I am 45 years old, and found myself off to A&E this morning with what was the 10th night in a row of adrenaline surges that prevented me from getting to sleep (feels like something startles me then there's the flood and whoosh of the adrenaline) slight breathlessness, a peculiar feeling at the site of my thyroid, hoarse or odd voice, dizziness and brain fog and a general feeling of absolute doom and panic. My whole body has felt like it's vibrating. Arrived at hospital and BP was said to be normal but slightly elevated. ECG normal. General bloods normal with no unusual enyzmes etc. Thyroid mentioned and the result should be at my GP tomorrow. So it's underactive, or this is perimenopausal in nature. I have come home after many hours with our wonderful NHS (meant with no sarcasm, unlike some of the horrid people in the waiting room being absolutely vile to the staff) and I so want to rest. But every time I go to doze off there's that adrenaline rush of anxiety and panic again. Has anyone got any advice for me? I feel I did the right thing today because damn I feel wretched - and I know there's lots that can be done but unfortunately in the interim I appear to be stuck like this. I have cried my eyes up and just want to sleep even for an hour.
Hi, new here and feeling completely overwhelmed. - Thyroid UK
Hi, new here and feeling completely overwhelmed.
Hello Rachel. Horrible for you to experience this. I don't know how you found this forum, but however it was, this is probably the most helpful place to find.
Feeling as you do right now is not permanent. Help will come, and you will find yourself feeling calmer and more able to cope. Promise.
My thyroid medication has not been optimal and I've experienced anxiety, and last year, panic attacks out of the blue....no reason for either, other than as I've discovered, incorrect medication.
When anxiety hits ( or when the panic attacks struck ) I found that taking an extra B Vitamin helps/helped. As B vitamins are not stored but expressed if the body does not need them, I find them extremely helpful. Please note, I'm not a medic, and this is my personal experience.
I also find eating bananas effective, and as I'm not lactose intolerant, a warm milky drink.
There are foods that have a calming effect, and a Google Search may help you find what may well be helpful to you whilst you are waiting to be diagnosed/treated.
Bless you. Count yourself well and gently hugged. x
I am not sure if it is the same as what you are experiencing, but I have had the most crippling severe anxiety since I have had alot of dose changes (up, down and none at all) with my thyroxine medication.
I can honestly say I have struggled so much, cried everyday and nighttime has also been when my anxiety has peaked. I am trying to follow the advice on this group regarding supplements and getting to the correct level for my thyroid. I just wanted to let you know that if you are having anything similar then you are not alone x
My anxiety is through the roof. I have had a good sob in the last hour and that actually felt great - I needed that release especially after hours and hours of being at hospital feeling confused, woozy and all round peculiar. I'm so sorry you are feeling that way - it really is quite something, this.
It is absolutely understandable to have a good cry after hours in the hospital. I am still in shock at how anxiety seems to have taken over every single aspect of my life, I find everything so difficult now, even going to sleep and waking up is fraught with anxiety. I just really hope things will get better, because others on the forum have said they experienced the same and they improved with the right dosage and correct supplements, so we definitely have hope for the future, things will get better. I think joining this group is a really good thing because we can get advice, know that we are not alone and you can always reach out to talk x
Hi, welcome along to the rollercoaster ride 🤗 I shall throw in the HRT aspect, as when my levels dropped it certainly speed up the decline of my thyroid... take a look at this site... as you may well benefit from a little addition 😉
Ah yes, that's Louise Newson's site isn't it. One of my colleagues paid to see her about her menopause following hysterectomy. I can't afford to do that but a website is nearly as good 😂
Loads of really good, free info... she is passionate about empowering women since she struggled to get what she needed.... Girl Power 🤗
just popping in to this. I agree with Eeyore100 . This could be menopause related. Low estrogen causes these adrenaline surges ( vibrations/buzzing/ ectopic beats) as do thyroid problems. All the hormones are on a big feedback/forward loop. One being out of whack can cause all the others to cause trouble. Menopause Matters is a good site to get info. I truly believe that hitting the menopause triggered my hypothyroidism 2 years later.
