Hi all,
Been lying in bed for 3hours can’t sleep, feel like I can’t breath, rapid heart, took my propranolol nothings happening.
I’m worried about my thyroid I don’t know anything about this disease, Iv had my blood test and it’s come back I have high thyroid levels, I’m waiting on appointment with endocrine. See when I’m
At my appointment will that be when I get told my t4 and t3 levels? I’m so confused it’s making me miserable.
Hi Lauren,
I saw your earlier posts about feeling hot and know you must be extremely upset not to be able to sleep - I was hyperthyroid with Graves’ disease before my TT and so I understand exactly how you feel. I can also tell you are frightened and worried. Remember that this anxiety is also from your hyperthyroidism- and the more anxious you are the worse you will feel.
For now, I would recommend cold compresses on your forehead so you feel cooler - I also found that an ice cube on your pulse points on the inner wrist help to cool you off too.
Have a cup of tea - chamomile or something else soothing without caffeine that will help you to relax. There is nothing you can do until tomorrow - so you will have to sit tight and try to calm yourself as best you can.
Can you call a friend or family member to comfort you? I know it is late in the UK - but maybe there is someone who will help you get through tonight?
Others on your previous post have given you some excellent advice. So I will not repeat it here - I just wanted to reach out so you do not feel you are alone out there - and someone is listening to you. It’s only 8 pm here in Canada and I’m still up.
Sending you good thoughts and all the best. 🙏🏻 Things will get better - hang in there.
Hi again,
I bet I sound like a right pain 🙈 my endocrine appointment isn’t for another couple of weeks there is a busy waiting list, I was going to go to docs today and talk to them but they won’t tell me much as I need my specialist appointment first to check my t4 and t3? I have a tea in my hand as we speak
You are not a pain! Don’t even go there. In the UK you are legally entitled to your blood work - and the other folks who answered you on your previous post told you where to get them from- so tomorrow morning - you will call your GP office and get the printout of all your bloodwork. Then you will post it here ASAP so we can help you interpret them.
I’m glad you have your tea! You didn’t even need my advice! 😉
Hang in there - hyperthyroidism is a tough disease - I speak from experience. All the best and update with your blood work - I’m sure all the “T”s will be in there for the specialist.
Thank you so much it’s good to have others for support, I’m on it il phone docs tomorrow for my print out and il post on here. 😊x
Poor you. I know exactly how you feel. My thyroid journey started like yours many years ago with a racing heart, sweating, anxiety, unable to walk because of breathlessness. This all happened very quickly just before Christmas and I was prescribed propranolol at an emergency appointment with an endocrinologist. It was weeks before I was able to return for follow-up investigations. Eventually I was diagnosed with a thyroid nodule which was causing my problems.
When you eventually get your appointment you can ask for a copy of your blood test results for your own records. You can then post them here and people will help you to make sense of them if you need them to.
I know you’re probably feeling frightened and exhausted and want this sorted quickly but it feels like everything to do with the thyroid is slow. It seems to be the same for everyone with thyroid problems whatever the cause. Try to accept that right now your thyroid is causing all of these unpleasant sensations and that you are in the process of dealing with it. Don’t try to do too much until you feel able.
I really hope you feel better soon. I’m thinking of you.
Hi lauren 85
I can sympathise with you as I have been going threw the same symptoms as you i was eventually diagnosed with hyperthiyroidism (graves) after my Gp mistook my symptoms for the menupause this as been going on for about 4/5 years eventually I had to have my thiyroid removed just this may..the sleeping and feeling hot especially at night was unbearable I purchased a huge fan had my windows open all the time even in winter.. the exhaustion was also a killer i had to eventually get my grocerys delivered as I could no longer get out as I found and I know it's hard I did less just rested until I had my appointment I accepted that this illness was not nice..I also slept through the day as like u I never slept much at night..are you working? If you are you may need to have some time off i have other issues health wise and I know their is no way I was able to work with this I was exhausted..my op as I say was may this year I'm still having problems sleeping but I hope my levo sorts that out...arm yourself with as much info as u can for your appointment tell them everything and tell them you feel awfull and are not coping well I hope they sort you out soon keep posting on here as people are great and give excellent advise
Good luck xx
Use Whole Thyroid, cut back on the dosage, until your resting temp first thing in the morning IN BED is 36.5, and your pulse rate is 75. then stay at that dosage. John
Sorry to jump in here on your thread. John, what do you mean when you say use whole thyroid? Is that NTD? Sorry I’m not up to speed with all things thyroid.
