I am currently taking 125mcg T4, and 18.75mcg T3 split into two daily doses (overall, 2/3 of a 25mcg tablet of T3).
I’ve been taking T3 for around 5 years now. In terms of feeling better, it’s been a *huge* success.
However, I’ve also been having episodes of unconsciousness over the past 5 years or so. This could be completely coincidental - my body doesn’t function too well, and at times it does behave unexpectedly and inexplicably - or there could be a possible link.
Each time an episode happens I’ve been sober and calm, as this has happened maybe 10 times over the past 5 years or so; so I know I’ll eventually pull through OK. I’m not panicking, especially as often my children are with me and I don’t want to worry them. My husband has always been nearby and able to follow the ambulance to A&E.
The two episodes last month began in the usual way: I was breathing normally, yet felt unable to breathe enough oxygen. My feet and hands went tingly then numb - I couldn't feel them at all. Sometimes I can feel it coming because I feel very nauseous and my stomach feels weird.
I feel hot and cold, often develop a tic or a repetitive muscle spasm, and begin to have intermittent moments of awareness as I float in and out of consciousness.
When the ambulance arrives, my obs - heart, blood oxygen levels, blood pressure levels, glucose and temperature - show as near-normal (occasional mild tachycardia) or completely normal. This, even though at one minute I might recognise they’re sticking heart monitors over me and the next minute I’m not even aware of anyone around me as I’m completely out of it.
The paramedics (often the same guys!) can see I’m seriously unwell so strap me into a stretcher and into the ambulance. I don’t usually remember getting to the hospital. I’m then admitted to the A&E ward for a couple of hours for observation (as always, everything reads as normal) until I’m fully conscious once again and have recovered enough to be discharged to go home.
The April episodes were the first time I thought I’d lose control of my bowels (I didn’t). It was also the first time I’d had two episodes in two days, which has never happened before. I also lost consciousness for longer and remembered less. My recovery time since then has also been unusually slow. I have no sense of time.
The episodes last month each lasted approximately 3 hours from end-to-end (from feeling extremely unwell, through tipping into intermittent unconsciousness, back to being awake and alert but still drowsy)
As my obs are usually fine, the A&E docs think it must be neurological, but the neurologists I see later can’t work out what might have happened. My MRIs look OK, as do my CT scans and heart ECGs, but I haven’t yet had an EEG to look at the electrical activity of my brain. They don’t think it’s anything to do with Multiple Sclerosis as I don’t have any lesions.
Since the medics I’ve met so far have been sympathetic but unhelpful, Dr Google suggests an episode might be some kind of seizure; unidentified epilepsy; repeated small strokes; dementia (my brain works worse after each time, though my MRI shows I don’t have dementia); heart attack of some sort; Mast Cell Activation (as I have a host of environmental allergies and have a poor immune system, prone to catching every bug going); who knows what else.
Then I thought - maybe i need to think more laterally about this; I haven’t looked at the thyroid, for example. And then today, after years of intermittent googling about the episodes I spotted the ‘thyroid storm’ and realised it sounded familiar.
With each episode, my health has reduced overall, and I've been unable to return to the baseline I had beforehand.
Essentially, I am getting slowly and steadily worse. I used to be vaguely aware when I went under, but now I’m out cold. I can't see a pattern between these times or work out the triggers or commonalities. Again, I’m not anxious or panicking, I’m either semi-conscious waiting for it to pass, or out cold.
Thankfully, it’s not remotely painful, but I’m starting to get a bit more scared about the whole thing as I can’t afford for my health to keep worsening like this. The episodes have also become both more intense and more frequent since my various bouts of COVID, which are also leaving me weaker overall.
On the “Scoring system for thyroid crisis by Burch and Wartofsky” test (featured in the article above), I score 40 to 45, so Impending Storm (bordering on Highly Suggestive rather than Unlikely)
As far as my hypothyroid symptoms go, T3 has proved nothing short of miraculous so I really don’t want to stop taking it. But I also don’t want to become progressively more unwell.
Thoughts?
Thank you,
Abi.
PS: My most recent NHS bloods were a while back, and I have a new NHS bloods form at home to fulfil. However, I’ve not been well enough to go the hospital to draw blood.
June 2022:
Free T4 12.9 (9-19 pmol/L)
TSH: < 0.03 (0.35 – 4.94 mu/L)
March 2022:
Free T4: 13.4 (9-19 pmol/L)
TSH: < 0.03 (0.35 – 4.94 mu/L)
Ferritin 72 (15 - 200)
^ I know I need a full panel of T3, FT3 tests etc, but the GP didn’t organise that for me and I’ve been too cash-strapped to go to Medichecks or similar. So for now, FT4 and TSH are all I have to go on in terms of direct thyroid tests. Apologies!
