47 replies to this topic

[runninguphill]

Hi, I was diagnosed with Grave's Disease about 14 months ago. I realised something was wrong when my fitness suddenly nose-dived: I was getting weak on previously easy runs, breathless on hills and my heart rate was really high (even when not running). I have been on Neomercazole for a year or so now (and just diagnosed with stomach ulcers that may have been caused by the medication!) but am in the process of weaning off it and hope it will go into remission. I have been struggling with my energy levels lately, felt very flat during my last half marathon.
I am wondering if there are any other runners out there with Grave's and what their experiences have been.

[ican]

Hi Runninguphill,

I was diagnosed about 12 years ago and since then have had 3 children, ran 3 half marathons and currently training for my first marathon. The key is getting the treatment right, which can be a long or short road. I tried a couple of types of medication (Carbimozole agreed with me) before getting the radioactive iodine 8 years ago. Apparently sometimes medication alone can rectify the problem, not for me though.

You get to know your body pretty well in respect to levels of medication and how it's stabilising your metabolism etc. Stick with it, you'll get there. It doesn't say where you're from. I can let you know the name of my specialist if you want, just PM me.

[Dizzey]

Hey Runninguphill,

Great name. I know that's how you must feel some the time with the Graves, especially prior to the medication. I was diagnosed with Graves about 4 years ago and have been on Neomercizole ever since. I currently take only half a tablet per day now, but do have blood tests every few months to ensure the dosage is correct. I had the blood test very frequently at the start though to get the dosage right in the first place.

Maybe suggest the blood testing to get the dose right to your GP and see how that goes. I must admit though, I have had no side-effects what so ever unlike what the meds may be causing you.

Hope all goes well.

Keep us posted.

[tiger angel]

6 years ago , soon after taking up this fitness thingy , I was classified with sub-clinical hyperthyroidism and they didn't even consider meds. I had the radio-active treatment immediately and my post 6 monthly blood tests were fine. However, about 3 years later my training took a real dive and after 6-9 months they realised I'd gone hypo even though the blood tests were in normal range. Now, after being on treatment for almost 2 years, I can say I'm finely feeling good.

Your thyroid can affect you in so many ways that you don't realise. Keep a good check on it as it is so good not to feel crap all the time.

[tdm]

Hi Runninguphill,

I have had a similar experience to Dizzey. I was diagnosed with Grave's 2 years ago, was prescribed Neomercazole (Carbimazole), and after frequent blood tests early on have settled into a routine of having a blood test every 3 months. No side effects from the Neomercazole - I'm on 5 x 5mg tabs per day. I feel like I am totally back to normal.
I'm hoping that the thyroid will eventually settle down and I'll be able to wean off the drugs, but apparently this gets less likely as time goes on.

Cheers,
Paul.

[runninguphill]

Thanks for your responses guys. It's reassuring to know there are others out there going through similar stuff. It's interesting that everyone's experiences and treatment have been quite different.
Just to clarify - I am now on a half a tablet per day and back to the doctor this week for results of the latest blood test. I haven't seen a specialist at all just the GP (who has other patients with Grave's). She suspected that I had coeliac disease too so I had a gastroscope and that's how they picked up the ulcers (I'm on a 3 month course of medication for them too).
I'm just frustrated that my energy levels are low at the moment and I have slowed down a lot with my running - struggling to run at what was an easy pace a few months ago.
I was surprised Dizzey that you have been on medication for 4 years as my GP feels that 12 months is long enough to know if it's going to go into remission and then is suggesting radioactive iodine.

[Dizzey]

runninguphill, on Jul 28 2008, 06:44 AM, said:

Thanks for your responses guys. It's reassuring to know there are others out there going through similar stuff. It's interesting that everyone's experiences and treatment have been quite different.
Just to clarify - I am now on a half a tablet per day and back to the doctor this week for results of the latest blood test. I haven't seen a specialist at all just the GP (who has other patients with Grave's). She suspected that I had coeliac disease too so I had a gastroscope and that's how they picked up the ulcers (I'm on a 3 month course of medication for them too).
I'm just frustrated that my energy levels are low at the moment and I have slowed down a lot with my running - struggling to run at what was an easy pace a few months ago.
I was surprised Dizzey that you have been on medication for 4 years as my GP feels that 12 months is long enough to know if it's going to go into remission and then is suggesting radioactive iodine.

Yeh, my sister was also recently diagnosed and she is on the meds too. She said that her GP told her exactly what yours has said. Next time I meet with my GP I will ask him about a "cahnge in strategy", it is just that I have quite a few other issues as well so the Graves is not always at the front of mind.

Good luck and I hope your energy levels pick up before too much longer!!

[runninguphill]

Thought I'd post an update if anyone's interested. I went back to the doctors today and my TSH was 2.4 - perfectly normal (and I've only been on half a tablet per day). So now I get to go totally off the medication and see if the Graves Disease comes back. I will get my blood tested in 3 weeks to see how it's going, unless I get the symptoms back before then. So fingers crossed!

[ican]

Great news, how's your energy?