I don't really think John is, either. Someone who is suspected of being hyper would not use 'whole thyroid', which sounds more like a glandular, to me.
Just come into this discussion - you’re right GG - last thing on earth anyone with Graves needs is more thyroid of any sort.
I’d say Lauren needs to rest as much as life allows, do only what she feels like doing, not what she feels she has to do, be really kind to herself and wait until the propranolol kicks in although I imagine she will need carbimazole to reduce her thyroid activity.
Perhaps her GP could prescribe some to start her off. When I was eventually diagnosed my GP prescribed a starter dose of 20mcg then after four weeks I had a blood test and was contacted by my endocrinologist who increased the dose x2 and it wasn’t until then that my body slowed down and I started to feel a bit better.
Lauren should study all the information she can find starting with our own thyroiduk.org.uk website, she needs to learn as much as she can about the condition, make notes, keep copies of all her blood tests and the medicines and dates of everything she is taking, plus making sure her vitamin D, B12, ferritin and folate are well up in their ranges to help her thyroid function and also be prepared to ask questions when she finally meets her endo.
Trouble with Graves is - it’s a long slow process, unfortunately you just don’t get better quickly - but you can get better.
I don't thinks she should take anything on the basis of a TSH alone. She needs the frees and the antibodies testing. 
Which is yet another problem with products which appear to be free of thyroid hormones (according to descriptions), but then seem to have effects which would only be due to thyroid hormones being present. Sometimes reports of experience using them, sometimes advertising, sometimes part of the general "discussion" about thyroid.
Adding callout so the person being responded to is made aware!
johnmiller101
Yes, anxiety is all part of the fun! I hope you are asleep by now or possibly you are up having breakfast. Take care and keep in touch.
Thank you all for the replies
, I went to to sleep at 4am, it’s 9am now and I’m
So tired. I am on Carbimazole 40mg a day, the doc was instructed by the endocrine that I was prescribed this while I wait for my hospital appointment with the specialist which will be about 3 weeks as it’s a busy waiting list, I will need to look into this disease as I don’t know anything about it and all these T3 and T4 really just numbers to me. When I see the specialist will he/she tell me my full blood result when I’m there?
Just watch you don’t become hypo on 40mcg a day - that’s what happened to me by the time I eventually got to the hospital to see my endo although I was on 40mcg for two whole months so by the time I saw him I was ready to start on thyroxine - my hospital treats with ‘block and replace’ which he said was the ‘fast way’ - then went on to say it would take a year! In fact it took exactly a year then I stopped the carb which was still 40mcg a day and the thyroxine which I was taking at 100mcg a day. Then it was a case of waiting to see what happened and so far I’m still in remission six years later.
Definitely read as much as you can about Graves in particular and the thyroid in general - there is loads of information out there. If there’s anything you want to know more about you can ask on here or put it on a list of questions you want to ask your endo and work through your list when you get to your appointment.
I think it does them good to realise you are going to be proactive in your treatment rather than just unquestionably having your treatment done to you.
When I started on carbimazole my pharmacist came out to tell me to take vitamin C with it, so I always took 1000 mcg slow release vitamin C with zinc along with it and on the whole I felt ok. So I would do that.
I also went totally gluten free (not so much for my thyroid although I know people who are hypo swear by being gluten free) because I developed inflammatory arthritis which is another autoimmune condition and I thought it might be a good idea. My antibodies have since plummeted and that could be because it was their time to decline but I wouldn’t go back to eating gluten again because I know it has helped my IBS and although my body is still very creaky I know my CRP is now nice and low.
I don’t think I felt my best until I was taking the thyroxine along with the carbimazole and I felt a bit rough every time I needed my levo increased which is where I found keeping a record of my bloods, my medicines and jotting down a quick note every day about how I was feeling - if I hadn’t done that I’d have seen my endo and just said I felt fine then gone home and realised I wasn’t really feeling fine at all when I thought about it.