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Hi, just picked up this post. This is very much like my symptoms when I first took ill in Kenya 28th Oct 2019, I didn't actually pass out but suddenly became very weak. One day I was planning on swimming a mile in the swimming pool before returning to the UK on Nov 5th, the next day I felt ill, couldn't put a finger on anything, called the doctor (they visit you at home there, which is just as well because I hadn't the energy to go to a clinic) I thought I had malaria, the blood test came back negative for malaria but she was very concerned with three of my blood results which were below the lower level ref range and gave me liquid iron. I also developed a rash across my shoulders which i thought might be shingles, but she said not. This rash travelled down my body, back shoulders, arms, chest, waist, hips legs then finally faded away in July 2020. My BP, temp etc. were within normal range. Three days later I couldn't get out of bed, and thought I had had a stroke. Dr came back, by this time I was shaking uncontrollably, she gave me diazepam because she thought I was stressed but I didn't take them because they have muscle relaxant in them and I have a problem with muscle relaxants. My mind was buzzing, couldn't remember conversations, had to ask repeatedly what was the time, then it was pointed out to me that I had my watch on back to front! I was still in bed. By this time my daughter and her family had left, also my two friends who had visited had also left , so I was by myself except for the house staff. Masha was brilliant, he kept me going with tropical fruit juices, and his wife cooked me Kenya food, beans, local greens and chapatis. I had to cancel two solicitors appointments and a Court Case for Probate, my husband died 2018 suddenly. I always use the assistance when flying otherwise I don't know how I would have got back to the UK. My daughter met me at Manchester Airport and I stayed with her for a month. I went to her GP, she said she thought I had a thyroid problem and was diagnosed borderline underactive. I knew nothing about thyroid at this stage. At no point did any GP pick up on iron deficiency, so when I finished the iron I started in Kenya I didn't take any more. It was only after joining this forum I found out that I was iron deficient. Covid kicked off when I got back, the GP at home asked if I thought I had caught Covid? She diagnosed me as post viral fatigue, and it wasn't until May 2020 that I began Levothyroxine. I was sent to a consultant who did tests to see what virus |I might have caught in Kenya, all negative, I had a Covid antibody test done as soon as they became available, negative, but by then it was nine months since I got ill. I am still struggling to get back to some sort of normal life. I need to get to Kenya this year, I have unfinished business there. All of this has caused me stress which I attribute to my state of health now, but wonder how long I have had an undiagnosed thyroid issue which has only just manifested itself.
I hope you find the solution to your blackouts. That must be really frightening.
You may have misunderstood what 'thyroid storm' refers to .
If a patient is ALREADY suffering from uncontrolled hyperthyroidism (extremely high T4/T3 levels, that have not yet been brought down by antithyroid drugs) ,
..... and then that patient gets another serious problem on top of that , eg major trauma/ accident/ surgery / heart attack /infection ..... THEN they can go into thyroid storm .. thyroid storm is a life threatening condition which usually involves being admitted to the Intensive Care Unit.
you can't have thyroid storm unless you have uncontrolled hyperthyroidism (thyroid MAKING too much T4/T3 .
..... you don't, have that problem , you are TAKING thyroid hormones and your T4 is well within range .
if you were overmedicated , then lowering your thyroid hormone dose would stop the problem .. whereas for patients with hyperthyroidism this is not an option ~ their high T4/T3 levels have to be lowered by other means .. and if they are not , and then some other assault to their body occurs .. then they may go into thyroid storm .
Thank you tattybogle Scarecrow for your lengthy reply 😃
I absolutely get what you’re saying, and since it feels like it comes on fairly quickly I’m wondering if thyroid function can swing up and down/ go hypo to hyper and back again?
After all, the medics don’t look at my thyroid when I’m going through the episodes of unconsciousness, so as I said I wondered if thinking laterally would be helpful. After all, it’s not like the thyroid is monitored properly by the NHS anyway!
There were many overlapping symptoms between a thyroid storm and whatever it is I’ve been experiencing, so it’s reassuring to know I can discount it.
I’ll continue with the hunt to discover the actual cause of my unconscious episodes so that it can be treated properly. I’m just thankful I don’t need to stop the T3!
No one can say if you need to lower dose ( or stop) T3, without seeing blood tests.
Your post a year ago said you did not have any fT3 results at the time becaue GP hadn't organised any . you were taking 2x25mcg T3 ? (plus 125 mcg levo) .
