[mslux March 29, 2013 at 4:08 am Post count: 33]

#1059788

Hi,

I really wanted to post after reading comments from others regarding the long term impact of Graves, despite being ‘stable’, ‘within normal range’ or possibly even clinically ‘euthyroid’.
I have seen comments where moderators on the threads have responded by saying that ‘successful treatment’ should eventually lead to an absence of the more severe fatigue and cognitive impairment.
I have to say I have not found this to be true in my case, despite my bloods being ‘within range’ and my Trab reduced I still have overwhelming fatigue and severe problems with focus, concentration, organisational tasks and memory.
I have also experienced what could only be described as emotional numbness and a feeling of being slightly removed from life. I don’t feel my experience is unusual or unique.
This is a theme that I see on many forums and support pages from Graves patients. In fact, there is supportive research data to suggest that a proportion of Graves patients remain significantly impaired to the point of fulfilling ‘disability’ status, years after they have been declared to be technically ‘recovered’ in terms of blood levels.
The clinical picture is often a world away from the supposedly normal blood ranges. I have been told by three endocrinologists that I am effectively stable and psychiatric referral was suggested for my ‘symptoms’. This is terribly invalidating and undermining for people who know their ‘symptoms’ are auto immune related/Graves related. It’s not sadly an unusual picture.

I would be very grateful to the folks who do such a wonderful job in providing this online resource if there could be a more honest exploration of people’s experinces around this issues as, while it is necessary to give hope to those living with Graves and the newly diagnosed, it is also vital that we acknowledge the often devastating long term difficulties that so many people seem to be living with in quiet desperation, despite being stabilised on medication or declared ‘euthyroid’.

In doing this we may encourage others to speak up and underline to the medical community the importance of really listening to their patients and seeking a cause and a solution to the contributing factors to ongoing disability.

Kind Regards to all,
Ms Lux X

[KimberlyOnline Facilitator March 29, 2013 at 10:26 am Post count: 4294]

#1177517

Hello – The vast majority of patients do see relief from symptoms once levels have been stabilized, but certainly we welcome open discussion of all patient experiences here.

There hasn’t been any research on this issue to my knowledge on Graves’, although there was a study on Hashimoto’s thyroiditis that indicated that symptoms can still impact quality of life, despite “normal” thyroid hormone levels.

http://www.sciencedaily.com/releases/2011/02/110225123029.htm

(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).

You didn’t mention how you had been treated for Graves’, but it is definitely helpful to get hard copies of your labs so you can see for yourself where you fall within the ‘normal” range for TSH, Free T4 and T3. This is a fairly wide range, and some patients find that they feel their best at a specific point in the range.

One other avenue to explore might be whether there might be a second autoimmune condition that is contributing to your symptoms. Patients with one autoimmune disease are at increased risk for getting a second. This study looked at some of the more common autoimmune conditions that can co-exist with Graves’.

http://fpn.imng.com/fileadmin/content_pdf/fpn/archive_pdf/vol39iss3/70090_main.pdf

Bottom line, you *deserve* to get your quality of life back, so please be persistent until you can find a doctor who will help you put the puzzle pieces together!

[mslux March 29, 2013 at 12:23 pm Post count: 33]

#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

[Naisly March 29, 2013 at 1:17 pm Post count: 143]

#1177519

I cant agree with you more mslux. I have seen it time again how many people suffer after treatment. It is a WORLD epidemic and it seems many new groups are forming because of such. Whether it be any thyroid disorders, there is a major problem with lack of support from the people who are supposed to be looking out for us – doctors, politicians, or associations. I can only hope with the large influx of actors speaking out and joining organizations that our voice will be heard.

But in the mean time it is a scary thing. Take Anna Nicole Smith, her autopsy revealed she had a thyroid disorder which she nor anyone else knew about. I ran across some numbers a while ago on suicides and how many of them had thyroid issues, the number was very high.

People must remember before Graves Disease was first discovered and the story around that – The biggest symptom was cognitive deficits, which led to a lot of these women ending up in insane asylums.

