[mslux April 4, 2013 at 12:59 pm Post count: 33]

#1177546

Many people have read this thread it seems from the view count but only a few have commented, which is of course fine. I have received a number of personal messages and emails relating to exchanges on this thread and the implications of it in the wider context – not only for how this forum is moderated, but in terms of how Graves and thyroid patients in general are treated by their health care providers.
To provide clarity and to avoid any further misunderstanding I again outline my position.
I posted on this forum as I felt it was necessary to be a supportive voice for posters who expressed ongoing unwellness despite having been told they were ‘successfully treated’ for Graves and had significant, and at times disabling symptoms relating to fatigue, cognitive impairment and stamina etc.
This has been my experience and the experience of a significant proportion of Graves patients so I was very surprised at the repetition by moderators on a number of occasions that with good treatment, a return of good health should be an expected outcome for the vast majority of Graves patients.

There is a growing body of clinical data (which I’ve linked to above on the thread) to support the theory that a proportion of Graves patients have significant ongoing unwellness to the point of disability long after they are deemed to have been ‘successfully’ treated by their providers.
These patients are very often a frustration and a perplexing group for physicians that would prefer ‘treatment outcomes’ to be more predictable and less troublesome. They are often treated poorly by Endocrinologists and there is an insistence on referring them to Psych for a consult with the implication being that there is an ‘untreated disorder’ of the mental health variety lurking beneath the Graves.

This is problematic for a number of reasons. It invalidates both the natural grief that a patient might feel at trauma and significant loss of wellness the Graves leaves in it’s wake but it also infers strongly that the ‘symptoms’ are not related to Graves. This can be distressing for someone who knows their own mind and body and is desperately seeking a doctor who will listen, believe them and attempt, with them, to seek reasons as to why this might be and possible solutions.

Unfortunately this is extremely rare with Graves patients. They not only have to suffer years in many cases of psychotropic drugs and multiple labels of everything from panic to depression to psychosis, but when finally properly diagnosed have to again be invalidated and dismissed if they fail to respond well to treatment.

It is vitally important for someone, whether it be a poster on a forum, a friend, or a kindly healthcare worker to validate the person’s gut feeling and believe them. It can make a world of difference and it can open up possibilities to real healing.
The reality for me, as I have outlined in detail was that I am in the category of folks who are still cognitively impaired, fatigued, unwell and experiencing a massive increase in allergy related and chemical sensitivity issues despite being deemed to be ‘successfully treated’. And I am not alone in this clinical picture. There are many like me and this needs to be acknowledged.

What I take issue with in relation to this forum and the moderation is the speed at which the same power differential, invalidating response is given to people expressing grief, low mood or cognitive difficulty that they feel to be Graves related. I was advised by the moderator that if I thought myself slipping in to ‘clinical depression’ I should seek help as there is often another condition that responds well to treatment. I don’t think if the thread is read in it’s entirety that it’s difficult to see why I would strongly take issue with this. I requested that the segment of the comment be removed as I felt it was an inappropriate and invalidating response.

It is my belief that this kind of intervention is deliberate and an attempt to stop certain kinds of conversations being had; namely that many people do not recover fully with the three standard treatments available and that Endocrinology and Immunology don’t really know why.

It is a nice idea to have a supportive, positive environment for fellow patients to gain experience and expertise and share their knowledge with each other but it is another thing entirely to attempt to control and direct conversations and private exchanges of folks who use those forums.

I feel this forum adopts a very paternalistic approach that is mirrored in the kinds of exchanges that many patients experience with their health care providers.
There is one final important piece of information that I should add which is that a rush to conceptualise auto immune or Graves related disability as psychological in nature can really harm someone long term as it delays their recovery and shifts the focus away from the area that actually needs addressing.