[Dizzey]

runninguphill, on Jul 31 2008, 06:19 PM, said:

Thought I'd post an update if anyone's interested. I went back to the doctors today and my TSH was 2.4 - perfectly normal (and I've only been on half a tablet per day). So now I get to go totally off the medication and see if the Graves Disease comes back. I will get my blood tested in 3 weeks to see how it's going, unless I get the symptoms back before then. So fingers crossed!

That's great news runninguphill, I hope the symptoms don't return.

Keep us updated on your progress with - or moreso without - the Graves and also your energy levels!!

[Wheretonow]

runninguphill, on Jul 31 2008, 06:19 PM, said:

Thought I'd post an update if anyone's interested. I went back to the doctors today and my TSH was 2.4 - perfectly normal (and I've only been on half a tablet per day). So now I get to go totally off the medication and see if the Graves Disease comes back. I will get my blood tested in 3 weeks to see how it's going, unless I get the symptoms back before then. So fingers crossed!

Hi, Yeah me too and i really really hate that name 'graves' like we should be in a box. The blood bank won't let me donate either, That sucks. Seems like your doing good but don't be surprised if it comes back, Mine came back 4 times. Bear in mind that if you have radioactive iodine treatment you will still have to take hormone replacement tablets "for the rest of your life" whereas the neomercazole you only have to take to balance the problem then come off it again. I started on 3 twice a day then over a year or two (i can't really remember) got down to half a tablet a day then went off but kept with the monthly then 3 monthly tests so it was easy to catch when it came back, It got less and less as time went on. If you are finding it difficult to run then don't, Check your pulse before you exercise if it's 20BPM faster than normal then walk instead it's better for you and you are still exercising somewhat, Better than sitting on ones butt.

[Hypo2john]

Hi runninguphill

I sound like you are.Ive come across some very simple tests over the last 6 mth to test your own body to see how healthy you are .That may help you heal yourself.
I cannot believe how many people have replied to you and all they talk about is taking drugs & we are all supposed to be healthy runners.Drugs are poison they all have side effects .It blows me away.Do some research on the net.There are many natural healing products out there.

One is checking you ph of your body.Your boby is supposed to be at 7.4 alkaline to be healthy.Most people with sickness or diseases have an acidic body meaning the ph is under 6.5,which is not good. Most people who eat high protein diets have acidic bodies. Ask your doctor to test your ph levels.(If he will)Or do it yourself.You can buy ph paper from the chemist or health food shop.The strip of paper when wet with spit or urine changes colour and you match it up to a chart that comes with the paper.Most people dont know HOW IMPORTANT it is to have the body in an alkaline state.Your body is like a swimmimg pool when the alege & blackspot grow this means the there is not enough oxygen in the water & the water becomes acidic.This allows the funguses to grow .Same for the body.
I know you are a runner but somewhere along the line of fitness you have become badly dehydrated.Possibly not knowing it but usually dehydration leads to the start of most of our diseases.

Two.As I have just mentioned dehydration.MOST OF US ARE AND DONT KNOW IT..I just read a book 6 mths ago called YOUR BODYS MANY CRIES FOR WATER YOU ARE NOT SICK YOU ARE ONLY THIRSTY & has this had an affect on myself & many other people that I have told.Water is a marvellous substance.It is the lubricant of our who body .Without enough water the body becomes sick & dehydrated & cannot hold enough oxygen thus letting the funguses & disease to grow.Athletes need min 2-3 ltrs a day

Dehydration is the major cause of morning sickness,eczma,asthma,allergies,heartburn,arthritis and many many other sicknesses and even cancer.

You probably drink lots of water but there are 2 other very important things that can help you.

Salt.Good quality organic rock salt with all the 71 essential minerals our body needs.Salt is like a sponge to our body.It holds the water in the cells ,without enough salt you will dehydrate and people who suffer from cramps dont have enough salt.

The problem with the stomach ulcers can be also fixed quickly.Bicarb Soda ,yes the stuff you cook with,can neturalize the acidic effect in the stomach to help you heal faster.Bicarb is the stuff you put in your pool to alkaline the water.So this is the same as you body .You need bicarb soda to turn the body from acidic to alkaline.You need to take 1 teaspoon 3 time a day in a glass of water.Its that simple.A Dr told my son he had a faulty vaulve in his stomach.It turns out his stomach produces more acid than usual due to his diet.So we changed the diet a little & bicarb 3 time a day,ALL FIXED its that simple..
Im glad you are easing off the drugs.Its better for you in the long run as the side effects from them was your ulscers.Every DRUG HAS A SIDE EFFECT.Yours is ulscers .The bicarb will settle it all down.

Try and go back to when the disease started and think really hard about what may have caused this problem for you.There is always a cause.
Your healing process may take some time ,but you dont just take 1 pill from a full bottle ,do you.


Hope this info help you,as none of it can hurt you.Goodluck

Hypo2john

[runninguphill]

Thanks for the replies and advice. I'm fairly certain I haven't been dehydrated as I drink one coffee a day and then lots of water (at least 2 litres) and maybe a glass of wine or two once a week. I guess the reason that most of us take medication is because a doctor has advised us to. Graves Disease can be quite serious and, for me, was even starting to effect my personality (and therefore relationships) so I was g;ad to get it under control. However, I am really glad to be off the medication for now and I hope that I can stay off it. So far so good. As for my energy levels I still feel tired but maybe that could be due to a busy lifestyle, at times stressful job, etc. The doctor is checking my iron levels next time too which could also be the problem.