I never ever managed to get my T3 tested or my vitamin D so I decided to pay up, do my own finger prick home testing which does all the thyroid stuff plus vitamins and minerals and antibodies and now I monitor myself - much easier than arguing with doctors.
I asked my endo if I had Graves when I saw him first - I’d been in the meeting for a while, he outlined treatments including RAI and TT but he hadn’t even mentioned Graves and at one point I said something like ‘you mean like with Graves Disease’ and he looked at me and pointed and said ‘ Yes! That’s exactly what you’ve got, you’ve got Graves’. I really felt that if I hadn’t mentioned the G word he wouldn’t have either.
I asked the endo for my test results and he wrote them down for me with their lab ranges but after that I used to just ask for a print out at my own surgery. That wasn’t a problem and I wasn’t charged - just asked to come in when it was a quiet time.
Also my partner doesn’t support me that much she said I’m ok and I’m just milking it, she doesn’t know what it’s like to have this 😔 I feel alone
That’s all you need! Give her this to read and see if that helps. tpauk.com/main/article/lett...
Iv sent her that in an email, I don’t think it will make her see anything. 😔 z
Just a thought - maybe she should go to the specialist with you so she can hear about your condition straight from the horse’s mouth, so to speak. Sometimes hearing from an authority figure wakes people up. It might be worth a try - but only you know the dynamics of your relationship. Wishing you well .
Oh fingers crossed she will realise how awful you are feeling. Graves is really horrible.
Don’t know about you but I lost so much weight I looked better than I had for a long time which meant that I didn’t really look ill on the outside - inside I was a total mess.
I’m an older lady and I really thought I was either becoming mentally ill or developing dementia - I wasn’t. So because I looked ok on the surface people (like my next door neighbour!) didn’t really think I had anything wrong and was being dramatic etc.
Well it’s went bad she started shouting at me saying she’s sick of me going on about it all the time, she’s stormed out for a cigarette. She said I’m annoying 😔 all I want is support. I totally understand just because we don’t look ill doesn’t mean we are suffering. X
I do understand you! Nobody realized I was sick either because I had so much energy and was always so cheerful - I was actually “faking it” at work - and then would be so exhausted when I got home I couldn’t even talk to my husband or my son. I was a nervous wreck and so irritable - but not, I looked great! And a veritable ball of fire at 63!
My husband knew I was not well - kept telling me I needed to rest more - and I didn’t pay enough attention to him - I have now fixed that problem and do listen to him - I realize he can see me in a way I cannot see myself. I have come to appreciate and value his feedback on my moods and behaviour and I ask him even if he doesn’t offer his assessment - and it is helping me to adjust my meds appropriately.
You are doing great and we are with you. Although I have hypothyroid, I can relate to so much you are going through. The emotional imbalance and physical symptoms caused by the hormonal imbalance can be so scary and overwhelming and the anxiety (out of your control) and not sleeping just makes it harder to deal with. Know that you will learn more over time and it will get less scary. Know that you are not alone and these people will help and support you. It is SO challenging what you are going through and often people who have never experienced it cannot conceive of how difficult it can be. Once you get to know your symptoms and when they happen and why it will be less scary. You can heal and you can get better. Listen to your instincts about what feels right for you. Keep checking in with yourself. You will get lots and lots of info and advice, some of it contradictory, listen to your instincts. I had to learn that but it is serving me well. You will get through this. Sending love and blessings to you.
I was like that many years ago....now I'm Hypo; For calming it's good to take Magnesium, B complex, L-Theanine 200mg, Rescue Remedy, Worry not spray & Rest Well spray (by Higher Nature) the latter at night ; I give my daughter True Calm by Now from iHerb or Swanson in US.... Oils (doTerra) for anxiety are : Vetivert, Serenity & Balance....they say the combination of Serenity & Balance acts like Xanax only it's completely natural from pure oils....I even have Melatonin 3mg that I sometimes take....Rest Well Spray is my favourite nowadays....Good Luck to you P.S. If all fails, I take a Zolpidem after the Propranalol before big events / at night to help you sleep and try the meditation & breathing exercises....Also it helps to start taking LDN (Low Dose Naltrexone) it will help your thyroid and you won't need as much of the thyroid medication. You can join the LDN Research trust and read many stories of people struggling with same problems as yourself and being helped by LDN (you start low and slow) Here's the link : facebook.com/groups/LDNRT/?...... Plus this group even more so : facebook.com/groups/LDNthyr...
