Do’s and Don’ts for family and friends of Graves’ disease patients.

author: Svetla Bankova

1. First: Don’t run away from a person who has Graves’ disease/hyperthyroidism. When it comes to Graves’ disease, or any thyroid disease for that matter, it would separate the weak from the strong. Don’t be that friend or spouse that leaves. Help as much as you can, write, email, text, visit, stay there for the long haul. The longer thyroid disease stays, the lonelier it gets.
2. Don’t say things like “Oh, you are just having a bad day, tomorrow will be different”, ” You can’t do the things you use to do 20 years ago” or “If you just get up and move, get outside and do things, you’ll feel better.” That’s not helping folks!
3. Don’t’ share horror stories about people who became worse because they had their thyroid removed, got RAI, or pursued natural treatment. It’s not considered a happy ending, if the character of your story got worse, one or another way.
4. When it comes to a serious disease like Graves’ disease or Hashimoto’s, there are no right words. Keep it simple: “I’m here for you!”. And mean it. Sometimes you don’t have to speak even, your presence is enough and matters more than any words. Keep in touch, even your friend/spouse with Graves’ disease is too tired to talk, or to spend time with you. Continue to be there for them.
5. Don’t offer medical advice or discourage the person from pursuing the course of treatment he or she was chosen. (Unless you are a medical professional and you’ve been asked for an advice). Whether you agree with their decisions or not, respect the choices they have made. It’s about their health, not yours.
6. Don’t blame the person for being sick with thyroid disease. It’s not their conscious choice. Don’t point that he/she is being sick because of smoking, not eating healthy, lack of exercise, eating too much red meat, stress or negative thinking. Seriously, don’t do that!
7. Don’t point out anything that isn’t flattering- like their bulging or protruded eyes (that hurts!), brittle nails, skinny bodies, overweight bodies or fine hair. Make sure that your words are necessary, helpful and kind. That matters!
8. Don’t be afraid of the person being sick: Graves’ disease or any thyroid disease is not contagious. Get in there and hug, hugs mean more than words!
9. Don’t say you know how the person feels. You really don’t know! You can only guess, but that’s not enough.
10. Don’t ask personal questions; allow the person with thyroid disease some privacy. They don’t have to share everything with you no matter how close friend/relative/family you are to them. If they volunteer information, that’s fine. Some people prefer to keep their medical information private, other may go public. That’s their choice.
11. Don’t promise to do something that you can’t and won’t do for them. People with thyroid disorders may go through worst times of their lives, so don’t offer empty promises. The last thing for them is to be disappointed or heartbroken. Offer only what you are willing to follow through on.
12. Don’t take anything personally. Graves’ disease brings up all kinds of emotions, often negative. It can make the person irritated, angry, sad, depressed, anxious, nervous, tensed or all of the above. This has nothing to do with you, it is caused by their thyroid disease. It also makes the person awfully tired and exhausted so it is better to offer your help!
13. Instead of asking “What can I do to help?”, offer specific things: to babysit the kids for a few hours, to cook a meal, to run errands, to help with laundry, to drive somebody somewhere, to help with cleaning, to pick up kids from school, to help the children with homework, to fill the fridge, to go grocery shopping. Options are limitless, and you know best your friend/spouse/relative. If you can’t do something, you’ve been asked to, be honest. Don’t forget that it’s very hard for people with Graves’ disease to ask for help. That’s one of the reasons on a first place why they got sick!
14. Offer sweet little things that may help the person with thyroid disease feel better: buy movie tickets, invite over for dinner or lunch, buy flowers, write a card, send a nice text message, get them a good book/movie/CD, whatever you can afford or you can share. Trust me, your friend/spouse/loved one will never forget what you did for them.
15. Help the person with Graves’ disease to delegate duties. Make a list of what they need or want, then make a list of family, friends, co-workers, neighbors who might be the best matches to meet those needs and wants. Remember, this is temporary, but means a lot!

16. Sometimes a hug is all the person needs: it alleviates stress, depression and fatigue as well as lowers the risk of heart disease and strengthens immunity! A mere 10-second hug per day can reduce blood pressure and raise the levels of feel-good chemicals like oxytocin. So, go and hug your friend/loved one, it costs nothing! Don’t forget the 10 seconds rule!

Graves’ Disease Case Study – Sue Brown

Background

Perhaps I am a-typical because I first started with Graves Disease symptoms in 2001, diagnosed in 2002 when I first consulted my GP.   My journey therefore has been a long one.  I was told it was hereditary and my mother was hypo-thyroid so I didn’t delve further at that point into why I was affected.  The GP referred me to an Endocrinologist and his Registrar told me that I should have the RAI – it was a no brainer she said and very straight forward.  She gave me some leaflets to read.

I decided that my thyroid gland had served me well for 55 years and should be given the opportunity to mend so I took Carbimazole for the two years.  When I came off the drug I was fine for 4 more years and think I would have continued to be so had one of my sons not died suddenly.  Within a few weeks, my hyper-thyroid symptoms were back.  I persuaded the consultant to let me take the Carbimazole again as I just didn’t feel happy with the thought of RAI.  I also started to realise that stress could have something to do with it.

