Overactive Thyroid Graves Part 4

Hi Ann. First of all I don't think you're bonkers. If you feel you have nothing to lose and want to go down the diet route then you're right to give it a go.

I think it's important to consider that Graves can go into remission. When someone has been on treatment, decides to change their diet and then goes into remission how do they know it's the change in diet that's responsible, and not the treatment they've been on?I had a short course of carbimazole when I first started with Graves and was in remission for forty years.

I wouldn't fancy trying the 60 day juice fast. It would probably be a case of the auto immune disease has gone, but she's died of starvation.

If you don't mind me asking which supplements has the nutritionist put you on?

I hope your arthritis settles down and going down the diet route works for you.

Marigold.xxxx

Thinking of everyone.

Hello Acd,

You're definitely not bonkers, nor are you the only one thinking along those lines. I myself have refused RAI and will also try the nutrition route before I ever take RAI. At the moment I have no choice and am on 'block & replace' but after that I will try it by diet. I've also read about those two doctors who had Graves and brought their illness under control. Think they cut wheat and airy out for starters? Yes, it will definitely be more hard work than taking RAI, but for me that gives me more peace of mind.

I do hope you'll do well on it and do keep us updated.

Take care,

Stefania

I agree with glynisrose. Endos say a lot of things and not all of them are true or what's best for patients. There is a whole movement of thyroid patients who want endos to start prescribing T3/T4 combination thyroid replacement or T3 alone.

I was told by a psychopharmacologist that T3 converts to T4 in the body but not the other way around. He should know, that's his specialty, the study of drugs and how they interact in the body.

Hi all, new to this post. I have hyperthyroidism with underlying graves disease and have been unstable now for 2 years. My last results were tsh <0.01 and t4 17 im on carbimazole at the moment. i was taking propranolol and also citalopram as was getting alot of chest pains and also mood was very up and down from bouncing off wall a to wanting to through myself under bus. i have started 'reiki' which has managed to allow me to come off propranolol and citalopram which is great. my endo says my tsh levels have been like that for last year. so if referring me to hospital to discuss rai. what do others think. those who have had rai did u have any side effects. i'm so worried as i'm a single mum of 2 young children x and="" t4="" 17="" im="" on="" carbimazole="" at="" the="" moment.="" i="" was="" taking="" propranolol="" and="" also="" citalopram="" as="" was="" getting="" alot="" of="" chest="" pains="" and="" also="" mood="" was="" very="" up="" and="" down="" from="" bouncing="" off="" wall="" a="" to="" wanting="" to="" through="" myself="" under="" bus.="" i="" have="" started="" 'reiki'="" which="" has="" managed="" to="" allow="" me="" to="" come="" off="" propranolol="" and="" citalopram="" which="" is="" great.="" my="" endo="" says="" my="" tsh="" levels="" have="" been="" like="" that="" for="" last="" year.="" so="" if="" referring="" me="" to="" hospital="" to="" discuss="" rai.="" what="" do="" others="" think.="" those="" who="" have="" had="" rai="" did="" u="" have="" any="" side="" effects.="" i'm="" so="" worried="" as="" i'm="" a="" single="" mum="" of="" 2="" young="" children="">

Hello everyone good to see this forum thread is kept

Going.

I am not feeling to bad at the moment, still on 50 mg of thyroxine.

My recent blood result showed a tsh of 5.2 and a ft4 of 16.9

My tsh levels have declined from being around 3 last summer and i did feel more tired but my body has adjusted to it.

Hope you are all doing ok ?

Hi Barry. Good to hear from you. Glad you're doing ok.I haven't had my bloods checked since July. I feel ok, and my weight's steady so I think I'm in the normal range. I lose weight very quickly if I go hyper. I'm not sleeping very well at the moment, can't seem to switch off. I hope it's a passing phase.

Keep in touch.

Marigold.

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

Hello Everyone,

I'm fairly new to this site. Was participating in another discussion and then found this one. It's a great forum to connect with others going through similar challenges. I need to vent a bit and then get your suggestions if you have them.

I am taking methimazole (tapazole) for overactive thyroid (no Graves). I'm seeing a D.O. at a clinic that supposedly specializes in hormonal issues. But not really satisfied. I really believe there is a supplement, or SOMETHING that will heal my thyroid! Every doctor mentions "burning out the thyroid" like that is the ONLY option (via invasive or non-invasive means). Then we have a good chance of actually becoming hypo...or maybe we MUST become hypo?? - and then be on synthroid the rest of our lives? I am just having a really hard time believing all that. The drug companies probably love that they have lifetime customers!

It's a complex issue for sure. Even my "so-called" alternative D.O. didn't recommend carnitine for muscle weakness/fatigue, which I experience to the extreme sometimes and can hardly walk. A very helpful person on this forum told me about it (and I do lots of research/reading and never came across that info...now I have found several articles on the internet so I can educate myself).