Welcome to the forum
GP/hospital may only do TSH test
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once for autoimmune thyroid disease
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Medichecks Thyroid plus antibodies and vitamins
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
Link about Hashimoto’s
Symptoms of hypothyroidism
I use to get the very same adrenal rushes you have explained. I was already diagnosed with thyroid condition Hashimotos (under active/autoimmune disease). I was already on levothyroxine medication for it too. Mine use to happen late mornings. I’d be in work and couldn’t control it or out walking my dogs and feel extremely hungry suddenly and faint feelings too. I use to think it was lack of food or sugar/ glucose maybe. I’d end up in A&E like yourself but never with an answer to what was causing it. It just kept getting worse over years. To cut a long story short I eventually found out what the issue was by going private. The issue I had was that I have a faulty gene called DIO2. If positive this means I couldn’t convert the levothyroxine medication T4 to the most important hormone T3 very well, I was only converting 8%. And my body was over reacting trying to convert it. T3 gives us all the energy we require to use our bodies as we should. As soon as we introduced T3 liothyronine along with levothyroxine T4 everything changed almost immediately for the better. My trial was hugely successful. Prior NHS Drs would say my blood results where normal. Normal to them means in range. But the NHS ranges are too wide for most people. Mine was at the top end 5.00 for years. Your TSH needs to be around 1.00 as that’s a healthy persons result normally. However, the NHS TSH range goes up to 5.50. My private endocrinologist explained anything above 2.5 is out of range and you’ll get symptoms. So if your TSH level is above 2.5 then I’d consider seeing a private endocrinologist as you’ll get nowhere with the NHS until your TSH gets to 10! Mine ended up at 36! I was by then in a very bad way. You can follow the NHS route for treatment but it’ll take ages to resolve. I wish I’d gone private a lot sooner. If I’d known I would have.
This is so helpful thank you!!! I will keep that figure in mind today - I do not want to get worse. Good god. It's like nothing you can explain to anyone who hasn't experienced it, isn't it. Hellish. I get the extreme hunger, my insides will feel absolutely hollow and grumble like mad until I eat and that has tended to help. Last night I had zero appetite and forced myself but I feel that was probably more exhaustion from no sleep prior and a whole day in the hospital feeling horrendous and scared. Thanks again. Very glad to hear you found your answers!
When your thyroid levels are functioning properly your thyroid hormones ensure you have energy. I think the hunger feeling is related to very low hormones T4 or T3 or even both. Or even too high if you have hyper rather than hypo issues. I use to get confused I believe now. It wasn’t hunger it was low energy which meant low hormones. In my case low T3. How it works is T4 converts to T3 when your body requires it. So if your T4 is low your T3 will be low also. But in some cases the T4 can be high and T3 remains low, this is normally down to poor conversion T4 to T3. GP’s generally don’t do blood tests for T3 some don’t even do T4 and only do TSH. All 3 need doing TSH, T4 and T3 to work out where the problem is. Maybe you could be put on T4 levothyroxine first if your T4 is low. Then see if you convert ok to T3 after 6 weeks on levothyroxine. That’s the starting place. Get those test results you got done in A&E and post them on here to get feedback. You can either ask the Drs receptionist to print them off for you or if you have Patients Access you can view them yourself under tests. T4 should always be high in the range. T3 at least midway and TSH about 1,00. When I’d get back from A&E id be shattered as what felt like adrenal rushes use to exhaust me. I had a number of adrenal tests to rule that out = 9am cortisol blood tests and short synacthen tests to rule out Addison’s disease. I was fine, it was thyroid issues. I wish I’d gone private sooner and I wouldn’t have had to go through hell for years. I hope you get sorted soon. This site is brilliant as many people have suffered and can offer advise and help as most GP’s do not understand thyroid conditions in any depth as my GP admitted to me after I went private and was finally diagnosed. I’ve not had a ‘rush’ since.