Presumably since you are self medicating T3 you have organised full thyroid testing for yourself since then ( doesn't have to be expensive if you are in uk, MMH is under £30 for TSH /FT4 / fT3 )
Do you know what your fT3 level is 8-12 hrs after taking your current dose of T3 ?
Unfortunately, I don’t. And I’ve just had a look at my latest blood form (which I’ve been unable to do for a couple of weeks as I’m not well enough to head to the hospital) and out of the thyroid tests my GP’s only requested TSH. Argh!
If I had £30 I would’ve done a home test sooner as I’m well overdue, but I’m waiting for financial solvency. Ha!
Combination of thyroid issues plus some sort of blood sugar problem? I have had a couple of similar experiences. I think, looking back my thyroid may have been utterly exhausted (or an Hashi event?) and did not have control over blood sugar levels possibly. I talked very slowly, could not stand up even with help. Thought I was having a stroke. Many episodes of overwhelming fatigue and lying down with eyes shut, not asleep but unable to move, not unconscious but unable to respond. In A&E they have a pretty strict protocol but as you say it does not always cover thyroid and even A&E can’t overcome the labs refusing to do T4 and T3 although asked for by doctors (nuts). I have found that all thyroid issues can be pretty profound for the patient whilst very little to be observed by medical means.
The stroke suspicion sounds familiar. Sorry you’ve had a tough time getting to the bottom of your health too, arTistapple It’s a long old haul, isn’t it? And a frustrating one.
It’s like for me; they say they think it’s neurological yet have never requested the neurologist on call to come and have a look at me. I’ve primed my husband so that next time he’ll demand I’m seen as soon as I’m admitted!
The paramedics always do a finger-prick test in case it’s glucose related, so presumably if they don’t ever mention it, it’s normal?
Bah. Simply advocating for ourselves is exhausting.
Wishing you wellness rather than a repeat of your previous experiences 😃
One time this happened they sent a paramedic out on a bike. He was with me in about 7 minutes whilst I was still pretty much out of it. He was concerned (I could see that in his face) but took all the usuals and could find nothing wrong, other than I was clearly out of it and clammy. He had no doubt something was going on but he did not know what. As I was clearly ‘coming round’ he sat with me for another 15 mins while I recovered. Weak but better. He phoned my GP and made an emergency appointment for me in a couple of hours where I was checked for having had a stroke etc. Nothing found and by that time I felt much better. Yes the finger prick test. BUT honestly I think hypothyroidism is a bit wraithlike and as someone famous said “it’s a great impersonator”. I agree wholeheartedly with that statement.
I agree to self advocating is exhausting. Wish you well too.
Dysautonomia. This description is good. Often associated with ME/CFS and fibromyalgia. I have pooh poohed these ‘diagnoses’ because it’s another area doctors (in my opinion) like to use to write us off. That appears to be changing. However I keep coming across great similarities with my symptoms. This dysautonomia I get rarely, but I recognise it. As I said before my sense is that hypothyroidism is a great impersonator. Presumably that is why it contributes to (what seems to me) great difficulty in diagnosis - never mind treatment. I think I may have experienced many symptoms over a very long period of no diagnosis. My body has just gone on and on shouting for help that was never forthcoming!
I’m then admitted to the A&E ward for a couple of hours for observation (as always, everything reads as normal) until I’m fully conscious once again
If your obs are completely normal then obviously the appropriate tests haven't been done yet. Healthy people don't become unconscious, so there must be something wrong. The difficulty comes when doctors do some standard tests, find they are all normal, and then start blaming the patient's mental health.
...
I'm not a doctor and have no medical training, so the rest of this reply may be of limited use.
In your shoes I would start by looking up lists of the deficiency symptoms of all the vitamins and minerals that humans need, including all the electrolytes, and seeing if any of the symptom lists ring any bells for you. You could also look up toxicity symptoms.
If your obs are completely normal then obviously the appropriate tests haven't been done yet. Healthy people don't become unconscious, so there must be something wrong. The difficulty comes when doctors do some standard tests,
That’s why A&E is pointless for me; I just come up against the same wall each time. Unfortunately, not one medic over the years has had any better suggestions. Makes me even more thankful to have this forum!
You mentioned epilepsy as an option. Over lockdown I read a fascinating book called “A Smell of Burning The story of Epilepsy” by Colin Grant. He’s a doctor whose younger brother is epileptic so you get a lot of useful info. Try your local library, I used the online library.
I also see that there are several communities here on Healthunlocked which are to do with epilepsy, such as Epilepsy Action and the Epilepsy Society. It might be worth posting your story on one of those to see if others have ideas about your symptoms and give you other ideas to follow up.
