She ask that I post it to the Board. She said that she is just feeling so ill and asks if anyone can shed light on what is happening to her. ... I hope someone can be of help. Sounds so scary.
Lora7
This morning I woke up feeling strange. I started to sweat and my heart was pounding I thought I was having heart attack an ambulance was called and I admitted to hospital. When I got there I was shaking and my head was hurting the nurse put me on heart monitor and she did ECG. I had a blood test for thyroid function and a liver function. My blood pressure was high and l felt sick. I spent 4 hours in A and E. My results came back that my TSH was 0.53 so my doctor told me it was low but still in range. As usual they didn't test my T4 or T3. I feel like I am overactive but my doctor says not I am now in bed feeling ill.
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Gingersnap202
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I am not an MD, Lora, but I know you have Graves, and I think you may have had a Graves hyper episode today. The elevated blood pressure, headache, palpitations, and sweating seem to me to suggest it. I had the same thing happen to me twice before my TT. It’s too bad they didn’t run your other bloodwork. Can you get it done through your MD or use Medichecks? It would be really useful to see the blood levels. I can’t remember if you are on carbimazole, but you may need a dose adjustment if you are.
I hope you feel better soon and sending good wishes and prayers your way today. 🤗
Thank you, I will get a Medichecks test tomorrow.It is Lora7 but I was feeling so ill I got locked out of my account because I couldn't remember my email or password. I wrote them down somewhere and mislaid them.
No because my TSH was in range and my heart was normal I was sent home. Since I posted this I rang 999 because my chest started to hurt again and my body started to shake uncontrollably. The paramedics took my blood pressure which was slightly raised and gave me a ECG which was normal. They told me I was having a panic attack which is rubbish! I am going to ring my GP and ask for an urgent appointment today and see if they can help me. Luckily my son is off work and will be able to drive me because I am incapable of driving.
Keep us posted on how you do with your GP. It is helpful for Graves patients without asthma to have a beta blocker prescription handy for palpitations just in case even if they don’t need it regularly and it also helps to calm you down - and it wouldn’t hurt to ask your GP for a sedative in case this happens to you again so you can sleep and rest. The stress alone is bad for Graves. How frightening for you and disturbing to be dismissed as having a panic attack! I’m so sorry you are having such a hard time.
I am hoping I don't get my designated doctor *Dr Baldy* because he is useless as you have seen from my previous post. He says things like "My hands are tied because your are within NHS TSH levels" and "It's only hair isn't it?" I am taking my son for back up because he witnessed my last hyper and he thought I was having a heart attack.
I have just read my discharge papers from the lady paramedic and my heart rate was 112 and blood pressure was 98/174 no wonder I felt ill. She was heartless by the way she told me I was having a panic attack. Her two male assistants were lovely and I could see the concern on their faces. Her face showed annoyance and she kept sighing because I wouldn't calm down and she left me with my dress lifted up to my neck which I was too ill to pull down. I feel sorry for any seriously ill patient she happens to treat.
Hi Lora7again, I had exact issues as you have been experiencing recently and it stinks and doctors find nothing wrong as I suffer feeling like a lunatic for going to Emergency Room and it wasn't until my eye popped out of the it's socket did someone finally deal with me and sadly I ended up with thyroid cancer and required a thyroidectomy 3 yrs ago now and as you might have guessed having no thyroid stinks too.
My doctor says the same thing after being switched to teva he says my hands are tied it’s the government to blame I am still not back to normal after a year went private and my antibodies are 3000 my daughter was the same her antibodies are 4000 our doctor keeps saying it’s the government to blame I take it it was after been on Mercury for over twenty years then been switched to teva .
My antibodies have crept back up to 4000 as well but my TSH is only 0.70 so I can't be treated. I am just waiting for my thyroid ultra sound so I can have the full picture.
I’m very sorry to hear what you have been and still going through. Could you get someone to take you to a different hospital to get all your thyroid bloods done. Just get to A&E at another hospital for the quickest response. Are you on any medication that may make things worse. Maybe you need a decrease or increase in medication.
If you’re seeing a GP today request a blood form with T4 T4 and TSH on. Say you will go to your local hospital phlebotomists to get bloods done when you are having the symptoms. Could you get somebody to take you.
I have a spare blood form always from my GP so when I feel bad I can capture what’s going on on the day.
I do hope you’re feeling a little better. Some ambulance crew members are unsympathetic, I know I’ve had that too. They have no idea how Endocrine issues can effect people. We can feel it but no one else can see it. Only blood tests will help and the full blood tests are required. If they won’t do the full blood tests while you are in hospital ask to speak with a PALS person immediately. Say you won’t leave without full tests and a chat with PALS. They should come to you at your bed in hospital. They can liaise between you and the A&E Dr.
I had exactly same experience pre Thyroidectomy on a number of occasions including the uncontrollable shaking. I also have graves. During one of these episodes I had a retinal aneurism.
I used beta blockers to control heart but I felt they were like a rush of some kind, I am also in early mesopause, could it be related to your cycle?
After thyroidectomy (near total) it has not happened to the same degree I had one bad do where I ended up back on a&e about 2weeks post op (now 6 months) but now I get same initial feelings but does not turn into same terrifying experience.
