre and two of the modules wee constricting oxygen/my breathing. Which led to the inability to stay awake and alert at times.
Just wondering if you've had an ultrasound since your treatment to make sure there is no constriction. So you can cross that off. (I have no clue if it is even possible for nodules to form after your treatment, just thinking out loud.)
Hi,
Yes. And without changing any other factors it disappeared when I went from Levothyroxine (Synthroid) to NDT.
And yes this still happened with optimal labs on Synthroid. It took quite a bit to get optimal labs but it was still happening.
This doesn't mean I don't have fatigue, I do. But the narcolepsy-like episodes have ended.
Just a few examples of what was going on - Nodding off sitting up when I didn't even realize I had even fallen asleep. It was like someone snapped their fingers and I was out. Never in my life had I ever fallen asleep sitting up.
Being in a non-boring conversation on text with someone and instantly falling asleep. The person would say afterwards "but you just wrote". It was so bizarre & would never allow this to happen, as I would find it rude
There was a major fire across the street from me. Four fire trucks. Alarms, yelling, lights.I woke up about four hours into it. That alone scared the crap out of me.
I tried to tell my doctors it was beyond fatigue, it was like someone was tranquilizing me. It was that intense and that instant.
I tried everything. Splitting doses. diet, trying to fight the pull. Nothing worked. But getting off levothyroxine did.
My TSH right now is 32. So severely undermedicated on NDT. I am somewhat fatigued but labs right now would be a reason to have an inability to stay awake & it is not happening
Hardly need any naps & I have not fallen asleep without my own knowledge that sleep was happening - not once.
NDT? what's that? I do fall a sleep on occasions while sat up, but not as bad as you I don't think. But I'm always tired, appear sluggish and my family say that I'm somtimes appear vacant. When asleep waking up is really really hard, I feel like I'm fighting to open my eyes and focus, print is blurred ect
Many people after RAI can’t manage on just levothyroxine
Levothyroxine is Ft4 (storage hormone) and needs to be converted into Ft3 (active hormone) before we can use it
For good conversion of Ft4 to Ft3 we need, good vitamin levels
Many Graves patients after RAI continue to have poor conversion rate, despite optimal vitamin levels. (Hashimoto’s Patients similarly often poor conversion)
When you had a normal, fully functioning thyroid….approx 80-90% of thyroid hormones made were T4……but crucially….the remainder were T3
Often we need T3 prescribed alongside levothyroxine, especially post menopause
How old are you?
Difficult, but not impossible to get T3 (liothyronine) prescribed on NHS
Can’t be initiated by GP
First 3-6 months trial has to be via NHS specialist endocrinologist and prescribed via hospital pharmacy. Assuming trial goes well endo writes to GP to take over care and cost of T3 prescribing
It became difficult to get prescribed because only one supplier exploited loop hole and increased price charged by 6000%
news.sky.com/story/regulato...
Now multiple suppliers licensed and price dropping. Currently £50 per 28 tablets…..down from £268
Rest of world …..cost is about 3 euro per 28 tablets
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 (or NDT) if clinically appropriate
tukadmin@thyroiduk.org
NDT is natural desiccated thyroid…..made from pig thyroid
More difficult and much more expensive….so virtually impossible to get on NHS. Most U.K. patients on NDT via private prescription or self source without prescription
NDT Was the only thyroid treatment for almost 100 years ….until levothyroxine was manufactured in 1940-60’s.
thank you for reply. I'm 68 years Thank you I will email to find out a specialist as I'm so tired of feeling like this
yes I'm prescribed 75mcg tablets
I did have 50mcg and 25mcg tablets before but GP changed them when I went under active. I think she thought I wasn't taking the medication correctly, not that she had reduced me down to 75mcg daily might be the cause , that has been disproved so I expect she will change it back at some point.
come back with new post once you get results
When adequately treated we usually will need BOTH Ft3 and Ft4 at least over 60-70% through range
Test thyroid levels early morning and last dose levothyroxine 24 hours before test
Teva brand upsets many people
Will do thank you
Weirdly, but happily, my GP suddenly, directly and without prompting, started prescribing 60mcg T3/ month. Not enough, no brand consistency and no understanding of need to split and graduate doses, but hey, I'll take it!!
