Hi everyone I have posted on here and had some excellent feed back thanks everyone👍🏻👍🏻
I need some advice AGAIN!! Background so far diagnosed 20th Sep 2018 my t3 was 24.2 no t4 done😡 Was prescribed carbimazole took it for 3and a half weeks then had a bad reaction to it..was taken off it doc gave me beta blockers on nothing till 31st October when my doc and endo spoke to each other and decided to put me on propylthiouracil for 6 wks..I was ill on carbimazole and never felt any better..now iv been on propylthiouracil 5days I feel worse...it only seems to be when I'm up and about I feel very weak my legs shake I sweat and Cannot stand without holding on to something I feel very ill,,unfortunately my GP isn't really understanding..I really don't know what to do next😭 I have scratched myself till I have bleed I showed my GP the scabs but he said the propylthiouracil will sort that out..😭😭😭 I'll really lost and everyday loosing the will to carry on...can someone give me some advice please🙏🏻
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birkie
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Hi birkie, sorry you’re finding things so difficult - the symptoms you describe do seem to suggest that your thyroid levels are too high, as shown by your test. I’m not familiar with the drug you’re on as I haven’t ever had a problem with overactivity, but others on this site have and will be able to advise you. Hang on in there. I suppose there’s always A&E or the walk in clinic, which would provide a check that your gp has put you on a sensible dose of the drug you’re taking. Thyroid hormones that are too high are very unpleasant aren’t they, best of luck to you x
I am going to my town tomorrow to post some parcels I'm paniking now has to how I'm gona make it..I don't drive and its £10 for a taxi..I'm so bloody mad I cud do this before the overactive thiyroid😡 I was also diagnosed with an overactive parathiyroid in 2004..so I have history I feel I sud be seen right away by an endo..not be forced to feel like this..😭😭😭😭
You are right - you need more and better attention than you are getting. There will be other people on here who will respond who also have hyperthyroidism and will be able to comment I’m sure. It’s a journey and I really understand what you are saying about how this stuff changes your life. It makes things we took for granted become hard or impossible. Call a courier to collect the parcels, ask a friend to take them or go with you. Or sod it, you’re allowed to be unwell, give yourself permission not to post them until you feel well enough. Don’t be afraid to hassle your GP, go to A&E or a walk-in centre - whatever you need to do if you need help. My dad had a saying ‘the squeaky wheel gets the oil’ and I always remember that when I feel I can’t fight anymore. If you make a fuss, you will get the attention, don’t suffer in silence. There are too many stoical thyroid patients suffering in silence out there, and I don’t intend to join them! Neither should you. I ended up in A&E three times when first diagnosed as hypo. I kept collapsing and paramedics would be called and my ECG would be abnormal so I’d be shipped off in an ambulance. It made my GP sit up and take notice. Be strong and be heard. Sounds like you need to ditch the GP or insist on an endo referral. I know it’s hard because when you are ill it is the hardest time to have to fight. Hyperthyroidism is a serious and debilitating condition - it can be brought under control, but yours clearly isn’t yet. You are not alone - call 111, call 999. Do what you have to do if it is getting too much. I wish I could reach out and hold your hand. Big hugs. You will get through this. Keep us up to date. x
I think my doctor is deaf because I collapsed in my local town and was taken to hospital the consultant their told me to come off carbimazole he sent a msg to my doctor he took me off them..I have been diagnosed with this since the 20th of Sep 2018..I have been ill now for approx 37 days I have had one blood test seen no endo..my doctor is just playing around.i asked him if I had graves his answer was well that's what your seeing the endo for she will be able to tell you...hang on no endo app so what am I being treated for if they don't know what kind of thiyroid condition it is...I can not go on any longer like this I'm trapped in my home..and if I do go out I feel like collapsing with weakness in my body,sweating and shaking..really if I feel the same tomorrow..I know I will I'm going to A&E..its maby the only way I can get treatment...😤😤 but it should not be like this..😫😫😫😫
Do it. Do what you need to do. Your doctor is clearly a jerk. You need an endo appointment. Lots of idiots end up in A&E because they are drunk or on recreational drugs. They are the time wasters. You are genuinely ill and in trouble. You need help - go and get what you need. That’s what the NHS is about, that’s what I pay my taxes for. Good luck. Keep us informed. x
Also - would you consider actually writing to the Endocrinologist? Putting your case, how ill and all symptoms etc . Ask when you will be seen - too ill to wait - when will all necessary tests be done and treatment started.
