[mslux]

in reply to: Anyone else experience all this, or am i just a baby? #1177781

mollypop43 wrote:

So the last 6 months I have been experiencing extreme fatigue, muscle loss, even more weight loss, muscle/joint pain mostly in my neck, shoulders, lower back, and hips (radiates down my thighs). I am only 21 years old, I feel like im 60! before i had told myself “youre just lazy. You need to push yourself more, and find more drive” but i am a hairstylist, which obviously means im on my feet all day long (some days without a lunch break, or any break for that matter) and I feel like i am going to die by the end of the day!! I know it sounds dramatic, but I really dont know why this all happens. Super frustrating. Even on the weekends, all I want to do is lay in my bed all day long, or sleep alllll day. No matter how much sleep I get, my body is never fully satisfied. I have the worst time waking up in the morning as well, i have to set 3 different alarm clocks to make sure I wake up for work.

On top of that, right around the time I started beauty school, i started to realize how dumb i had been starting to feel. I had the HARDEST time focusing on anything; schoolwork, listening to instructors lectures, or even a conversation face to face with my best friend. When I started my job at the salon last summer, they wanted me to learn the front desk before i started my apprentice program, It was the most frustrating thing in the world… I cant multitask worth a bean. My memory is shot, half the time I cant even remember what someone had told me 10 minutes earlier..Im constantly forgetting appointments, bills to pay, places to go, what my mom just asked me to pick up from the grocery store even though i just got off the phone with her 5 minutes ago. I feel so dumb, it honestly lowers my self esteem so much because its so hard for me to intake information, therefore i feel so dumb when it comes to learning anything. Again, I know it sounds dramatic, but these are all true things that i deal with on a day to day basis, and if it didnt effect my work/day to day life I would never speak a word of it.

Hi Mollypop,

Your extreme fatigue and cognitive issues are very familiar to me. It can be really scary to feel both so fog brained and exhausted so I really hear how miserable this is for you. You don’t sound like a baby at all, you sound like a little trooper for getting through this.

I avoid anything but very gentle exercise like slow restorative hatha yoga and walks. By the sea or in a forest is often calming and the air is good.
I actually can’t imagine how extraordinarily tiring it must be to work in a salon and feel like you do. I’m sitting most of the day and I am still fatigued!

If you get a full blood panel and lab print outs you can then familiarise yourself with what it means. There’s lots of good help online to support you in understanding what each entry means but common ones are FT4, FT3, Trab, TSH, TSI etc and you can then see where you’re at. You probably already know all this though.

In Europe anti thyroid drugs like Carbimazole are used long term sometimes, depending on the person’s level of health and wellness as removing the thyroid will mean a lifetime of thyroid replacement drugs. It really depends on your own situation. Removal could be useful depending on the clinical picture.

I would say that anything that soothes you will have a restorative affect on your nervous system, endocrine system and most vitally your immune system. I have found acupuncture with ATD’s to be a very good combination.

But also, even though you are exhausted and very tired, do seek a second opinion from other doctors if you feel it would be beneficial and do request that other auto immune conditions be explored. Sometimes bringing a relative or friend with you to appointments can help underline the severe unwellness you are experiencing, can be good support and can remember things you might forget to bring up.

Something like pernicious anemia which would require B12 shots can be simply tested for and when treated make a huge impact.

For what it’s worth if you could possibly take some time off it might give you a chance to regroup. Not always possibly I know but has helped lots of Graves folks to heal. Do mind yourself and take good care. Please do let me know how you get on.

Ms Lux X

[mslux]

in reply to: Fluorescent lights #1177903

Hi Stymie,

Yes, ‘mild thyroid ophthalmopathy complaints include photophobia (sensitivity of light), foreign body sensation, and increased tearing’ are common. This link from the University of Iowa’s Dept of Ophthalmology and Visual Sciences explains clearly the process involved in TED symptoms.
http://webeye.ophth.uiowa.edu/dept/DIAGTRT/Graves/graves.htm

Sunlight, fluorescent light and incandescent light all can cause discomfort and polarized sunglasses, changing indoor light sources to less harsh lighting and using lubricating eye drops or ‘artificial tears’ can all help. But it’s always good to have it thoroughly investigated as everyone’s process is different.

