[Harpy]

in reply to: Is it bad to drink coffee #1171383

Coffee is a diuretic and it will also take nutrients out of the body as well as fluids, if you can reduce consumption, do so, try some herbal teas, I know they are not the same, but not diuretics.
Now this is also on the basis that you don’t develop angst, so reduce if you can, have one and enjoy it when you do really want one, don’t get the guilts afterwards.
Be good to yourself physically, but even more importantly be good to yourself mentally and emotionally.

[Harpy]

in reply to: grave affecting pms? #1171398

Women always love it when a guy jumps in on these conversations, but I can tell you I have been on the other end of that look, and it aint pretty.
We found something that worked for us, and it didn’t involve me leaving the house for a week, but as i am a bit of a wordy Guy, some background first.

You come out of Mensus, thank god that’s done, get back to life now, your body begins to prepare the uterus for the new lining in anticipation of ovulation, this requires a lot of work and nutrients as the lining is constructed, somwhere around mid cycle ovulation takes place and the egg is released, hormonal balances change and your body temp also increases, just as your uterus is flat out completing the “Olympic Stadium” for the big race. The body temp stays up in anticipation of potential fertalization and subsequent incubation, when it becomes evident (hormonally) that this hasn’t taken place, then blood flow to the uterus lining is constricted, body temp falls, contractions begin, Mensus starts again and the old lining is shed.

The blood that leaves during mensus is primarily old lining and is not depleting the body of iron resources at that stage. The time when the Uterus is drawing the most nutrients & energy from the body is just before & after ovulation.

So I proposed to my partner one day, when she gave me that look & we were not around any sharp objects, that I would cook her up a Nice Juicy steak (iron & protein), I garnished this with some salad & spinach (plant iron absorbs better in the presence of proteins), then also gave her the iron suppliment she uses (Spatone, iron water satchel) in a glass of Orange juice (Iron absorbs better in the presence of citric acid), she tolerated me, we ate quietly & later that evening she was actually nice to me.

Yes just cooking for her was nice, but this became tradition for quite a while in mid cycle, usually over 2 or 3 days 2 meals like this and she was fine. We have fallen out of the habit a bit lately, but during the years when she was stabilising her hormone levels, it was a ritual.
I also tracked her cycle as this was part of our GD monitoring process, along with Body temp & pulse rate, so i new when to go out and buy some nice juicy red meat.

I will prepare to duck now.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170876

keesephoto wrote:

Kimberly wrote:

Participants are certainly welcome to visit other sites that are *not* governed by an active Board of Directors and have more lenient posting policies.

When ya’ll say this I always feel like you’re saying “either do what we say or go elsewhere”. Sort of makes me feel all hitler-ish and controlling of our freedom of speech.
Anyway, if I get upset this feeling it gives me is why, now you know how it comes off to some I spose.

Maybe just a bit harsh, I do understand your frustration to a degree, but Kimberly has responded appropriately and to some degree is obligated to inform you of the state of play, there must always be a framework to work within and for whatever reasons this is the framework that we have to work with here.
As Kimberly indicated you can always go elswhere for other discussions, but like the old saying goes, “Buyer Beware”, here even though discussion is restricted to some degree, it is vetted and advice is relatively safe, elswhere you will need to maintain your own QA systems, that’s not to say everything outside this board is unreliable, just that you will have to do the filtering of information yourself.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170875

Gatorgirly
Thank you re your pointing out some dubious links as others did and I have taken that on board and will be more rigorous in the future.

You made the initial request for verifiable information regarding the impact of environmental factors on the expression of GD in genetically predisposed individuals. Most of those links were specifically in relation to that question.
As I understand it there is a significant role played by environmental conditions in the actual expression of GD, some of these factors have been identified, one of these being high levels of iodine intake, others like polutants & toxins are suspected, but more study is required and there is likely more that have not even been considered or identified.

So therefore (In my Opinion)
If it is not a case of pure genetic roulette, and environment plays a significant role in the expression of GD or not, then surely this is the area that needs to be studied as much if not more than the remedial actions of Surgery, RAI, ATD’s or new treatments. Not just in regards to prevention, but also in regards to longer term stable remission. Genetics we do not have the ability to change, but we do have the ability to modify our environment, and if we can improve our health, win:win situation for both the individual as well as the society.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170874

Kimberly
Thank you for clarifying the framework for discussions on this board,
The links I put up were quick searches, so I was negligent in considering the source data and will try to be more rigorous in the future. Not sure what happened there, some of the links were corrupted in the posting process as well, so i will also go back and check the effectiveness of the links in the future also.
Re the new developements in treatments, understand this is only a potential, that may take years and may not even happen.

