Overactive Thyroid Graves Part 4

Hi everyone. Sorry I haven't been on for a while .... full of busy.

Hi Stefania. Welcome to the forum. My Graves flared up after 40 years, due to a shock and stress. The endo suggested that I had either RAI or surgery.Eighteen months is about the longest you can stay on Carbimazole. I decided to go for the RAI rather than thyroidectomy as there are risks associated with any surgery. I'm pleased I had the RAI, and haven't regretted it for a minute.I have my life back, and I feel fine. It's something that you have to decide yourself, but if you do decide to have the RAI I hope everything goes well for you. Take care.

Hi Deb. It sounds like you're feeling a lot better.Your T4 was ok, but your TSH was a bit high. I'm only on 50 mcgs of Thyroxine. I suppose it depends on how much your thyroid has been disabled with the RAI. I've felt better since the weather cooled down a bit.

Hi Debbie. I get heartburn when my levels are too high. It's a well known symptom of Graves, although a lot of doctors don't seem to have heard of it. I get shivery spells sometimes. I don't seem to do warm anymore, I'm either hot or cold. I think my thermostat must have gone.

Hi Leanne. I wouldn't worry too much about the RAI. It's only prolonged close contact with someone that should be avoided. The doctor who gave me the capsule said it was all just a precaution. Our little granddaughter was about eighteen months old at the time, and he said I could pick her up and kiss her, but it would be best not have her on my knee for any length of time. Do you have to have the nodule removed even if you have RAI? Let us know how you get on.

Thinking of everyone. Bess, Sue, Kat, Maria ......are you ok?

love,

Marigold

xxxx

Hi all. It's been a while since I've been on here altho' I follow it regularly. (Ok! I admit it, I forgot my password!)

It's 14 months since my RAI & 20 months since I was diagnosed with Graves. Since then I have been on a roller coaster ride of Hypo & Hyper. I would recommend RAI to anyone, but be prepared for your levels to rise to start with before they eventually drop. (my T4 was higher than 100)

I have been on 100mg of Thyroxine since October last year & I'm convinced my levels have been up & down ever since. NOT as bad as before RAI just enough to upset my bowels, moods, sleep, etc.. Has anyone else had this or am I a moaning old fart? I'm sure my GP thinks I am as when they eventually do a blood test the result is always in the normal range!

xx

Hello everyone.

Hi Manic. Shame on you for losing your password.

I think it's important to remember that although your thyroid levels may be in the normal range now you still have Graves, and one of the symptoms is anxiety which does affect your bowels, mood, sleep etc.

I'm a worrier, but I think the best advice I was given was to try and distract myself when I felt a worry coming on. I go over conversations and worry that I've said something to upset someone. I worry over things that happened years ago.If I can't sleep I get up and make a cup of tea and read something light hearted.It's better than lying in bed and going over and over things. Relaxation tapes can help too. It's trial and error until you find something that works for you. I hope things settle down soon. Take care.

How's everyone doing?You're very quiet.

love,

Marigold

Hi ,

Thanks Marigold it makes sense. I never worried unnecessarily before. I always had good reason!!

You would think that GPs would learn to listen to us, I know they are taught it in Medical school as I have been a patient for student exams & there is great emphasis on it so, in the future they should be better!

I see you have had graves' for 40 years, poor you. I know what you mean about having a faulty thermostat, I was told it was my age! I passed menopause several years ago! So was told some women still get them at 80 !! oh joy!

Take care

xx

Hello. I've very recently (last week) been diagnosed with hyperthyroidism. I'm in the military, and am an avid

runner. In the past year or so I have noticed my run performance declining considerably. My condition was discovered during an annual physical. My endocrinologist said that the number of and size of nodes on my thyroid could have only been caused by exposure to radiation of some sort. I was baffled as to when I could have been exposed to any type if radiation. Then, I recalled that the base I was deployed to in the Middle East was rumored to have been built on top of an old Soviet chemical dump. Upon research, I found that it wasn't rumor, but truth. Now, I am planning on battling the military for exposing troops to such atrocities. Kinda like Erin Brokovich. Ha.

