[mslux]

in reply to: Selenium in the treatment of Graves’ Disease and Ophthalmopathy #1178079

Yes, it looks like it really might help. I have to be careful as my LFTs are not in great shape but I will talk to my general doctor.

[mslux]

in reply to: Just curious about RAI #1177965

ChristinaDe wrote:

Threatening to report a fellow member to the Board? Over what? Sorry…but doesn’t this qualify as “paternalistic”? Is it time for all of us to leave this Board to you & those you like or agree with?

It’s a shame. You have some good insights and meaningful stories to tell. But, for me, they’re getting shrouded in my fear of what you’ll post next. And to whom. Will it be me next? Or another person I like and respect? Personally, it’s stressing me out. Will you now be reporting me to the GDATF Board?

Have you read this man’s posts to people? Have you read his post to me this morning? It was incredibly abusive. I am deeply concerned about the bullying on the forum and why it is not being moderated. His post to Naisly on this thread is also totally inappropriate. Why is it ok to to shout at her? Or be so aggressive to her? It’s not is the answer.
I have just emailed the foundation asking them to please intervene to remedy this situation.
And the very reason I would ask that they do so is because I believe that nobody should have the right to bully other users. It is extremely upsetting.

[mslux]

in reply to: Just curious about RAI #1177962

AzGravesGuy wrote:

Naisly wrote:

I know radiation is cumulative, it stays with you forever.

This is misinformation. Only certain types of radiation are cumulative.

Are you speaking of ionizing or non-ionizing? Alpha, Beta, Black Body, Delta, ELF, Electromagnetic, Gamma, Infrared, Microwave, Neutron, Thermal, Ultraviolet, VLF, X? (Many of these we are constantly exposed to on a daily basis without even knowing it. Welcome to life on planet Earth.)

To make such a blanket statement is irresponsible and plays on people’s fears of the unknown. This does not make a supportive environment for patients wanting real information.

Perhaps you should look further into your “skin crawling” research and make definitive statements instead of all encompassing half truths. If you have not researched that far, please refrain from making these bold assertions.

I could ramble off a list of purported cancer causing items from Asbestos to malathion to Red #40 to stress. Information is great. Feeding speculation and fear is not. With all due respect, please be more responsible with your words in the future.

I just wanted to let you know directly that I will be making an official complaint to the GDATF board about your post to me today.
I have looked through the threads and note you have also been extremely aggressive to other women on the forum.
The fact that this has not been moderated is very worrying.

[mslux]

in reply to: Acetyl L Carnitine for GD Symptom support. #1178048

Hi Stymie,
I have created a new post with some research info on the use of selenium in the treatment of Graves eye disease.

[mslux]

in reply to: Everyone Please Read – Private Messaging Abuse #1178007

I am only a member of one other forum and that is Living with Graves Disease.
I will include your feedback for the board to review along with all of the correspondence to date. Cyber bullying is a serious issue and one that no medical foundation should take lightly.

[mslux]

in reply to: Everyone Please Read – Private Messaging Abuse #1178005

I couldn’t disagree more and for those reasons I feel it needs to be addressed.

[mslux]

in reply to: Acetyl L Carnitine for GD Symptom support. #1178043

Hi Harpy,

Thanks for the link. I’ll follow up on it and do some research. I’m being treated with the ATD Carbimazole with a hope for remission, similar to your partner’s treatment approach. Depending on the severity of the condition and how it is affecting the patient they are very open to this approach here in Europe.

I have to be careful as my liver has been slightly compromised by the Graves but I have also read about the data supporting the use of selenium for eye health. What else have you both found to be of particular use?

I have extreme fatigue, brain fog and a removed kind of feeling at times that could best be described as slightly ‘numb’. It’s not as bad as some people’s unwellness but it is concerning. Any info you feel might help, or studies done, I’d love to have a look at.

Thanking you,

Ms Lux.

[mslux]

in reply to: Everyone Please Read – Private Messaging Abuse #1178003

Kimberly,

I have serious concerns at this stage about your suitability as a moderator on this forum and the behaviour you have displayed towards anyone you perceive to be challenging your authority. It has nothing to do with people not understanding moderation or mis-posting. No one has displayed harassing or bullying behaviour on the threads but you. Likewise I seriously question the motivation behind this ‘message abuse’ post. I think there are many using this forum who are afraid of speaking up as they have seen how badly it has gone for others. The tone of this post is totally inappropriate for a foundation that is there to support a client population whose condition is understood to be negatively impacted by stress. Everyone here is trying their best.

It is vital that a moderator that facilitates a forum for vulnerable people seeking wellness displays good conflict resolution skills, is non reactive, is fair and does not personalise disagreements. They also should avoid polarising posters in a community into a for/against dynamic.
I have not seen this to be the case with how you have handled things over the past week. It is very upsetting to see.

Also, shutting threads down, editing posts unnecessarily, inferring people are acting with mal intent are all totally unnecessary. Not to mention the fact that you routinely state that there is no research available that you know of on (a) or (b). Long term disability following Graves treatment and The Coeliac/Graves connection being just two recent examples. Also no one moderator should have so much control over a patient support resource.

Is there a telephone number that I can call from Europe to speak to someone on the board of the foundation? The number posted is US only I think.

You can post the contact details here or PM me, whichever you prefer.

Regards,
Ms Lux.

[mslux]

in reply to: Few things to help you feel better. #1175505

Do you have flouride in the water where you are Naisly? There’s a big controversy here about it currently. It can apparently have a poor impact on Graves.

[mslux]

in reply to: Another newbie #1177990

Hi Flora,

You poor little thing, it is really crappy to feel like that. I was given Carbimazole which is an anti-thyroid drug used in Europe and Propranolol a beta blocker. The beta blocker really helped with the shakes, anxiety and jitters. Were you offered a beta blocker do you know?

Kind Regards,

Ms Lux X

[mslux]

in reply to: Just curious about RAI #1177952

[quote=amosmcd]I’ve talked about it in my posts about deciding RAI vs TT.
It’s a personal decision on my part to not have RAI.
[/quote]

Hi Amosmcd,

I’m wondering did you opt for a TT or continue with ATD therapy and how did it work out?

Thanks,
Ms Lux.

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177563

ChristinaDe wrote:

Ms Lux ~ Are you an attorney? From the U.S.? Just trying to figure out how to weight your legal advice.

Hi Christina,

No, I’m a European media worker with a background in research/journalism. Even experienced legal people have difficulty with the area of internet regulation and as it would differ from country to country it’s not a set science.

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #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

[mslux]

in reply to: Just curious about RAI #1177949

It’s not an area I am familiar with as it’s not widely used here. The links refer to the concerns around secondary primary malignancies following RAI. It is also used as a treatment for thyroid cancer. It’s an issue of balance. While nobody is keen to receive radiation it is a question of balance and options. Were you advised it would save your life in the treatment of cancer it would obviously be worth considering. I am surprised it is so widely used in the US as it is a very carefully considered treatment here.

From the Journal of the National Comprehensive Cancer Network;-

“Longer-term complications include recurrent sialoadenitis associated with xerostomia, mouth pain, dental caries, pulmonary fibrosis, nasolacrimal outflow obstruction, and second primary malignancies.”
http://www.medscape.org/viewarticle/732516

From the Division of Endocrinology and Department of Medicine, University Health Network, Toronto, Ontario, Canada:-

“The risk of SPMs in thyroid cancer survivors treated with RAI is slightly increased compared to thyroid cancer survivors not treated with RAI.”
http://www.ncbi.nlm.nih.gov/pubmed/19281429

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #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

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