So if you have a thyroid condition do not withhold treatment on the basis of a “Holy Grail” cure around the corner, get treatment ASAP

I appreciate everyones patience and again reiterate that I understand and respect the position this organisation holds and as Kimberly said there is both Pro’s and Con’s no matter how you set your guidelines.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170873

Bobbi
Thank you for your clarification on the definition of disease, my intention was not to mislead anyone and I will try to be more careful in the way I word things in the future.
But if we actually examine the effect, the thyroids function is to produce thyroid hormone based on the signals it recieves from the Hypothalmus via the Pituitary Gland and it’s excretion of TSH. The TSH receptors in the thyroid do not have the ability to distinguish the difference between TSH or TSH receptor antibodies, so when the antibodies take up active sites in the receptors and stimulate the thyroid to produce T4 & T3, it does so to the best of it’s capability and as it recieves more stimulation it goes even harder to produce hormones, it gets run down and may go to full burn out, but it is doing exactly what it was designed to do.
From Wikipedia, Hypothalamic–pituitary–thyroid axis
(If this is considered unreliable information I’m sure I can extract the same info from a recognised medical journal)

“The hypothalamus senses low circulating levels of thyroid hormone (T3 and T4) and responds by releasing thyrotropin-releasing hormone (TRH). The TRH stimulates the pituitary to produce thyroid-stimulating hormone (TSH). The TSH, in turn, stimulates the thyroid to produce thyroid hormone until levels in the blood return to normal. Thyroid hormone exerts negative feedback control over the hypothalamus as well as anterior pituitary, thus controlling the release of both TRH from hypothalamus and TSH from anterior pituitary gland.”

The thyroid does not have the ability to actually regulate hormone levels, it just produces them, the regulation role lies axis described above, in addition to that there are other inputs (don’t have a specific reference), as yet unidentified that these glands recieve to adjust levels further which result in the fluctuations seen in daily cycles.
So, therefore if the Thyroid is considered “diseased”, then so must be the entire axis, because the Hypothalmus & Pituitary are failing in their role of regulating thyroid hormone.

I personally feel it is more misleading by the convential medical practice to give the impression that the Hyperthyroid condition, TED, Pretibial Myxedema and the variety of other symptoms expressed in graves are unrelated effects and are treated as independant of each other.
Do any of these occur without the presence of the TSH receptor antibodies?
Are they seperate diseases or different symptoms of the same disease?
This is how I understand it, if there is a flaw in my understanding, please correct me.
I am not being facetious or sarcastic, this is a genuine comment, always on the look out for new information, I know what I know is not absolutely right and can always be improved upon.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170865

http://elaine-moore.suite101.com/thyroiddiseasetriggers-a516#ixzz1suQPEQt0
This article describes the known and suspected triggers of autoimmune thyroid disease. Known triggers include cigarette smoke, stress, low selenium levels, seasonal and food allergies, sex steroids particularly estrogens, excess dietary iodine, and trauma. Thyroid cells may also be injured by oxidative stress related to the immune system’s response to low antioxidant levels. Suspected environmental triggers include retroviruses, Yersinia and other enteric bacteria, and aspartame in artificial sweeteners. The immune mechanisms that contribute to disease from environmental agents include: increased cell destruction or apoptosis, thyroid autoantibody production, inflammation as white blood cells invade thyroid tissue, and the production of cytotoxic (destructive to cells) immune system chemicals known as cytokines.

http://thyroid.about.com/cs/hyperthyrdgraves/a/10things.htmhttp://thyroid.about.com/cs/hyperthyrdgraves/a/10things.htm
Graves’ disease is caused by a combination of genetic and environmental factors. Patients with GD have a certain combination of genes that make them susceptible to disease development when they’re exposed to certain environmental triggers.
According to the College of American Pathologists, stress is the major trigger for GD. Other triggers include excess iodine, estrogens, and certain chemicals, such as aspartame. Dietary iodine in excess of 150 mcg daily can trigger GD in susceptible people. The average American diet provides 300-700 mcg of iodine daily, and fast food diets provide more than 1,000 mcg of iodine daily.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180562/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180562/
While the significantly higher concordance rate for Graves disease in monozygotic twins points to a strong genetic susceptibility, the fact that the concordance rate in monozygotic twins was in fact only approximately 30% rather than 90% may point to significant environmental influences (99, 119). The most important non genetic potential risk factors contributing to the etiology of AITD, including TSHR autoimmunity, are thought to be dietary iodine intake (95, 120), smoking (121, 122), stress (123, 124), pregnancy, exposure to radiation, and infection (119, 124, 125). All of these suggest environmental triggers; however, their association with AITD requires further investigation and validation.