There is absolutely hope. I have hope for a full recovery, precisely because I am tenacious and determined to give myself the best chance available. I find the writings of the very knowledgeable Mary Shomon (patient advocate) extremely useful and informative and she has highlighted the work of Endocrinologist Richard Shames who has written extensively on the area of emotional/psychological distress in Graves and how it can be conceptualised and treated. Mary’s work can be found in any search online by entering her name. I shall also be using other forums that users here have suggested might better suit my approach. I’ve met some lovely people here in the past week. It is heartening.
I don’t dismiss or discount the protective and loyal feelings that certain users of this forum have toward both the moderators and the community here. I fully understand and appreciate this.
I do however feel it was necessary to speak up strongly and clearly for those who’s voices are less heard but still no less important. I have therefore, on reflection, decided to leave this thread intact, in it’s entirety minus the portion of the moderators post which was removed at my request. It might have been an easier exchange but you can’t always plan how things will go.
I don’t consider it negative to tell your own truth, in fact it’s vital if we want to get fully well.

Love Ms Lux X

[KimberlyOnline Facilitator April 4, 2013 at 1:30 pm Post count: 4294]

#1177547

@mslux – I am respectfully asking that you remove the above link and reference from “about”, as it does not conform with the guidelines for links laid out in the “New User? Read This First!” thread. If you do not do so, I will remove the link myself, although I prefer to not handle things that way.

Clearly, you will see this as another example of “paternalism”, but please understand that I am simply enforcing guidelines that are already in place. Can these guidelines be reviewed by our Board to ensure that they are still appropriate and relevant? Absolutely – and I actually plan to initiate that process myself. Are they likely to be changed? Quite frankly, no…and no amount of personal abuse that you choose to dish out is gong to change that.

The Graves’ Disease and Thyroid Foundation’s name is attached to this board and the GDATF pays for the hosting services that allow this forum to be visible and accessible to users. In exchange, the Foundation asks members to adhere to basic guidelines, as determined by its Board of Directors, half of whom are physicians.

Basically, those who choose to post here are visiting the GDATF’s “home”, and it’s not unreasonable for members to be asked to follow a few basic guidelines. There are plenty of other Graves’ and thyroid forums out there that offer all sorts of formats. You need to decide for yourself which one will be the best fit for your personal situation.

[mslux April 4, 2013 at 1:55 pm Post count: 33]

#1177548

I’m probably as familiar with the guidelines and terms and conditions of the GDATF forum as the moderators are at this stage. I’ve studied them carefully in preparation for my letter to the board.

I think you’ll find it’s actually your page’s formatting that automatically converts it, it wasn’t posted as a link. The wording has now been changed to avoid this happening.

To suggest I have been personally abusive constitutes defamation. I will be in touch with the board and seek legal advice on this issue.

I can’t respond to any further posts on this thread.

[Geezer April 5, 2013 at 6:52 pm Post count: 5]

#1177549

I am new to this forum but not to Graves. I too have dreadful fatigue. I had to fire my endo doc, and use my primary doc, when she wouldn’t even discuss free T3 levels. At that point with diabetes and depression too, I tried to kill myself. I am doing a bit better but I agree that getting fully better is hard to accomplish. I at least have a few minutes of energy sometimes! Of course, fatigue can definitely come just from not high enough freeT3.

I still have joint pain and lots of trouble with having a lack of leg muscles. Doesn’t Graves attack those? I seem to remember that.

I can’t walk far and I walk like I am 20 years older. Those suggestions to “just exercise” make me want to scream, too…if I had the energy to scream. I feel like I have done a race just to get my dishes washed or my toilet scrubbed. Waste precious energy exercizing???!!!

[KimberlyOnline Facilitator April 5, 2013 at 7:21 pm Post count: 4294]

#1177550

@Geezer – Welcome…and thank you so much for sharing your story with us.

I generally do *not* edit posts, but I sent you a PM to explain. Look for a message in your In Box (top right-hand corner of the screen) the next time that you log in. Your post was perfectly fine; I was just trying to save you a little grief as a new member. You can edit it back if you so choose.

Is your primary doc now testing T3 for you? Interestingly, there have been *two* major studies released in the last week (one from Miami and one from Germany that confirm the importance of T3 testing:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-6-issue-4/vol-6-issue-4-p-6-7/

http://med.miami.edu/news/new-miller-school-study-points-to-importance-of-overlooked-hormone-indicato/

Making sure that *all* of your levels are in balance would definitely be a good place to start. Another consideration might be talking to your doc about the possibility that another autoimmune issue could be impacting your symptoms.

Take care – and please keep us posted about how you are doing!