I have your symptoms but have never gone on to develop more severe eye symptoms. I had a CT scan and a consult with an Opthamologist to rule out more severe complications and they will monitor it at quarterly intervals.
I find sleeping elevated on a few pillows, drinking lots of filtered water and eating a low sodium diet also help keep eye puffiness at bay.

Ms Lux

[mslux]

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

[mslux]

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

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177540

Hi Sue,
I think it might be best for you to read through the thread. It’s self explanatory. There were in fact three separate requests, including a pm, asking that the comment be removed. It was not willingly done and was only finally amended when I emailed the foundation. I consider the matter dealt with and will proceed in addressing my concerns with the board. I have in fact requested that the full thread be removed. I am glad you find this resource helpful and the moderation style suits you.
I myself will seek a less controlled environment to exchange information and support related to Graves.

Regards,
Ms Lux

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177538

Hi Kimberly,

Thank you for finally respecting my request and removing your comment. I will be writing to the board of the foundation regarding the moderation, the privacy issues with the site and it’s ambiguous disclaimer.
I’ve been informed that the role of the forum is to strongly push the position that treatment leads to a good outcome for the majority of Graves patients and that any exploration or suggestion of either experience or clinical data that contradicts this is not explored.
It has been my experience that the foundation’s forum is heavily controlled by moderation to an excessive degree.
It’s paternalistic in it’s approach which will not suit everyone but furthermore information given does not accurately reflect a range of experiences of Graves and I believe this has a very silencing effect on the dialogue.
Forums for patients should be safe spaces and comments like the one preceeding mine have no place in the discussion. There should be no need to edit our experiences as honest disclosure of what the illness can involve gives space to those also suffering to speak up.
It’s then that meaningful exchange takes place. And if grief is part of that process then that
is ok too.

Regards,
Ms Lux.

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177536

Hi Kimberly,
I have asked you twice to please remove your comment. If you refuse to respect my request I will have to take the matter further. Again, I reiterate I found your comment inappropriate and unwarranted and it over steps the boundaries of your remit as a moderator on this forum.
Therefore, I am requesting a third and final time for you to please respect my request to remove your comment which I consider personally defamatory and which you have no medical or legal basis for making.
As a moderator on this forum you are a representative for the Graves Disease & Thyroid Foundation and your opinions expressed and recommendations made can be deemed legally to be those of the foundation. It would be advisable at this juncture to reflect upon this. I have read through your other posts as moderator and there are a number of anomalies.

Regards.
Ms Lux.

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177534

Hi Kimberly,

I had pm’d you to request that you remove your above comment as I find it to be inappropriate and an overstepping of your boundaries as moderator.
You are by you own admission, not a healthcare professional.

Graves disease is an often debilitating and profoundly disabling condition. The loss of one’s previous health and functioning that can accompany this would certainly warrant a grief reaction that would be healthy and not considered pathological. Paternalism in a space like this one is not a suitable approach. We are all adults and are quite capable of taking care of ourselves and managing our communication on the forum both public and private.

I also would caution you against assuming that posters themselves are not healthcare workers.

Your intervention was unwelcome, however well intentioned. I would therefore be very grateful if you could respect my request and remove your comment.

Regards,

Ms Lux.

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177531

Hi Kimberly,

The voice issues, I had suspected were related to being slightly hypo for my optimum wellness. But yet voice fatigue, strain and throat pain occur when I become hyper. Is this most folks experience? Did anything help?

The PM was very useful in that it simply said there are folks on 2.5mg of carbimazole and half that again. As I don’t feel well on 5mg it might be something to consider.

I am very sad today really as I have lost so much a result of this disease and some times it really takes it’s toll. Singing is a very vital part of who I am.To not be able to do it is very painful for me. I have slept through Easter, absolutely exhausted, unmotivated and down.
It should not be like this almost 18 months post diagnosis. I am also in a public system where you are referred to an Endo clinic so you may just seen a trainee. Without private insurance that is the system here. I am simply too overwhelmed to fight and on days like this when I consider everything I have lost I feel a deep grief. and that’s the reality of it.