http://www.nevadathyroidinstitute.com/articles_generalinfo_005.htmlhttp://www.nevadathyroidinstitute.com/articles_generalinfo_005.html

https://segue.middlebury.edu/repository/viewfile/polyphony-repository___repository_id/edu.middlebury.segue.sites_repository/polyphony-repository___asset_id/1139961/polyphony-repository___record_id/1139962/polyphony-repository___file_name/Grave%20Stress.pdf
Article above about Stress & Thyroid Autoimmunity.

http://www.suite101.com/news/advances-in-graves-disease-treatment-a354210
The above link is specifically about new research for treatment possibilities with GD.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170864

Thanks for that gatorgirly,
Glad to hear that you got to a good place for yourself, but many are not so lucky, even just the mere fact of being diagnosed and having to digest that, without the complications of brain fog etc. is bad enough and most need some time to absorb it.
I thought I made it clear, that it was my position, belief, opinion etc.
But then again, isn’t most everything written here and also that professed by the medical profession of much the same ilk.
You mentioned your specialists, did you question them in detail, i.e. the third degree? My experience in that in regard to Graves causes, when pressed all reverted to the convenient hereditary disposition – full stop. Bit lame IMHO. The medical profession tend to present themselves as the all knowing, but under cross examination finally admit there is still a very big question surrounding Graves causes and cures.
What is fact:
It is not a disease of the thyroid, it is an autoimmune disease where Thyroid Receptor antibodies antagonise TSH receptors in the thyroid.
TSH receptors are present throughout the body, not just the thyroid, they are found in the brain, pituiatory, bones, muscles and other places, these other receptors are just as prone to antibody stimulation as the thyroid.
The antibodies are normally present in most individuals, but in low numbers and do not manifest as a negative condition.
They increase in numbers when certain “silent” genes have their protective protein sheath removed and become active, causing an increase in production of the antibodies.
Why the above occurs, no one knows yet, but more evidence is coming to light which implicates lifestyle factors.
I don’t know how far this conversation will be allowed to go on, have a starnge feeling like admin is ready to pull the plug at any point.
There is plenty of information out there, I often see written, “don’t believe everything you read on the internet”, aren’t we conversing on the internet here?
Elaine Moore has written many books on autoimmunity and Graves, her site is a great resource, all her articles are referenced with the relevant medical studies as source data.
You do have to be discerning and do lots of reading to filter through the vast amount of opinion to get down to the facts, from which you can then form an educated opinion.
I haven’t got the relevant info infront of me, saved heaps of files & favorites etc, but just did a quick search on environmental factors & Graves triggers, will post in next post, not sure what the word limit is per post.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170862

Thanks for the responses & I appreciate all the input.
Just like to state my position very clearly here, I do not recommend anyone go this alone on a purely herbal based & naturopathic path.
I couldn’t tally all the time I have spent scouring information with various discussion groups and reading scientific papers, articles & variety of other sources, and as Kimberly has clearly pointed out some of these sources may have recommendations that may well have dire consequences.
My position is that as much as possible anyone diagnosed with Graves, if at all possible should undertake a course of ATD’s as a first step for at least 18-24 months to get the hyperthyroid condition under control, provided they do not have complicating factors or severe alergic reactions.
My reason for this is because of all the associated symptoms, like the rage, mental fog & erratic fears that I believe makes it impossible for anyone to make a truly informed decision on Surgery or RAI, I recognise that there is also a risk with ATD’s that individuals must take into account, but this is generally for longer term use.
Once an individual has the Hyper symptoms calmed down, they are then in a better position to absorb information about the condition, and what the potential ramifications of their decisions are going forward.
There is so much more to this condition, it affects more parts of the body than the medical profession is aware of or even willing to admit that they don’t know the full story. The thyroid is just another victim of the autoimmune condition, it is not the culprit.
It is an extremely difficult disease to contend with even when you have a lot of support, so I am not downplaying the severity of the condition in the least.
But in saying that, there was one lady I spoke to, who said she just wished it would go away so she could go back to her old carefree party life, my response was, it was that life which put you here & if you are not prepared to change that, then you will be back here.
Doing all the right things, diet, exercise, stress management is all good, there are many suppliments & herbs that can support you in the process, but there will be a fundamental aspect of yourself that needs to shift for you to get through the process, that’s not to say you will be rid of Graves, but you will be in greater control. I suppose it’s a bit like letting go of the victim mentality, yes there is an appropriate time period to grieve for what you have lost, but at some point you need to let the past go and actively move forward.
This shift in attitude is essential for you to have a positive outcome, whichever path you feel is appropriate for yourself, whether that be ATD’s, Surgery or RAI.
Whether you achieve full remission, relapse or not, the Graves will always be a part of you and more than likely already was even before, you just weren’t aware of it.
I hope for positive outcomes for everyone touched by this condition and am always saddened everytime I read of another Newbie diagnosed.
Always more to say and never enough time, positive wishes to you all.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170856