Again the anti thyroid drug worked for me and I took it for two years.  A year later, after a really horrendous house move the Graves’ disease returned, which was when I started to really understand that stress must be at the heart of what was wrong.  It was then that I researched in earnest and thankfully found Svetla’s website, bought her books and read as much as I could about Graves Disease in as many places as I could find information as possible.

Treatment Regime

My new GP (after the house move) referred me to the local hospital where I saw the Consultant’s Registrar who was actually very rude and dismissive of my views.   She ended up choosing not to treat me as I wouldn’t have the RAI so the ball was back in my GP’s court.  He was supportive and could understand why I didn’t want RAI but wasn’t a specialist himself so was in many ways guided by my previous experiences. I was back on the Carbimazole which continued to work for me.

Fortunately as I was by then age 66 I decided I had to retire as my job was particularly stressful, with lots of driving and jumping through too many hoops.  I also started meditating daily – well, mine is a combination of traditional meditation together with self healing through self-hypnosis, as I used to be a Clinical Hypnotherapist in my spare time.  I feel these two things have been the most significant in the healing process.

 Eventually the Carbimazole was reduced and I took 5 micrograms of Thyroxine a day too.  I had very regular blood tests but I don’t get printouts of these and thyroid antibody tests aren’t routine here.   I asked for one in Spring of 2012 and it came back with a reading of 24.  I requested another one in May 2013 and I was then no longer making any thyroid antibodies.  My GP had previously told me he thought I would always make them, as after all this time, I wouldn’t get rid of the Graves’ Disease unless my thyroid gland burnt itself out and I went hypo.

I’ve always eaten healthily – no processed food – everything home cooked but I now buy as much organic produce as I can.  I’ve really started to listen to my body and cut down red meat consumption by half and reduced the amount I eat for my evening meal as I always felt a little too full after that meal. I also eat earlier in the evening.  I’m not usually at home in the middle of the day so it isn’t convenient to eat my main meal then.   I eat more white meat and fish than I used to.  I started to drink aloe vera juice daily and bought a copy of Dr. Peter Atherton’s book on the benefits of aloe vera.  I had a mineral test and was deficient in selenium so I took that for a few months and also take an excellent food state vitamin and mineral supplement, plus a food state antioxidant daily.  I only allow myself one cup of coffee a day.  I don’t now take any prescription medicines.

Outcome

I stopped taking Carbimazole on 20^th October 2013 so am now in my 18^th week since then.  I feel absolutely fantastic and have no hyper symptoms at all.  As the prognosis was for the return of my Graves’ Disease within 6 weeks of stopping the medication, I feel that I have at last got rid of it.  My blood tests have been fine.  I was so determined to get better and I knew it was possible from reading Svetla’s publications.  There is no quick fix and as Svetla says, it isn’t easy as there are so many small things you need to do and you need to stick to it like glue, but then it just becomes a way of life.  I’m very energetic and play golf three times a week and walk quite often too.  Although I live on my own I have lots of friends who I see regularly as well as family.  I didn’t have any friendships I needed to get rid of, which was good.  I enjoy a glass of wine with a meal but avoid excesses of everything.  I’m not missing out on anything I want to do and feel really content with my life.  I hope this can be of encouragement to others who are wanting to recover from Graves’ Disease – good luck!

Sue

Hi Svetla,

I just want to share with you my success story & thank you for your support & inspiration.  In 2006, I was in school part-time, to be a massage therapist & worked full-time in the healthcare industry.  A lot was happening at once… my uncle & a dear friend died suddenly, a significant relationship ended & a new one began… I got promoted at work and 2 other close friends got gravely ill.  Needless to say, I fell apart.  I finally went to a physician & she had my thyroid checked.  Ultimately, I was diagnosed with Grave’s disease by January 2007.  I had difficulty catching my breath, severe tremors/heart palpitations, severe anxiety/mood swings, confusion, lethargy, sensitivity to heat and sudden shifts of vision in my left eye.  I went to an endocrinologist and he put me on Methimazole for a year and a half.  Then, he advised me to go off and see if my thyroid levels would stay normal on their own… this was protocol.  I went off cold turkey, under his direction. 

Of course, I got worse and my left eye swelled up as well as everything else.  I wasn’t happy.  He advised the next step would be radioactive iodine and take synthroid the rest of my life.  I was scared and confused.  I went online & started doing research.  I found your site and read your story.  I purchased your book and all the bonuses that came with it.  As I read through everything, I began to question my lifestyle, stress level and habits of thinking.  I decided to take a break from school and reduce my work hours.  I brought this to my endo and asked him to write a medical release, for my employer.  He said there was no proof that stress had anything to do with my symptoms & he couldn’t support my decision.  I asked about diet & if he knew anything about how it may affect my condition.  He said I didn’t need to be concerned with that either.  I told him I didn’t want any procedures and wanted to find another way.  He said it was too dangerous to stay on medication, as it was toxic.  I was scared and didn’t know where to turn.  All I knew was the medication was helping me buy some time.

Anyway, I went back online and continued to research some sites you include in your book.  One of them in particular by Elaine Moore.  I asked her questions and received new insight into how to best approach recovery and avoid permanent, irreversible damage.  I found out that it wasn’t dangerous to stay on low doses of Methimazole for long periods and that many people had done it.  This was the best way to allow the body to adjust, over a long period of time.  I gained confidence in my decision to go another way and shopped around for a new endo.  Everyone had the same opinion, that I would have to either get radioactive iodine or my thyroid would simply “burn out” on it’s own & become hypo.  Either way, it was bleak.  I finally found a physician that was open-minded.  She let me direct my care, the way I thought best.  With her support I decided to continue taking Methimazole at low doses & continued this for 3 yrs.