[undercover brother]

apologies to runninguphill.
i dont have much to add however there are several inaccuracies in H2Js post that i feel obliges to correct in case someoone actually believes some of what he says.
i would not want to see someone get harmed from reading advice on CR.

Hypo2john, on Aug 2 2008, 11:04 AM, said:

Drugs are poison they all have side effects .It blows me away.Do some research on the net.There are many natural healing products out there.
you display a clear lack of understanding of basic science here. everything is a poison. it just depends on how much of it you take. too much oxygen and too much water is harmful. doing research on the net can be useful however you need a bit of knowledge to also recongise the crap thats out there. yes there are many natural products out there sold by snake oil salesmen

One is checking you ph of your body.Your boby is supposed to be at 7.4 alkaline to be healthy.Most people with sickness or diseases have an acidic body meaning the ph is under 6.5,which is not good. Most people who eat high protein diets have acidic bodies. Ask your doctor to test your ph levels.(If he will)Or do it yourself.You can buy ph paper from the chemist or health food shop.The strip of paper when wet with spit or urine changes colour and you match it up to a chart that comes with the paper.Most people dont know HOW IMPORTANT it is to have the body in an alkaline state.Your body is like a swimmimg pool when the alege & blackspot grow this means the there is not enough oxygen in the water & the water becomes acidic.This allows the funguses to grow .Same for the body.
pishposh - tell me the evidence for this. for normal cellular function we need a ph in the range 7.35-7.45. a blood ph under 6.5 would be consistent with death. you then go on to talk about urine ph which is a completely different thing. our kidneys and lungs are very important in maintaining normal ph and any alkalemia (alkaline blood ph) is abnormal and our own bodies will try and correct this for us. funguses? swimming pool? give me a break.

I know you are a runner but somewhere along the line of fitness you have become badly dehydrated.Possibly not knowing it but usually dehydration leads to the start of most of our diseases.
....
Dehydration is the major cause of morning sickness,eczma,asthma,allergies,heartburn,arthritis and many many other sicknesses and even cancer.
rubbish. show me the evidence.

The problem with the stomach ulcers can be also fixed quickly.Bicarb Soda ,yes the stuff you cook with,can neturalize the acidic effect in the stomach to help you heal faster.Bicarb is the stuff you put in your pool to alkaline the water.So this is the same as you body .You need bicarb soda to turn the body from acidic to alkaline.You need to take 1 teaspoon 3 time a day in a glass of water.Its that simple.A Dr told my son he had a faulty vaulve in his stomach.It turns out his stomach produces more acid than usual due to his diet.So we changed the diet a little & bicarb 3 time a day,ALL FIXED its that simple..
Im glad you are easing off the drugs.Its better for you in the long run as the side effects from them was your ulscers.Every DRUG HAS A SIDE EFFECT.Yours is ulscers .The bicarb will settle it all down.
this is potentially dangerous advice. people can take some forms of alkali orally - eg. renal failure patients who take sodium bicarb tablets. alkalis are extremely caustic and basically burn. the stomach is used to an acidic environment its how it aids digestion. the most important cause of ulcers is a little bug called helicobacter pylori, but yes there is a role for reducing stomach acidity. this is not by taking alkali unless you live in the 19th century. we have modern day drugs that reduce gastric acid production that are much safer. i would be concerned from you advice that someone could take the wrong form of oral alkali and end up in hospital with several perforated ulcers. it also concerns me that you dont know how to spell the word ulcer but considering your advice not suprising. and youre right every drug has side-effects including 'natural' ones

Try and go back to when the disease started and think really hard about what may have caused this problem for you.There is always a cause.
correct and if you even had a basic science knoweldge you would be aware of the cause in graves disease - its an autoimmune condition whereby a molecule mimics the hormone TSH to foolt he thyroid gland into producing more hormone

Hope this info help you,as none of it can hurt you.
no it doesnt and yes it can

Hypo2john

Edited by undercover brother, 07 August 2008 - 08:55 AM.

[Hypo2john]

hi runninguphill

It appears that undercover broth as shot me down in flames . I dont want to start a verbal war with him.

But some peoples bodies cannot adjust their ph balance.I suffered from heartburn & used water to fix it(why use a DRUG) ,my sons problem speaks for its self & if undercover broth cares to look at www.mercola.com click on newsletter archives there is a 20min interview with an Oncologist Dr Tullio Simoncini in Rome who IS TREATING CANCER PATIENTS WITH BICARB SODA & says that CANCER IS A FUNGUS & HAVING GREAT RESULTS.He is a medical doctor.

As for my dehydration info you can buy books in Borders called YOUR BODYS MANY CRIES FOR WATER YOU ARE NOT SICK YOU ARE ONLY THIRSTY & THE ABC OF ASTHMA ALLERGIES & LUPUS which are by Dr Batman (another MEDICAL DOCTOR)with over 20 yrs of research .