I personally believe (through my research) that a lot of damage can occur when not properly treated in a timely fashion (IE: Finding a doctor, Waiting for appointments, proper dosing of medication, knowledgeable doctor, diet and lifestyle changes etc) since the thyroid hormones turn on every cell. An example of this is, if you were not to take your thyroid supplement for 2weeks (give or take) you will die because every cell shuts down.

Anyways, there is a lot more to this than what meets the eye that is for sure!

[Stymie March 29, 2013 at 2:17 pm Post count: 195]

#1177520

I agree as well. I have not felt well cognitively in about 6 months. I work full time and just simple things like words don’t come like they used to. I feel as though I walk around in a fog and one day it’s going to clear and I’m going to say oh! There I am! Hope. Is the key word. I’m hopeful.

My levels are within normal range, though I have yet to reach this magical sweet spot. Again i am hoping with my next med dosage increase I will be there or really close to it.

So until that happens I spend a lot of my time at work checking and rechecking my work to try and prevent mistakes. And trying hard to do word puzzles and brain games to help my brain in any way I can.

I’m here if anyone wants to talk on this subject or anything for that matter. Pm me.

Diane

[Raspberry March 29, 2013 at 4:12 pm Post count: 273]

#1177521

I believe the reason for this problem is that the majority of endocrinologists will declare a person euthyroid, in the normal range, when they are actually hypothyroid. Brain fog, cognitive deficits, joint pain are hypothyroid symptoms. The TSH range used to be (0.5-5.5) and this range is now believed to have been created including a population of some people who were hypothyroid. In 2002 the National Academy of Clinical Biochemistry determined the actual range for healthy people is (0.4-2.5) and based on this the American Association of Clinical Endocrinologists recommended the range be changed to (0.3-3.0). Not all labs and doctors have accepted these changes and call a person’s thyroid status “normal” when it is not. Also I’ve read little about corresponding changes being made in the FT4 and FT3 ranges so if the FT4 range is (.8-1. and you are at .9….gee maybe you are actually hypo! (Source: TSH Normal Range)

[mslux March 29, 2013 at 4:45 pm Post count: 33]

#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

[KimberlyOnline Facilitator March 29, 2013 at 6:57 pm Post count: 4294]

#1177523

Hello – I wish I had a better answer for you, but perhaps a second opinion might be helpful…since your current doc seems willing to write off your symptoms to stress. Perhaps someone with a fresh set of eyes (and ears) could take a look at your symptoms and help you put the puzzle pieces together.

Also, I’m not sure whether you are currently in remission or whether you are currently taking carbimazole. Maybe discuss with your doc a switch to the other anti-thyroid drug, PTU? Carbimazole/methimazole has a better safety record with regard to liver issues, but since your quality of life is clearly being impacted, it might be worth a conversation at least?

Take care — and please keep us posted on how you are doing!

[mslux March 30, 2013 at 4:19 am Post count: 33]

#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

[beauty2010 March 30, 2013 at 5:48 am Post count: 23]

#1177525

Hi
Thanks so much for starting this thread.
In my experience, Graves disease symptoms take ages to go away. I was diagnosed late 2008 with TSH of 0 and T4 of 60 and treated with carbimazole. I was off work for nearly a year, and continued to have symptoms of fatigue, anxiety and decreased productivity for the next three years. I used to go to work for three days and then sleep on my day off – for the whole day. It was not until the summer of 2011 that I began to feel like my old self, but symptoms recurred around beginning of 2012. My GP treated symptoms with carbimazole even though my blood levels were normal, and they abated.
I was concerned that if I did not take action, my illness would return as the symptoms I was having were similar to the symptoms I had before my first attack of Graves.
I went to see my endocrinologist, who was adamant that these symptoms were nothing to do with the thyroid and strongly recommended a referral to a psychiatrist which I refused, and strongly discouraged me from continuing to take carbimazole. I therefore came off the carbimazole and some months later was diagnosed with hyperthyroidism, TSH 0, T4 32. I was gobsmacked when I went again to see my endocrinologist, that he still did not give any credence to my earlier symptoms, which I felt were a prodrome. I could understand him not wanting to treat with carbimazole with normal bloods, but I did feel that some credence should be given to the opinion of a patient who had been through it all before and felt that their disease was returning. He again said I should go and see a psychiatrist, because my symptoms were ‘too bad’ for my levels.
I did go and see the psychiatrist, who did not find any mental ill health and discharged me.
I agree that endocrinologists are often dismissive of symptoms that do not fit into their disease model, especially as there is literature describing long term disability from Graves. I also think that it is arrogant of professionals not to admit that their knowlege of an illness is incomplete (as it must be for all illnesses) and I was disconcerted at not being listened to and respected for my opinion.
I don’t have any magic answers about how to cope, but I feel that my body and brain have been damaged by the illness. I guess all I can do is listen to my body, rest when I need to rest, eat well, and excercise in moderation (severe excercise seems to make me worse when I am vulnerable to relapse). I have also tried acupuncture and meditation which are calming. When our financial situation allows, I may reduce my work hours. I try to find ways of addressing anxiety. I work in health services, so I hope to be able to use my experience to understand the illness experience of other people. The most important thing I have learnt is how important it is to feel listened to and validated, because the relationship a patient has with her medical care provider can be therapeutic in itself.
Thanks again
B