[ChristinaDe April 5, 2013 at 8:19 pm Post count: 115]

#1177551

Hi Geezer,

Sorry that you’ve had such a hard time & that you’re not feeling well. Thought I’d say “hello”. I was also struck by the fact that we have similar leg symptoms right now. How long have you had them?

I had a thyroidectomy a couple of months and was feeling really great afterward. All of a sudden I began experiencing muscle weakness & joint pain in my legs (began a couple of weeks ago). Wow, that hurts! To a lesser degree, I had some fatigue and a bit of a down mood begin at the same time. Had labs drawn, and in my case it turned out that I’d suddenly gone hypo. Apparently this is one of the signs of hypo for some people. Turns out it is my FIRST sign. So my dr. increased my meds & I’m already seeing an improvement.

I agree with you…exercise while the legs are super weak, the joints aching, and experiencing fatigue is just downright painful & uses up what little energy there is. 😮

[jaqeinquotation April 5, 2013 at 9:53 pm Post count: 131]

#1177552

My 2cents

I did not read the post made by Kimberly that mslux asked her to remove. Did I make sense just now?

At the end the day, Kimberly is following guidelines and if I personally don’t like them then I don’t have visit this forum right? Regardless, I’m not trying to get into that:|.

On the matter of extreme fatigue and cognitive impairment, I’m soooo grateful for the voices of mslux and Naisly (I printed out your tips:), Stymie, eward, Geezer, ChristinaDe, beauty2010 and Raspberry

Like beauty2010 said, thank you for starting this thread mslux. A lot of points that were made, well I couldn’t have said them better myself. It was spot on.

Geezer, one or even some might say that “perhaps you should not be spilling out so much information on a public forum on the world wide web” but thank you for being honest about your feelings…for they are REAL. The changes that we are forced to “live” with are real and takes a strong heart to accept.

I too am hopeful for full recovery-we have to keep pushing. Yes we are all patients but some suffer differently than others. Seems the majority of us (in this thread) can relate to each other when it comes to the weakness, emotional numbness and brain fog we experience.

[Geezer April 6, 2013 at 3:29 am Post count: 5]

#1177553

Yes, my primary Dr tests my free T3 and gives me a cytomel prescription for it. Just being on Synthroid did not help much after my radioactive iodine treatment. T3 helps. I still have a lot of fatigue but I know that is due partly to my depression as it goes up and down on different depression meds. The actual leg tiredness I blame on Graves, and the lack of thigh muscle strength. It is really upsetting as I struggle just to go grocery shopping. Vitamin D helps a lot for the heavy leg feeling but doesn’t give me any more leg strength. Does anyone have any luck actually getting stronger?

[Geezer April 6, 2013 at 3:48 am Post count: 5]

#1177554

Kind of a postscript – I don’t have a problem with telling my truths on a forum. We all need help and sugarcoating facts is not always helpful. It can make those of us who struggle feel even more like a failure. Of course, stories of hope, when truthful, are needed also.

Talking about suicide and mental illness is also my way of spreading awareness and encouraging others to feel it is OK to open up. Statistically, some people with Graves do have depression, too, and it just makes it all even worse. (I do definitely know that not enough thyroid med gives you brain fog and extreme fatigue just by itself.)

Besides, my name really isn’t geezer – I just kinda feel like a geezer!

[mslux April 6, 2013 at 6:25 am Post count: 33]

#1177555

I really had to post in response to Geezer and others. Geezer I think you’re extremely brave to share what you did, I think many of us are, and I agree that telling the truth of the severity of the illness can actually create a space for dialogue and shared understanding.
It needs to be said that there are folks who get sick, get meds, get well and move on. If you’ve been newly diagnosed this is absolutely also part of the picture. I know folks who are very well now. But also there are those of us who continue to suffer, often in a wilderness of conflicting information from peers, online forums and clinical data while at the same time engaged in increasingly fraught and difficult relationships with our health care providers.
Yes of course, there are a multiplicity of reasons why someone might experience extreme emotional or psychological distress. It’s not unique to Graves thyroid patients. However the trauma of dealing with an often very challenging, unpredictable condition can leave folks feeling everything from anger to despair and sharing this, acknowledging it and seeking the warmth and nurture of others who understand this can be a healing beginning in itself.