I hope someone can help explain this as am very nervous of it happening again but take heart they are not as bad after Thyroidectomy and I am banking on them stopping altogether eventually.
I was diagnosed with Graves when I was 50 and went into remission for 4 years. I think Graves is back and I am going to see my GP this afternoon. I have also ordered a Medichecks blood test. Thanks for your helpful comments. I felt so alone yesterday because everyone though I was making it up. I am 60 now btw.
They said I was having panic attacks too but I’m sure it wasn’t that, I am so reassured someone else had same symptoms as was beginning to think it may have been unrelated to thyroid and so might just happen again.
They gave me fluids in hospital and I think that helped. Also kept asking me why I was shaking and was I cold? I have no idea what makes me shake like that but interestingly I had the same thing on the night after I after I gave birth to my daughter but didn’t know what it was at time. It was 8 months after that I was first diagnosed with hyperthyroidism. They treated me with carbimazole and I went into remission. Then about 4 years ago these symptoms returned but blood tests some back technically normal so they said I was stressed then that I was having an early menapause at 42 so have me hrt, then my t4 rocketed in may last year.
I have had thyroidectomy in January and am just beginning to feel like a human being again but scared to say it out loud.
I had terrible panic attacks after my TT for about 3 months and they have now disappeared (I am almost 6 months post TT) thankfully, once meds were adjusted. Meds not perfect yet but I’m getting there and wish you well with your recovery. All the best.
I have just met a nice Russian doctor who was shocked how little treatment I have been given over the year (I wonder what thyroid treatment is like in Russia?) I am going for a full thyroid function blood test tomorrow and he is also giving me a thyroid scan at the practice. He wouldn't give me anything to slow my heart down because he wanted to see the results first. He was the first GP other than Dr Skinner who examined my neck. I am feeling hopeful.
I also have access to all my blood tests and medical records, back in 2014 my TSH was 0.89 it is now 0.53
I'm in tears the comments some of the Doctors have said about my mental health to each other when I was infact suffering from Graves' Disease. I feel like they have let me down :o(
Doctors can be so insensitive when they write stuff in your file. You know that they were wrong and they did let you down by not pursuing things further to see what was wrong with you.
I experienced this myself with my former family doctor and my back surgery. I made the decision to simply dismiss him from my thoughts - and focus on my own well being. I can only speak for myself - I try only to look forward now and try not allow ill-intentioned people to affect me or my health. Easier said than done for me and probably others too, but I try.
You seem to have had a very good experience today with your doctor - and hopefully you are moving forward with good care. Feel good about that, Lora, as much as I know you feel badly today, both mentally and physically. Things are looking up for you. Hope you feel a little better today and that you get some sleep tonight. Hang in there. 🤗
You are right it just makes you think if you confront them they start making comments about your state of mind. One of the Doctors spotted my goitre and surpressed TSH. He started the ball rolling by getting me an appointment at the hospital. I actually thought he was on my side. Some of my appointments with were marked "delusional" contact mental Heath team for assessment. Even the receptionists has made a comments about me because I asked for my blood results, one had wrote "telephone call, troublesome patient". Years ago I fell over and hurt my back so he wrote "watch alcohol intake perform liver function test" that was a one off and it was because I was wearing high ankle strap shoes 💃🏼 Grrr!
I am just going to try and get some sleep which will be difficult because I have got a blood test tomorrow ... I just hope my nice Russian doctor doesn't read my medical records😥 Thanks for all your help xx
I suffered from TMJ Syndrome for six years before i found a Doctor who didn't treat me like I was crazy. ... As one doctor finally told me: "If they're not upon it, they're down on it."
My daughter was the same the pharmacy gave her Teva Levothyroxine a year ago and she hasn’t been well since she had been on long term mercury her doctor says it the government to blame and not to time watch it could take more than a year to get back to normal
You need your t3 and t4 tested . I was the same and after saying how I felt to my dr he thought I was over reacting and made me wait outside his room while he rang hospital. I was told to make my way to hospital to amu, waited 2 hrs b4 I had ecg probably because they thought my heart rate would settle, it was still racing and consultant said tsh ok you probably have an infection. I said no can you test t3&4’ he said well tsh is ok. Eventually he came back and said he’d added t3&4 to bloods. Results for t4 range is 12-22 mine came back 95. Put on carbimazole then sent home. So matter of fact and weren’t impressed to be proved wrong.
I think Lora went hyper. I used to shake so much I couldn't hold a mug. My heart rate was 100 so I'm surprised they didn't treat her. 0.53 may well be in range but clearly not enough for her to feel so ill. They make me so angry when they say your in range. Keep us posted as to how she gets on.
I'm afraid I don't know much about Graves but I am sending my sympathies just the same. Shameful the way you are talked down to and brushed aside by these so called healthcare workers. When did compassion for a patient completely leave the room??
I had my blood test this morning which was a full thyroid function including antibodies. As I was leaving the nurse said if your bloods are normal you won't hear off us. I said I have been in hospital with shaking and an elevated heart rate and I also have Graves' disease, she just looked at me blankly ... I give up! I told her that when my results come in I want a copy of them .. she says yes if the Doctor says it is ok ...
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