Has anyone on here got their gift of thyroidism from radiation exposure? I'd love to know what I have to look forward to!

Also, please excuse any typos I may have made...posting from my phone.

Thanks!

Hello Scott, sorry to hear about your exposure! I had a brief episode of hyperthyroidism when in my late teens, which seemed to resolve itself. Then in 2008, it flared up again, just 3 years after radiotherapy for cancer. I was told that the radiotherapy could have induced it to flare up again. I wish you good luck with pursuing the military for your exposure.

Hello Everyone

Quick update.. i have now been on Thyroxine for bout 6 weeks, 2 weeks on 50mcg and 4 weeks on 100mcg. My latest bloods this week showed T4 had gone up from 4 to 16.8 and my TSH has dropped from 93 to 91.

However i still feel unbelievably tired, now more moody than i was before and generally fed up.

Can anyone explain that, as i thought now the T4 was in range i would start to feel much better. If anything i feel worse in myself.

Thankyou

Chris x

Oops, my TSH is 31 not 91 x

Hi All

Hope everyone is doing ok.

Just a quick update from me, was previously taking 30mg of carbimazole until August when the dose was reduced to 15mg, T4 level reduced to 12.6 in July & remained 12.6 at end August. I took this dose for a few weeks but started to feel really tired, lethargic, cold all the time, hair falling out & put on loads of weight. I felt I had gone underactive and decided myself, because I have been feeling so bad, to reduce dose to 10mg pending my surgery which is scheduled for mid November. I thought this would keep T4 at a constant 12.

Went for a blood test towards the end of Sept but the nurse did full blood count not thyroid function test so had to go back again last week.

Got result now which has really shocked me, T4 has gone back up to 35.9! what is going on, I feel like I've gone hypo but blood says I've gone hyper again. I really don't understand at all.

Now I'm in a major panic because I need to back within normal range before I have the op - what are the chances of that happening in 4 short weeks!!

I'm very stupid, I know I should have remained on 15mg but I thought I knew better!!

Has anyone else had experience of feeling hypo but being hyper? Does it make a difference what time of day you have the blood test done, mine are usually first thing in morning but the latest one was later in the day.

Chris - I hope you get sorted soon, sounds like you are having a difficult time, I can't explain your results but from what you read, you're right you should be starting to feel better, fingers crossed you will very soon.

All the best to everyone

Ann

My endo put me on methimazole for my hyperthyroidism. However, after four days I could not stand the way it made me feel. I couldn't think straight, I had no energy, and I just felt blah. So, I stopped taking it. I started taking L-Carnitine (over the counter) instead. I still have the symptoms of hyperthyroidism, but at least I don't have the symptoms that the methimazole gave me. My next endo appointment is 1 November, so I need to stick it out for the rest of this month. I really, really hate this condition. I'm getting aches and pains where I never had them before. My eyes sting. I cannot sleep at night. My collarbone hurts terribly (is this a symptom of hyperthyroidism?). I lose my temper with my family. I cannot think at work. It's miserable.

If my endo decides to take action on my thyroid (surgery or destruction), will all the symptoms stop?

Hi Scott

I had similar problems to you the first time I took Carbimazole, it made me feel dreadful, spaced out & like I would faint at any moment. Looking back I think it was because I was asked to take too many pills too soon, I think your body needs time to adjust to what is happening. I ended up in A&E one day because I felt so awful, thought my whole body was going to shut down!

So second time round I started off with a low dose & built it up gradually and I felt ok doing this. So if your endo wants you to go back on it try building up the dose slowly.

Hope you get sort soon

Ann

PS I've opted to go down the surgery route - I will let you know how it goes!!

Hi everyone on here!