yes definitely had a period like that when you awake but feel still asleep. Not sure what fixed it - getting t4 and t3 higher in range or taking Thorn Basic B vitamins.
it also happens if you have Sleep Apnoea. If you can’t keep awake during the day, you may need to speak to your GP to check if you maybe suffering from Sleep Apnoea
Thank you for your reply. Sleep apnoea I have been wondering about that will speak to GP
I'm wondering if there's a possibility that you have Sleep Apnea and therefore you aren't getting enough proper sleep.
I had this for ages even when adequately medicated until I tested my cortisol levels. My morning cortisol was low and my night time was high. I had a problem falling asleep but struggled to wake up. Think I could sleep till midday if allowed to. I started supporting my adrenals with adaptogenic herbs, vitamins and balancing my blood sugars throughout the day. I am much better now and get up at a normal time without feeling drugged. Hope you find a solution soon.
jfup
I was just about to say this could easily be an Adrenal - Thyroid issue they can often go hand in hand.
I’m having Synacthen test (Addison’s) and glucose tolerance test in new year (I have normal but high end blood sugar levels but getting hypoglycaemic episodes so just checking this area)… endocrinologist thinks my muscle tension isn’t thyroid after last endocrinologist agreed I was doing much better on Liothyronine (T3) (although my FT3 was still poor) and this one says it’s probably adrenal as I have so much tension probably due to low cortisol and I can’t wake up in morning but alert in evenings, circadian rhythm is out of whack …the biggest tension is dealing with these medics and their egos!
I was doing ok on T3 now shift about to try something else before going back on T3. It’s complete madness, my cortisol was high last time measured by only a basic blood cortisol test which isn’t best way of measuring I’ve read, heard a saliva test is better, but guess doesn’t hurt to test these areas, as in his words I’m autoimmuny 🤦🏻♀️ we could be looking at other autoimmune issues… that’s all I need is more, do you get a prize for having more 🤣
Yes!
hello-
There is a s a huge difference with all lab ranges between ‘normal’ and ‘optimal’. The ranges can vary a lot from lab to lab, and country to country! The reason I say this is to me your vitamin D looks low which could definitely account for the fatigue. Although the Oxford guidelines state normal vitamin d levels are between 50-250, an optimal level is around 100. For me If my levels go below 70 I feel dreadful. I’m my humble opinion id up your vit D
Yes! This was my first symptom in 2009 when my thyroid first became underactive, then in 2014 I went to sleep as usual and have never properly woken up since. I sleep through alarms, phone calls, people banging on the front door and on my worst days, my cleaner can let herself in and even hoover around my bed and I sleep through. I've been referred to the sleep clinic for tests. My partner has narcolepsy, but they're querying idiopathic hypersomnia for me - it's easy to put everything down to thyroid, but sometimes individual symptoms may indicate additional health conditions, so might be worth pursuing separately. Like all my (pretty severe) symptoms, it fluctuates, some days I'm fatigued, others I function ok, but some it's like trying to surface from a general anaesthetic.
I've always had this problem to some degree. I've been hyperthyroid with Graves, now slightly hypo after 9 months on 40mg carbimazole per day (plus 100mcg levo per day.) I'm told I'm slightly anaemic, maybe I've always been.
Who knows why I struggle to actually keep my eyes open and have to force myself to wake up.
The one time I was waking up after 8 hours sleep feeling refreshed and able to get out of bed readily, was when I was doing keto. Eating low carb, no sugar, no alcohol. I felt great.
So there's that.
Looking at your results your Vitamin D level is only just in range , it is still very low and your total iron is the same , at the low end at 23. I noticed also that you didn't have blood test results for Vitamin B12 and Magnesium.
If you haven't had these tests it is worth asking to get them now.
Vitamin B 12 Deficiency can cause worse thyroid symptoms as B 12 deficiency alters thyroid function as well as being a debilitating condition in itself.