I had the same problem. Tests eventually showed that it was falling sugar levels. Using glucose tablets will stop it within minutes but it's not the best solution because sugar levels will crash again. I found relief in Adoptogens - I still use Ashwaghanda - but be careful as too much of any Adoptogen can also cause surges in adrenaline. I hope you will be able to sort it, I well remember the huge distress and frequent migraines it caused.
I feel for you. But always remember, you are not alone.
Thousands of us are like this.my thyroid went crazy sometimes, yet seemed normal by the time they checked! Eventually they caught my thyroid disease.eventually you will get the help you need. Persist, and get the help you need..lx
Gosh, you poor thing, that's a horrible experience 🙁
I have Graves' Disease (so overactive thyroid) and just before I was diagnosed I had these whooshy adrenaline surges too. When my thyroid is okay (was overmedicated and went into hypo 🙄 and am now getting back to normal) I don't have them.
I can't add anything to the excellent advice you've been given, I just wanted to offer my empathy.
Hello and welcome RachaelG1977, I am so sorry you have been going through this, it is grim. I am replying very late and didn't have time to scan all 45 responses so far, and knowing the brilliance of this forum I think what I'm going to suggest will probably have been mentioned.
I have experienced a similar situation when I was first diagnosed and struggling with levothyroxine tolerance meaning I took and didn't take it. I am 45 in March so a similar age and have also pondered perimenopause.
So some of the things that helped me and I derived from here (and a couple of books which were a bit too American for me but solid and useful, Stop the Thyroid Madness) are taking magnesium (I have half a pack of organic cashew nuts a couple of hours before bed but there is very good advice on supplementation if that is what you prefer on here, just put magnesium into the search 🔍 tool), breathing (I know it sounds minor but the old 4 in the nose, hold for 4, breathe out through your mouth for 4), selenium (again I take 3 Brazil nuts in the morning, Waitrose duchy organic, same as above if you prefer supplementation), routines (knowing I have water or juice by the bed). I have also read here that orange juice with salt in can help with palpitations. Loads of foods set me off, I have hashimotos so I have no gluten, soy and very, very little dairy. It's a massive pain but has made such a significant difference it's worth it.
Lastly, I wanted to say you will get through this, it will pass and you'll have knowledge and experience to help you through it if it ever returns or other rubbish thyroid, menopause or even something else happens you have built so much resilience (I know, it sounds weak as and wasn't something I wanted to listen to a couple of years ago when it was happening but it is true)
I really hope you have managed to get some rest and the NHS actually helps you x
Sorry to read your post, it is indeed scary to get weird unexplained symptoms.
Just a thought, has anyone mentioned doing a test to see how your adrenal glands are working and Cortisol levels? Someone on here my have already mentioned this in a separate post!
I have written on here before about having episodes of a fast heart rate and I do have Hypothyroidism, likely because as I am under medicated, but I have also ended up in A&E where I get a rush of everything seeming to quicken up while just relaxing, fast heart and physically shaking. I have had two ECGs, seen a Cardiologist privately for an Echocardiogram and my heart looks good. I am now waiting to have a test to check my cortisol levels and adrenal glands as well as a more detailed test of my Thyroid to find the cause of what is going on.
See how your Thyroid results come back first but just thought is worth mentioning.
I cant find what your results were?... whats happening now?
Welcome to the group.
I'm sorry you're really unwell and struggling with symptoms. Did you by any chance get the blood result numbers? Would be useful for us to see them. Maybe can get them from GP tomorrow. It's difficult for anyone here to say the cause of your symptoms without the blood results, although what you have described I did experience many years ago before I got diagnosed with hypothyroidism.
Hey thank you for the reply. No he just said bloods look normal but because he didn't ask for the add on of thyroid function until after my bloods had been taken (they did those first once I was moved from triage, then I waited awhile and finally saw Doc to say how I had been feeling) the result was taking longer to come through. It does run in my family - an aunt and several great aunt's had underactive thyroid or other thyroid issues. This morning before hospital I honestly feared I was dying.
