Writing My Research Paper On Graves' Disease Which I Too Have Been Diagnosed With - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Writing My Research Paper On Graves' Disease Which I Too Have Been Diagnosed With

Remission Will I ever feel better Do I have to do RAI

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#1 Breaking Daily Bread

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Posted 14 November 2020 - 05:32 PM

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Hello everyone. I am so thankful to have found this support group.

 

I've been diagnosed with Graves' Disease too and my Endo Doc has told me, from the get go that I have only two options - Radiation or Surgery - to treat my disease. She started me on Methamizole and within three weeks, I had a VERY severe allergic reaction. I broke out in a terrible rash all over my legs and I was covered in welts (itchy as all get out and painful to the core). Sorry. I'm also a student and I've decided to write my research paper on Graves' Disease with the hope of educating myself and maybe someday having a resource for others who get diagnosed and feel utterly lost - like me - especially in the beginning. Suffice it to say, the Endo doc took me off the Methamizole immediately, and after my rash went away, she put me on PTU and that seems to be working so far. She has said that it's a short term fix and that I really need to start thinking about Radiation or Surgery.

 

Mind you, before I got sent to the Endo specialist, my primary care physician told me that my symptoms appeared to be "flu like" and that I was probably just suffering from stress from school and my work life. It wasn't until I mentioned that my older sister had been diagnosed with Graves' five years prior (with the bulging eyes), that the light bulb went on in his head and he said that my symptoms "appear to mimic" Graves' disease now that he "thought more about it". Oh my goodness. My symptoms didn't appear to me to be flu like but then again, I didn't go to med school. Sorry for the sarcasm but come on. My symptoms included losing excessive weight and thinning hair, having little to no appetite, stress extraordinaire, food racing right through me and feeling utterly helpless and weak, so much so that I couldn't even get out of bed on the daily, plus a racing heart and extremely high blood pressure. Had I not mentioned it to him, I often wonder how long it would have gone undiagnosed. I apologize for my ramble but it gets so infuriating at times. My Endo Doc also keeps telling me that I'd eventually have to make a decision and agree to radiation or surgery. I simply beg to differ and hope and believe there's another way. Is there?

 

As I said, I'm trying to get this research done (for myself and maybe for others too) and I want to know what you all think and I'd like to just put it out there. Please know that I realize, we are all different and have our own unique set of circumstances. And to be perfectly candid, I also have this need to be assured that I'm really not alone in this. Heavy sigh.

 

I've put together a series of questions to help me with my research and hoping maybe some of you could take a moment to answer them? I want to say right up front, I am not selling anything. I don't have a business. I'm just trying to information gather so I can pass this class. Part of our research assignment is to poll a group on a specific topic (and like I said I've chosen Graves') and then, I'm supposed to try and "create" a product to help my group, if that even makes sense. Our professor has challenged us and pretty much told us out the gate, this not an easy assignment because most people will ignore your request and just aren't fond of surveys/polls/questions, or sharing, etc., Most people are willing to share their trials and stories, if they remain anonymous. That's probably some truth to that. I really don't know because I've never actually done this before. But to be honest, I really want some guidance too on a more personal level from those of you who have walked this path ahead of me and I'm hoping this is a good place to start. Thank you so much for taking the time to read my post. 

 

Shall I ask my questions here? Please advise. I'd be so grateful. :)

 

 

If any would like to help me with my research paper. Please comment below and I can post my questions. I'd hate to post them and find that there's not an interest in participating. 




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#2 Allies

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Posted 15 November 2020 - 03:48 PM

Hi Breaking Daily Bread

Welcome, sorry to hear you have Grave's disease :( ...but you are not alone and there is hope :)

Being treated for Grave's disease can be challenging and sometimes stressful - unless you have a good doctor. I'm not sure why, but doctors often forget that antithyroid drug therapy, undertaken correctly, can be effective for many people - and is the only treatment modality that gives us a decent chance at reaching remission. The stated aim of thyroidectomy and radioactive iodine ablation is to cause hypothyroidism, so is essentially replacing one problem with a different problem.

Both the European and American guidelines point out that most side effects and adverse reactions to antithyroid medications are usually dose dependent; so one's thyroid hormone levels (FT3 and FT4) and the amount of the drug given should be seriously considered when alergic type reactions occur. For example on a too high dose of carbimazole I had INSANELY itchy lower legs and this cleared up once my dose was lowered to a more appropriate level. There's a reason for keeping the ATDs as low as possible while controlling thyroid hormone production! These two guidelines also point out that ATD dose should be adjusted according to thyroid hormone levels and not TSH since TSH is an unreliable metric in early Grave's disease. This is where many of us run into difficulties. Since TSH can be quite a good marker of thyroid function for healthy people, some doctors interpret this to mean that it's also a cheap and effective way to monitor thyroid health for everyone. That's not the case once we have an autoimmune response happening at the level of the TSH receptor cells though.

There's a whole family of autoimmune antibodies that are active in Graves disease. On mass these are called TSH receptor antibodies (TRAB) as they bind to TSH receptor cells throughout the body. There are currently three known sub-types of TRAB:

Stimulating types (such as thyroid stimulating immunoglobulin - TSI) which are widely recognised as the cause of hyperthyroid phases of Grave's disease

Blocking or inhibitory types (often called thyroid blocking antibodies - TBAB or TSH receptor blocking antibodies TSH-R-blocking Ab ) which may in some instances cause hypothyroidism.