I continued to try different healing modalities, but my mind was attached to being sick.  Some part of me didn’t accept that healing was possible.  It was almost like I didn’t want to be healed completely.  It was strange to realize that.  Also, my addiction to caffeine was keeping me down.  I knew I had to quit that for good.  It was simply going to hinder my ability to move into remission and stay there.  It made me feel terrible!  Finally about 4 months ago I got serious about healing, all the way.  My friend, who is a Qigong instructor did a healing session with me and this removed some of the remaining symptoms, I was still experiencing.  I was ready to quit caffeine for good now, so another friend hooked me up with a very gifted Chinese accupuncturist/herbalist.  Gradually, things started to shift dramatically & I actually started forgetting to take my medication!  My mind completely moved away from being ill.  I was not identified with being sick… it was not part of my identity anymore!

To this day, I haven’t had to take any medication and experience very minor symptoms. Occasionally, I have slight tremors, but that’s it.  Otherwise, I feel great!  I’ve managed to stay off caffeine and I’m finally finished with massage school & am getting my license soon.  I can finally cut-back at my current job and do what I love!

Again, I want to thank you for giving me hope, along with other resources that allowed me to think outside the box & pursue my own path to recovery… with organs intact!

 ~Myra B.

Simona’s Story about Graves’ Disease and healing

As one Cree storyteller said: Stories are Beings. You invite them to live with you. They will teach you what they know in return for being a good host. When they are ready to move on they’ll let you know. Then you pass them to someone else. 

Stories will also sustain you in times of challenge, frustration, and failure and it will confront you in times of confusion, pain, and loss, as they do with me. 

I am so happy to share this story with my dear readers! Below is the Simona’s story, and with her permission I am publishing it hereby. She sent it to me as a response to my article about Graves’ disease overweight that I recently wrote. I was touched by her story, because it resembles my own, to a very big extend. I know that I am not the only one who conquered Graves’ Disease, one or another way! I am not the only one who came out with  more knowledge and understanding of what is this disease is all about. Enjoy reading!

“Hi Svetla,

10 years ago I was diagnosed with Graves’ disease. I went to see my doctor after I’ve put on 10 kilos (~22 pounds) in the space of 2 months. I knew something was wrong, since I’ve always been very, very active, athletic, toned and never overweight. I was my doctor’s first case of someone gaining weight with an overactive thyroid. He thought the lab has made an error and re-tested.

The 10 kilos “stayed” with me for over 5 years and to all your readers – I don’t think there is much you can do until you sort out your life and your priorities one way or another. I believe it was my body’s self-preservation instincts at work. I was doing more things in a day that most “normal” people would do in a week. I was running a business, looking after a family and a household, I was studying, I was managing a few investments properties, I was looking after a big garden, I was entertaining, I was renovating and extending the house – all this at the same time and it had to be done perfectly… Since there wasn’t enough hours in a day, I stretched my waking hours to the max and slept for only 4 or 5 hours a day. I think it was my body’s way to make me stop and say – I am not doing this anymore – you go on without me – if you can that is.

It was depressing and I refused to accept it. It took a long, long while to accept myself as the “new” me. My hormone levels were 2.5 times the maximum. I was so exhausted that I couldn’t take a shower at the age of 35 – I couldn’t keep my hand up long enough to wash my hair and had to put a chair in the shower – only then did I realize – the weight gain was the least of my problems.

I had to accept that I am not well, that I have no energy to keep on doing all the things I used to do, take it easy and be kind to myself. I cut back my workload, I learned to ask for help if things were getting too much, I’ve learned to say “no” (this one is still a work in progress) and I’ve decided I loved myself more than ever before – after all there was 10 kilos more of me to love.

Only then did things go back to normal including my weight. I got rid of everything that was too much – including a chronically unhappy, bully of a husband – that did have a lot to do with things being a lot more normal and peaceful.

I am now the biggest procrastinator there is. I know tomorrow is another day and the sun will come up again – I don’t have to finish everything today. There can’t be anything that urgent to warrant a sleepless night (except a sick child).

I have put myself back in the center of my Universe and a day when I can wake up, have a shower and function is a very happy day. I am very grateful for everything I have and don’t need to push myself for anything else – just wake up, have a shower and be able to function – I will never allow myself to forget how nothing mattered when I was so unwell.

In Bulgaria there is a saying: “If someone says this job is urgent – sit back and wait – if it is that urgent – someone else will do it – if it hasn’t been done – it means it wasn’t that urgent to start with”. A psychologist told me that procrastination is your body’s natural instinct to avoid unpleasant tasks. It is not that bad when you think about it. Listen to your body! I hope that this can be helpful to your readers. Thank you for your informative emails. Take care.

Kind Regards,

Simona,  Australia”””

In fact, I did recently published an article about hyperthyroidism and weight gain, with possible reasons and some suggestions. Feel free to check it out.