So when they mentioned your thyroid results, did they indicate anything was wrong or just that they took the test?
The reason this group is so busy is that NHS testing is pretty inadequate. They often only test TSH, sometimes FT4 but almost never FT3 which is actually very important. Most people here pay for private blood tests from Monitor my Health or Medichecks to see whats really going on. Thyroid UK offer discount codes on their website.
If you get bloods re done or privately book the test for 9am or as close to as possible as TSH is highest at that time. You can get antibodies tested to see if you have an autoimmune thyroid condition too.
Vitamins are also important - ferritin, folate, B12 & D3. See if GP will test them, if not again use a prvate lab. Despite fantastic diet some people especially if Hypo get absorption issues.
He asked me questions including how did my neck feel which I thought was odd until I stopped and was like "well now you mention it..." He didn't give me the thyroid function result and said go home as opposed to waiting longer - but said he is fairly certain that I will discover tomorrow when I call GP for that result that it's what he suspects, underactive. Yeah having looked on here I will definitely get a private test if this mystery doesn't begin to get solved. Is it normal to feel so unwell at this point? I realise that's a silly question, I'm exhausted and very foggy and not even sure how much sense I am making!
I'm impressed that A&E thought of your thyroid, good stuff. When you speak to your GP tomorrow ask for the numbers of the results. It might be better for you to go there and get a print off of them even. What happens will really depnd on if your TSH is within range, if it's very slightly above the range or a lot over the range. It may be that you have to wait another 3-4 months to retest to get a diagnosis and treatment. Come back here when you have the numbers, we need the ranges - numbers in brackets after the actual number, as they vary from lab to lab. Mean time hang in there.
I will. I'm going to request to come in and get the print out and have a chat - because something is going on and I want to know what it is. I cannot imagine feeling this way for a prolonged time. I said to my sister earlier that I would rather go through all 3 of my labours in one! And I meant it. It's bloody awful. Thank you again, so much.
By the way. If it really is your thyroid you don't need impressive numbers to be having some pretty nasty symptoms. Doctors don't always acknowledge that but its a fact. So if it turns out it is your thyroid then what you are experiencing is to normal and to be expected.
Yeah it's a real devil this, if that's what it is. Imagine living all this time and it's just sat quietly doing its thing no problems, and now it's causing a whole heap of chaos. I have to laugh. And cry. Ha.
Oh bless you this sounds scary. You did the right thing.
The family links sounds familiar, many of the symptoms you mention sound familiar. Those test numbers will be interesting.
However... you need to reserve some of your energy to be tough when you speak to the GP. Because the GP may well say ... everything is normal.
The TSH reference range for normal is often 0.2 to 4.8 but depending on the lab this can be a different range of numbers - take note of the range and your result. (You may have to ask reception for a print out).
A GP reading a result larger than 0.2 and smaller than 4.8 will say 'its normal'. But.... normal healthy people without thyroid problems have results around 1 to 1.5. So if your result is over 2 you are probably going to feel rough.
Here is some context, At TSH 4.2, 4.8 and 5.5 (same range as above) I was sofa bound, having 2 periods a month, on CBT for anxiety and depression, hurt all over (hurt to just be) struggling with night terrors, and I absolutely know the adrenaline as falling asleep thing, its horrendous. Prior to this my GP put me on HRT which initially felt a bit better but eventually stopped working. Different GP heard the 'HRT not working' and figured thyroid - thank goodness! No longer on HRT, 20 months on and with advice here dose increases, sorting vitamin levels, diet etc. I'm way better than I was. I'm not showing off, just hopefully sharing my own experience so you can see how others fared in similar circumstances.
Following advice here I've tested privately (£26) regularly to see other thyroid hormone levels T4 and T3, which a GP will pretty much ignore, but these levels actually tell you more than TSH. What folks do is post their results here and get lots of input and advice to help them along with optimising their treatment.