I wonder if undercover broth will bother to have a look
I guess it just depends on what you believe in .

And by the way, sorry for my spelling mistake.Slip of the finger. BUGGER

Hypo2john

[undercover brother]

ok well i looked at the video and also at his website
what is overwhelming is all the talky talk and lack of evidence.
he says this and that without backing any of it up with any published data in peer-reviewed journals.
or any basic pathologically-based evidence.
as an educated, (i think) intelligent, open-minded person i will appraise things critically based on scientific merit.
and this has none.
cancers are white on ct scan and fungus is white?
so cancers are fungus?
give me a *&^%ing break.
he is either crazy, a complete imbecile or a snake-oil salesman.
take your pick.
i tried to check if he was in fact a certified doctor but google couldnt help me out there.
wouldnt matter anyway there are a few crazy ones out there he would make one more.
either way he is a dangerous man.

Edited by undercover brother, 07 August 2008 - 02:48 PM.

[ican]

Hypo2john

What you say may lead to a very interesting debate, which is fantastic. The danger here though is this thread talks of Graves disease, which does not lend itself to 'ifs' and 'buts'. You take the medication or have the surgery. It's that simple and I know because I did look for alternatives. THERE ARE NONE!!!

So please get educated before hijacking a thread or better still, start your own thread...I will be sure to read it.

[Hypo2john]

Hi ican

This could turn into an interesting debate & maybe I didnt look into graves disease deeply enough but I look at the body in a very simple way .You look after it and it stays healthy.
None of us want to get any type of disease but it happens & we say why me..Disease does not simply happen THERE HAS TO BE A CAUSE weather it toxins,pollution,high voltage wires who knows how things will effect us.We are all different and some cope better than others .
Lets face it most of our problems are man made and most of us are happy to accept this and not say or do anything about it.
Take asthma it is supposed to be incurable but I have help people with asthma using my mild hyperbaric oxygen chamber to boost the immune system, an infrared sauna to detox,increased water intake over a period of 1 mth from half a ltr a day to 2-3/day & a small amount of salt .The water & salt info I obtained from Dr Batmans books & 1 young girl in paticular has not used her puffer in 8 mths.As I said we are all different and some take longer than others but in this young girls case it took less than a month.She has had asthma all her life and at it worst ended up in hospital. She no longer has to use the chamber or sauna & just keeps her water & salt balance.She no longer has any asthma symptoms.
To me this was something I felt sure would releive people of asthma & it worked.


Hypo2john

[Fats]

Hypo2john - that's the best load of woo woo tripe I've heard in a while. Sadly such dreadful advice all too often leads to tragedies like this.

Runninguphill - my Mum's had the radiation therapy and is now on thyroxine tablets but super fit, running most days and climbing mountains (in her early 60s).

Edited by Fats, 08 August 2008 - 06:57 PM.

[Underdog]

Hi There

3 months ago I was diagnosed with hyperthyroidism. Medication has brought my levels down enough to almost feel normal again. However, I have terrible leg pain in both legs. I have tried light exercise but can barely run... can't seem to break a shuffle. I have discussed with my doctor and she says its all part of the symptoms.

Can I ask if others experienced similar pain and how long did it take till you were training again?

Edited by Underdog, 15 August 2008 - 10:11 AM.

[plu]

I am closing this thread for the time being. Concern has been expressed about the nature of some of the advice.

cheers Plu

[CoolRunning Admin]

We have decided to re-open the thread (lots of good discussion). However we have warned hypo John:

Quote

A few people have complained about your posts to CoolRunning where you are giving advise based on a business you own. You have declared this interest on some posts, but it would be better in your signature - which I have updated to the following :
"Note - financial interest in providing treatments with hyperbaric oxygen chamber."

This should be easier than having to declare it every time (and/or potentially forgetting).

Other readers should be aware of this bias.

[runninguphill]

I didn't realise that this thread was going to cause controversy. My original intention was to see if any other runners had Grave's and how they were dealing with it whilst running so that we could share our experiences.

By the way, I have been medication free for nearly 3 weeks now and so far so good. My running has slowed down but I am being kind to myself - did 14ks yesterday in an hour and 39 minutes (trying to make sure that my heart rate didn't go too high on the hills).

Underdog, on Aug 15 2008, 10:10 AM, said:

Hi There

3 months ago I was diagnosed with hyperthyroidism. Medication has brought my levels down enough to almost feel normal again. However, I have terrible leg pain in both legs. I have tried light exercise but can barely run... can't seem to break a shuffle. I have discussed with my doctor and she says its all part of the symptoms.

Can I ask if others experienced similar pain and how long did it take till you were training again?

Underdog I can't say that I ever noticed any symptoms in my legs, but the medication does take a while to have its full effect. Maybe stick to walking for a while and be kind to yourself.

RU

[Twopennys]

RU - wonderful news - nice run too

Cheers, 2P

[undercover brother]

nice to hear that RU.
dont worry about the controversy.
not uncommon on CR for threads to get tangential at times!

[runninguphill]

An update to let you know that I am still in remission. According to my doctor one in twenty go into spontaneous remission and I am her one in twenty. She was particularly impressed that my heart rate was in the 50s. Now that I have got the iron issues under control too I am feeling fit and healthy. So much so that I am even thinking about training for a marathon next year.