Thanks for the responses, & will keep in touch with progress and yes, snelsen, understand entirely that the process is a bit different for everyone.
From what I have seen and read, average remission from Graves using ATD’s is 4-5 years, so my partner is in that category, some achieve positive results in 1-2 years, and some in 8-10 years & there are others, whom for whatever reason do not gain positive results from using ATD’s.
I tend to hold a slightly different view to many others, in that I believe that all the thyroid manifestations of Hypo, Hyper & Hashis, along with the eye disease and shin problems are all caused by the same autoimmune condition and merely present in a different mix of symptoms in different individuals. Unless the underlying autoimmune condition is addressed, then the disease will continue manifest in different ways.
What I have said to my partner & others is that once you get graves, or any other autoimmune disease, then it is yours for life, even if you achieve remission, it will always be there as a part of you, and until you actually embrace the fact, you can not truly move forward. Not to say that everyone will have a full remission, or that my partner will not have a relapse, but we will cross that bridge when we get there.
My partner sometimes gets a bit frustrated with the medical system, but from what I have seen it is not the system that is at fault, it is the population, they are the ones that the system is tailored to. Here in Australia most people go to the doctor and want a quick fix, the young pimple faced doctor says you need to change some things in your life, diet, attitude, activity etc. & the patients response is can’t you just give me some pills to fix it? Two or three responses like this and the doctor gives up and just pulls out the pad, presribes half a dozen medications, then goes to the free lunch with the drug reps, and drinks a bottle of whiskey & smokes a pack of cigarettes at night for penance.
If all patients said NO, I don’t want a quick fix, I want a permanent fix & I am willing to contribute fully in this partnership so that I can regain my health as much as possible, then the system would change.
I know this doesn’t help those currently dealing with an inadequate system & I can’t offer any more than our own experience, and that is we dedicated a good 5 years to this process so far, yes the rest of our life continued, but we both changed many things in our life, and also tackled a lot of personal demons. It’s not until you actually go through the process of actually changing yourself internally that you truly understand what that means, and for everyone it is different, but your ego will fight you every step of the way.
Anyway, probably getting a bit philosophical here, I do hope someone can gleam some good from what I write.

[Harpy]

in reply to: Treating Graves ONLY with Nutrtion #1170656

Just put up a post re my partner ,
“Finally good numbers after 5+ years of treatment”
As you have probably realised, there is so much more not known about this family of conditions than is actually known about them.
My partner has been on PTU for 5+ years and for the last 3-4 of those she has also been on a comprehensive nutritional and supplement regimen put together by a Naturopath, with approval from the Endo & in addition to that a process of lifestyle and behavioural changes (stress management).
I think the stress factor is probably a primary issue, most people don’t realise stress is rarely external, it is about how we respond to external stimuli and as this is an engrained behaviour, likely from childhood, you really need to dig deep and start unwrapping that onion and learn to respond in more appropriate ways. Just taking yourself out of stressful situations is avoiding the core issue, stress is a symptom, the response is the actual disease. Just like the thyroid condition is merely a symptom of the autoimmune disease.
I needed to say that, because if you are in a healthy state of mind, your body can find nutrition in burgers & pizza, but if not, no amount of whole foods can help you. So if you want to go the multiprong approach to heal yourself, then ensure you incorporate a program that includes stress management(not as simple as you might think), physical exercise, nutrition and in my opinion from what I have read most people would benefit from using ATD’s to get the antibodies under control. Become more familiar with your body,
my partner has been checking pulse & body temp twice daily to keep an eye on her body & I have 3 years of records, apart from possibly warning you of a swing into either Hyper or Hypo, it is a routine stop when you also contemplate how you are actually feeling, she has also kept a symptoms/feelings journal for this same period & also tracking menstral cycle as another indicator, also because body temp does change with the point in the cycle.
All this is a repeated reminder of the goal and helps to keep her focussed, virtually a full time job, but that’s just the way it is, you gotta be serious if you want serious results.