Hux...obviously going to the gym is not a good thing to do! I tried several months ago to force myself into working out more (in my "previous life" before my thyroid issue I was VERY active!) and it just made me feel worse. It sounds like your body had an EXTREME reaction to the stress. Be careful! You've heard of the "thyroid storm?"

From the internet:

Thyroid storm (thyroid crisis) is a potentially life-threatening condition for people who have hyperthyroidism. Thyroid storm happens when your thyroid gland suddenly releases large amounts of thyroid hormone in a short period of time. If you have thyroid storm, you will need emergency medical treatment.

Thyroid storm is more likely to develop when a person has a serious health problem in addition to hyperthyroidism or in people who have untreated or undertreated Graves' disease. The problem usually happens after a stressful event or a serious illness, such as a major infection. It may also be triggered by surgery or by using iodine for a CT scan or in radioactive iodine therapy.

Symptoms include:

-Feeling extremely irritable or grumpy.

-High systolic blood pressure, low diastolic blood pressure, and fast heartbeat.

-Nausea, vomiting, or diarrhea.

-High fever.

-Shock and delirium.

-Feeling confused.

-Feeling sleepy.

-Yellow skin or eyes.

-Symptoms of heart failure, such as breathing problems or feeling very tired.

I READ THAT THYROID STORM IS *LETHAL* TO 50% (HALF!!!) WHO EXPERIENCE IT!

THIS IS SERIOUS STUFF!

I also met in person an M.D. who then studied alternative healing who said that rest, meditation, and a stress-free life is what helps us to heal hyperthyroidism. So I don't exercise now (my legs won't let me, regardless!). I get very weak and have heart palpitations. Most advice "out there" is to exert ourselves and push harder. This M.D. says that he disagrees with that approach. He also believes that there can be lots of different causes of hyperthyroidism, such as heavy metal toxicity, and believes strongly in hair analysis, which gives LOTS of detailed information about our bodies. I would like to do that at some point, but haven't had the money.

For me, personally, the muscle fatigue/weakness, heart palpitations (feels like anxiety attacks!) and the depression/edginess has been very debilitating and my quality of life has diminished significantly. My recent blood test showed me in the normal range, but I still feel awful. Does anyone have suggestions to relieve these symptoms, even if it isn't directly healing my thyroid? I just started taking the acetyl-L-carnitine two days ago, so not sure yet if it's helping.

I know this process could take several months, maybe more, and I'm trying to stay positive that one day I will heal and be back to my old self again.

THANK YOU EVERYONE!

Hi Veronica,

What triggered my Graves disease was stress at work, i.e. a very abusive co-worker with an absent boss so dealing with it took a long time and the abuse continued for a long time. So strategies to reduce stress are very important. Things like Mindfulness (which is a specific type of meditation), the Sedona Method (similar type of thing, a method to help release emotions) are helpful in reducing stress, having a good support system also helps. I have read that L-Carnitine given to hyperthyroid patients lessens the severity of any thyroid storms. Thyroid storms do not have to be fatal if one takes care of oneself. With the first sign of symptoms, using beta blockers and increasing methimazole help to reduce symptoms fairly quickly. The problem with thyroid storms is for patients who do not know that they are having them and delay seeking medical treatment.

The Acetyl-L-carnitine was really reflected in my thyroid blood test results, more specifically my TSH. My T4 and T3 normalized very quickly in the middle of the range on a very low dose of Tapazole. After taking L-carnitine - initially regular L-carnitine and then later the Acetyl-L-carnitine, my thyroid antibodies disappeared. However, I still need a small dose of Tapazole (5 mg daily) and if I don't take it, my TSH drops and I get slight symptoms of thyroid storm.

Thanks for all that, Linda.

Sounds like you and I have similar mindsets (and circumstances that were stressful in our lives!). My over-active thyroid was also triggered by chronic stress - emotional remnants of divorce; then a multi-year emotional and (eventually) physically abusive relationship. When I left that relationship, I was really a mess. And I didn't have a very good support system, which just made matters worse. Plus not enough income to support myself, although in my previous life I was extremely successful. I tried really hard to get back on my feet, but nothing positive happened and instead I got so depressed and ended up in another abusive relationship. It was a downward, very stressful, spiral!

I'm back in Michigan now (from 8 years in Arizona) and have a boyfriend who basically saved my life. I couldn't take much more stress and I couldn't work because of my hyperthyroidism. So I'm now in a safe place that is stress-free...trying to heal all that damage that was done over the past couple of years. I found out recently I have severe cervical dysplasia, also (I'm convinced that the stress played a role in triggering that, too). Ugh.

Back in AZ, I had a chiropractor who also did muscle-testing. I went on a supplement because I tested positive for a virus (this was before my hyperthyroidism diagnosis). It helped, but then I stopped taking it. The stress in my life got worse. I read recently that thyroiditis can also be caused by viruses. I also know that several years ago a blood test showed I had Epstein-Barr virus. I suspect there's a possibility that the virus was present, my immune system was weak, I had lots of stress in my life, and my hyperthyroidism was the end result.