[ican]

You lucky thing runninguphill, that's awesome news.

Marathon, go for it. Keep us posted!

[run2work]

Way to go Runninguphill.

Good health is so easy to take for granted.

I hope too for a marathon for you!

r2w

[twosheds]

Hi,
My husbands family has a history of thyroid disorders- just the women as far as i know. so a genetic cause here- no dehydration. My sister in law has Graves disease- she became very unwell- grey looking and severe shaking until treated- then fine. However in time her thyroid went from over active to completely dead and she now needs daily thyroxine ( which is no big deal) but a bugger if not treated.
My daughter developed hashmioto's disease ( auto immune but under active thyroid) at 14. It caused a lot of problems for her but again now her treatment is right she is great. she is someone whose thyroxine levels need to be up near the top of the "normal" range to feel well. For a while they only had her down towards the bottom of this range and she was suffering emotionally as well as physically.
Just something to share.

Two sheds

[runninguphill]

HI Twosheds

I feel for your daughter, that must have been quite difficult. Glad to hear things are going well. The strange thing for me is that noone in my family had any thyroid disease, but my Mum who is 73 has been tested for it recently as she has had very sore wrists lately (seems like a weird connection but the specialist was very interested when she said that I had thyroid disease). She has been overweight for her whole adult life (her mother was very large too) whereas the rest of the family are normal (weight-wise anyway) so maybe underactive thyroid? She gets the results tomorrow and I will be very interested to hear what they say.

RU

[buzzlightyear]

My wife was diagnosed with Graves only 3 weeks ago. It was very much a relieve i say - It gave us (or me) an understanding to her sudden agitation and out burst and also her significant weight loss.
Like many others, we have been neomercazole. (Her t3 and t4 were 27 and 55 respectively) it's VERY high.
Being a runner like me and seeing my wife's fitness nose dive (she is an avid tennis player and swimmer) is very heart aching. Everyone's different in their response to treatment but i suppose she isn't considering the option of thyroidsectomy or iodine treatment.

But with us on longer term antithyroid agents, family planning is a set back for us...Some what disheartening.

Perhaps i will be a lot more understanding and not ask my wife to crew me for races.

Any advice to how a partner to someone with graves disease can do??

[runninguphill]

Hi Buzz

I have sent you a PM but thought I'd reply here too, particularly to your question as to how to partner someone with Graves. Fortunately for me my husband is very understanding, but was happy to have an explanation for my extreme irritability. It sounds like her levels are pretty high (I don't actually know what mine were but I don't think they were as high). It takes a while (4-6 weeks) for the TSH to get out of your body once you start taking the neomercazole, then of course it's a matter of trying to get the dosage right. I would definitely not consider any of the more permanent solutions until she has given the medication a go (it worked for me and I have now been off it for 3 months).

Just out of interest I was also diagnosed with coeliac disease form a blood test and went on a gluten free diet for a year (whilst waiting to get into the specialist). It turns out that I don't have it but I wonder if the gluten free diet mat have helped in some way - I eat it again now but try to minimise my intake.

The other problem I have had is anemia. How are your wife's iron levels (I did read on the net about a connection but don't really know if there is one, however they do share some similar symptoms particularly in relation to heart rate).

Hang in there. It will get better soon.

RU

[Dizzey]

runninguphill, on Nov 5 2008, 06:53 AM, said:

Hi Buzz

I have sent you a PM but thought I'd reply here too, particularly to your question as to how to partner someone with Graves. Fortunately for me my husband is very understanding, but was happy to have an explanation for my extreme irritability. It sounds like her levels are pretty high (I don't actually know what mine were but I don't think they were as high). It takes a while (4-6 weeks) for the TSH to get out of your body once you start taking the neomercazole, then of course it's a matter of trying to get the dosage right. I would definitely not consider any of the more permanent solutions until she has given the medication a go (it worked for me and I have now been off it for 3 months).

Just out of interest I was also diagnosed with coeliac disease form a blood test and went on a gluten free diet for a year (whilst waiting to get into the specialist). It turns out that I don't have it but I wonder if the gluten free diet mat have helped in some way - I eat it again now but try to minimise my intake.

The other problem I have had is anemia. How are your wife's iron levels (I did read on the net about a connection but don't really know if there is one, however they do share some similar symptoms particularly in relation to heart rate).

Hang in there. It will get better soon.

RU

Hey RUH,

SNAP!!

I was diagnosed with anemia, I still have to take an iron tablet daily and it was 8 years ago that my anemia was severe. It was so severe that the GP tried a few things to identify he underlying cause which ended up with agastroscopy and coelic diagnosis, so no gluten for me!! Then a couple of years after that it was the Graves. So "one with the lot" as they say!!

I take a half neomercazole daily to keep the Graves symptoms at bay and still have 6 monthly blood tests, more regularly if the symptons return, to ensure everything is kept under control.

Fantastic news for you being off the meds for 3 months now and no return of the symptoms. I hope the good news continues for you!!

Take care

[runninguphill]

Just thought I'd bump this one up and see how everyone is going.