If you think it may be graves go and get your eyes tested at good ophthalmologist as when I had this as child it was them that diagnosed myself sent letters to Dr and hospital specialist. Mind you that was 35 years ago UK
Thanks for your reply my eyes have definitely got worse and I don't know if hyperthiyroid illness can affect your earring but I have gone partly deaf in my left ear it feel like when your on a plane and need to pop your ear..ENT said my drum won't pop..but I don't see them again till next year Feb 😡😡😡😡
Hi birkie. So sorry that you are feeling so unwell. I won't presume to say that I know how you are feeling but I was diagnosed with Graves (hyperthyroidism) about eight years and I well remember that awful feeling of not physically being able to put one foot in front of the other, having a racing pulse, sweating etc etc. I well remember one day walking about 100 yards too my local shop and ended up hanging on a wall half way there. I am not an expert on the subject but the advice I would give you is to bang very hard on your doctors door and insist on an early endo appointment. I would also advise that you use this forum because there are many here that are really clued up and can offer invaluable advice and support. Go to A & E if your doctor won't help and most importantly read up and get as informed as possible. I wont pretend that it is an easy journey but with the right care and knowledge you will hopefully feel better soon.
Thank you for your reply it's good to know theirs people on here who can advise you on your condition.im like you were I can't walk to far without needing to sit down the symptoms are awfull I really think I'm dying it's horrendous it's such a shame we have to suffer like this it's making me want to give up because I'm fighting with my GP to get this sorted but his only concern is filling me with pills..I'm a flipping Guinea pig..and that's not right when you feel really unwell..😡😡😡
Sadly, far too many GP's are ignorant to the impact that this has on peoples lives. Do you have any local support network, family or friends who can help? Are there any different doctors in your practice you can see? I know it is difficult to be assertive when you are feeling so ill but if your doctor won't help then go to A & E and take your blood results with you. No one should be left feeling like this.
I too was in this position last august and even though taken to hospital by ambulance on 2 occassions i was told to go home and go to bed and stay there as there is nothing they can do, my pulse was 140 resting with every sympton imaginable, they also did not have a clue about hyper meds and said they could not help because its a endo who needs to sort meds out!! Gp's are not meant to treat hypers but endo appts as you know are a 3 month wait at least....not good enough when you feel like you are dying.😊😊
Hi birkie i was diagnosed with hyper and graves last august and its such a rollercoaster of a disease and even though i am still of work now i am better than i was and on titration doses of carbi. Its a real horrid disease and nothing happens quickly with the thyroid, it takes around 6-8 weeks for your body to rid of the excess hormones , i had the full shabang of symptons, trembling, palpitations, breathless, body jerking, tremors inside and sweating, and full blown panic attacks day and night, it took me around 2 months to feel slightly better in myself but unfortunatly i have hashimotos too and fell more poorly and hit hypo then as the meds im on were too strong, a year on im trying to piece my life back together slowly feeling better than i was but still symptomatic but lesser.
Endo appointments are quite a wait and can be dissapointing, my advice is there is light at the end of the tunnel, rest and rest, get help from this wonderful forum and get to understand your blood results as you will need this when it comes to titrating your doses down etc, arm yourself with knowledge about your disease so you can back your disagreements up with endo's. Lol 😊they are not known to be in agreement and full of sympathy.
