[Harpy]

in reply to: Methimazole & Symptoms #1171555

If you search “roller coaster” here or any other GD forum, you will get numerous hits, yes it does fluctuate early in the treatment. The degree of time and exact pattern vary between individuals.
My partner found it took nearly 12 months for symptoms to fully subside, but then hormone levels continued to fluctuate for a further 12 months until they stabilised and began a predictable process.

As regarding thyroid storm while on ATD’s, I have not heard of it happening, but I can’t say conclusively that it couldn’t happen.

My partner recorded her resting heart rate morning and night, as an indicator if her levels should start to increase, she also kept a daily symptoms, “how I felt today” diary, so she could track progress and see overall changes.
For most people there is a “two steps forward, one step back” pattern to their progress.

[Harpy]

in reply to: Severe Stress due to Selfish Mother – Not good for Graves #1171543

It sounds like your mother has never learnt boundaries, she has behaved this way all her life and she has been allowed to get away with it, it is not healthy for you and it is not healthy for her either. She needs to understand that her actions do have ramifications, parental relationships are always difficult but there are a few of us who do have healthy positive relationships with their parents though I’m not one of the lucky few.
As your mother is unaware or unwilling, then it will be up to you to set the ground rules, it is not a negotiable decision, if you make a decision & tell her how things will be, you don’t have to defend that or argue about it, her ranting is just her ranting. It is the argument, when you feel you are under attack and have to defend yourself that wears you down, if you do not take the bait, do not respond to the argument in anyway, no matter how wicked the words are, your energy is not worth wasting there, she will run out of steam and you won’t even raise a sweat. Her first feeling will be of victory, then she will start to question why you are still being civil & polite, then she will realise that you have given up nothing, then she’ll likely go at it again, but each time she will realise that it isn’t getting her any power over you.
Basically that is a paraphrased description of my relationship with my father, we still continue on in this way, but the intensity is a fraction of what it used to be and I don’t feel drained after a visit, he is slowly starting to understand he has no power over me and we are slowly moving towards an adult relationship, somehow though I don’t think we will ever get there fully.

[Harpy]

in reply to: The thyroid and gluten #1061160

Congrats
Allways great to hear a positive story, hope everything continues in a positive direction, read somewhere one GD patient, their signature was, “Two steps forward, one step back”
There will often be little hiccups on the way, but that’s really no different to everyones life is it.
Good luck with everything, and yes, please do stay in touch.

[Harpy]

in reply to: Long term Methamazole use? #1171478

Just stumbled across this study on long term Methimazole use:
Effect of long-term continuous methimazole treatment
of hyperthyroidism: comparison with radioiodine

Basically, ballpark numbers:
500 GD patients started trial on Methimazole
About 40 dropped out before the 18 months, chose another path.
After 18 months all taken of Methamazole.
Within 12 months about 100 relapsed
41 had RAI and continued in trial
26 continued with Methamazole.
the rest dropped out and went down different treatment paths.
Follow up after 10 years, showed both groups had some minor negative effects, but there were no major side effects in either group, the overall cost of treatment for the Methamazole was slightly less than the RAI, but not significant.

There was no detail about what the outcomes were of the majority, about 360 that did not relapse in the 12 month period.

Not a super large trial, but it is some info.

[Harpy]

in reply to: Stress & Graves’ #1171497

As per above, thinking of you, really tough trot. Relationship breakdown brings all kinds of complications without even considering the issues your father is going through and having to come to terms with these things at the same time.

Just speaking in a generalised way, trying to remain sensitive to your situation.
GD can be like a magnifying glass when it comes to stress, so what may well happen is your perceptions of the event may be heightened and because your body is also sensitized then the physiological response is even more exagerated.

Is there any possibility that you can either resolve your legal issues quicker or defer them on compassionate grounds based on the situation with your father, primarily so that you can dedicate appropriate quality time with your father.