I'm familiar with the Sedona Method and even have an intro CD. I lived in Sedona, AZ for 9 months, too - a healing place if you're not experiencing abuse while you're there! A lot about releasing, which I definitely am working on. I think of all of this as a transformation in my life and I was one of 18 women chosen to write a chapter in a book about my transformation (it'll be published this August). The transformation is not complete yet but at least now I can see a light!

Thanks for taking the time to share...very useful info.

Hi all, i came on here a long time ago just after i was diagnosed graves and was quite hyper, i quickly fell pregnant after starting on medication and had a healthy baby boy 8 months ago, I was really worried but all was well.

I still dont really understand what I have - I went and saw an endo today (first time since having baby) who was happy with my blood results - tsh 0.64 and t4 - 16.6. I wasnt impressed with the endo who said I wasnt currently taking medication (I am - 1 x 50mg PTU 2 times a day!) and just to continue as I am.

I wonder what is remission? I would like to not have to take tablets everyday as half the time I forget to take them anyway. I cant take Carbimazole as I was put on that at first and had an allergic reaction (hives) and it was awful, I dont want to risk that happening again!

I am also VERY tired, I have no energy some days and find it hard to get out of bed (but needs must!) is this just because when I was hyper I literally lived on around 4 hours sleep for about 3 years before diagnosis and now I am 'normal' and this is what normal is xxx

I think remission is having no antibodies, normal thyroid blood tests and no physical symptoms of the disease. I am not a mother but I have heard from those who are that newborns can be very very exhausting because unlike me, you don't get to finish your job at 5:00 p.m. every day.

Linda

Hi Everyone,

Oh how I'm so glad to have found you all. For the first time in a year, I feel there are others out there who are experiencing the same thing. Last Feb, I started to have really itchy, sore red eyes with puffiness around my upper eyes. I went to my GP who gave me all sorts of stuff for allergies etc, to no avail. My eyes then began to get worse, with soreness at the back of my eyes, like you get with flu. I also became extremely light sensitive, so bad I could hardly look at my computer. I kept going back to docs, and only after some insistence did they do some blood tests. By now my eyes had got much worse, and looked really starey. I was beginning to panic as I was looking and feeling a mess.

Fortunately, the blood test showed really high antibody levels and this prompted further blood tests. Eventually, a few months later I got to see an Endocronoligist. She did some further tests and phoned we at work to say I had a very definite over active thyroid. I think my T3 was 13.1 although I didn't understand all this. By this time I thought I was going mad. My eyes were really unsightly, I couldn't sit for a minute, sweating during the night, felt constantly agitated, nervous and like crying all the time. I was also trembling. I was so relieved when I was diagnosed and the prospect of some help. In the meantime, I was so keen to find out about me eyes that I googled this, which was the worst thing to do. The images I saw on Thyroid Eye Disease were horrific, but I knew instinctively this is what I had. It was so hard going out to work every day being so self conscious about your eyes. I eventually saw an eye specialist and he confirmed the disease. I was devastated and broke my heart in the car afterwards. The hardest thing with TED is that it is such a long drawn out disease and you never know what you'll be left with.

I've been on Carbimazole and artificial tears for almost a year now. I started on 20mg and am now on 5mg per day as I've responded well to this drug. However, it's my eyes that cause me the most upset. I used to think my eyes were my best feature, and although they have improved, I still don't feel like me. I lost my mojo and want my wee sparkle back. I know this might all sound a bit vain, but it truly is a horrible disease. I read that it's life dampening and it truly is. I have a lovely supportive family, and I know this is not a life threatening condition, but I just wish it would go away so that I can get my eyes back.

I don't know if that's likely to be possible, and my left eye is worse than my right one, but my eye specialist won't do anything until at least another 18 mths. Has anyone been through this? Is it possible for your eyes to get better by themselves or is surgery the realistic option? Has anyone had the surgery, and if so was this successful? I would probably need eye lid surgery to drop my eyelids a bit as they have retracted.

Would be so delighted to hear from anyone who might have some advice or just some hope! Xx

My problem was really really dry eyes and my disease was diagnosed early, that is my thyroid blood tests were not too much out of range at diagnosis. I was started on 10 mg of Methimazole and am now down to 5 mg a day. I have also added Acetyl-L-Carnitine, an amino acid supplement you can find in health food stores and it improved my blood test values too. What really helped my eyes were plugs my ophthalmologist put into my tear ducts to block them so they wouldn't be so dry.

Linda

Hello Linda,

I'm pleased to hear your tearduct plugs are a success - I'm having mine plugged this Friday!

Regards,

Stefanie

She initially gave me the choice of using collagen duct blockers which dissolve in 3 months or silicone ones which are permanent. I did not want the silicone ones because of the negativity I have heard about silicone breast implants so I opt for getting the collagen ones every three months. This last visit last week she offered me a new permanent one made out of acrylic. She had difficulty inserting them this time where she never has had before. Don't know what that is all about.