New to this community

[TrusingInJesus]

Hi Everyone...just learning about this condition as I was diagnosed last year and then had a bit of denial. Want to get better and praying for a definitive solution. I am grateful to be sharing with people who are going through the same thing I am going through-yet sorry that you are. I saw a post that said we should be trying to figure out the cause of our condition-how does one do that? Thanks for helping this newbie!

[pennyannie]

Hello TrustinginJesus and welcome to the forum ;

Grave is an auto immune disease and something has happened to trigger your immune system to attack your body.

Graves is said to be a stress and anxiety driven AI disease and can occur suddenly after a shock to the system, like a car accident or an unexpected death of a loved one - I was physically threatened and verbally abused by a man I employed as my assistant manager and 4 months diagnosed with Graves Disease.

Graves tends to attack the thyroid and eyes and it is is because the thyroid is such a major important gland and the body's engine that the symptoms can be diverse, some considered life threatening, with likely some emotional and psychological impact, whilst other symptoms may seem just a bit odd.

As with everything its a question of degree, and all Graves patients tend to have their own range of symptoms and no two cases exactly same which of course can make it harder to understand and treat by mainstream medical.

Mainstream medical generally prescribe an anti thyroid drug to block your T3 and T4 thyroid hormones rising any further and as your hormones fall back down into range your symptoms should reduce and you should feel more comfortable in your body.

Some patients also need to be prescribed a beta blocker if the heart is involved.

Do you have a letter and the medical evidence of which antibodies were positive and over range at diagnosis - there should be mention of either a TSI ( a thyroid stimulating ) antibody and or a TR ab ( a thyroid receptor blocking ) antibody.

Do you also have your T3 and T4 results and ranges at diagnosis - and can you also share with us where your T3 and T4 are now.

Do you still have symptoms or are you now on just a maintenance dose of the AT drug and what other medication are you currently taking.

When metabolism is running too fast or too slow it can become difficult to extract your essential core strength nutrients from your food so we also suggest you get your ferritin, folate, B12 and vitamin D levels run alongside your TSH, T3 and T4 readings.

In the UK the NHS generally allocate a 15-18 month window for treatment with the AT drug with a view to then see if you can stop the AT meds and be well : however if your antibodies are still raging this is a pretty pointless exercise and just makes the patient like they are a failure and serves no sensible purpose.

I don't know of the procedures in the Sates so can't offer much further advice but the most recent research is suggesting that the longer you stay on the AT drugs the better your chances for finding remission :

pubmed.ncbi.nlm.nih.gov/338...

You may like to read around Graves on the Elaine Moore Graves Disease Foundation and it is Stateside and the most well rounded website I found on all things Graves.

There are sections on more holistic and alternative treatment options. and how it's important for the person dealing with Graves to look at reducing life stressors and maybe look towards other work alternatives, and learning how to relax and enjoy what pleases them and even be a little more selfish with their time.

That might sound like a strange thing to write but it resonated with me when trying to understand why I had Graves Disease - and you need to read it in context to understand it better - ( courtesy of Elaine Moore ) : put another way - try not to overextend yourself ;

Elaine has Graves and is a well recognised authority on Graves and there is an open platform much like this forum where you can ask questions of the community, and being Stateside you may even find a support network much closer to you and in your zip code and time zone.

[TrusingInJesus in reply to pennyannie]

Hi Pennyannie-Thanks so much for this quick reply. In 2/2021 my TSH was less than .01, ranges: 0.45-4.50

T4 free was 2.8,ranges: 0.8-1.7

T3 free was 7.2,ranges; 2.0-4.8

TPO was grater than 1300, ranges: less than or equal to 60

In December 2021

my TSH was still less than .01,

T4 free was 2.1,

T3 Free was 4.6

TPO was greater than 1300

I will look up Elaine Moore-yes I do have some stressors in my life.

Do you ever hear of people being cured of Graves? My doc insisted I go on methinamizole so I did -also doing a russian remedy with vodka/walnut the link is here: youtube.com/watch?v=0O8PW43...(Not working as expected?)

I noticed my ranges went down in December but my symptoms increased. Also, I had a naturopath prescribe iodine and was taking that from August-December in 2021

I really feel so alone in this-thanks so much for reaching out to me so quickly Pennyannie.

[pennyannie in reply to TrusingInJesus]

There is no cure for Graves, but please read the link I've sent you as there are people who are ok and fine on long term AT medication, one of which is Methinamizole , along with Carbimazole and Propylthiouracil - PTU for short.