The fact is also that autoimmune conditions and particular autoimmune thyroid conditions are well understood to have an often severe impact on the patients emotional and cognitive wellbeing. The antibodies and the hormonal/endocrine imbalances involved in Graves are directly responsible for this. The root cause is physical, not psychological. I myself had a feeling of wading through molasses. Exhausted but jittery, explosive but sad and weepy, reclusive but increasingly isolated and bone weary tiredness that left me feeling like I’d like to wear a feathered duvet suit all day so I could just have a little nap whenever the drowsiness hit, which it did, frequently. Post diagnosis and ATD treatment I still have low mood at times, emotional numbness, extreme fatigue and brain fog. It may be that I am hypo for my own personal wellness place on the scale. I will also be exploring the T3 component which is new to me and I have learned of from reading peer support forums.

Like Geezer I had a very challenging time in the years before diagnosis and had a FT4 of 48 when I was diagnosed, shaking and rattling and very agitated. I switched from our family doctor immediately as I was approaching thyrotoxic crisis and was still being doled out massive doses of Xanax and antidepressants and being told to hill walk! They never checked my thyroid. In fact even after visiting the hospital in the middle of the night desperate for assistance I was still discharged and told they could find nothing… until the bloods came back and they called, semi hysterical telling me to come in immediately, don’t drive, but I needed meds asap. They gave me 60mg of Carbimzole daily and 120mg of Inderal in three daily doses as my heart was racing 24/7.

It changed my approach to how I deal with medical folks forever. And the more I learned the more I realised that it is vitally important to work with someone who, while they may not know everything, is willing to take a lead from you and agree to follow up on your concerns.
Many endocrinologists that I have met are not Graves savvy. The treat, stabilise bloods and discharge approach leaves many patients miserable and feeling like lazy, whinging, failures. And it needs to change, and it’s why I wrote the post. It needs to be acknowledged and challenged and changed. Good Endos are worth their weight in gold and they I am sure do exists. I think much of the problem lies with the medical insistence that Graves is relatively straightforward to treat. I don’t think this is borne out in the deluge of patients experiencing a range of ongoing issues.

For me now in many ways I’m lucky. I don’t currently have TED, I’ll be 18 months post diagnosis in Sept and at that point it’s customary here to discuss other options like surgery. RAI is not performed on women of child bearing age here and long term treatment with ATD’s like carbimazole, which doesn’t impact the liver, is often an option.

Because removal of the gland or RAI doesn’t mean the autoimmune status magically changes, folks can go on to develop Hashimotos or other A.I. conditions. This can of course happen regardless as other A.I. conditions are not uncommon with Graves. I would always encourage folks to push for tests for other autoimmune markers. Also things like pernicious anemia can have a severe impact on well being but is easily treated with B12 shots.

For me, much of the challenge is about adjusting to the limitations of where I find myself in terms of wellness now and taking care of myself. This can be difficult but it is vital. I have found supportive therapies in conjunction with ATD’s to have a profoundly restorative effect. Acupuncture, gentle restorative yoga, anywhere by the sea or beside water, forests etc can leave me feeling calm and refreshed. Being out in bright lights or the sun can make me feel worse. This also is apparently not uncommon in A.I. conditions. Elaine Moore writes about this in her Graves primer. I have used a very experienced acupuncturist who prescribed herbs to be used in conjunction with my ATD’s and my doctors were happy with this. But also, bed has become a bit of a refuge. If you can and feel inclined, setting yourself up in a really cosy, comfy space can have a very restorative effect.
Organic essential oils can have a really profound impact on mood and wellbeing. Baths, pets, and anything that makes us feel nurtured, however silly others might feel it to be. Like stuffed bears? Get one. Pyjamas? Buy them. But equally if being out in a coffee shop just reading or meeting people for a drink helps, by all means do that.

I would encourage anyone feeling anything ranging from overwhelm to despair to use The Samaritans. I have found them to be invaluable. If you don’t get someone you connect with when you call, simply say “thank you, I’ll call back later” and redial. I have friends who work as volunteers and they totally understand that a person needs the right fit to open up and talk so they don’t take it personally. A supportive counselling relationship can be invaluable to some folks, others – it’s just not their bag.
There is a theory that Graves can follow emotional trauma, grief or other very overwhelming life experiences. In my case this was certainly true so it would make sense that I needed to talk and be heard in a totally non judgemental/non directive way.