You will get there but it does take quite a while to see that tunnel light💡
Forgot to say, i also had muscle weakness and collasped on accassions, it will get better, also took to hospital twice and sent back home with all my symptons as they could not do a thing!! Looking back i understand why as you have to wait until your body adjusts and all excess thyroxine is out of your body-its very hard and i really feel for you.xx
It's difficut to tell whether symptoms are down to the medication or the disease itself, but I certainly had muscle weakness, tremor, sweating and itching in my first few months with Graves, and I wasn't prescribed carbimazole at all until my frst endo appointment at the end of the third month.
While both carbimazole and PTU will begin to work immediately, they don't touch the thyroid hormones already in your body, so it can take four weeks or longer for the effect to become apparent. If you think your scratching might be allergy-related, it would be worth trying antihistamines - if you aren't sure what to get, talk to the pharmacist. I had a rash when I first began taking carbimazole, antihistamine kept it under control, and it eventually disappeared anyway.
If your heart rate is racing and you have palpitations or tremor, talk to your GP about a prescription for beta blockers.
The treatments for Graves' disease are 1) antithyroids - just two drugs, carbimazole and PTU. 2) Radioactive iodine therapy (RAI) - your thyroid will be all/partly destroyed, and you will almost certainly become hypo or 3) thyroidectomy to remove the thyroid, again you will become hypo.
The CKS guidelines aren't mandatory, but they may help you when you dicuss things with your GP.
Hello Birkie, sounds like hell. I had thyrotoxicosis when I was initially I'll with thyroiditis. I was given beta blockers and valium to get me through the palpitations, agitation and muscle spasms. It won't help resolve your thyroid problems but might be worth discussing with your GP or endocrinologist for some temporary relief from hyper symptoms. Good
I'm on beta blockers and been on propylthiouracil since 31st of October 2018 could not stomach carbimazole kept vometing and starting to feel the same now 😢😢😢😢😢 what would Valium do would it help me,,I'm not sleeping to well at all and I have bad joint pain especially in my knees would it at least help with that
Thanks👍🏻👍🏻👍🏻👍🏻👍🏻
Your Doc might prescribe it for a few days to calm you down if you are really wired. They won't prescribe it for very long as it's addictive. It helped me sleep and reduced my muscle spasms when I was in the acute stage of thyroiditis. It leaves you really knocked out though so not great if you need to be with it for kids or work
I managed to get my GP to book me in for an appointment with the endo thank god...and iv to come off the propylthiouracil it's making me feel sick 😷 Hope my appointment is soon I will be discussing options with my endo...and coming on here for advice..🤗🤗🤗
I'm so sorry you're going through this and having such a terrible time with doctors. your levels are high so no wonder you feel so awful.
I'm 10 years and counting on meds (18 months on carb and the rest on PTU) and can honestly say that on bad days it's hard tell what's the side effects from the meds and what's being caused by my thyroid. From my experience it takes 4-6 weeks on meds for the initial hyper symptoms to reduce and it also felt like my thyroid was fighting back some days - I know that sounds weird.
Has your GP referred you to an endo yet? If you know the hospital where the endo is based phone or get a partner or friend to phone for you to move the appt along. I've had to do it myself a few times.
I have finally got my GP to refer me to the endo..I'm not veRyan good a takingredients Meds. .I was in hospital in 2016 with blood coming from my bowle they tried me on 3 types of antibiotics and I was ill on the lot so consultant gave up..☺
Whenever you go to see someone at your local surgery or go to A&E or go to hospital for a planned appointment for anything at all, take a witness with you - one who understands what you are going through, knows what you used to be like before becoming ill, is sympathetic to you, won't undermine you, and won't tell the doctor you are mad or mentally ill.
If you see a doctor on your own they will run rings round you, blind you with "science" which is probably nonsense they made up to get you off their backs, might even tell you you're mentally ill rather than physically ill, will fob you off, might shout at you, insult you, chuck you out of their office. Having a witness reduces the risk of any of that happening to nearly zero.
If you really want to make sure they stay polite tell them you are going to record the appointment too. You are allowed to do that - after all doctors record their appointments, so why shouldn't you.