Wishing you well 🌱🦋🌱
Thank you so much. I really do feel like I'm going crazy. Mild versions of these symptoms have come and gone for awhile, usually around my period or ovulation but suddenly after my last period ended something shifted dramatically and then I suddenly felt I was in an ever growing nightmare! I will absolutely take on board any advice anyone here has for me - it's reassuring to hear people's experiences, especially with the adrenaline rushes because that is so very frustrating.
Hi. I’m sorry you’re going through this and hope you feel better soon! I just hopped on here because I have adrenaline rushes when I sleep too and no doctor has ever figured out what it was. Thank you for posting as I didn’t even consider it being my thyroid especially since my endocrinologist said it has nothing to do with it. Wish doctors had these illnesses so they would be more understanding.
Hi! The doc I saw at A&E definitely said it comes with hormones, whether that be thyroid related or peri or both is yet to be discovered but hopefully today I get a little bit down that road at the GP. This is the problem with female health - some doctors seem to have absolutely no clue. I just go to what I see as the wise tribe of women, whether that's my friends or strangers on a forum I cried again last night and held my phone to my partner and said look, these women don't even know me and they are being so so kind and trying to help me.
I hope it helps and great to have a support group no matter where. I’m sending good thoughts your way. And appreciate the information. I thought it was the vaccine that might have caused it. I’ve been googling for a while with no answers.
I know a few friends who have experienced it with peri - and with no reason why it just seems to happen. I have experienced it mildly, upon waking or falling asleep in the past when anxious or when period is impending. This however, oh boy - shocked me how strong and frequently it can happen now. Horrible feeling. I have them in the day lately but not to the same extent as when I lie down and try to sleep.
Hi, first vaccine sent my system into a tailspin and is what prompted a visit to the Menopause Clinic... they'd had a huge surge in desperate women affected as our immune system runs on estrogen
Whoa. I had no idea. I am double vaxxed - but haven't had any boosters. Blimey.
I've been fine with the others since, thanks to sorting out my hormone levels but that first one just suddenly aged me 30 years...I was ready for the nursing home!
Hi. Can I just check something please? When you say 'normal healthy people have TSH of 1 - 1.5?' Do you mean someone with no thyroid issues at all, eg no antibodies or diagnosis/treatment? My understanding is that once diagnosed and on levo the level should be about 1 - 1.5 rather than everyone should be 1-1.5? Genuine question, as otherwise why is the' normal range' for someone with no thyroid issues at all so wide? You wouldn't get treatment from a Dr if your TSH was 'in range' and you weren't on levo (I was borderline for years with no meds) but my dr was willing to adjust dose once diagnosed, when I was symptomatic but at the upper end of range. I thought the optimum level/sweet spot advice was for those on medication? Is that not right? I'm just trying to check my understanding, still learning! Thanks
Euthyroid 'normal folk' generally bobble along around 2, well treated sufferers generally bobble better below 1 to give a bit of cushion when demand rises as we don't tend to respond very quickly to demand 🤗.... my simplified version
"1 ish" is most common level for people with no thyroid problem / diagnosis.
see this graph: healthunlocked.com/thyroidu...
you will see that "over 3" is much less usual , "over 4" is extremely uncommon , but since a few healthy people with TSH of 3/4 DO exist , then that is why the 95% population ranges go from about 0.4 to 4.5 ish .
When taking Levo TSH is usually 'shifted' a bit lower ( along with a relatively higher fT4 level ,and a relatively lower fT3 level )
So due to this 'shift' in people on levo , an individuals 'optimal' TSH on Levo is usually a bit lower than it was when they were healthy (and not taking levo)
Some feel ok/ best with it at 1 , but some would be undermedicated at that level.