Hyperthyroidism Weight Gain

I also published some of the stories from “Life Stories for Graves’ Disease and Hyperthyroidism”, which we created together with other readers back in 2009 (check them below). If you are one of these people, don’t hesitate to email me an update about what happened to you for the past 4 years, I want to know! (Click on the book to learn more and get your own copy).

I’ll also be more than happy to publish your story, anonymous or not, regardless if it was successful or not yet, regardless if you went through RAI, thyroidectomy, medication or used natural methods to treat Graves’ Disease, Hyperthyroidism or Thyroid eye disease. People have to be aware of all different options for treatment and to know that there were other people in the world who went through the same problems. Share your experience, let’s help others too! Email me your story at mythyroid@gravesdiseasecure.com, and if possible with your picture, if not, that’s still fine.

Read more stories below:

Goitrogenic foods for Graves’ Disease. My story: by Margaret M., Australia

Jan A.’s Story about Graves’ Disease and Ophtalmopathy

My Graves’ Disease story.  The Thyroid Stimulating Hormone issue; by Christine R., Douglasville, PA, USA

Hyperthyroidism Recovery- by Carol Blake-Hodge

TSH Levels. A Story by Barbara Oczachowski

My  Story about Graves disease eye problems- by Sarah Biran

About 6 years ago, when I was 57, I was diagnosed with Hyperthyroidism, which I learned later that is called Graves’ disease.

The main and only symptom I had then was double vision. I had to see many doctors: optometrist, eye doctors, endocrinologist, many hospitals until finally, they decided that my eye problems are from Hyperthyroidism.

All these months while I was in treatment I continued working, I am a kitchen designer and my bulk of work is designing kitchens on the computer, so to be able to do this, I used to cover one eye.

I was treated with radioactive iodine (pills) for a few weeks and it seemed that it worked. My tests were perfect, the double vision was gone, the doctors were very pleased and all was well for the next 5 years.

In August 2008 I started to have double vision, painful dry eyes, extreme tearing, a lot of discomfort, but I live in the USA, don’t have insurance, so I suffered until the pain was unbearable.

On Nov 14, 2008, I went to Toronto Canada to get some help (I am Canadian). Obviously, in Canada, I had to see a few eye specialists that only prescribe teardrops, or tell you to tape your eyes at night.

I wasted countless hours in many hospitals with no results. My eyes were popping out, the right eye had an open space of one and a half cm (about 3/4″) and left eye was open for 1/2 cm (or 1/4″ maybe), both eyes were red and tearing.

One thing they all knew for sure: this is from Graves’, called Thyroid Eye disease (TED), but no real help. I was already on Tapazole because the thyroid test was a little abnormal. It was clear to me at that time that no endocrinologist knew anything about TED and no eye doctor knew anything about Graves’ disease (just the name).

Finally, I found Oculoplastic Surgeon named Dr. James H. Oestreicher, M.D., F.R.C.S. (C). This means he has completed highly specialized training in plastic surgery, as it relates to the eyes and their surrounding structures. Thus, he is better qualified to perform eye-related surgery than ordinary plastic surgeons. He performs lid lengthening (for patients with hyperthyroid “staring eyes”). You can read about him and his spectacular practice on the Internet.

He operated on me on Dec 5, 2008, gave me Prednison (steroids) for inflammation and an antibiotic ointment called Cloxan which I still use now.

I could close my eyes, but I still had to tape them at night. He also sent me to a hospital and I got radiation on my eyes for 10 consecutive days.

 On Feb 4, 2009, I finished my radiation and Dr. Oestreicher suggested to do a major operation DECOMPRESSION. This is one thing I am still resisting, all I read about it is terrifying and horrible.

So on Feb 5, 2009, I came back home to San Diego, my condition didn’t improve much, the double vision is gone, but the muscles in my eyes have a mind of their own, cannot focus.

As of today, September 3, 2009, I still have pain in my eyes (right eye was always worse than left), I have a hard time driving, so I try not to, I always cover my right eye to be able to read, or walk, or drive, or function. I get headaches, tearing eyes, no light at the end of the tunnel for me.

Your book and emails helped me a lot, trying to be optimistic, but I feel disabled, I gained weight and can’t lose. Amazingly I never met ONE person that had or has this condition not in San Diego or in Toronto, so thank you for the website you started, it is very very helpful, you doing a great job.

Bless you, Svetla

Here is a picture of me before I got the radiation pills 6 years ago. If you need or want I will send you pictures after the eyelids operation and maybe a recent one.

Take care, 

Sarah Biran

For more stories of people, suffering and dealing with Graves’ Disease, graves eye disease problems, hyperthyroidism visit here:

Life Stories of people with Graves’ Disease

Hyperthyroidism Recovery, as told by Carol Blake- Hodge

I am a single mother of 4. Three young princes  and one  princess.  I am 60 years old today, 29 September 2009.  Presently, I reside in St. Croix, US Virgin Islands as a  Cultural Heritage Arts professional .

I became aware of my glandular problem back in 1986. My doctor diagnosed my ear and throat and said I needed to get it  checked. I did not accept his diagnosis, so I did nothing about  it. Three months after giving birth to my last child (October 26, 1988), my then physician was concerned and sent me to have a test done at CrawfordLongHospital in Atlanta, Georgia. In the space of two days from the first test on my thyroid, the gland had grown to the size of a small grapefruit.  I was told that I needed to have surgery. I was diagnosed with Hyperthyroidism. But is there a hyperthyroidism recovery?