Good plan, Anthea55 ! I originally wondered if it was epilepsy, but then the doctors were so dismissive I shelved that idea. However, since they’ve been unforthcoming with any other theory, I may as well look deeper into it myself. As usual! Which is why it’s so invaluable to have your input. Thank you 😊
I had the phantom wood and cigarette smoke smell all the way through the first couple of years of lockdown. We caught COVID early - in March 2020 - so it was a while before they learned it was a COVID symptom. With two teenagers stuck in the house eating at all hours, the burnt toast smell used to send me especially crazy - I used to wake up thinking they’d accidentally set the house on fire!
If your doctors dismissing epilepsy or anything similar are about as switched on as many of the thyroid doctors we hear about, then we have to do our own research.
Phantom smells have been mentioned on here before. It's called phantosmia. This link looks useful and Helvella has collected many previous posts about it.
Communities - I think you can find other communities by putting 'epilepsy' into the Search HealthUnlocked box. This then gives you the option to choose 'Posts' or 'Communities', which you can then join.
have you reduced your usual daily T3 dose .. or is it a typo ? ,
this post says your dose is 18.75mcg ?
but on all previous posts you were taking either 37.5mcg or 50mcg day (as 2 x 18.75mcg, or 2 x 25mcg )
most of your fT3 tests are around 4 ish . but there was one with fT3 over range at 7 ish healthunlocked.com/thyroidu... , did you find the explanation for that over range T3 test ? eg. how many hours are you normally leaving to get the results that are 4 ish , and how many hours did you leave for the one that was over 7 ?
I think you need to prioritise keeping an accurate check on your fT3 levels , rather than leaving it up to the Doctors to test it.
Find out what fT3 is 4 hrs after your dose (so you know the highest it gets) , and find out what it is 8-12 hours after the dose (so you know the mid point) . then you know where you are.
You got up to a high dose of T3 very quickly without testing , and you have developed some serious problems in the 5yrs since you started taking it , which seem to be worsening as time goes on .. and it is possible that some of those problems could have been due to too much T3... eg. on 75mcg T3 + 75mcg levo healthunlocked.com/thyroidu...
If your fT3 testing regime is not accurate, then the concerns you have expressed about your T3 use in several of your previous posts, may be valid.
Ah, thanks for pointing that out; Yes, I did reduce the T3 by 1/4 tablet as I was worrying about being able to get my hands on more T3, so was trying to make what I already had go further by dropping down a dose.
Interestingly, I felt no better or worse reducing the T3 by 1/4 tablet/ 6.25mcg T3.
In any case, for 9 months to a year now, I’ve been on 18.75mcg T3 (3/4 Tiromel brand 25mcg tablet), with the 125mcg T4.
I’d assume 18.75mcg T3 and 125mcg T4 wasn’t excessive given my previous (albeit limited) blood results you mention above, which were when taking a 1/4 tablet T3 extra than currently.
I’m wondering if previously I mistakenly thought the T3 was a 50mcg tablet rather than 25mcg, as most of the other meds I take come in 50mg pills.
Either way, yes it needs better monitoring but I really am constrained by finances in terms of securing private tests. Hence, trying to make the best of a bad job!
Total daily T3 is 18.75mcg: 12.5mcg am/ 6. 25mcg pm
I generally avoid taking my evening T3 the night before the test, which I book for first thing in the morning. So my most recent dose is the morning the day before, 24 hours previously
Ah ok , you need to be really clear about the timings (and doses) in replies ..... people have often asked if the timing used for your fT3 tests is 8 -12 hrs , and you've replied 'yes i follow your protocol' .. so admin / members have all been giving you opinions based on your fT3 being tested at 8-12 hr timings.
if you'd informed them you had used 24hr timings for T3 , the opinions offered would often have been different.
I understand the logic of leaving a 24 hr gap to get a low looking fT3 result if you are trying to keep GP / Endo on side who is prescribing T3 for you ,.... but you are buying your own , and there is nothing to be gained from giving inaccurate information about timings to people on here when asking them for advice .
Yup! Absolutely. I haven’t bought a private blood test in a long time as I haven’t had the funds, but that makes perfect sense. Thank you.
Funnily enough, I said ‘generally’, because I can’t actually remember - historically my cognitive function has been dubious for some time due to ME, ADHD and perimenopause, so I find copying text tricky, and I always read everything multiple times anyway to be sure. Which is exhausting! Then since having COVID multiple times my memory’s declined to the point that I even gave my dad the same birthday present twice in one month. Oops!
So I would’ve looked through here and triple-checked before any test. Maybe I just began this T3 journey 5 years ago by stopping T3 24hrs beforehand a couple of times, and I haven’t done it since? I don’t know, but I do know to look twice!
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