The kind of witness you might want to take is a partner, a parent, a sibling, a friend, a work colleague, a neighbour, an adult child - the choice is yours. Male witnesses tend to be more effective. But be careful. I remember someone from this forum (several years ago) taking their father with them. Once they were in the surgery the father told the doctor he thought his daughter was mentally ill, and made things much, much worse.
You are suffering needlessly because of the 'mistakes' of others. Somehow, wealthy individuals seem to 'buy' the "truth" because they are really feeling terrible and are either famous enough, wealthy enough or have lawyers who can instill enough fear in their doctors to eventually get the 'truth' and thereby, the optimum prescription that can make them feel 'normal' once again.
But, take heart, we are all afraid in this life because of the inevitable fact they we are, all, going to, someday, die and how do you 'prepare' for that event. Keep your faith, speak to your heart, love can overcome everything: this is very hard to understand and, many times, I cannot lay ahold of it myself, but my belief in God keeps me believing in the good of all human beings. So, don't allow your heart to be troubled but also do not let it be afraid. Become like a lion when it comes to your own health and speak to these doctors as they are not so often spoken to: as one who, truthfully suffers, and one who is unafraid to speak the truth to them and that is that you are suffering and others are also, suffering, and they have a job, nay, a duty, to help you as best they can and, being as you know what you should be taking (through your research) tell them this is the truth: I need more liothyronine, T3, or I need to try NDT, or whatever you believe to be your proper dose. Your brain controls your thyroid and your thyroid may very well be your problem, as mine is my 'problem', but, if you believe in the spirit, then you will recognize that the heart controls whether you fear the truth or not and, the truth is this: you are suffering and you will help, not only yourself by asserting the truth to this 'powerful' doctor but others, myself included, when you speak it to whoever you must speak with to be treated with enough respect for them to do their jobs correctly and spend as much time with every patient no matter their position in life, or ability to pay.
Yes, there are 'cures' for hypo, hyper, diabetes, heart palps, etc. but there is also a spirit, your soul, which has a connection only to that vital organ that will 'force' you to speak your truth to anyone and everyone, thereby not only helping yourself but the one in front of you, who was too 'afraid' to speak the truth or the one behind you who desperately wants to speak the truth but wouldn't have until he/she heard you (speak the truth) and now does, thereby helping masses of people who will become 'empowered' by your courage. The more doctors who speak en mass the more 'powerful' their group becomes but, take heart, that same 'power' can become true in other groups the same way. Speak for yourself and others will also claim 'your victory' when you tell them 'your story.' And may your god's peace be upon you.
Ho and yes it' very true if you have money or are famous you get sorted ASAP look at Wendy Williams found out she has graves and every posh consultant was falling overy them selfes to treat her got fast treatment and the best I bet...😡😡😡😡😡
WOW. I just left my new Endo and told her she should update her knowledge. I had two appointments, she said every symptom I had had nothing to do with Graves or hormone levels. I sent her an article from this website Shaw, administrator, that was very good about T 3. No feedback at all. Another source by an MD about needing more T3, no feedback either. She says I'm in the range (the bottom of TSH, T4, mid on T3) so all is well no matter how I feel. I trust the information on this website more than the uninformed and uninterested doctors. Much faith is needed.
I don'trust doctors or consultants very quick story about my mother and father...my dad had a rough voice and kept loosing his voice I made him see our GP. .GP did not tests just said it was laryngitis dad went bk to be told same thing in the end his boss made him go back to docs turns out he had throat and lung cancer died 5 years later..mam same thing her foot turned in saw doc on many occasions no diagnosis then I insisted she see a consultant turns out she was in the early stages of MND she dies 18 months later...so don't trust them I do think you have to fight for your life sometimes and it should not be like that..😡😡😡😡😡
What would happen if you went to the doctor's office on a scheduled appointment, showed him your information that backed up the fact that you "needed" more T3 or you may become sicker and then, if he refused, say you will stay in his office until he changes his mind. Of course taking someone with you always helps, as doctors do not like witnesses to their evil ways.
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Is it normal to feel unwell when carbimazole is being reduced? 
Asking about muscle weakness... again
When to start feeling better?
So good to feel well again! 
