There are no alternative therapies for Graves Disease. You can try taking anti-thyroid medications, but those are usually not long term options.
The reason some people feel worse after thyroidectomy is because their doctors won't prescribe adequate replacement medication to alleviate the hypothyroidism that results from the TT or RAI.
I agree. There's no way to "heal" a sick thyroid. Graves', unlike Hashi's, often goes into remission, so anti-thyroid meds are usually what's tried first. If you're one of the lucky 30% who go into remission, you will be able to come off ATMs. If not, most people eventually seek a permanent solution, either surgery or RAI, if ATMs do not control it adequately.
How do you feel? It's really a matter of how hyper you feel and whether or not the excess thyroid hormone is damaging your body.
Thanks for commenting! This forum these illnesses are rather new to me so bear with me!! Let me give a little background as you ask how I feel. I was left undiagnosed for 6/7 months during which time I had one thyroid storm and had to go to the emergency unit in an ambulance and they had the defib ready at hand. I then couldnt eat walk or talk for 2 weeks and my levels of hormone went to 100+++ and the machine stops at 100 and I went to A+E and was sent home. WITHOUT A BLOOD TEST. Anyway fast forward to the current time. I have now been on all manner of thyroxines carbimazole etc etc to get my body ready for surgery as my specialist was so shocked at what he saw when I finally had my appointment with him. he immediately rang down to the surgeon and said that he had a patient he wants to send to him. Anyway I have Severe Graves Thyroid Eye Disease Hyper ahd hypothyrpidism and lastly Thyrotoxic Myopathy. I have always been in relatively good health although I never ate or slept and was constantly on the go. As an Event manager I always had something to plan so I went at it 500000 miles an hour. Now though I am using a walking stick, my hair has fallen out, I have lost my face to TED and I feel faint lethargic and my legs buzz all night long. The excess hormones have damaged my body very badly but I STILL maintain that naturopathy can help as well as accupuncture, Light therapy, homeopathy etc at the same time as I am taking my current meds. I will try to find some inspirational stories of those who have followed this path and post them up if I can find out how. I just do not want my neck slit open if I can find other ways to control this ******* Graves (Sorry but it IS a ******* illness) No offence
Hi there I don't know how to reply with one message to two people so please see the response I sent to barb above. Thanks very much for commenting on my question.
You can put more than one name in the box if you want to, e.g. "Barb135 and goolarra".
I find a couple of things in your post confusing. So, let';s make sure we're on the same page before I comment further.
"...my levels of hormone went to 100+++..." Which hormone was that?
"...I have now been on all manner of thyroxines carbimazole etc etc..." Why were you on thyroxine if you are hyper? Were they doing "block and replace"?
"Anyway I have Severe Graves Thyroid Eye Disease Hyper ahd hypothyrpidism and lastly Thyrotoxic Myopathy." Please explain how you have hypo AND hyperthyroidism.
What are your current meds? Also, I asked this question on one of your other threads...please post recent thyroid labs with reference ranges that vary lab to lab and have to come from your own lab report.
Have you been tested for Hashimoto's Thyroiditis, as well as Graves Disease?
What antibody tests were used to confirm Graves?
I have graves' too, but my symptoms came on gradually over 5-7 years before being diagnosed. I felt like I was going crazy. Very rapid heart beat, high blood pressure, anxiety, muscle cramping, ect. I also have TED. I was diagnosed and a month later had RAI, because my hyper symptoms where so bad and they said my high heat rate could be dangerous. About 6 months after RAI I had gone completely hypo, due to my drs lack of knowledge. I could barley move and was a complete mess. I went to many drs and finally found a holistic dr who did the right test, got me on the right meds, and now I am feeling good. She said she has had some luck helping hyper people go into remission, but your case sounds pretty severe.
It's SO important to find a great dr who will test FREE T4 and FREE T3. I still have some problems with my eyes and didn't know that TED can be made worse from RAI. Looking back, I wish I would have tried some alternative therapies(acupuncture, adjusting my diet, ect). I think my genes played a part(my mom has graves'), but I feel my diet may have made my condition worse. Some believe graves can be triggered my food allergies(gluten, dairy), aspartame, fluoride, pesticides, processed foods.
I no longer eat gluten, soy and am currently trying to cut dairy.
Life can still be great, even if you do remove you thyroid. I am now healthier than I've ever been in my life.
Good luck and feel free to check out my journals and eye photos!
Hi I really appreciate your post. It's always nice to hear good reports. Can you tell me if you had your thyroid removed and what meds are you on? Also, what test did your doc have you take?