There are some wonderful resources online. I like Mary Shomon’s writing online. Elaine Moore is considered a bit of a Graves guru too. The advice has been given here and elsewhere that getting copies of your labs is vital and learning to read them and understand is a huge ally in your journey. And for me with docs now, I feel I will try again with a new Endo and see how we get on. Primary care docs can treat Graves too if they are knowledgeable and wiling to educate themselves on the condition. But really question everything, don’t accept information unquestioningly, even from doctors. If they don’t like being quizzed, tough, it’s part of the job. Good doctors understand this and are not at all put out by taking the time to explain things and offer options, info and opinion/clinical experience.

It’s very easy and understandable to get upset and angry when being dismissed by a doctor when you know your own body and need to be heard.
Speaking up directly and clearly is an option but really, if that doesn’t work you can complain, ask for a second opinion, advocate for yourself. But also getting a new doctor and starting over can be the thing you might need to do. Don’t get sucked into pointless power struggles with anyone about your right to be heard. You have a right to be heard. We have a right to be heard.
I am so glad, despite the difficulties, that I have participated in this thread.

It has been amazing to hear the stories and not to feel alone.
For me this fortnight, I’ll get my blood results back, chat to my GP, possibly reduce the 5mg of Carbimazole I’m on and get my B12 shot. I’m also having a whole range of exploratory tests for other things, having a heart monitor for 24 hours, and seeing a Neurologist as well as working on my MA thesis! But today, to be honest, I’m in bed, flattened and the sun is streaming in the window. It’s Saturday and I can have tea and listen to the radio, cuddle the cats and just… breathe. I am also thinking I may have to start a blog as these mini novellas of posts are ever expanding. But thanks for reading and more importantly thank you so much for sharing.

Love

Ms Lux X

[KimberlyOnline Facilitator April 6, 2013 at 7:26 am Post count: 4294]

#1177556

Just a quick note that the resources that the GDATF recommends for patients are MDs who rely on “evidence-based medicine” and the above two sources mentioned are not.

[KimberlyOnline Facilitator April 6, 2013 at 8:31 am Post count: 4294]

#1177557

OK, so *not* such a quick note.

Our guidelines on sources are in place for a reason. Our board wishes to provide members with “evidence-based medicine” – partly because of the inherent importance we place on giving out solid, credible evidence. But certainly legal concerns are a factor as well.

For example, one of the sources that you mention wrote a book on hyperthyroidism that had a chapter devoted to an unproven protocol that claimed that a special vitamin regimen would “cure” Graves’, complete with a link to a web site. Turns out that web site is a ghost town now – and it has a large red disclaimer at the top of the home page, stating, “There is no scientific proof that thyroid disease can be corrected nutritionally. The editor of this site is not a doctor and has no formal medical training. What works for one person may be dangerous for another.“ Clearly, something bad happened to cause this.

But what if someone followed this regimen because they read about it on our web site? Our Foundation would likely get sued. We live in a litigious society, as I well know, as I’ve been personally threatened with legal action as a result of this thread. :rolleyes:

[SueAndHerZoo April 6, 2013 at 9:35 am Post count: 439]

#1177558

This is a common problem on forums everywhere….how to share with others what might be very helpful to some without advocating something that could be unhelpful or downright dangerous to others. Forums are a place where we can converse with others who share our situations but they can also cause lots of legal problems for those who have to take responsibility for everything that gets said and done within the forum.

Would it absolve the GDATF of any legal responsibility if links and suggested websites were only shared in private messages? For example a poster could state that if anyone is interested in the site or sites referred to, send me a PM and I will reply with the address, website, link, etc.

Would that free the foundation from any legal liability or does that still cause potential problems?

Sue

[KimberlyOnline Facilitator April 6, 2013 at 11:05 am Post count: 4294]

#1177559

Hi Sue – That’s a good question that I will run past our Board when they review the forum’s current guidelines. One of our Board members is an attorney that specializes in non-profit work…although I suspect this is a constantly evolving area of the law, with all the developments in social media in the last few years!