I was attending medical school at that time and had the opportunity to do research on the Thyroid gland. I was told by my doctor that I had to have an operation. I agreed that something had to be done, so I signed into the hospital thereafter to have the procedure done. Needless to say, the operation went well but left me feeling cheated and puzzled over the 2 hours of my life while being operated on and the recovery period. I could not remember anything. This plagued me for quite sometime. I was placed on Synthroid- 0.5mg., which I was told to take daily to increase my chances of survival. Some years later, in 1991, I moved back to the Virgin Islands and continued using the Synthroid.

From the year 2000 to 2006, I began experiencing severe headaches, palpitation of the heart, memory laps, stress, TMJ and off-balanced menstrual cycle. I felt like I was loosing myself into nothingness.

Finally, one day at work I decided to surf the net in hopes that I could retrieve information on Hyperthyroidism and cures.   Surprisingly, I came across Svetla Bankova’s story on Graves Disease and Hyperthyroidism. I read her story and decided to get a downloaded copy of her book.  Along with her book I received weekly motivations, insight and encouragement from her through my email. This was really good for me, and I looked forward to each email with great anticipation of all that she would have to share with me.

I began to look at my life differently…What I wanted and expected, where I wanted to go and to be; most importantly, what is truly best for me and how can I get there. While working on all this through prayer and hearing the penetrating and inspiring words of God—To bring about change: You have to do something that you have never done and Svetla ”It’s a lifestyle!  I gave it my all. Then my doctor retired and I had a new one.

This physician sent me to have lab work done, and the thyroid results turned out to be unbelievable. The dosage of Synthroid was too high causing the medical problems I mentioned earlier. The dosage was changed to 0.08 mgs. After taking the first pill, my menstrual cycle came back and I called to let the doctor in on it. I never had the opportunity to speak to him. The nurse decided on her own diagnosis and prescription. All this was based on what her girlfriend experienced. To say the least, I was really ticked-off and that was my last visit to that doctor’s office.  I became very skeptical of synthetic drugs after this and came to a drastic decision…I’m going cold turkey; and I did.

I was visiting a Naturopathic Physician at the time who specializes in other areas of health, including Pain Management.  She experienced my frustration and asked what the problem was. When I told her she began to laugh, but concluded by showing me in a health and healing book that what I was told concerning the pills and my life was a lie. Somehow that day it was all I needed to hear and I told her of Svetla and the lifestyle changes that Svetla had told me I had to make if I wanted to begin enjoying life for me and my family.

It’s been 3 years since I have not taken Synthroid, I’m headache free. Healthy and meaningful conversations are at it’s highest, and my hobby has turned into a profitable business. And so is my lifestyle and what goes into my mouth.

Yes, there are times that I indulge in something that I should not eat, but with God’s help and time and my willingness to be true to myself and God’s word (My body is a temple for the Lord), I will prevail.

I truly feel blessed, because I have two Naturopathic Health Care Consultants that has my best interest at heart here in St. Croix, USVirgin Islands, and I receive much care and guidance from both, together with Svetla’s motivational emails that I continue to receive to date.

It’s my prayer that God’s covering protection be over each of them and their families and practice to include the lives of those the Creator has and continues to send along their path.

God Bless!

Carol Blake-Hodge

To find more successful stories of other people battling Graves’ Disease and Hyperthyroidism, check out here:

Life Stories of Graves’ Disease

Goitrogenic foods for Graves Disease. My story: by Margaret M., Australia

My name is Margaret, am 62 years young, mother of 4 terrific daughters, and I live in Australia in a rural countryside. Have been a medical pathology technologist for 20 years but have always done all sorts of creative art leading to having an art supplies and teaching shop till 4 years ago.

I haven’t conquered this condition as yet but do feel my best in 4 years. I want to thank Svetla Bankova very much for helping me to get there.

Well, no one wants to be hyperthyroid, but it has taught me such a lot about diet, food, illnesses, exercise etc… not necessarily related to having Graves’ disease. I would just like to state what I have done and experienced to date in case it is of any help to others.

I have been mostly very healthy in life till 4 years ago when came down with a extremely deliberating mystery disease…sciatica or shingles? All blood tests were OK, but just could not sit down for the pain in upper legs and just so exhausted. This has lessened over the years but not completely till this year when my naturopath put me onto fish oil.

Now I believe that I had started to become hyperthyroid 2 1/2 years ago when I began to lose weight. I thought it was an aging thing and my symptoms were part of getting older and thus weaker.

In December 2008 when having dental treatment became very ill and went to hospital outpatients and was diagnosed with hyperthyroidism. Had all the symptoms, high blood pressure and T4, T3 and non-existent TSH, shakes, too many bowel movements, excruciating sinus and gum pain etc but luckily didn’t go into thyroid storm.

Well, it was a tough Christmas but with lots of lemon juice, honey garlic, onions, natural nasal decongestants finally got rid of this bronchitis type flu in a few weeks. I only mention this as another person with Graves’ disease on Svetla’s site underwent similar symptoms so I believe the sinus involvement could be part of having full blown hyperthyroidism.

I didn’t want to go on antibiotics as had with teeth. It’s never good for you and can lead to Yeast infections which could be a cause of Thyroid problems.