TPO antibodies are not exclusive to Graves Disease and generally seen in people suffering from Hashimoto's auto immune thyroid disease.

You should have had a positive and over range TSI or TR ab - before treatment with the AT drug was commenced as these are the antibodies that are unique to Graves Disease.

What were your initial blood test results and ranges at diagnosis before AT drugs were prescribed ?

I like walnuts and have tried vodka but never for any medicinal benefits :

I don't think you should be taking iodine - does our doctor know this ?

I think it will help you tremendously getting onto the Elaine Moore platform and finding other people within your vicinity as this way you will have a support network on your doorstep rather than a continent away.

[TrusingInJesus in reply to pennyannie]

Yes the Trab was 4.57 ranges less than or equal to 2.00.I stopped the iodine 2 months ago

Thanks- I have visited the website and will start poking around there too.

My originals were in 2/2021 that I cited in my last post-Doc put me on the AT then and then I went to the Mayo clinic and they said the only alternative was removal of entire thyroid. I did not do that. I was fine through summer then it started acting up again. The Mayo Clinic doc took me off the AT so he could run tests( I guess). I never went back on until 2 days ago when I spoke with my GP about my december blood tests. I have an appointment with a endocrinologist but not until March.

[pennyannie in reply to TrusingInJesus]

Hey there :

Just checking in - I hope you found the forum on Elaine Moore and that you now have 2 strings to follow on your thyroid bow.

Glad you decided to keep your thyroid and maybe through Elaine's forum you will find local people and also a recommended endocrinologist and / or specialist.

Keep us in the loop though with the time difference this can get a bit difficult :

[4TheGudDaz]