Ms Lux X

[mslux]

in reply to: Few things to help you feel better. #1175502

Thank you Naisly. Very useful. And you’re right. A smile does indeed go a long way

Ms Lux X

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177526

Hi Beauty2010,

Thank you for this post. It is so staggeringly familiar to me. I am often confused when people say ‘find really good doctors’. There are only so many I can be referred to and they all, bar none, sing from the same hymn sheet. If you are within range, you are treated and should not be feeling bad, certainly not ‘this bad’.
Within medical circles Endocrinology allegedly has a very poor reputation for being pretty crappy to the people, mostly women, that they treat. Particularly if they aren’t displaying the gratitude and wellness expected.
Neurosurgeons don’t fare well either! It relates to staggering arrogance I think but also a refusal to acknowledge that they don’t know many things about why Graves affects certain people long term.
The very prevalent thinking that women are somehow inherently hypochondriacal and neurotic definitely underpins much of this behaviour and it’s not only male specialists that display this unfortunately.
My hope would be that a space could be created to share information about what possibly might work or be tried, particularly for folks experiencing significant ongoing cognitive impairment and physical burnout.
For me a particular grief is loss of my singing voice as even talking for a few hours leads to vocal fatigue, weakness, hoarseness and pain.
Is this not a classic hypo symptom? I’m quite confused as hypo/hyper can overlap it seems.

There are ways, I’m convinced of it, for high functioning to be restored but I suspect that Endocrinology might be looking in the wrong place with Graves people experiencing long term disability.

Ms Lux X

[mslux]

in reply to: meds, nightmares and feeling blah #1177647

Hello MWhitney,

That all sounds beyond awful. I really hear you. I would also say it’s very early yet to consider having surgery and that carbimazole, a different anti-thyroid drug may suit you better, but it’s still very early and you may just be feeling very sad and slightly numb so soon after diagnosis.
It is a shock and whilst already dealing with chronic pain and other conditions, it sucks – but you have options and choices.
There are some very knowledgeable people online and some very good resources. It is scary and frightening but you are in a much stronger place now that you know what you’re dealing with.
Nightmares are often med related but also can be related to feelings of distress around health.
Your post is very honest and I’m glad you bothered to write it.

In solidarity,
Ms Lux X

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177524

Thanks Kimberly.

My ‘doc’ is actually my primary care coordinator. The Endos are sadly much worse. They say, you are within range, nothing more to be done. I got a PM from someone suggesting my dose of 5mg carbimazole was not as low as I perceived it to be.
I am not in remission as my Trab rises and I become hyper off meds.
I was on 60mg of carbimazole for a good eight plus months as I was diagnosed with ‘florid’ or ‘rampant’ Graves Disease with FT4 of 48.
I actually thought I had the early signs of Parkinsons I was shaking so badly.
I will continue to try and sort this out but would be happy to hear suggestions from anyone who’s story or situation is similar or was similar and how they are coping, or better still how they made a good recovery and got their brain back!

Ms Lux X

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177522

Thank you for the very honest responses. It is heartening to read them.

Yes, there is possibly an issue with certain folks being ‘hypothyroid’ and it is very clear that the range is broad and one’s own wellness within that may differ considerable from the next Graves patient’s. I don’t fit this category.
I have been so badly cognitively impaired that I would probably meet the diagnostic criteria for what would pass as Adult ADD. The reality for me is that the Graves itself has meant I am actually unable in many ways to process the material I am reading relating to the intricacies of the blood levels and different physiological markers. It’s like swimming in a fog of detachment and incomprehension. I have though, checked through my bloods numerous times and they appear normal.
I am constantly told by my doctor that I am ‘stressed’ and I need to run or do exercise. She is lovely but hasn’t a clue how invalidating this approach is.