I am very new to all of this and Im just trying to take in as much information as possible. Im going to start from the beginning (good place to start).

Im 24 year old female and for a few years i have been suffering from really bad anxiety problems and ive had a history of depression. Ive been trying to deal with them myself as I really really didnt want to go back on tablets as they really made me feel awful.

Since the start of September I have been itching all over and it just wouldnt stop. There was no rash or marks anywhere and it really got me puzzled. Initially I thought maybe its the bed sheets but we changed them and I was still itchy. 14th September I went on holiday to Disneyland (for my birthday, im the biggest Disney fan) and i was still majorly itchy and it just wouldnt stop. Whilst watching the parade my heart started palpitating loads and was really bugging me but i put it down to being ridiculously excited! Anyway we did a hell of a lot of walking in paris so i expected to lose some weight but when i got back i have lost about 8lbs. I was dead happy. After getting back from Paris on the 17th i went back to work and i was fine.

So on the 23rd September i went to go to work and i got to the bus station and felt incredibly dizzy and sick. I felt so bad i took myself home. I booked an appointment for the same day. Whilst walking to the doctors i fainted somewhere on the way and my heart felt like it was beating out my chest. i kept losing my eye sight and it was so scary. I managed to get there and the doctor said its probably food poisoning (hadnt eaten any takeouts) and she sent me to get my bloods done 'just in case'. So i slowly made my way to the blood clinic (across the road) and i just felt so so so awful. I got my bloods done and i just fainted and they suggested to go to A&E.

After being dismissed by 2 nurses, i managed to see a doctor in the hospital who was so kind and really made sure he checked everything. After checking my bloodpressure it was clear that when i was sitting my BP was 122/83 and when standing it was 73/30. Soon as i stood i got ridiculously sweaty and my eye sight would go and my ears would get really muffled. My heart rate at this time was 126 and by this time i had lost 11lbs in 10days. He then admitted me to hospital.

After doing various scans of my heart and numerous blood tests they came back and said they found what was up!

So my bloods came back like this:

TSH Level <0.02miu/l (0.35 - 5.00)

free t4 level56.5pmol/l (11.0 - 23.0)

free triiodothyronine level 23.8pmol/l (3.9 - 6.8)

he said my levels were high and its likely that its graves disease and thats all he said! i got given tablets and got told to come back in 4 weeks for a check.

i was given carbimazole 40mg once in the morning

propanolol 40mg 3 times a day (120mg)

after starting to take these i am better standing up but im still getting symptoms, such as my hair falling out and my heart racing. my asthma has been super bad after taking the propanolol. ive been off work for 3 weeks now and ive just been signed off for another 2 and a half until my appointment with my endocrinologist on the 24th oct.

i have just got back from the doctors and its about a 5 min walk from my house and my heart felt like it was going to pop out and i felt dizzy and tired again. i feel so terrible. ive not left the house (apart from going to the doctors) soon as i do something (even as small as making a cup of tea) i feel terrible.

i feel like this is never going to end, being off work is so rubbish and im worried about paying my rent. how long do people feel terrible for? were work understanding? i feel ive had no support at all.

sorry for the essay!