Thanks
I had Radioactive Iodine to kill the thyroid. I first started on synthroid and still had many hypo symptoms. I then tried adding cytomel to the synthroid and had much relief of many symptoms. Back in April I decided to try armour thyroid and that is what I am currently taking.
the most important test are...
Free T3 (most fell well when this is mid-range or higher)
Free T4 (most fell well when this is mid-range or higher)
Make sure they get the "FREE" and not Total.
also...
Reverse T3 (mine was high)
Cortisol(saliva test)
DHEA (mine was low)
Testosterone(mine was low)
Vit D
B 12
Iron
TSH doesn't correlate with hypo symptom for many.
Thanks Goolara. It amazes me how clued up people are in this forum and I am guessing there is a very strong cultural divide with regards to receiving notes and blood test results. I am in London and there is no such transparency. My specialist did show me his monitor on Monday and started to explain my T3 levels but I soon gave up as I couldn't follow him. I have the records from November which I will post up now I hope you can explain what each T- means!!
Thyroid uptake scan 30% (normal range 1.6-2.2%. TSH receptor antibody 10.7
Free thyroxine 8.1 TSH surpressed FT3 5.48
The 100+++ count? I don't know what hormone. All I was told was that normal patients do not go over 10 or 20 in the count....
And I have seen that I am on a block and replace. What does that even mean? No one explained any of this to me.
I have gone from way way over hyper to very hypo while taking carbimazole 40mg, levoyhyroxine 100mg and eltroxine 25mg. I am on these meds plus propanolol 80mg and Tramadol painkiller 40mg 4 times as day as needed.
I hope this information is useful to you. It is baffling to me as a) I am newly diagnosed and b) I can no longer absorb vast amounts of information quickly. That for me is like walking through mud, hence my cry for help. And I am sorry to be so vague!!!
Any help gratefully received.
And, no. I haven't been tested for Hashimotos...
Thanks very much for replying Erica. I think that as I am relatively new to all of this it must be quite irritating to some when I am being so vague!! I am obviously not doing that on purpose... I just do not have the knowledge. But I will get there soon! Thanks again and take care of yourself!!
Goolarra I don't have all this information but I have scouted for whatever I have. Do please understand that I am new to all of this and I am not being vague to annoy anyone.
Conventional treatment options for Graves' disease include:
* Anti-thyroid medication:
In the US:
- Methimazole [brand name Tapazole]
- Propylthiouracil [PTU]
Approximately 30% with Graves' disease will have a remission after prolonged treatment with anti-thyroid drugs.
* Betablockers
The two following treatment options usually cause permanent hypothyroidism requiring lifelong thyroid hormone therapy:
* RAI therapy
* Surgery [most or all the thyroid gland is removed]
Note: there is the option of Endoscopic Axillary Underarm Thyroidectomy. The underarm endoscopic surgery involves very little bleeding, minimal incisions, and no visible scars in the neck.
***
Herbal remedies used to treat the symptoms of Graves disease include:
Bugleweed (Lycopus virginica)
Lemon balm (Melissa officinalis)
Gypsywort (Lycopus europaeus)
Stephania root (Stephania tetranda)
Motherwort (Leonurus cardica)
Bugleweed is widely used in Europe as an herbal treatment for early stage Graves' disease, often in combination with lemon balm.
Bugleweed may block the action of thyroid stimulating antibodies found in Grave's disease.*
*Auf'mkolk M, Ingbar JC, Kubota K, et al. Extracts and auto-oxidized constituents of certain plants inhibit the receptor-binding and the biological activity of graves' immunoglobulins. Endocrinology. 1985;116:1687–1693.
Selenium supplementation (200 mcg per day) can slow the progression of eye disease and improve quality of life in patients with Graves' disease with mild ocular involvement (Graves' ophthalmopathy).* Dietary wise, brazil nuts have the highest selenium content. Each brazil nut contains between 50 - 90 mcg of selenium depending on the soil.
*Marcocci C, Kahaly GJ, Krassas GE, et al. Selenium and the Course of Mild Graves' Orbitopathy; New England Journal Of Medicine 2011; 364: 1920-31.
"Bugleweed may block the action of thyroid stimulating antibodies found in Grave's disease.*"
Herbals such as this should be used very carefully, when one is already taking an ATM, as too much blocking could create a need for higher doses of the levo. Always consult/inform your doctor when taking these herbs, since medication dosages may need to be adjusted.