I had lost 10 kgs of weight and was on Atenolol for blood pressure and symptoms and Neo-mercazole for the thyroid. I use to sleep on five fluffy feather doonas as felt very bony.

It was all new to me, frightening. I knew nothing about it, but lots of support from my terrific hubby and daughters and read pleasant books (P.G.Wodehouse) and sat outside in the air and tried to keep calm.

As got a bit better, started to eat maybe all the wrong things like cream, cheese, a build-up drink ‘Ensure’ but put nearly all the weight back on in less than a month.

I was tired, not much energy but at least the weight gain was positive. I found that the Neo-mercazole affected my liver so I changed it to Propylthiouracil, but still liver results up. My doctor was concerned so he sent me to an endocrinologist who suggested Thyroidectomy or RAI treatment.

Well, knew nothing much about anything but didn’t like the suggestions so started to check out on the Internet and luckily came across Svetla’s site and other information. It gave me hope that there are other approaches to the disease.

I had started a small organic vegetable garden a year before that being inspired by reading “The Ringing Cedars of Russia” books by Vladimir Megre. Luckily had planted Goitrogenic foods for Graves disease and it was so restful to garden even when didn’t have much energy. Just seeing the green and being in the air was very beneficial.

(NB: Goitrogenic foods for Graves disease are foods that naturally inhibit the overproduction of thyroid hormone).

Following the suggestions in the Download books of Svetla’s, I began to do sprouting of organic seeds, also taking a liver tonic consisting of Milk Thistle (silybum marianum), Dandelion, Berberis, Globe artichoke etc. And I began also drinking Braggs organic Apple Cider Vinegar- only one to get as Organic, Raw, has magnesium, potassium and my liver results started to improve.

Now I only buy Organic produce and have also been to a naturopath who has put me on Bugleweed and Lemon balm etc for thyroid and the liver, Fish oil for the cell membranes. And as I said all the stinging in legs has gone, Multivitamins, Bilberry tablets 1200mg a day for my eyes- my eyes feel good, bathe them with chamomile tea and also saline drops soothing, but are still protruding and puffy underneath.

I also do the eye exercises each day that Svetla gives in her book and I do them when walking in the bush air- my eyes feel better in the open air. The naturopath also believes that there is mainly an underlining yeast (Candida) infection that can be the cause or product of an Auto-immune disease so am also on a Dairy/ Gluten/Sugar free diet– although I can have Goats milk/cheese and yogurt and I can have grain but not wheat or yeast.

I have decided to not have oats/barley or rye at moment so have the seeds. Rice, Buckwheat, Quinoa, Amaranth in bread and porridge. NOT Soybeans, because it has too much aluminum and female type estrogen in them.

To date 8 months later I have so much energy and I am walking really well etc. I do not take Atenolol (beta-blockers) anymore and I am on ½ (25mg) PTU tablet day and night . At moment my T4 is good but the T3 rising a bit and still the TSH is non-existent.

I came across a great book by an Australian doctor Dr Sandra Cabot. She writes lots of books with a holistic approach with a naturopath, does seminars and I went her website to buy her thyroid book ”Your Thyroid Problems Solved” (by Dr Sandra Cabot /Margaret Jasinska ND) “Holistic solutions to Improve your Thyroid”.

http://www.weightcontroldoctor.com.au/index.php?page=shop&subpage=cat1&id=97 ….

I found it very helpful regarding the symptoms to look out for, so you’ll know when your tablet dosage is too strong -such as itchy skin, headaches, goiter. I have been then able to with quite a few blood tests and regulate my dosage to stop me going too much into a hypothyroid state. Also she believes in the Dairy/Gluten free diet etc.

So I haven’t as yet conquer the disease, but as I said, I  have learnt so much about eating well, growing good food, milling my own grain/seeds, having the great vinegar and have passed on this information to other people so that in turn it has helped them to better health.

All best and keep positive…Margaret

Some great books I can suggest are:

1. “Life Manual for Graves’ Disease and Hyperthyroidism”. Svetla Bankova

2. “Your Thyroid Problems Solved” by Dr Sandra Cabot

3. “How I can grow and use SPROUTS as living food?” And also the Self-Sufficiency and Herb Books by Isabell Shipard

4. The Ringing Cedars of Russia- by Vladimir Megre

5. “The World’s Healthiest Foods” by George Mateljan. You can find it at Amazon.com

Ophthalmopathy in Graves’ Disease and my thyroid  by Jan A., Australia

Jan A. is 61 years old and has 3 sons. She was born in England and immigrated to Australia in l976. She is a Psychologist and enjoys countryside, riding, yoga, dogs, cinema, reading, drawing, gardening, walking, friends, family, travel, creativity, writing and alternative health. 

When I got out of bed one morning nearly 3 years ago, my feet and lower legs felt so stiff and sore I limped off to the bathroom. I thought I’d overdone it at yoga the previous day, but the soreness kept coming morning after morning. It would wear off with activity so that was something. I didn’t really think much about it.  Just thought it was another sign of my age – 58 at the time.