See this list of recommendations for GPs' to keep TSH between 0.4/0.5 to 2/2.5
.... and those are the most cautious recommendations .. in fact anything that is not 'totally supressed' (ie anything over 0.04) it not a concern in patients taking thyroid hormone as long as their T4 / T3 are in range , they feel well at that level , and they have no symptoms of overmedication. ( whereas 0.04 in someone NOT taking thyroid hormone would usually be a sign of mild hyperthyroidism )
see my reply to this post (3rd reply down) for details of the study showing TSH 0.04 - 0.4 has no increased risks in patents on levo: healthunlocked.com/thyroidu...
TSH Level cannot be interpreted in quite the same way in people taking thyroid hormone replacement as it is in people who are not .
Thanks for replying and clarifying some details. My TSH/T4 was borderline for years, with high antibodies. No treatment of course and a sluggish metabolism was just my 'normal'. During covid/lockdown it all went haywire and I was very ill before getting a GP to diagnose me. TSH 161, no T4. Can't help thinking Covid and vaccines etc has triggered /affected a number of autoimmune diseases if what I've heard is anything to go by.
yes it's quite possible covid infection and/ or vaccination is what pushed you over the edge .
mind you , it sounds like you were teetering on the edge and struggling anyway~ so in one sense it did you a favour and got you diagnosed and treated , without it you may well have stayed in the " we don't think your thyroid is bad enough to cause any symptoms , have you tried antidepressants ?" zone for another 20 yrs
Research findings do back up this potential for a destabilising effect from covid in some but not all people with previously stable thyroid treatment ... off the top of my head ~ one endocrinology centre found increases in relapse rate of Graves disease (in patents that had been in remission) , and increase in new cases of Graves. and i'm sure there is lots of other research out now.
I dont know about 'doing me a favour'. I was incredibly ill. My symptoms were so severe. My teeth crumbled and broke, cholesterol was 17, I had mucin in my legs, stomach like a hard football, bald patches, (hair an utter mess, I cried every day trying to look presentable for work) , freezing, puffy face, streaming eyes, hoarse voice, swollen tongue, couldn't swallow, tinnitus and hearing loss and my mental health got so bad I was crying down the phone to a GP in a maniacal state with uncontrollable sobbing. I had the most hideous panic attack at work with uncontrollable body shaking and they wouldn't let me drive home. The GP kept saying it was stress and didn't believe the thyroid result when it first came through. Not getting face to face appointments at that time was part of the issue. If a Dr could have seen me in person they'd have known it was something serious. I've ended up losing my job, no sympathy there, and now I feel lost even though I'm hugely improved physically. Please forgive the rant and being a bit off topic. Thanks for all the advice. x
So sorry to hear about your job Lulu and i totally understand 'feeling lost'
yes i only meant 'did you a favour' in the sense of 'getting diagnosed' , obviously not 'a favour' you actually wanted , or would wish on anyone else.
My GP was adamant there was nothing wrong with me until he got my sky high TPOab result back . then he said "oh.. your immune system seems be eating your thyroid "........ he did them again about 6 weeks after he'd given me levo as i don't think he really believed they could be that high.. (they were even higher on the next test)
But i've always been 'grateful' they were that high , as without them i would probably have been sent away with "you're only subclinical hypo , which cant possibly be causing the level of symptoms you have" for another 5years until TSH was much higher .. but i was already on my knees mentally and physically by that point. another 5 yrs would have had serious implication for mine (and my kids) future, i'd already had to move from where lived , cos i could no longer keep up with the work that went with it .. and i was a zombie after 4pm each day which is not great as a single parent.
Getting thyroid disease 'costs' us a lot more than most Doctors are prepared to acknowledge.
There's an academic paper that describes a study in Norway where they got thousands of people with no thyroid symptoms and tested their TSH. The results showed that most healthy people have a TSH between 0.5 and 1.5. There's another, smaller study here: ncbi.nlm.nih.gov/pmc/articl...
which shows most people having a TSH of 0.5 to 2.
Thank you. I don't think my TSH was ever that. Before diagnosis it was always around 4 (range to 4.7), and T4 borderline low. Explains a lot of symptoms but no treatment of course until out of range.