Dealing with stress is always difficult because most people find themselves in the same type of situation as you, and don’t feel they can allocate any time to learning how to deal with stress better.

Try to prioritise the issues in your life, outside of the two major issues you have mentioned, is there any lesser issues that you can resolve and get off your plate, look at the smaller issues, can you tick them off, cross them off, push them way back, in this way you will be able to pay more attention to the really important things and you will feel a little less overwhelmed.
The thoughts going through your head at this time will be wearing you down, may sound bad, but dedicate some small moments not thinking about anything else but the present moment (not your situation), basically do not think, just observe what is around you, the sights, sounds, smells, sensations, my partner does a lot of walking and it is great for just this reason, as well as moving the blood around and dissipating a little tension.

I won’t post any links, others have done that & specific GD Stress links don’t come to mind right now.

You didn’t mention anything about your Thyroid hormone levels are they all in a good range?

[Harpy]

in reply to: Diagnosed Tuesday… Where to go from here… #1171502

As others have said,
It is iportant that you get the Beta Blockers ASAP to control the hyper symptoms, primarily the heart rate.
Along with all the good information available on the site, there are many individual stories, experiences and opinions in all the threads.

Another site I found quite good was “Thyroid Manager”, big load of information on the history, science, treatment protocols, lots of science and medicine.
I think it is maintained by thyroid researchers for practitioners to refer to.

[Harpy]

in reply to: Mild TED to normal? #1170648

Regarding posting the Omega 3 product that you are using, I don’t see as an issue, but one of the facilitators needs to post a comment on that.

Regarding the Mild TED, my partners case was also mild to moderate, hers did improve progressively (say 70%) over the first 2 years, I would say they came to the 95%+ stage between 3-4 years, that was also the time when her sensitivity to light also decreased , was a bit of a shock when I noticed she had no Sunnies on in bright Sun, no squinting etc.
She still feels there may be a slight residual to improve, maybe in her left eye, but from my perspective I don’t see it, her eyes look perfectly normal to me.

[Harpy]

in reply to: How long has this been going on? #1171512

Regarding periodic (undiagnosed) hyper, yes my partner, like you say when we look back on these times, not only in terms of behaviour, but also weight loss episodes and she was constantly drinking ice water (or coke), her mood swings at times were absolutely polar and I just put it down to her being more Womanly than other women, so extreme PMS, oh also sunglasses, all the time. One time we were off for a drive, rounded the corner, she frantically searched for her sunnies, then snatched mine off my face and put them on to get relief, I looked across at her a couple of seconds later, she looked like an insect, one pair on her eyes and the other above her forehead.
When I mentioned to the Endo that I was sure she had numerous hyper episodes in her history, Endo said, no way never, you only get it then get worse unless you get treatment.
Strangely though now, her PMS is almost unnoticible, doesn’t need sunnies 24/7, no ice water required, now has to work for weight loss, etc, etc,
So Yeah, I believe most individuals have had recurring bouts in their history.

[Harpy]

in reply to: The thyroid and gluten #1061158

Snelson
Yes my spelling is out sometimes, probably because I am juggling with three versions of the English language (US, UK & Aus), reading too much and thinking faster than I can write. I didn’t see that there was a comprehension issue with that particular spelling mistake and have noted plenty of minor spelling mistakes elswhere on the forum and only feel the need to point them out if there is a risk of misunderstanding, but thanks for pointing it out anyway.
I did not mention diabetes, Erica did twice, Bobbi did once, you in your post and now I’ve just written it.
My reference was to:

Quote:

obese heart patient

,
You may have made the association that Obesity may have as a symptom or causal factor in Type 2 Diabetes, but obesity is also common with heart disease patients and that was what my reference of warfarin was to.
I would have thought the colour of my language would have been a major flag that it was not a formal research presentation, but I do appreciate your comment that it may be misconstrued under certain circumstances, so to that end I have included an appropriate disclaimer in my signature so everyone can see that what I write is purely my opinion.
I have never prepared a formal clinical trial, but I do understand that there is a lot more to controlled double blind study than just gathering a number of indiuviduals together and giving them a diet regimen to follow. If I was to prepare one it would not be presented as three lines in a forum post it would be a 50 page document to give a detailed explanation of what the aims are, how it will be conducted and what the expected outcomes would be, I’m sure people already think my posts are too wordy without going out to 50 pages.
Not all scientific studies are done to that full degree of rigour as it is very expensive to conduct, many scientific trials are done on the basis of a feasability study in a simple form as I sugested, they are not expected to be absolutely conclusive on wheteher the factor at question is responsible or not, merely to show scientifically that there is enough evidence to warrant a full blown study and that further investigation is required.
So now that we have discussed the technicalities of the discussion, like in another post where I was corrected for the quality of some of the links posted, but no one seems to want to deal with the question of the influence of our environment on the presentation of GD (& other autoimmune diseases).

In my opinion there are a number of environmental factors which have enough circumstantial evidence around their relationship to GD to warrant further research.
Is their any conclusive scientific evidence to show that environment plays absolutely no role in the presentation of GD, if so I would like to see it so I don’t waste my time following this path if my time could be spent more valuably elswhere?

[Harpy]

in reply to: thyroid support boards #1171463

I have visited a number of different boards, but all are public, I have not stumbled across any that require registration and are closed to public, but there may be some, don’t know.

[Harpy]

in reply to: The thyroid and gluten #1061155

baileyslp wrote:

Hi Erica,
I do not think a GF diet will benefit everyone, but I think it can really help some out there.
Bailey

Well said,
I have been scouting around a number of different autoimmune diseases, and what I have found is that all the official organisations, hold the same line that there is no evidence to say that diet or lifestyle changes can affest the course of the disease and many default to say the general healthy diet reccomendations of the WHO or some other.
But when I look deeper, I find books, personal blogs, forum discussions that all seem to have a common factor, diet and lifestyle changes helped me through my autoimmune disorder, some cured, some much improved quality of life.
Not a fix for everyone, but certainly worthy of further investigation.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170880

Seeing as we are still going on this topic, not suggesting that thyroid issue does not need to be dealt with, that is definately first priority, like first aid, but at this point really that’s basically where effective treatment stops, because that seems to be where the knowledge stops.
The TSH receptor antibodies are specific to TSH receptors, but TSH receptors are actually present in many other tissues of the body, including muscles, bone, brain, heart, and other major organs & also the pituitary gland, so the antibodies must be depositing and activating receptors all over the body as well. I stumbled on this when I was trying to understand the hormone regulation axis, it appears that the Pituitary has TSH receptors and monitors TSH levels in a closed feedback loop, these receptors are also occupied by antibodies, hence why some patients may get their hormone levels right and antibodies much improved, but still have suppressed TSH, because the Pituitary thinks TSH is already high as the antibodies have shorted out it’s feedback loop. This seems to be one of the last areas the antibodies vacate, usually when blood level AB’s are close to or even well in the normal range. Then I found some papers studying the effects of TSH receptors elswhere in the body, not thyroid related, so that raised the question of what else is going on with the AB’s that we do not know about, there seems to be a lot of fog about GD, and not just the brain fog.

As to what cause lies below the antibodies, well that is where the solution is and currently no one can tell me what that is?
I feel a bit like a 5 year old sometimes who has just asked the adults where babies come from, I keep getting all these lame answers and can’t help asking over and over, But Why?, But Why?

[Harpy]

in reply to: The thyroid and gluten #1061152

As this is a topic I have started looking into again more recently, just thought I’d bring this discussion back to the surface. I did see most of those studies the other day in my searches before I ran a search on the forum.

Even though my partner did not go fully Gluten free, the program she followed was based on a low allergenic diet principle, similar to a Paleo style diet, so it was reduced Gluten & Dairy and less processed foods, she also had a couple of dietary enzymes she was taking as we believed firmly from our research that there was a high likelihood that poor gut function was a significant contributer to her expression of GD.