A few weeks later my eyes became red and puffy like a bad case of  hay fever, which I didn’t usually get. They didn’t settle down well at all. Then other things started to happen. I felt very hot. Even hotter than I normally do in an Australian summer. My arms started to tremble and my heart felt like it was pounding for no particular reason. Most noticeable when I lay in  bed at night. Riding my bicycle on the flat left me puffed which was very unusual and I was also losing weight – the only benefit in the whole episode. My husband would probably tell you that I was ratty and irritable, but I wouldn’t believe that.  Though I do think I was anxious.

 I did go and see a cardiologist at this time. I had a year old referral just to have a check up because of heart problems in my family.   With my heart knocking away in my chest I thought I should get it checked out.  The tests showed that my resting heart rate was 102 beats per minute and his report mentioned significant abnormalities. I’m not sure my GP ever read the report because nothing happened.

One day my GP – where I also worked as a psychologist – noticed that my eyelids were retracted and gave me a blood test. Sure enough. Thyroid problems.  It was hyperactive.

I heard the results while away on holiday and had to urgently find a pharmacy where a prescription could be urgently faxed through. I started on one pill of neomercazole p.d. but my GP rang through again and said to up the dose to 6 x p.d.  At night I lay awake in a strange bed feeling more than a little scared and  wondering if I would live till the morning. A bit melodramatic but all this was rather a shock to someone who prided herself on being fit and healthy.

I am very interested in natural alternative health but nonetheless I went to see an endocrinologist. She sent me off for a nuclear scan which showed I had Graves’ disease and another scan to see if nodules were likely to be a problem. Fortunately, they weren’t.

Over the next months, I saw naturopaths, acupuncturists, an anthroposophical doctor and masseur, and read lots on the net. The first naturopath I went to had me tested for allergies, via a live blood test and scratch tests. The theory being that the digestive system needed to be healed before my thyroid could be healed. i.e. a faulty digestive system could be the cause of the problem. I went on a diet which excluded all the things I’d been allergic to.(there wasn’t anything greatly obvious) plus, I cut out dairy, alcohol, sugar, coffee  etc. All the usual stuff. I didn’t find it too hard. There was a lot to be gained. Also there was a whole heap of supplements to take. 

Unfortunately, this particular naturopath lived quite a way away from me and after a few stuffed up appointments, including driving all the way there to find her missing, I decided to try elsewhere. The second one was recommended by someone at work who had a similar problem, but without the eye troubles. He might have been on the right track, but I didn’t gel with him and because he was seriously overweight I didn’t feel able to trust his advice.  

In the meantime I went to see an eye specialist. In fact I’d been to see him with my hay fever symptoms, and he hadn’t picked up my thyroid problem. Giving him the benefit of the doubt I went back again with the new diagnosis. Because I had been referred to him via a friend, he looked at me in horror and said “it would be just my luck that because you are a friend of a friend that this will be a really difficult case. If you’d like to go elsewhere that would be fine with me.” This was after he had told me that the worst case scenario was that I could go blind. 

I left in a hurry and never went back. The next guy I went to was much more reassuring, though he was so popular (or disorganized) I ended up waiting hours in his waiting room for each appointment. I had to do field of vision tests which were averagely ok. Though I think I might have fudged some of it! The pressure in one of my eyes showed glaucoma, caused most likely by the ophthalmopathy in Graves Disease. For this I have to use one drop per night of Xalatan. I also put an eye gel in my eyes at bedtime (I should do this more often) and wear an eye mask (courtesy of the airlines) which helps to keep my eyes moist overnight. They were drying out badly at the beginning and felt like I had broken glass in my eyes. 

Having a mouth full of amalgam, I decided to have it all taken out.  Ugh! Have hated the dentist for ever. I need gas to even walk through the door. However, I found a lovely alternative, holistic dentist, who forgot to give me chelation therapy, it turns out. But she was very gentle and understanding. Mostly! It took a few weeks to remove them all – with long intervals in between sessions. However, towards the end, my heart started palpitations!!! I went back to the doctor who recommended a blood thinner (warfarin) and a beta blocker. That was rather nice. I felt very calm on that. A heart specialist was the next visit. That’s enough to make anyone’s heart go erratic. Because of the drugs he gave me I had to have a blood test every other day or so to check I was getting the right dose and my blood reacting correctly. This went on for a few weeks but eventually I was given the all clear and was able to go off the heart drugs. 

All this time I had been having acupuncture. I think my eyes were improving – though what it was from is hard to know. Resting for an hour in beautiful surroundings with needles sticking into me was a lovely relaxing thing to do. 

I did try neuro cranial therapy but only once. And also a different form of chiropractic. By this time I was taking herbs, had tried Chinese herbs and homeopathic drops and I felt my life was revolving around appointments and remembering which pills, drops etc to take when. So I stopped most things.

Now, I just take one neomercazole tablet p.d. (tried taking just a half tablet but blood test results told me to go back to one tablet). On half a tablet per day my T3 and T4 are ok but TSH is 0.21. On one tablet p.d. the TSH is 0.69 and my TSH receptor antibodies are still present at a low titre of 1.6 IU/L.. 

I take herbs, Bugle Weed, Hawthorn and Motherwort. When I remember, I take other supplements such as magnesium, vitamin B’s. There’s a whole stock of them in my cupboard. Most of them half empty. I read an article and get enthusiastic, rush out and buy what I’ve read about. The enthusiasm wanes after a while. 