x (0.35="" -="" 5.00)="" free="" t4="" level56.5pmol/l="" (11.0="" -="" 23.0)="" free="" triiodothyronine="" level="" 23.8pmol/l="" (3.9="" -="" 6.8)="" he="" said="" my="" levels="" were="" high="" and="" its="" likely="" that="" its="" graves="" disease="" and="" thats="" all="" he="" said!="" i="" got="" given="" tablets="" and="" got="" told="" to="" come="" back="" in="" 4="" weeks="" for="" a="" check.="" i="" was="" given="" carbimazole="" 40mg="" once="" in="" the="" morning="" propanolol="" 40mg="" 3="" times="" a="" day="" (120mg)="" after="" starting="" to="" take="" these="" i="" am="" better="" standing="" up="" but="" im="" still="" getting="" symptoms,="" such="" as="" my="" hair="" falling="" out="" and="" my="" heart="" racing.="" my="" asthma="" has="" been="" super="" bad="" after="" taking="" the="" propanolol.="" ive="" been="" off="" work="" for="" 3="" weeks="" now="" and="" ive="" just="" been="" signed="" off="" for="" another="" 2="" and="" a="" half="" until="" my="" appointment="" with="" my="" endocrinologist="" on="" the="" 24th="" oct.="" i="" have="" just="" got="" back="" from="" the="" doctors="" and="" its="" about="" a="" 5="" min="" walk="" from="" my="" house="" and="" my="" heart="" felt="" like="" it="" was="" going="" to="" pop="" out="" and="" i="" felt="" dizzy="" and="" tired="" again.="" i="" feel="" so="" terrible.="" ive="" not="" left="" the="" house="" (apart="" from="" going="" to="" the="" doctors)="" soon="" as="" i="" do="" something="" (even="" as="" small="" as="" making="" a="" cup="" of="" tea)="" i="" feel="" terrible.="" i="" feel="" like="" this="" is="" never="" going="" to="" end,="" being="" off="" work="" is="" so="" rubbish="" and="" im="" worried="" about="" paying="" my="" rent.="" how="" long="" do="" people="" feel="" terrible="" for?="" were="" work="" understanding?="" i="" feel="" ive="" had="" no="" support="" at="" all.="" sorry="" for="" the="" essay!="">

free t4 level56.5pmol/l (11.0 - 23.0)

free triiodothyronine level 23.8pmol/l (3.9 - 6.8)

he said my levels were high and its likely that its graves disease and thats all he said! i got given tablets and got told to come back in 4 weeks for a check.

i was given carbimazole 40mg once in the morning

propanolol 40mg 3 times a day (120mg)

after starting to take these i am better standing up but im still getting symptoms, such as my hair falling out and my heart racing. my asthma has been super bad after taking the propanolol. ive been off work for 3 weeks now and ive just been signed off for another 2 and a half until my appointment with my endocrinologist on the 24th oct.

i have just got back from the doctors and its about a 5 min walk from my house and my heart felt like it was going to pop out and i felt dizzy and tired again. i feel so terrible. ive not left the house (apart from going to the doctors) soon as i do something (even as small as making a cup of tea) i feel terrible.

i feel like this is never going to end, being off work is so rubbish and im worried about paying my rent. how long do people feel terrible for? were work understanding? i feel ive had no support at all.

sorry for the essay!

x>

Ann:

I'm a runner, and I was really concerned about the collarbone pain. I went to my primary care doc yesterday afternoon to have him check it out. Embarrasingly, it turned out to be that I sleep with my arm above my head, and it has nothing to do with my thyroid condition! Ha! However, I told him that I stopped taking the methimazole that the endocrinologist put me on, and he really let me have it. He told me that "Of course I would feel bad in the beginning when I take it. My body is making adjustments to what my thyroid has been messing up for several years." So, this morning I started taking the meds again. Hopefully they do the trick. I just want to get back to marathon condition again. I don't know if that will ever happen, though. He also told me that the methimazole will "kill my thryoid". My endo told me that the methimzole will "assist" my thyroid. I tend to believe my endo more. Does anyone know anything about this? I'm so glad I found this forum!!

Hello fellow thyroid sufferers, reading through all your comments, one thing struck me: nobody mentioned trying to alleviate the symptoms via a more natural way than the drastic method swallowing a radioactive substance. Has anyone come across any advice re which foods to avoig or take in greater quantities? Has anyone been told about not to take iodised salt? The daughter of a neighbour had Graves disease and went on a special diet. Twelve months later she is still free from her symptoms and her thyroid is stable. I realise that everyone is different, but why don't doctors look into this first? I have been told that the radioactive way has a slightly higher risk of developing stomach cancer!

Hello

How is everyone .

Where are you all

Deb x