Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hi, Newbie here looking for a bit of help.
Im 40 years old and got diagnosed with Graves Disease 2 years ago with the usual hyperthyroid symptoms (wasting away, rapid pulse, fainting, rage etc) at which time I got taken to hospital for a few days as I really couldnt get upstairs without collapsing, which for somebody who was very fit 6 months previously and could run 20-30 miles a week was quite hard to come to terms with.
Well anyway, Ive been normal for the last 4 months and off the Carbimazole but in the last few weeks Ive been suffering a lot of the old symptoms (but not losing any weight) plus incredible mood swings, going from deepest darkest depressions to absolute raging anger over silly little things. Things are really sliding quite rapidly, with my normal 60-70 pulse rate shooting up to 100+ if I walk from the lounge to the kitchen and my knees, back and hips are like that of an 80 year old, if I sit for any amount of time I cant stand up straight and my joints ache permanently.
Last weekend I got in a raging temper with my wife over something so trivial, I was fuming and stormed out of the house intent on walking in front of an oncoming lorry. Luckily it was very late so there was no traffic so by the time I saw a vehicle of any sorts I had come to my senses. Im normally the most the laid back calm person I know, so to me it was obvious my thyroid levels werent right. I went for a blood test on Monday and arrived at the surgery ready to be told I needed to go back on my medication but I was shocked to be told I was normal (TSH 1.21 & T4 18.9), this came as quite a shock but the Doctor told me to go back and have my T3 tested along with checks for a full blood count and arthritis which I have duly done. This leaves me where I am today, I didnt hear back from the doctor so I rang the surgery and the receptionist told me that the blood count & Arthritis are normal but the lab refused to test my T3, as my TSH & T4 were normal (despite it stating on the form that it needed to be tested for my condition). This has sent me off into a mixture of anger and despair. Ive asked them to request the T3 gets tested but Im not sure if Im just wasting their and my time if my other results are all ok. Perhaps my job is too stressful and lifes other problems (my 19 year old cat and desk buddy has just been diagnosed with an overactive thyroid which stressed me as I thought he was dying I should laugh really), I just dont know anymore, I cant think straight.
Sorry If this is a long ramble but I just need to know is this just what it means to live with Graves Disease, is this just normal when you get stressed with this condition? Ive felt ok during and just after the medication stopped. Im quite scared about where this is leading if I am normal, Im starting to think I need to go away and live on my own to save my wife and kids from living with this horrible excuse for a human being I have become. Is it likely to have a high T3 reading that could be causing this, when all the other levels are fine?
Do you all live normally now, do you hold down full time jobs and deal with the day to day problems that arise like a normal person would?
Sorry for all the waffle, I just need some help before I do something stupid. If this is normal I just have to learn to deal with it or if I'm not right perhaps I need to go back to my Endo and demand some answers (minus the rage).
Thank you kindly for any advice you can offer.
Russell
Im 40 years old and got diagnosed with Graves Disease 2 years ago with the usual hyperthyroid symptoms (wasting away, rapid pulse, fainting, rage etc) at which time I got taken to hospital for a few days as I really couldnt get upstairs without collapsing, which for somebody who was very fit 6 months previously and could run 20-30 miles a week was quite hard to come to terms with.
Well anyway, Ive been normal for the last 4 months and off the Carbimazole but in the last few weeks Ive been suffering a lot of the old symptoms (but not losing any weight) plus incredible mood swings, going from deepest darkest depressions to absolute raging anger over silly little things. Things are really sliding quite rapidly, with my normal 60-70 pulse rate shooting up to 100+ if I walk from the lounge to the kitchen and my knees, back and hips are like that of an 80 year old, if I sit for any amount of time I cant stand up straight and my joints ache permanently.