You sound like you have hyperthyroidism. They have antithyroid medicine for it, it takes a while, but it does get better. Try to reduce your stress load while you wait for your levels to decrease. It took me a couple of months to get my levels down. My dad had it too. I had rashes, heart palpitations, heart beat in my head at.night, hot flashes, weight loss if 20 pounds, heavy periods, anxiety, insomnia for a month, crying, inability to concentrate. It gets better once diagnosed and treated. But it takes a while to get regulated. I eventually had RAI ablation, after my cardiologist sat me down. Take magnesium to help calm your nerves, melatonin, and sleep meds. I was like a zombie with no sleep.
Ask your GP to test vitamin D, folate, ferritin and B12 if not been done
Low vitamin levels are extremely common with Graves' disease (and Hashimoto's)
Improving vitamin levels can significantly improve symptoms while waiting to see endocrinologist
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Very important to see exactly what has been tested and equally important what hasn't been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested (for Graves and Hashimoto's)
For Graves - TSI or TRab antibodies need testing
Private test available here
medichecks.com/thyroid-func...
Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
Low vitamin D is extremely common with thyroid disease
Also EXTREMELY common in UK, but especially in Scotland
Also common with insomnia
Just vitamin D test here £29 via NHS postal kit if GP won't test
But GP SHOULD test vitamin D, folate, B12 and ferritin with any patient who had thyroid issues
Couldn't actually see any thyroid test results in any of your previous posts
You really need to get hold of these. You are legally entitled to printed copies of all your blood test results
Looking for test results for
TSH
FT4
FT3
TPO antibodies
TG antibodies
TSI or TRab antibodies
Vitamin D
Folate
Ferritin
B12
Cholesterol test would be good too
Do you struggle to gain weight?
Or is weight gain a problem?
Magnesium supplements can help improve anxiety.
Propranolol can low magnesium levels. Reading The Magnesium Miracle by Carolyn Dean is informative
Low magnesium also common with low vitamin D
You must not stop taking propranolol.
Do you take same dose of propranolol every day?
Is this several small doses (e.g. 3 or 4 x 20mcg tablets per day? or one slow release capsule? )
I was stuck on propranolol for almost 20 years. Anxiety was due to autoimmune thyroid disease (Hashimoto's) and undiagnosed gluten intolerance, plus low vitamin levels. Getting full Thyroid and vitamin testing as advised here, was key to making progress. (More info on my profile.)
You can and will get better. But in middle of night and if not sleeping, problems can seem insurmountable.
Keep posting, there's always help and understanding from members on here
People with no experience of thyroid disease find it difficult to understand just how terrible you can feel, while looking perfectly "normal"
Hi there, i am in same boat, have been told thyroid abnormal, i have results i dnt understand and i feel so darn awful i am desperately looking for answers but have to wait another 8 weeks for another blood test, went back to the doctors yesterday and i am back on HRT hoping that will help somewhat.
Hi Lyn how r u feeling today ?
Hi Lauren, im finding the breathlessness and sweats darn awful but have spent a nice few hours with my Daughter and grandaughter today and im now laying on my bed with fan on relaxing, i am going to try and see a locum gp at my surgery next week as I've been told that he has a good knowledge concerning thyroid/hormone i really am desperate to try some kind of medication.
Funny how i feel this way as ive always tried to avoid taking anything and only ever as a last resort but with how this has knocked me for six I will give anything a go.
Sorry to hear your having the sweats and breathlessness, how old r u if u don’t mind me asking?
The sweats are horrible I was doing housework and I had too stop as I was so hot and out of breath. I’m waiting on my appointment with specialist could take up to 3weeks as it’s busy! R u from the uk x
I don't know how old you are but I've had this experience twice and even though I'm hypo I was told it's part of menopause...after the first one is pretty much when I went into full blown perimenopause.
I am 33
Can’t tolerate my thyroid meds
Any advice? Can’t take carbimazole 
Sleeping 
