# Experience with Hyperthyroidism / Grave's disease / Morbus Basedow?



## quite.right (Sep 29, 2016)

Hi gyus,
I was close to a collapse, went to hospital and the diagnosis is Hyperthyroidism / Grave's disease / Morbus Basedow.
I have to take some antithyroid drugs and Betablocker now.
I lost nearly 10kg of bodyweight since the christmas day, feeling weak now. All my muscles are gone  And I suffer from muscle pain.

Has anyone experiences with this sh**? I fear the side effects of the drugs and the switch to a underactive thyroid. To bring my weight back I drink a lot of weight gainer shakes.

How long it will take to get back on bike and be able to go uphill?

Thanx for any hints,
Chris


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## Le Duke (Mar 23, 2009)

EF-Education First road pro Alex Howes has Graves Disease. 

He found out last year. Like you, he lost a massive amount of weight very quickly. He’s talked about it on a couple of different podcasts I listen to. Sounds like both sides of his family have it. 

Managing it with finely tuned meds, which is apparently quite hard to dial in. Seems he’s doing much better now. Racing a big race down in Colombia right now. 


Sent from my iPhone using Tapatalk


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## Uwibami (Apr 26, 2017)

Sorry to hear this, I went through this as well about 30 years ago. I was a body builder at the time and went on a no carb diet and it seemed to kick start the whole thing. After about 2 years of this drug and that drug, mine reversed and the weight came back with a vengeance. But, so did my strength. So now I have to weight train eat smaller portions and ride my bike to keep the weight off. So, it's not so bad and I can at least function on a normal level. I will say that was a good while back and they have probably come a long way since then so, keep your chin up. If I can be of help to you with questions or anything, just shoot me a PM. Good luck.


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## Radium (Jan 11, 2019)

You can used to the beta blockers, but they will limit your max heart rate. The anti-thyroid drugs, I dunno. 
There should be some PT's in your area who can help you with the strength loss/muscle pain issue. Also, an experienced acupuncturist/herbalist might be able to do you a lot of good. Most insurance companies cover acupuncture these days, more or less.


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## tex22 (Dec 15, 2012)

Google for Jill Homer's blog, an ultra endurance athlete who after a few years of problems was diagnosed with that.

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## quite.right (Sep 29, 2016)

Thanx guys. The blogs tell what I fear. It seems to be a long road to go 
Any positive hints?
Tomorrow i will go for a flip on my road bike. Pure desperation....


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## jcd46 (Jul 25, 2012)

quite.right said:


> Thanx guys. The blogs tell what I fear. It seems to be a long road to go
> Any positive hints?
> Tomorrow i will go for a flip on my road bike. Pure desperation....


I was diagnosed in my 30s with Hyperthyroidism. I take 10mg daily of tapazole.

After I started riding, it actually brought my thyroid to a balanced level after years of not being able to. I do have a hard time gaining weight, and can lose it very quickly. I got the flu in November, lost 20lbs.

Good luck, be good with your meds, sleep well. Its Ok to eat a lot! 

Edit: I'm 53.


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## quite.right (Sep 29, 2016)

I'm back on bike 
But far away from being well balanced with my meds. But it is light again... and more bodyweight than desired.


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## Cuyuna (May 14, 2017)

Radioactive iodine vs total thyroidectomy is where I'd be heading.


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## jcd46 (Jul 25, 2012)

Cuyuna said:


> Radioactive iodine vs total thyroidectomy is where I'd be heading.


That's what one specialist told me. That continues to require meds for life right?


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## Cuyuna (May 14, 2017)

Yep. Typically one tab of levothyroxin in the morning, every day, for the rest of your life. As opposed to a lifetime of combination meds that are hard to regulate and have potentially dangerous side effects that will only control the _symptoms_ of hyperthyroidism. It's generally easier to regulate thyroid hormone and cure the problem than manage combination meds that just control the symptoms and don't address the disease itself. Levothyroxine is a very benign drug especially compared to methimizole or propylthiouracil, and for any kind of athlete, beta blockers to cap heart rate can be problematic.

I presume they did an ultrasound or similar imaging of your thyroid to make sure there's no dangerous nodules lurking around in the gland? And that the thyroid gland isn't so large that it's compromising your airway?

And you need to ask your doctor whether or not he/she thinks that the anti-thyroid meds will control the eye symptoms (exophthalmos) that commonly go along with Graves' Disease and are likely to be progressive, or whether adding steroids is adviseable.


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## quite.right (Sep 29, 2016)

I'm new to this Thyroid thing = 5 weeks. The endocrinologist told me to take the Antistatika for at least 6-12 month then decrease the dosage and wait what will happen. The rezidive rate is 37-60% 


Cuyuna said:


> Radioactive iodine vs total thyroidectomy is where I'd be heading.


This is thought to come after the possible relapse. I would prefer the Radioactive Iodine Therapy as early as possible. But I have a lot of hot nodules in the gland. Any experiences with that?