[mslux April 6, 2013 at 1:06 pm Post count: 33]

#1177560

SueAndHerZoo wrote:

This is a common problem on forums everywhere….how to share with others what might be very helpful to some without advocating something that could be unhelpful or downright dangerous to others. Forums are a place where we can converse with others who share our situations but they can also cause lots of legal problems for those who have to take responsibility for everything that gets said and done within the forum.

Would it absolve the GDATF of any legal responsibility if links and suggested websites were only shared in private messages? For example a poster could state that if anyone is interested in the site or sites referred to, send me a PM and I will reply with the address, website, link, etc.

Would that free the foundation from any legal liability or does that still cause potential problems?

Sue

This is a really good question. There are a number of approaches that are taken but generally a clearly displayed ‘Disclaimer, Waiver of Liability and Indemnity’ is used to state that a site is intended to be used for information purposes only and is not a substitute for medical advice which should always be sought from a registered physician.
It’s always advisable to seek legal advice from someone with expertise in the area as the provisions outlined in the disclaimer might prove unenforceable, and can in certain instances result in liability on the part of site or host depending on the jurisdiction. It’s not a cut and dried one size fits all. The laws governing this in Europe would differ considerable from those in the US or Canada.
You would often be asked to accept the medical disclaimer before using a site. The link I posted below to The Harvard Medical School’s ‘Family Health Guide’ is a good example of what one might look like.
In softer language it can be stated to always seek the advice of your treating physician before embarking on any new course of treatment or adjusting/changing the one you are on. But also to exercise discretion when reading material from any online source. Nothing one reads online should take the place of medical advice and mutual decision making between a physician and their patient. Sites and forums often reference new or experimental treatment for conditions but state clearly the evidence base of these or lack thereof. There is nothing to be feared from this. It can actually act as a safety mechanism for a very vulnerable patient who may be seeking a miracle cure for a condition when none such cure exists.
Good physicians are often open to working with their clients to develop complimentary /integrated health care plans. The World Health Organisation for example gives detailed and clear information on diseases, symptoms or conditions for which acupuncture has been proved-through controlled trials-to be an effective treatment. It then goes on to state the lack of, or the dearth of evidence for a long list of conditions for which there is no supporting evidence of efficacy.
The premise of all good medicine is ‘first do not harm’ so any treating physician with strong concerns about a particular approach a patient was taking would voice these concerns. Graves can be a fatal condition so all decisions should be made in conjunction with a patient’s health care provider. Outside of the three standard approaches outlined in the treatment of Graves there is at this time no clinical evidence that other treatment approaches work and may in fact be dangerous. That said there are a range of supportive approaches that can be used in conjunction with standard therapy, but for an illness as serious as Graves it would need to be done with the full knowledge of your treating physician. There are also certain specialists who themselves use an integrative approach in conjunction with standard recognised treatments.
In relation to disclaimers, peer moderated forums differ slightly and this is an area of law that is somewhat greyer. Forums can also often include a specific proviso to the user when registering to click and acknowledge that the charity/foundation/organisation accepts no liability whatsoever for information shared or given by third parties. This excludes the moderators but would cover all registered users. PM’s also would fall under this category and it would be more of an issue in regards to user’s privacy that their privacy was respected and that their private correspondence be respected as private.
If it were to be deemed that a particular treatment was being advocated or favoured over others or that the site or it’s sponsors were acting with intent to promote either themselves or their practices for financial gain the disclaimer could prove unenforceable were a user to have a particularly poor outcome following a procedure that they had strongly suggested was superior/beneficial/necessary. But that again is an ambiguous area.
There generally isn’t a need to worry and it’s more of a concern that people treat each other respectfully and don’t engage in anything that might be perceived to be bullying or attempting to unduly influence others. It is therefore generally advisable not to set oneself up as an authority on anything or give anything that could be construed as medical advice.
The culture that develops on a forum is very much created by the moderation and how it is handled. These issues are generally not a problem in an environment of mutual respect where no one person’s experience is valued above another’s. If issues or conflicts do arise it’s how they are handled that is the most important. Moderation should generally be shared amongst a group of at least five people so that no one person would have to either deal with the bulk of the work or have undue input into the discourse.
I haven’t seen these issues arise on others forums that I’ve used but they are all different.

http://www.health.harvard.edu/fhg/dismed.shtml

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