So to be clear – what I feel are the very difficult aspects for me are severe problems with focus, concentration and deep thought. Reading is not possible, memorising text is not possible. Technology is completely beyond me and I am studying in an environment where very high levels of comprehension around technology is a necessity. I could certainly not work in a newsroom any more as I have no tolerance for stress and my mind blanks, I would make mistakes and I would most likely libel the media outlet by missing something important.
Fatigue is constant and when I become hyper off meds, I feel more energetic but I shake, loose my voice and am bordering on agitated most of the time.
Emotionally I am often numb, I have zero libido and I sleep constantly. Off carbimazole I can’t sleep at all.

I really, really, do want to stress that I desire a good recovery but I also desire acknowledgement from patient support and advocacy groups and forums that this is a real and ongoing problem for many people despite euthyroid status and an absence of other A.I. conditions.
Any suggestions would be welcome and I do mean that honestly.

Ms Lux X

[mslux]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177518

Hi Kimberly,

Thank you for your response. There is actually quite a body of clinical research supporting the fact that a significant proportion of Graves patients, despite being deemed as ‘successfully treatment’ by a variety of means, and excluding other A.I. conditions, not only do not return to baseline pre Graves wellness, but are cognitively, emotionally and physically impaired to the level of disability. Key areas related to memory, concentration, focus, mood, energy levels, stamina are recurrent themes.

I have included extracts from the abstracts below with the link following. I myself have been treated with carbimazole, all of my bloods are within range and I am considered to be approaching ‘euthyroid’ status by any endocrinologist I have seen as my bloods deem me to be ‘successfully treated’. My Trab and T4 rise abruptly once meds are discontinued but I am currently on the lowest dose of 5mg.
There is nothing else apparently accounting for unwellness and I have become severely down in myself as even resources like yours seem to push the idea that with ‘successful treatment’ a return to baseline functioning is to be expected. It has not been my experience and it is a recurrent topic on Graves boards and forums but is generally met with the same response that you gave today, which is, it is a rare experience. I don’t believe this to be so and there is data to support it but more importantly it leaves those of us who don’t fit the positive, upbeat mood on many of the pages, feeling even more isolated. I too was once very hopeful of a full recovery but the impact it has had on my life has been devastating and I was simply, respectfully, requesting that this please be acknowledged by moderators as I had seen it said here to a previous poster, when she expressed similar experiences to mine, that her experience was unusual and with good treatment she should expect to recover. I’m not sure it’s helpful as it leaves the person feeling they are further failing.

Ms Lux X

“Subjects reported significantly worse memory, attention, planning, and productivity while hyperthyroid than prior to becoming hyperthyroid, and, although somewhat improved once euthyroid, they reported residual cognitive deficits. These results suggest that neuropsychiatric impairments are highly prevalent in Graves’ disease, may lead to initial misdiagnosis or delays in diagnosis of the endocrine disorder, and may continue even once patients are believed to be euthyroid.”

http://www.ncbi.nlm.nih.gov/pubmed/9081554

“Conclusions: Impaired HRQOL is common in the acute phase of Graves’ disease. A significant proportion of the patients demonstrated persistent HRQOL impairment 1 year after initiation of treatment. Improvement of HRQOL in these patients remains a challenge for the clinician.”

http://www.eje-online.org/content/151/5/549.full.pdf

“The issue of residual complaints after treatment for hyperthyroidism in current euthyroid patients was investigated by means of a survey. Over one third of patients with a full-time job were unable to resume the same work after treatment. It appears that many of these patients are in need of psychological support.”

http://www.ncbi.nlm.nih.gov/pubmed/10674283

“Twenty-three per cent of the patients displayed marked to severe intellectual impairment, 31% moderate and 41% slight or no impairment compared with 0%, 31% and 69%, respectively, in the control group (P less than 0.05). Four patients had been granted disability pension on the basis of the intellectual dysfunction. Signs of intellectual impairment indicating irreversible brain dysfunction after thyrotoxicosis thus seem to be a frequent, although hitherto not generally recognized, finding.”

http://www.ncbi.nlm.nih.gov/pubmed/3739553

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