The third type has been known about for a long time but only recently has technology been advanced enough to investigate what these do at a cellular level - they have traditionally been called 'neutral' TRAB, but thinking is shifting away from the idea that they do nothing.

All three types of TRAB bind to our TSH receptor cells, not just on our thyroid glands but throughout the body. The stimulating and blocking types bind to areas of the TSH receptor that prevent TSH from binding there - this has a knock on effect on the whole hypothalmus/ pituitary/ thyroid feedback loop and would appear to be the main reason why TSH levels are so unreliable for titrating drugs.

Back to one of your question though: I'm pretty firmly convinced that there are alternatives to definitive therapy - first and foremost the correct adjustment of ATDs may be enough to help most people into remission. Failing that (which some doctors do), figuring out what is causing the immune response and addressing that seems to be helpful - and this is where individual differences come into play because each of us can have quite different autoimmune triggers. Unless we have an integrated or functional medical practitioner, we pretty much have to figure this bit out for ourselves. There are other treatments in the pipeline, for example the use of monoclonal antibodies (ie man-made antibodies), a technology that appears to have been adapted for use in the treatment of covid-19 - but these are not yet available for general use

Regarding your research paper:
What area are you studying in?

I'm quite happy to answer questions. Some people might prefer to answer questions via private messaging ( "my conversations"), we may even have some shy members who might prefer to respond to you via email. You may want to consider broadening your base too, participation on this forum tends to ebb and flow a bit, plus this site is mainly focused on what we can do to avoid definitive therapies and how we cope long term with Grave's. Having a look at forums dedicated to hypothyroidism can be a real eye opener and there are usually participants who have undergone either thyroidectomy or RAI - some of these might be interested in responding too. Of course with support forums you will have a high proportion of people for whom medical advice and/or treatment has not worked out well :(

I think that posting your research questions here on the open forum and giving people the option to reply annonymously might work, can I suggest though separate threads for your research and your own questions/experiences? Just to minimize confusion :)

Besides all that, for yourself and for research purposes, as a starting point you could have a look at the 2018 European Thyroid Association Guideline for the Management of Graves' Hyperthyroidism ( https://www.ncbi.nlm...les/PMC6140607/ ) and the 2016 American Thyroid Association Guidelines for Diagnosis and Management of Hyperthyroidism and Other Causes of Thyrotoxicosis ( https://www.liebertp...9/thy.2016.0229 ). The UK updated their guidance for the treatment of thyroid disorders in 2019 (from memory), they are so disappointing and vague around the area of Grave's disease that I haven't even saved a link to these (short-term costs of treatment seem to be more important than patient quality of life, long-term costs - or patient preference for that matter - and to that end they recommend RAI as the front-line treatment)

Cheers and {{{hugs}}}
Allies

#3 mmztcass

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Posted 17 November 2020 - 11:36 AM

Hello Breaking Daily Bread:

 

I am sorry you are having issues and it is great that you are doing a research on this. 

 

This board strives to help those not to go down the RAI and surgery paths.  One can remain on long term ATD successfully and not have issues.  I am one example of having been on the low dosed MMI (Methimazole) for 17 years before trying for remission that I am currently on.

 

Now that remissions are possible along with proper diet, the use of green household and personal products and avoidance of Graves' Disease triggers - environmental and diet, we can have better qualities of life.    

 

You will definitely need to see if the people here can respond to you by private messages or by email.  I hope you will get what you need.

 

PM me through the board with your questions.

 

{{{hugs}}}



#4 Breaking Daily Bread

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Posted 18 November 2020 - 03:26 PM

Hello Allie! Awww wow! Thank you SO MUCH for responding and for taking the time to share such a wealth of information with me. 

 

I wish I knew all of those things when I was first diagnosed with Graves' Disease. I was terribly lost for months and felt pushed in a corner for just as long until I learned to become my own health and wellness advocate. 

 

I've been under the weather for the past week so I apologize for my delayed reply. I haven't formulated my questions yet. I'm actually in school studying Marketing and Communications and this project is for one of my classes. It's feeling a bit overwhelming at the moment but once I get my questions together, I'll post them on here and hope others would be interested in sharing their story and responding to questions. I agree that some might be shy to respond which I completely understand. I'll provide my email address so they can respond privately if they wish. Good idea. Thank you also for sharing your ideas about forums, I'll have to pursue that avenue - that's great. 

 

I hope this message finds you doing well and staying safe.

 

Take care and I will be back on here once I get my notes together and am feeling more like myself again.



#5 Allies

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Posted 19 November 2020 - 03:59 PM

Thanks for the feedback :) and you are most welcome!

If you don't want to publish your email address on the open forum you could always offer to provide that by private messaging upon request :)

Keep in mind that I am just a patient myself, I feel I was forced into researching things for myself because of some contradictory messages I was getting from the endo I saw initially, and what I think was rather poor and uncompliant treatment (ie endo not following the guidelines that she said she was using). Maybe this was a bit of a silver lining, since I've often enjoyed the process of researching and I may not have done so if my treatment had been better





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