As I understand it the conventional wisdom regarding GD diagnosis is that one day you wake up and suddenly your body/brain has a spasm and decides time to produce antibodies, you see the specialist and ask what caused it, answer, we don’t know, you do some research and ask is it diet or lifestyle, answer definately not, it’s genetic some people just get it.

How can you say in one breath we have no idea, then categoricaly rule out a potential factor?

The other side of the coin, Alternative/Complimentary medicines say your body has been under stress (Diet, Lifestyle etc.) for a long time, you need to change some factors in your life, you may be able to heal yourself, but it will take a long time as well.

Definately do take medications to control the thyroid response, or Surgery or RAI if required, but if you are not prepared to change other things to support your body, what is the expected outcome.

Like the obese heart patient, telling the doctor to hurry up with his warfrin script, I’m running late for the all you can eat “Burger Bash”, outcome is predictable.

I see all this smoke puffing around the dietary/gut/gluten issue repeatadly, yet all I hear repeated again and again is the “smartest guys in the room” tell us there is no proven connection, well the smartest guys in the room also brought you, Dioxin, DDT, Thalidamide, MSG etc. all these things were completely acceptable at one time to use “safely” and more recently the other category of “smartest guys” brought us the GFC, their response to that one was, “who could have known the entire global financial system would crash?”

So rather than the std old line, what I would like to see is the “smartest guys in the room” to do a proper long term study to show categorically that there is absolutely no connection between Gluten intake & Thyroid disease.
Not too much to ask is it?
Simple 100 Thyroid patients, still take meds, go gluten free healthy diet for 5 years and their progress monitored, end of 5 years all healed/none healed/50% healed whatever, or is funding for preventative measures that don’t have ongoing drug sales unavailable?

Sorry bout the rant, but it does rile me sometimes.

[Harpy]

in reply to: Mild TED to normal? #1170646

Laree08 wrote:

I got my blood test back and my thyroid levels are in normal range. My Endo had me on Methimazole 5mg to now 2.5mg. I also had appt. with neuro opht. and I have very, very mild Graves disease. I don’t know what “very, very mild” is I just thought you either have it or dont!? My TED is very mild as well and he recommend some Omega 3 vitamin that can only be bought online. He said I can take anything over counter, but prefer I order the one online. He measured my eyes and they’re in normal range. He said it could get worse over time or it may not. The disease runs its on course and I have follow up in May. I was wondering has anyone here had mild TED and eyes went back to normal? how long did it take? Im hoping mines stay mild and lead back to normal..Im hoping! : )

Laree08, if your’e still out there,
The reason Doc recomended a particular brand would most likely be because just std Fish Oil Omega 3 suppliment may have a small amount of metal contamination, which is ok for most people, but may aggravate GD, so you were probably directed to buy something like “Ultra Clean” Omega 3 Fish oil because it would have been checked, and if it had any contamination would have been rejected as a lower grade.

[Harpy]

in reply to: Finally good numbers after 5+ years treatment #1170878

Bobbi wrote:

“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.”

Actually, the entire body is diseased when we are hyperthyroid. That’s where I differ from folks who insist on focussing on the antibodies. The antibody itself is not disrupting the function of the heart, the digestive system, the muscles, the bone, the pituitary, etc. The antibody is disrupting the function of the thyroid. The thyroid, in turn, is causing the disease to the rest of the body by pouring out too much hormone. And the evidence of that is that when we turn the thyroid off (either with meds or by removal) we can regain our health, living, all the while, with the pesky antibody still lurking in its corners of the body.

Understand, and respect that, but seeing as no one really knows the full extent of the disease, I differ again in that I feel the antibodies are affecting many other areas of the body, they are just not as obviously manifested as the Thyroid, TED & Pretibial Myxedema, but I believe the actual cause lies below the antibodies, not with the antibodies.

[Author]

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