I dumped the Betablocker because I felt like crying all the time and was close to suffer from depression. Evil stuff 
Have to care about the pressure behind the eyes. Seems like the beginnig of the Exophtalmus but w/out any ghost images yet.

@jcd46 - any side effects from 20 years of tapazole?


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## Cuyuna (May 14, 2017)

Multiple hot nodules, possible early exophthalmos, can't tolerate beta blocker, 20 lb weight loss, weak, muscle pain, loss of muscle mass....

I would definitely get a second and maybe third opinion regarding your treatment options.


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## quite.right (Sep 29, 2016)

@Cuyuna - are you affected by Hyperthyroidism?



> 20 lb weight loss, weak, muscle pain, loss of muscle mass


these are well known side affects of thyroid intoxication, exophthalmos is a consequence.



> can't tolerate beta blocker


I'm addicted to Dopamin. That makes my well-being.

On monday is planned my second meeting with another specialist. We will talk about my latest blood values and hopefully the next steps.

What about nutrition during Hyperthyroidism?
Acording to the general recommendations I try to avoid any kind of seafish, dairy, eggs, rye bread, chicken, innards and raw meat, nuts and carots. There is no much rest to eat for a sportsman  Coffee is absolute evil.
Any expiriences here with nutrition? Guys, what are you eating?


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## Cuyuna (May 14, 2017)

quite.right said:


> @Cuyuna - are you affected by Hyperthyroidism?


Yes...Insofar as I've done hundreds of thyroidectomies, and Graves' Disease is one of the reasons.

Personally, I'm markedly hypothyroid and take levothyroxine every day.



quite.right said:


> these are well known side affects of thyroid intoxication, exophthalmos is a consequence.


Yes...I'm aware. Your ability to control those side effects and obviate the consequence of exophthalmos using medication alone is the question you need your doctors to help answer. Managing the symptoms vs treating the disease.


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## jcd46 (Jul 25, 2012)

OP, sorry for the late reply.

No side effects, so far that I can tell, I've been on Tapazole for a while now at 10mg, getting blood work twice a year. I started at 20 I think.

I'm hyper so as far nutrition, I eat almost anything. Cutting soda completely off has been a struggle but I've cut down a lot!

I try to snack on fruits and nuts instead of chips, and I'm giving up energy bars. I'm always hungry though.


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## quite.right (Sep 29, 2016)

Cuyuna - are you butcher? .... just kidding. Nice to have a specialist here.
Today I switched to another doctor. And ask her all the stuff I want to know and what you told me 
The values of fT3 and fT4 are close to normal range now. For the next four weeks we will continue the treatment and then we will discuss the next steps. An early Radio Iod Therapy is an option. In the meantime my Anemia has to be examined. May be there is a connection.
How long your Hyperthyroid patients are treated before they come to you for thyroidectomy?

jcd46 - always hungry... thats hard. I was faced with this my whole life and it stopped some weeks ago caused by the Thyreostatika. Hope this will last for the rest of my life. May be you are undermedicated? But good you give up some unnecessary junk food. Nutrition is key (for me).


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## Cuyuna (May 14, 2017)

quite.right said:


> How long your Hyperthyroid patients are treated before they come to you for thyroidectomy?


Weeks up to about a year.


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## GChuckyB (Oct 25, 2017)

Deleted.


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## slomtbr (Oct 9, 2010)

Diagnosed with Grave's Disease in my early 40's - 1 year of varying amounts of tapazole, never got my levels steady, and my strength and endurance were gone.
I went the radioactive iodine route. A couple years of levothyroxine got my levels steady, and I began to regain my strength and endurance, but I never felt quite right. I'm now on old-fashioned Armor Thyroid, and have been for well over 10 years. I feel like I never had Grave's, I'm stronger than ever, it's just very difficult to lose weight.


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## quite.right (Sep 29, 2016)

Thank you guys. Your reports are highly appreciated.
@GChuckyB - I know very well the described demeanor and misfeelings  Fine that it have disappeared. I don't miss it in my life.
Fortunately I'm kind of stable just now! *yeah. But only when I take 30mg of Carbimazol (pro-drug for HyperT) and have 3-4 exercise sessions per week. If I cancel the exercises the lift goes downward directly into Hypothyroidism. If I do heavy and long bike exercises the lift goes the other way - I burn internally. Weird life 
My Anamia seems to be gone.
At the moment i do lifting weights with a training plan three times a week. Thats the first time in my life I'm able to do this longer than one week. I build muscles, recover very well and feel like... Superman  For sure I would like to keep this. So going the radioactive iodine route it's not the option for now ("don't touch").

I found a publication about levels of hormons like Serotonin, Testesterone and Dopamin linked to levels of fT3 and fT4 of the Thyroid Gland. So I've been trying 5-HTP (preliminary stage of Serotonin) and feeling very fine: relaxed but strong. I also take ginger powder and other herbals to balance the glands. Seems to work 

@slomtbr - body weight is a matter also to me. Will try to diet it down.

Guys, is your thyroid gland still working somehow after radioactive iodine therapy or quite "out of work"? I have to discuss this with my doctor nevertheless...


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