Hello There! I'm sorry that you've been diagnosed with what I take is Graves disease or very similar? I believe I was born with the right concoction of genes from a set of anxiety ridden parents especially my father who was a true sweetie but was extremely sensitive to others emotions & it would effect him in turn effecting any health issue that was an existing problem. I lived with this "question" as a young child throughout my life, wondering why I had such bad allergies as a baby and wasn't "thriving" so they switched me to goat's milk that thankfully my aunt had a few of which supplied me with the necessary sustenance (with goat hairs, yuck). I won't go into all the other circumstances that continued popping up until actually diagnosed w/Graves. At about age of 23, my anxiety attacks went off the hook! I was going through a nasty divorce after him leaving for Median, Columbia for 6 mos., just worked and took care of my twin boys and daughter and strangely found true love which is where I found myself one evening in a panic as I began hallucinating what I was seeing on the television, shaking all over, couldn't button shirt, etc. This had occurred for several years prior, anxiety attacks with no rhyme or reason? Doctors just kept giving me pills, E.R. first time embarrassed me, making fun of my being so young with such bad anxiety, very sarcastic. Too bad they didn't take my BP (SOP!?), usually I was in 120 range or less top #, this night it was over 180.... My face was numb which scared me all the more. Went on for years like this, scared to get up in the mornings as I had discovered I would shake all over upon waking and wouldn't settle until late afternoon and by nightfall I would be FINE. It was as if my "battery" wasn't charging correctly & at same periods as others. It was years of nightmares which I chose to stay awake through the night if I wanted to be up and ready to go to work as I was an Insurance Agent with State Farm later Lloyd's of London. These were very stressful but also fulfilling careers, as long as I was moving and fully charged all was well, in fact I'd stay til 11 on Friday evenings often, employees thought I was mad! Just have to find what works for you until you keep bothering a professional enough they actually do tests instead of pills to find out why so out of whack. Nobody, but nobody ever thought to do a simple TSH test especially with the great insurance I had! Lol. I had been very bright in school and put w/others 3-5 yrs older, went well all ways except bored. Another clue, ADHD. Many accidents during these anxiety attacks, daily life with a broken this or that, operation for cervical cancer leaving ovaries, always had awful cramps, had migraines since 12, finally subsided about same time anxiety attacks hit. So I'll move up to time I had proof I was SICK. Had relocated, one day woke up and eyes were bulging from sockets. Children told me to go to Dr then. I did, immediately sent hosp. where I took a pill, was put in a room, heard a noise like a geiger counter and soon afterwards exited. Went to where techs were working on diagnostics and the tech working on me said you're lucky you didn't "stroke out". Wasn't told much more except I wouldn't need to take any supplements for thyroid. 2 days later I was passing out, had me eat chocolate? yes, really and get to their clinic pronto. After finally being diagnosed w/Graves disease which was reason for anxiety and most all other health issues I had all my life. I mean it only took the disease moving my eyes from orbits to see what problem was?!! Since then it has never been stable, along with unstable thyroid, many health issues that the thyroid regulates, that would be about everything, would fall out of sync much as I was towards not being in sync with day/night life. After 30odd years of dealing with this, I've discovered I have the strangest chemical makeup controlled by an overactive/highly susceptible to triggers that amped up my whole system. When I would get bouncing off the walls I found the ADHD meds pain clinic had prescribed for me actually worked better for anxiety and sleeping than any of the anxiety meds taken for years I couldn't stand yet was always scared to death after losing 2 days of Xanax, the with drawls on top of anxiety was like a trip to hell as imagined. I knew I never wanted anything to have such control over me until I had a long rationale talk with my doctor here now for 20 years. He checks my blood levels regularly, along with all the strange illnesses I pop up with, he looks into deeply knowing they will probably be related to thyroid. I now have muscle twitches, nice word, twitches, more like someone is practicing hitting a ball from within my muscles in legs, arms, back, stomach, etc. All the anxiety led to muscle clenching which worsens all plus gave me worse what I was born with and genetically gifted, IBD, diverticulitous which is the most concerning problem currently. Stool sample sent through mail, positive for genetic probability for cancer? Then Covid came, lately thought I had food poisoning but only felt like diahrea extremely painful as if blowing out feces with power gas! Once finished found bright blood covering tissue. My left side to where my stomach & intestines meet I believe ached and a week later it happened again but worse. All the toilet issues were the same except for after bleeding the back side of me up further from opening felt like someone had taken a razor or knife and cut at the back bottom near end of colon an open wound. It hurt terribly, laying down, sitting up worse! I was in this type of shape for over 4 days with little to eat, plenty of fluid though. I could have taken enough pain meds that would have killed me but it wouldn't have touched the pain, so I luckily was able to take my Adderrall which helps w/my pain and helps put me to sleep. I took a Valium too as that seemed to work well on spasms that felt part of "wound"? Saw Dr, I promised him I would get the colonoscopy & we both have crossed our fingers. That was due to my BP so abnormally high for me in 20 yrs, pale look, weak, obvious that was where the problem was now. So I currently await the date with no real fear. I have had so many health issues, ever heard of "shrinking brain syndrome"? Me neither. But it is usually caused from trauma, such as from a motorcycle accident but too long ago w/too many x-rays showing nothing before. I believe with so much anxiety in my life and my system built for working in high gear (mentally, emotionally, definitely not physically) major traumas throughout my life have been a contributing factor to the brain syndrome. There is so much more but that would then be a novel, You got the novella. Hope any of this helps. If you have any other questions or would like to add anything please feel free to respond. The best advice I can offer is take it easy, take care of you first, try & maintain a stress free area as much as possible, plenty of sleep (whenever you can get it, just get it) exercise! I hate that word but is our body's best friend and it really does help with some relief of pain, that is if it isn't hitting 9/10! Keep good company around you that are uplifting, that can be you too! It's amazing how bad we can feel and suddenly we see an old friend we enjoy talking with and later notice a marked change in our overall health. The brain runs the body with help and invaders to deal with constantly. What you can do to keep your mind & body as content as possible can and with practice, will become something you can have your brain recall in moments of stress. As with most things in life, there are always changes. It's how we handle them that colors what/how we perceive our life. We only get one, rest assured that if you take care of yourself and find good medical pros to do the same, you'll be fine with a good team backing you! Really, I never thought I'd get there but I have and better than I would have imagined The best of luck to you and God Bless. These autoimmune disorders are sneaky, sneaky. You just have to learn as much as you can, stay up to date on new studies and meds because we do need to assist the doctor. As good as they are sometimes they can't keep up with some of these immune problems as they are a puzzle even to ourselves, there's too much at stake to lose and so much more you can overcome to enjoy your life. Listen to your body and do as it whispers before it has to yell!

[PurpleNails]

Do you currently take an anti thyroid medication such as carbimazole or PTU? What dose? Thyroid levels should be checked regularly around 6 weekly until stable, are you tested to a schedule?

When testing thyroid function it involves TSH FT4 & FT3. Medication needs to be adjusted by FT4 & FT3 not TSH.

Antibodies should also be tested TPO & TG antibodies and to confirm Graves’ disease TSI or Trab.

Also important to test nutrients which are often low when thyroid is not at a healthy level. Folate, ferritin, B12 & Vitamin D? You need them optimal not just in range.

Share results and lab ranges (ranges vary to need to be included) and member can advise further.

You may get more replies on the main Thyroid forum which has many more members.

Link to Elaine more site elaine-moore.com/