It can also reduce your ability to metabolise and absorb other things like Iron and Vitamin D and your daily medications.
Vitamin B 12 Deficiency Anaemia is also a possibility.
Along with Fatigue it can cause additional pain , neurological symptoms including numbness , pins and needles , digestive problems , weak muscles , change in insulin sensitivity, palpitations , dizziness and brain functioning problems.
GPs seldom remember to do this test as standard yet it is a common health issue with very serious implications.
Magnesium can also effect neurology , muscle strength and fatigue levels.
I would get the tests done before you start supplements with B12 , a B complex or Magnesium as the supplement taken before can mask the real results.
If you take a combined supplement already stop it at least 48 hours before the test.
Dependent on your symptoms , and if you are low or deficient, and if you already took supplements you will be offered either a loading dose of B 12 injections then a three monthly dose or a trial of supplements.
If you are low on Magnesium , Vitamin D and don't take Vitamin K2 an additional oral spray can be taken after your fattiest meal of the day ( which is also when you should take your combined daily vitamin) BetterYou is a good product for this.
If you are getting what appear to be adequate figures for your thyroid tests but still have aggressive symptoms B 12 testing is a vital possibility to explore.
I also have problems waking up, and I’ve found it really interferes with your life, so I can sympathise with you. Sometimes it can take me an hour to get out of bed. It also includes going to bed too late because I got up too late in the morning. It makes it very difficult to keep a normal circadian rhythm, and I dread trying to get to appointments early in the day. Cortisol is supposed to wake you up in the morning. Have you done a salivary adrenal profile test? I did one by Genova Diagnostics. It offers an add-on of a cortisol awakening response, so you take 6 samples through the day. It might be interesting to see what your cortisol is doing. I also have low blood pressure, and I find that can make me sluggish first thing, so it might be worth monitoring your BP when you wake up.
Thank you for your reply. No I haven't taken a cortisol test, Blood pressure is ok so that's not the problem. Will consider the cortisol test , people have been veery good in responding to me with some very good suggestions and knowledge.
I’m glad your BP is ok. If you do opt for the Genova Diagnostics test, you can get a discount with the Thyroid UK discount code, and quote them as your practitioner. You have to order it by phone for the discount, rather than their website, and then get your results by emailing the Thyroud UK results request form. Hope you find something that works soon.
Thank you I have emailed thyroid uk for a list of thyroid specialist endocrinologist today. So will do that as well
Thought that was just me lol! Yes, it takes me an hour to come too, luckily I'm retired so just the dogs to worry about. I could sleep the clock round.
Yes, I've had the same problem but feeling hugely better now. As others suggest above, for me I thought it was adrenal insufficiency, a saliva test with morning awakening response confirmed this for me (I posted about it on here - still don't know what the huge morning spike was all about, maybe a stressy morning but it was atypical!).
Also progesterone issues with HRT were contributing, and I'm trying to address ferritin and folate issues with diet/supplements. Gut feel is that the adrenals were the biggy for me with this problem but my aim was to feel better not test scientifically so I guess it'll always be hard to know (also some measures take longer to kick in anyway I believe).
I'm now off the HRT, off gluten and dairy, taking supplements and have changed my diet: for me Alan Christiansen's Adrenal Reset Diet book seems to be helping a lot (beneficial side effect, I've lost some weight too!) and I feel so much better - even though I still don't get as much sleep as I'd like, the debilitating brain fog and inability to wake up in the morning are very much reduced (even though I'm still unable to get thyroid treatment but that's a different story).
Lots of Thyroid authors including Dr. Peatfield (Your Thyroid and how to keep it healthy) talk about the links between adrenal and thyroid issues. (For balance: lots of doctors say that adrenal disregulation or whatever term you care to use doesn't exist, but lots of doctors also say that a TSH of anything less than 10 is perfectly fine... what I'm learning is that "not having a disease" and "being healthy" are two different things).
I suppose the TL:DR is that it's hard to say and can be many different things but an adrenal saliva test seems likely to be worth a try if you can.
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