[mslux March 31, 2013 at 4:21 am Post count: 33]

#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

[beauty2010 March 31, 2013 at 9:43 am Post count: 23]

#1177527

Hi Mslux
thanks for your reply.
Do pm me if you would like to. I feel very strongly about this and would love to try to make a difference to how people like us are treated.
Bxx

[eward March 31, 2013 at 1:05 pm Post count: 2]

#1177528

Straight T4 meds are not the answer for everyone. Here a link that discusses reverse T3 problems and how T4 converts into too much reverse T3, which blocks the receptor sites that allow T3 to uptake:

(Link removed – please see “New User? Read This First!” thread for info on posting links)

[Naisly March 31, 2013 at 1:14 pm Post count: 143]

#1177529

This is to add to what AzGravesGuy had said on an other post http://gdatf.org/forum/topic/43359/

Few things I have learned about doctors. One of the first things they learn in med school is ‘Occam’s razor’ and this is imbedded in their minds throughout schooling. So for them, state the obvious first.

Doctors have little training on medications, they heavily rely on that big book they slam down on their desk. Here’s the thing, lets just say the doctor went through med school 20 years ago, he/she will somewhat retain the knowledge that was taught then. We know things change, medications change etc. Problem being is that doctors are very busy people. It is not humanly possible for them to keep up so they mostly rely on what was taught 20years before. (there is actually quite a bit of literature regarding this)

An example of this is – It used to be that 30mg MMI once a day was standard starting dose for treatment of graves, recently this has changed to 20mg. They found that 30mg was too high for most as a lot of people had reactions ie: hives and it is harder for the liver to metabolize causing liver enzymes to go up (smaller doses are proven to be a lot safer for the liver) But you see doctors won’t know this unless they keep up, and graves is fairly rare, there are other diseases that have a higher priority. Most doctors will take you off the meds completely, not realizing that the high dose was the cause (in most cases).

This goes for dosing regarding TSH values only.

Doctors can not possibly know every disease there is (there are over 20,000 diseases) unless they are personally connected to it. The human brain can only retain a certain amount of information, unless they are a rare individual.

Tips:

• Endos: Walk into their waiting room, look around and see if they have literature/pamphlets etc on Graves Disease, if they don’t walk the other way.
• Your Pharmacist can be your best friend.
• ENT’s are a great choice for thyroid disorders in place of endos.
• Internists are second.
• And above all — You are hiring them to do a job – Is it fair they get paid to make you NOT happy?

[KimberlyOnline Facilitator April 1, 2013 at 10:35 am Post count: 4294]

#1177530

@mslux – Interesting comments about singing. I am stable on methimazole (similar to carbimazole), but my singing voice has definitely been impacted. I was pretty much a “sing in the shower” type of person…never in public…so it’s not really something that I have pursued. But there has definitely been an impact…lots of cracks and warbles! Also, PLEASE take with a grain of salt anyone who PMs you about dosing. We are all fellow patients here, and this is an important decision that needs to be made between you and your doctor!

@beauty2010 – Thanks so much for sharing your experience!

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