As for me ... I had been in remission for about 9 months until about 2 weeks ago. I have suddenly lost a couple of kilos, my heart rate is up and I'm barely sleeping at night. I go back to the doctors next week for the official diagnosis.

She had previously told me that I would probably have to have the radioactive iodine but I'm really not keen.

[ican]

Hi there again RU

Sound like the classic symptoms for hyperactivity. Hope it's temporary.

Just to let you know I had the radioactive idione and the thought of it scared me (you think they could make it sound a bit nicer). I also remember the administration of it was easy enough but it was surrounded with protocol and I couldn't go directly near anyone for 24 hours. But that was 9 years, 3 babies, 5 half marathons and 1 marathon ago so my quality of life has improved immensely not to mention my mood swings.

See how your levels are and talk to your doctor. Good luck.

[Dizzey]

My Graeves has returned also RUH, about 8 weeks ago, and I'm struggling to get it under control with the tablets. I'm currently taking about 6 per day and I'm due for a blood test torrow so we will see how the results are. I'm picking they won't be that flash by the way I have been feeling of late!!

I hope your results are OK and that you get the whole thing under control soon!! Take care.

[buzzlightyear]

HI Dizzey, ican, and RUH

Thank you for your update. My Mrs was diagnosed with Graves late last year (just when we were about to start a family) - I wrote on this thread too.

since then, our Endocrin has been 'persuading' us to take on thesurgery option but my wife is not too keen to be on medication for teh rest of her life.

SHe is a really good tennis player and this really discourage her motivation to come back (she is still weakish!)

Her TSH is back up again (Naughty her she missed the NeoMac quite often)

As females, If you have any tips for me to pass onto my Mrs that would be awesome!

Any additional thoughts comments welcome too...

Edited by buzzlightyear, 17 June 2009 - 04:45 PM.

[runninguphill]

Nice to hear where you're all up to.

Ican - it's good to know that the radioactive iodine isn't as scary as it sounds.

Dizzey - I'm sorry to hear that things aren't going so well for you.

Buzz - I'd think that the surgery option would be enough to encourage regular medication-taking! I know that it was hard to get into the habit of pill taking (but strangely it was also hard to 'unremember' when I stopped). I was able to enjoy 9 months of remission (no drugs) after a year and a bit of the meds.


A couple of strange observations I've noticed recently: my heart rate which is higher than normal at the moment really races when I am at all nervous. This has included watching my kids perform in a music competition and having to speak in front of a large group today (something that usually doesn't faze me too much). I can really feel it pounding along. I'm also finding it hard to regulate my body temperature - I go from quite cold to really warm at times.

I must admit that I have still been running (only twice) since noticing that my levels seem to be up again. I kept my eye on the heart rate monitor and made sure that I walked when it got over 175. Is this a good idea or should I stick to walking for now? I don't really like to stop because I always worry that I won't start again.

RU

[Nicxx]

Hi,

I am new to the site, so forgive me for coming into this conversation rather late. The discussion caught my eye because I also have Grave's, which was diagnosed in April last year. I have only just started to feel confident enough to get back into some fitness. Ironically I was diagnosed during a period when I was probably at my fittest - I hadn't had a day off sick for over a year and was exercising four days a week and had developed a real love for running.

I have been doing some research and there seems to be quite a bit of advice coming out of the US about the benefits of particular foods for sufferers of Graves and yet my specialist has mentioned nothing about attempting to complement the medication with a particular diet or supplements.

I'd be really interested to know if any fellow suffers have had nutritional advice?

Runninguphill, watching your heart rate I feel is essential especially if you're having a reoccurrence - my fingers are crossed for you.

[runninguphill]

HI Nicx

Sorry this reply has taken a while - I have been away and haven't checked in here for a while. It's interesting that you say that your Graves occurred when you were at your fittest and had had no sick days - my experience was pretty similar. Definitely the fittest I had ever been (in my adult life anyway) and hardly ever sick. So how come I got an autoimmune disease I wondered, when my immune system seemed so good.

I read a book by Sandra Cabot on thyroid and she suggests a gluten free and dairy free detox for 6 weeks. After reading this I was diagnosed coeliac (on the basis of a blood test) and went on a gluten free diet. I am pretty certain that the gluten free diet (which I followed for about a year) really helped me to achieve remission. Then I finally had the endoscopy (the definitive test for coeliac) and it came back negative, although I had a stomach ulcer (maybe due to the neomercazole).

As they were repeating the endoscopy a few weeks ago - a year after the initial test (and I always suspected that the first test may not have been accurate as I had only eaten gluten for about 10 days prior to the test) I started to consume more gluten over the past few months. I'm not sure if there was a connection between this and the recurrence of the Graves.

My sister in law is a doctor and she says that she has been to presentations given by specialists in the area of thyroid and autoimmune diseases where they claim a strong link between gluten and autoimmune diseases such as Graves (to the point where they only serve gluten free foods at these presentations).

So, I am back on a gluten free diet this week (still awaiting the results of the tests - ah the joys of being a public patient) and am also taking a lactoferrin supplement (as well as the medication). I see an endocrinologist this week and I am going to tell him that I want to give the medication another go (rather than the radioactive iodine which is a permanent solution to an autoimmune disease - will it make the autoimmune disease go away or just destroy my thyroid?).