Last weekend I got in a raging temper with my wife over something so trivial, I was fuming and stormed out of the house intent on walking in front of an oncoming lorry. Luckily it was very late so there was no traffic so by the time I saw a vehicle of any sorts I had come to my senses. Im normally the most the laid back calm person I know, so to me it was obvious my thyroid levels werent right. I went for a blood test on Monday and arrived at the surgery ready to be told I needed to go back on my medication but I was shocked to be told I was normal (TSH 1.21 & T4 18.9), this came as quite a shock but the Doctor told me to go back and have my T3 tested along with checks for a full blood count and arthritis which I have duly done. This leaves me where I am today, I didnt hear back from the doctor so I rang the surgery and the receptionist told me that the blood count & Arthritis are normal but the lab refused to test my T3, as my TSH & T4 were normal (despite it stating on the form that it needed to be tested for my condition). This has sent me off into a mixture of anger and despair. Ive asked them to request the T3 gets tested but Im not sure if Im just wasting their and my time if my other results are all ok. Perhaps my job is too stressful and lifes other problems (my 19 year old cat and desk buddy has just been diagnosed with an overactive thyroid which stressed me as I thought he was dying I should laugh really), I just dont know anymore, I cant think straight.
Sorry If this is a long ramble but I just need to know is this just what it means to live with Graves Disease, is this just normal when you get stressed with this condition? Ive felt ok during and just after the medication stopped. Im quite scared about where this is leading if I am normal, Im starting to think I need to go away and live on my own to save my wife and kids from living with this horrible excuse for a human being I have become. Is it likely to have a high T3 reading that could be causing this, when all the other levels are fine?
Do you all live normally now, do you hold down full time jobs and deal with the day to day problems that arise like a normal person would?
Sorry for all the waffle, I just need some help before I do something stupid. If this is normal I just have to learn to deal with it or if I'm not right perhaps I need to go back to my Endo and demand some answers (minus the rage).
Thank you kindly for any advice you can offer.
Russell
I work full time but I don't know if I would call my life normal just yet. I still have heart palps/racing heart when I'm trying to sleep at night. It's very annoying because I'm not sure if it's my own anxiety or the illness. I'm hoping my symptoms subside after the meds get in my system. You may find that an antidepressant will help some of the feelings of rage. I would try to determine if it's your hormone levels causing the emotional flares or if it's your anger about the disease. The two can probably get confused.
There are others on this site who can give you some sound advice about how to manage the disease, its symptoms, and side effects including the right things to eat.
Sorry to hear you're going through this but you're not the only one! Take care!
I'm sorry you're going through a lot right now.
Is there any possibility you can use something like Lab21 and pay out-of-the-pocket cost for the Free T3?
I hope you get the FT3 checked, because if it is high, getting put on a beta blocker to lower it down might be wise.
If still no FT3 checked, as doctor about getting put on beta blocker to get it down.
Would you post the lab range for your FT4?
Thanks and {{{hugs}}}
I'm thinking I need the T3 checked and the Doctor certainly told me I did, now they're telling me the exact opposite, or it could just be an awkward receptionist trying to fob me off.
My TSH is 1.21 & my T4 is 18.9, but I have no idea what they were when I was properly ill, as nobody ever want to tell me anything other than 'high' or 'elevated'. He did offer me beta-blockers to see if it helped my symptoms but I said no, not until I found out what was going on. I was shaking like a leaf at the Doctors surgery and my heart was racing, which the Doctor could see but now it's like because my TSH is ok he doesn't want to know.
I don't want to be told my thyroid is going wrong again but I would prefer it, if it meant I knew there is the reason for feeling like this. I been trawling the internet to see if my T3 can be out of range if my TSH is ok but there is so much conflicting information out there and I'm already feeling quite mad so I don't what is going on with head/body.
By pure coincidence my cat had a thyroid TSH test come back that showed it as normal but a further T3 test showed it being off the scale. He's now on meds and looking so much better, perhaps I should go and see my vet instead.
I am from the USA and not UK.
{{{hugs}}}
My Endo consultant won't see me either because of my normal levels and also confirmed he won't request a T3.
I must just be going mad and imagining it all. I don't understand what is going on with my body.
{{{hugs}}}
Yep, you understand now where I'm coming from with the Free T3. Thanks for your comments.
{{{hugs}}} :-)