Thanks very much for taking the time to reply so carefully and thoroughly. It will take me all of xmas to read and absorb it!! I have just printed it all off and will go through it like a fine toothcomb!! I posted this below and it has some, but not all, of results from tests done in November. Does any of it make sense to you??? many thanks
Thanks Goolara. It amazes me how clued up people are in this forum and I am guessing there is a very strong cultural divide with regards to receiving notes and blood test results. I am in London and there is no such transparency. My specialist did show me his monitor on Monday and started to explain my T3 levels but I soon gave up as I couldn't follow him. I have the records from November which I will post up now I hope you can explain what each T- means!!
Thyroid uptake scan 30% (normal range 1.6-2.2%. TSH receptor antibody 10.7
Free thyroxine 8.1 TSH surpressed FT3 5.48
The 100+++ count? I don't know what hormone. All I was told was that normal patients do not go over 10 or 20 in the count....
And I have seen that I am on a block and replace. What does that even mean? No one explained any of this to me.
I have gone from way way over hyper to very hypo while taking carbimazole 40mg, levoyhyroxine 100mg and eltroxine 25mg. I am on these meds plus propanolol 80mg and Tramadol painkiller 40mg 4 times as day as needed.
I hope this information is useful to you. It is baffling to me as a) I am newly diagnosed and b) I can no longer absorb vast amounts of information quickly. That for me is like walking through mud, hence my cry for help. And I am sorry to be so vague!!!
Any help gratefully received.
And, no. I haven't been tested for Hashimotos...
I've tried to make as much sense of your labs as I can without ranges. Reference ranges vary lab to lab, so you have to post them with results. Ranges will be on your lab report near your results and often in parentheses. If you don't have a printed report, you could ask your doctor's office for the range.
I'm particularly interested in the ranges for:
TSH receptor antibody
FT3
FT4
Erica, how do I find your journals etc?? Thanks and merry xmas. Stay well xxx
Thanks very much Red Star xxxx
Go to my page and scroll down on the left side.
Thyroid 101: T3 and T4 are the primary thyroid hormones. All T4 is made in the thyroid. It's the "storage" form of the thyroid hormones and basically floats around in your bloodstream until your cells need thyroid hormone. However, T3 is the "active" form of the thyroid hormones, the only form your cells can use. Some T3 is made in the thyroid, but most of it, by far, comes from conversion of T4 to T3, and that happens mostly in the liver, although there are lesser sites throughout the body.
TSH is a pituitary hormone. It's only function is as a messenger from the pituitary (master endocrine gland) to the thyroid to tell the thyroid to produce more T4 and T3. TSH is counterintuitive, so the higher it is the more hypo we are, and the lower it is, the more hyper.
"Thyroid uptake scan 30% (normal range 1.6-2.2%. TSH receptor antibody 10.7
Free thyroxine 8.1 TSH surpressed FT3 5.48"
Do you have the reference ("normal") ranges for those tests? Ranges vary lab to lab and units vary country to country, so we have to post results with ranges. A good way to do that is:
Test Result (Reference Range)
FT4 8.1 (0.8-1.8)
I know, we ask a LOT of questions! We're not trying to be difficult, either, we just want to give you the best response we can.
When you had the hormone count over 100, were you on meds and hypO? I'm trying to figure our what it was.
Block and replace is a technique for dealing with a thyroid that is overactive and unpredictable. The person is given an anti-thyroid med (ATM) to block the natural production of hormones in the thyroid. This makes them chemically hypO, and they are then given thyroid hormones to replace what their thyroid is no longer producing. So, your carbimazole is the block, and levothyroxine and eltroxin are the replacement. You take both levo and eltroxin? Levo and eltroxin are both T4 only meds (exactly the same), so I'm just curious why the mix.
Propanolol is a beta blocker that reduces both heart rate and blood pressure. It helps with some of the symptoms only.
So, I'll ask you questions to clarify things. You ask me questions. If I forget to answer something you want to know, ask me again. I don't want to overwhelm you with too much information at once but would prefer to start a dialogue that will give you time to absorb all the information, and I'm sure will generate more questions.
If you have those ranges I asked for, I can explain your results to you a lot better.
One last thing I should mention now is that you should get into the habit of getting a printout of all your thyroid tests and keeping your own history. Thyroid disease is usually for life, and no one keeps our history like we do. Here, in the States, doctors have to provide lab results to patients upon request. You're right, that's not the case in U.K., but most of our U.K. members seem to have a relatively easy time obtaining them.