Sorry for this long and rambling post - hope it has been useful. I would be interested to know if you have come across any good info on the net. There is a good site elaine-moore.com (sorry don't know how to create a link) which talks about alternate methods (combined with medication) such as nutrition.

As for running (this is a running website after all) - I have been doing none. I think that when you're struggling to keep your heart rate down deliberately raising it is probably counter-productive. The medication seems to be working now so I am thinking about having a quick, slow run this morning using the heart rate monitor and walking when necessary. I'm worried my body might have forgotten how to run!

Cheers
RU

[sarahlovesmath]

Hi there. My doctor and I are pretty sure I have Graves disease, though we are still waiting for the final blood test to come back. My blood tests have shown that I definitely have hyperthyroidism, and the tests for other thyroid disease have come back negative. To add this there are 7 people in my family history with thyroid problems, and 4 of those including my father have/had Graves disease. I think I have had the disease for a long time, and a lot of my symptoms (Anxiety, nervousness, dizziness, hair loss, insomnia, irritability, confusion, heart palpitations, high heart rate) my doctors and I assumed were caused by stress (I recently finished a very competitive academic program at a prestigious university, I was under a lot of stress there).
I went to the doctor because I started having sudden chest pain while running. When exercising I always noticed my heart rate was a lot higher than my aerobics instructor said it should be. I just assumed this was because I was never in very good shape, and would try to exert less.
My sister who is a nurse, recommended I have my thyroid checked because I have a lot trouble losing weight, and she thought I was hyo, instead of hyper.
I am not a strong runner (though I am always working on it), and it has taken me a long time (1 year) to be able to run as far as 5K. I have never been athletic, or good at sports. Perhaps this is due to the Graves disease? I am excited about treatment, maybe it will improve my slow progress running, but It looks like I should probably watch out for stomach ulcers. I run very slowly and try to focus on building endurance rather than speed. When I begin a run I am really tempted to speed things up (probably my high heart rate speaking) but if I go moderately fast, I burn out within half a mile. I run very slowly, and focus on distance, while other runners pass me by. I don't care. I find that long, slow exercise at a lower heart rate makes me happier than higher endurance stuff. Once a week (Saturdays) I go about 8K, running in half mile intervals, walking a quarter mile, running half a mile, as far I can go. I keep increasing the distance, and it makes my Monday and Wednesday Runs go a little further. One day I plan on running a marathon, though I will probably have a pretty high time, at this point it's about building endurance, not speed for me.
My doctor has prescribed me what she calls a "beta-blocker," its lowered my heart rate enough where I don't have heart palpitations while running. The problem is I have naturally low blood pressure, and the medication lowers it even more. I have to monitor my blood pressure to keep it from getting to low.
I realized the Graves disease has made me very dehydrated, and it's recommended I stay hydrated to keep my blood pressure from being to low, so Every day I drink about 3 litters of water slowly while commuting to work on the subway train. This has improved my running.

Strangely, I have a lot of trouble losing wight. I run about 15 miles a week, and walk an additional 8 miles per week, and have a low fat/high fiber diet, but I can't seem to get below 175 lb. My weight is usually 180 LBs, but if I take a week off from running I'm back up to 180lb and can't get down to 175 for another 3 months (that's how long it takes me to lose 5 lb). I eat about 8 servings of fruits and vegetables a day and eat sweets in sever moderation (I eat one doughnut once ever 16 months, one piece of cake at most every 3 months, for fat I only use canola or olive oil or butter, rarely butter, never anything hydrogenated or other fats). It's frustrating to me, I watched my sister eat 3 boxes of cookies with her husband one night, (something my weight will no allow, I'll ballon up again) and she is at least 50lb lighter than me. I'm hoping that the Graves might be linked to that, and that my weight will improve with treatment. Or perhaps once I can run about 10K or higher maybe I will lose weight. Whatever going on, it's easy for me to gain, and difficult to lose.

I found this website,

http://autoimmunedisease.suite101.com/arti...isease_symptoms

of rare graves disease symptoms, and weight gain is among the symptoms. Also are skin problems, which makes sense to me since I have a lot so skin problems. Does anyone else out there have trouble losing weight with thyroid problems? Will this eventually go away as I increase my running?
Either way, I like running further a lower intensity for longer periods of time, and hopefully soon I'll be at 10K.

[tdm]

To all with Grave's Disease/hyperthyroidism:
I was diagnosed 5 years ago and have been on Neomercazole (Carbimazole) since then. Lately my endocrinologist has been nudging me towards taking one of the more permanent treatments - radioactive iodine or surgery. I see that CoolRunner 'ican' has had the radioactive iodine and reports no issues.
I'm thinking that out of the two options, I would choose the radioactive iodine over the surgery.
Can anyone else provide feedback from their own experience or that of someone close?