[Harpy]

in reply to: Newly Diagnosed with Graves in need of some HELP! #1063789

Hey Krystal
You’ve had some great advice, I’d just like to add a couple of things, are you taking Beta Blockers (Atenol, Propylanol etc.) as well as the Methimazole, they are usually prescribed at the start to get some of the symptoms under control until the Methimazole has had time to take effect and start to reduce your thyroid hormone production.
The cascade of symptoms is a real pain, because they feed off each other, all will subside over time, at this stage just try to be, knowing that all these things will pass, try to eat well and get good rest.

Anxiety
Your mention of the severe anxiety, triggered my response, I recently experienced some new knowledge of GD & anxiety.
Does your anxiety have any pattern?, although there is a certain amount of anxiety which can be attributed to GD, with the behaviour of anxiety it often takes off on it’s own. A friend of mine started the GD journey back in May and she also had the anxiety issues (severe morning anxiety, evenings good), although she got all the other symptoms under control the severe anxiety was persistant, she had tried a variety of medications and none helped. We eventually did some research on just anxiety and found in many cases it is just a conditional response, because it feels so bad we develop a fear of anxiety and it is fear which brings it on and this then becomes a self fulfilling prophecy. Once she had this knowledge and began the process of dealing with the fear of anxiety by challenging it, it virtually dissipated overnight, it has been a bit over a week now and she still gets the occassional bout but these last only a couple of minutes not the whole day, I have a bunch of techniques I have collated regarding anxiety management, too much for a single post though.

Just remember Krystal, you are not the first and you won’t be the last, as people have mentioned you are now a member of an exclusive club, albeit not by choice, all your symptoms will pass and you will feel better.

[Harpy]

in reply to: Allergy to Iodine #1063902

Shirley
I’m not sure what you mean by the iodine allergy and not being able to use ATD’s (MMI & PTU),
From my understanding ATD’s do not contain iodine and would have no bearing on an iodine allergy if there is one.

On another front I did a little more research and the indication is that "Iodine Allergy" is a misnomer in most cases, in very, very rare cases some people will show a reaction (rash etc.) to topical application on the skin but even in these cases ingestion of iodine is usually not an issue, so an actual allergy to consuming iodine is almost non existant.
It appears that what is often termed iodine allergies is actually an allergy to other compounds in seafood or in uptake scans, such as proteins and dyes, they just got associated with iodine incorrectly because of the high iodine content in seafood and the uptake scans.
Iodine can still cause be toxic in very high doses, but that reaction only occurs in megadoses many times in excess of normal daily intake, such as when high doses of potassium iodide is used to block the thyroid, as an adjunct to other treatment therapies.
So as I understand it currently, there is no such thing as an Iodine allergy in terms of consuming iodine,
If anyone has any literature to the contrary, then I would be interested in seeing it as I’m always after new knowledge.

[Harpy]

in reply to: Allergy to Iodine #1063895

Try Google "autoimmune thyroid iodine toxicity", this should come up with a couple of hits that you can get some info from.
Recent research has suggested that excessive iodine intake can both agravate and initiate autoimmune thyroid disease, and can also elicit alergic reactions in susceptable people. The indications are that iodine intake may need to be tailored more specifically to different populations depending on their iodine tolerance, for example japanese populations that have a long history of high iodine intake have a much higher tolerance to iodine than inland european populations where iodine intake has been historically low.
So there is an issue with excessive iodine intake, but the difficulty is knowing what your intake should be, if you have or have had a hyperthyroid condition then avoiding excessive iodine intake like iodised salt, seaweed etc. is probably a good idea, but your iodine intake still needs to be adequate for normal function.

[Harpy]

in reply to: new to aving Graves disease #1063954

Sheila
Don’t be terrified, GD is definately no picnic, but you will have a definate diagnosis of your condition and then you can start to put in the appropriate steps to heal your body.
You will come through this process and feel good again, just remain positive and you will keep moving forward.
You should be tested for Free T3, Free T4, TSH and also for thyroid antibodies, along with this there should be a routine set of blood tests done including liver function tests.
Your specialist should explain to you what your treatment options are, the main three are Antithyroid medication, Radioactive iodine (RAI) and Surgery, you will most likely start with the medication to get your hormone levels down and then choose to continue with that or go over to either RAI or Surgery, each of the three options has pro’s and cons, you will learn more of this as you go along your process.

[Author]

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