 I came across Svetla’s site and loved the encouragement she gives.   I don’t know that I have changed my life greatly. I think what I really need to change is my thinking and my attitude and approach to some of the problems I face. Meditation I believe can help me with this, but I find I don’t do it as much as I should. It’s ridiculous to say that life is too busy to meditate.  

Its 2 ½ years since my diagnosis. I stopped drinking until Christmas last year and now enjoy a glass of wine when I want. I also started to eat chocolate at Christmas and didn’t stop until recently. Maybe it’s the chocolate and maybe it’s the thyroid stabilizing a little, but I’ve put on weight and need to do something about that. 

Last blood test results and everything was normal. I’ve been there before. I’ll be really happy when its all normal and I no longer take my neomercazole.

Jan

A Story by Barbara Oczachowski

My story is short. I was diagnosed about 3 years ago, my thyroid doctor on the first visit and any after told me, that my option will be to burn my whole thyroid function and be on the pill for the rest of my life. I was very disappointed and I didn’t want to believe this could happen.

First two years I listened to my doctor advice and took Tapazole, when he increased my dose to 15 mg/daily I didn’t fill good at all.  I gained a lot of weight so I decreased it my self to 10 mg and after 6 months to 5 mg again. Finally, I felt that I didn’t need it any more so I stopped it’s been 3 weeks now & I fill ok.

I have seen my doctor every 6 months, every time he would say that if this does not help, we will burn it, he was not optimistic at all and didn’t give me any hope to recover.

I was not ready for burring my thyroid at all.

Well, after a while I told him what I was doing on my own. He was surprised that my T4 and T3 are good now, just TSH levels are still not good. The TSH levels were 0.17, but they were at 0.05 just 2 months ago.

So, my doctor said the disease may come back if I do not take pills but told me to wait and do another test after 30 days. I’m waiting and hopping I will be all right and would not need the Tapazole any more. I think even if I take it for a longer period of time, the 5 mg it may cure me totally, even though my doctor said at least 7.5 mg. Well, I will listen to my own body and see; it may cure itself too without it.

I try to eat whole foods and avoid sodium in it, I take 2 herbal calming pills before I go to bed to help me to sleep better. But I also think that maybe calming my body is helping the thyroid too. I try to avoid stress.

I got the thyroid problem I think after some kind of flu that I got while traveling to Asia in the airport in Japan, I was coughing & choking at the same time for whole 2 months after that. I took some antibiotics for it, which were not helping at all, but rather making me weak.

Airports and air planes are full of germs; every time I traveled I got sick before too.

My family doctor sent me to a bunch of nuclear tests which were not needed before I had the chance to see the specialist. These were not needed especially when I had to swallow the radioactive pill and be under radiation, which was not necessary at all. Please Svetla, tell people to go first to the specialist and then see what needs to be done. That extra radiation was not needed at all, try to avoid not necessary exposure to x-rays- radiation.

I also liked the sea food, the doctor didn’t tell me to avoid it, but I eat now only a fish preferably from lakes, a lot of mangos that are supposed to be good for my thyroid.

Barbara Oczachowski

My Graves’ Disease story.  The Thyroid Stimulating Hormone issue.

by Christine Rhoads, Douglasville, PA, USA

I was diagnosed with Graves disease in May of 2008.  My primary doctor was just doing a routine blood analysis and discovered that I had no THS (Thyroid Stimulating Hormone) being released by the Hypothalamus for the Pituitary gland to tell the Thyroid to turn Iodine into Thyroid hormones.  He did a follow up test of my T3 and T4 (the two Thyroid hormones) and found many times the amount that it should have been.

As far as I know I had no symptoms (except maybe a bit of heart palpitation that I wanted to discuss with my doctor).  My eyes didn’t bug out too much, and I wasn’t losing any weight.  But my primary doctor sent me to a specialist who felt my thyroid gland and confirmed the diagnosis.  He discussed all the alternatives (medication, removal, radiation, etc.) and I was adamantly against all of them.  I did, however, give in to taking Methimazole.  But I also purchased your book (Life Manual for Graves’ Disease) and found that Stress was a major influencer in the disease.

I discussed this fact with my doctor, who dismissed it as poppycock.  He said stress had absolutely no influence over the disease. He also said it didn’t matter what I ate or whether or not I exercised.  I decided he was full of it.

The fact was, March and April had been just about the most stressful months of my life.  Both of my parents (who had divorced many years prior) had ended up in the hospital. Both needed to be convinced they should move into assisted living. Dealing with them was extremely difficult, and the time I had been investing had taken away from my normal wellness routine of 90 minutes of daily exercise and healthy eating.

By June, however, much of the stress was gone as my Mother was safely ensconced in assisted living and my Father had stopped drinking and had improved enough to live independently again. I returned to my routine, including Taijiquan which calmed me and controlled my stress levels.  I did make one change the doctor requested: I stopped taking a daily vitamin that had iodine in it (replacing it with One A Day, the only iodine-free vitamin I could find), and started using Kosher salt without iodine.  The next call from the specialist was a frantic call to stop taking the Methimazole as my Thyroid hormones had fallen dangerously low. The doctor pronounced me “in remission” by October, when my levels returned to normal after I stopped taking the Methimazole.  He told me that I in 95% of the cases, Graves disease never returns.

That’s my story. Feel free to use it.

Christine R.