[Olza]

Hi all

I was diagnosed with hyperthyroidism from Graves disease in June this year, with T3 and T4 of 29 and 73 respectively, so quite high. It was a relief to finally get a reason for all my symptoms which I had been dismissing as tired, stressed, deydrated etc but the 4 weeks it took for the neo mercazole to kick in were horrible - my resting heart rate was over 120bpm so I was confined to the couch for fear of my heart getting out of control. It was under control within about 2 months, then reappeared briefly in October when the medication was dropped too quickly back up to a T4 of 52, and is now back under control thanks to seeing a specialist who has taken a no nonsense approach with the NeoMerc.

My specialist is in favour of controlling it via medication so that is what I am aiming for. I can't wait to be down to minimal tablets a day and not have to worry about it. I have started exercising again now and am up to week 4 of c25k and feeling good for the first time since January!

I would love to hear others experiences who stuck to the medication approach and how it is going, whether it worked or not?

tdm my specialist explained to me there is a risk of taking out additional nodules present in the neck with the thyroid in surgery, especially with the absence of a large goiter that defines the area, that control vitamin D and calcium processing which is why the iodine is sometimes preferred. This put me off surgery a bit.

[tdm]

Olza, on Dec 28 2010, 12:56 PM, said:

tdm my specialist explained to me there is a risk of taking out additional nodules present in the neck with the thyroid in surgery, especially with the absence of a large goiter that defines the area, that control vitamin D and calcium processing which is why the iodine is sometimes preferred. This put me off surgery a bit.

Thanks Olza. Yeah, I've been informed of the various pros and cons. Right now, as an alternative to an irreversible procedure, I'm actually going to go for some treatment from a naturopath, with the blessing of my endocrinologist. We are both keen to see if it works. If it does I'll let you know.

Olza, on Dec 28 2010, 12:56 PM, said:

I would love to hear others experiences who stuck to the medication approach and how it is going, whether it worked or not?

As I mentioned I've been on Neomercazole (Carbimazole) for 5 years with no side effects. However I've recently had a low red blood cell count (anaemia), which has not been directly attributed to the drug, but the question mark is hanging there. Which is why I'm being asked to consider other permanent options.

[fangster]

Hi All,

I know its been a long time since the last post so I'm not sure if anyone is still keeping with the thread. (fingers crossed)

I was formally diagnosed by my endocrinologist today to have Graves. I had my first course of medication tonite and is desperately researching for more info. My readings are extremely high and higher than any of the ones disclosed in this thread. My endocrinologist recommended me to try the medication first before considering alternatives. I am having 3 tablets of NeoMercazole twice a day. It sounded as if it would be a 2 month course to reduce the thyroid levels, then a 6 to 12 month course at a reduce dose to maintain it.

So I have two concers:

1. I have to leave the country in 2 months to work in Malaysia for 2 yrs. I've never lived in tropical climate and not sure how I will cope. I have read various blogs about graves, some is that you cannot stand cold, but others cannot stand humid. Which is it...? What do you guys think? and what's happened since?
2. Im getting married soon and really want to consider children in 2 yrs time. Whats the best course of action to ensure the baby is as healthy as it can be? I don't have a prefer method of cure if it can ensure that my baby will be ok.. any thoughts on this will be much appreciated!

[tdm]

Hi fangster,

Coming up to 5 years for me. Started on 5-6 Neomercazole per day, got the symptoms under control and have been on 3 per day since. Have felt completely normal since getting on top of it with the medication.
Re: your questions -
1. I've had no particular issues with temperature. Don't like cold or humid, but I reckon no more than anybody else!
2. I would discuss pregnancy in detail with your Endocrinologist. Seems others on the thread have had no problems.
Hope it all goes well for you.

[buzzlightyear]

HI Frangster...

Your predicament sounds also similiar...

If I can answer your questions with number 2 first

Me Mrs was diagnosed with Graves and Started off with NeoMerc as well (2007) A year later we decided we wanted to try for a family.
If you have been informed bout NeoMerc, it does not have a detailed safety profile for fetus and has been reported to have cross the placenta.
After a brief wash out period, she is now on PTU (propylthiouracil) which has a good safety profile (i.e. We can have family and she can be on PTU - SWEET) are not known to do so) However, do consult your Endo for more info.


My wife doesn't feel any difference in terms on weather, much similar to TDM. Do note however, it will take your lungs a longer time to warm up to a more humid condition. And naturally, weather here and South East Asia is very different. Running Out door in Malaysia (or Specifically in Kuala Lumpur) is not the most common thing Blood thinning drugs (for cardio vascular condition or high BP condition) are known to cause users to have a lesser tolerance to cold. PTU or NeoMerc (or the drugs controlling the TSH - There are still running groups and HashHarriers (but of course)

Oh yes, Our two cents, ONLY consider surgery as the last resort to resolve Graves. A regular check up is the way to go. And monitor your resting HR!

Stay well

[liferunner]

It's great to find a support group on hyperthyroidism and running here.

I am located in Sydney, have been running ( plodding) every day between 1.5 - 2 hours most days for the last 15 years and wondered if anyone has got any research if long distance running can cause and aggravate hyperthyroid activity?

I found this group when I googled "can running cause hyperthyroidism?" and wanted to check the side effects of neomercazole before going ona course.

Can anyone advise re using natural approaches instead of using drugs?

Thanks!