Viewing 15 posts - 1 through 15 (of 18 total)
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  • SueAndHerZoo
    Post count: 439

    Been a looooooong time since I posted…. so grateful Kimberly is still here keeping this board alive! Quick overview: diagnosed with Graves in 2012, had a TT in 2013, and have been riding the TSH rollercoaster ever since. My levels keep changing and I am apparently very sensitive to Synthroid/Levo because even the tiniest dose change swings my levels in the the opposite direction. I’ve been riding the waves and changing doses pretty much every 6 months and finally went to a new endo to see if he could tell me why this keeps happening. He had two things to say:

    I am one of the 5% of patients who are SUPER SENSITIVE (his words) to Synthroid and advised that I keep making the dose changes in very small increments.

    His second theory was that because I am gluten intolerant (I can eat it occasionally with no issues but if I have too much too often, it causes gastrointestinal distress (which is not great since I already have colitis). He thinks that if I completely stopped eating gluten and kept my gut in a healthy state that the TSH fluctuations would stop. I didn’t think to ask this until after I left his office, but I’m guessing he means that I absorb the Synthroid differently depending on the state of my gut?

    Does that sound like a feasible explanation / solution to anyone here? And if so, when would I absorb more of the Synthroid: when my gut is torn up or when it’s healthy?

    I’ve pretty much accepted that I’m going to be on this rollercoaster forever but if there is a chance that never eating gluten again would stop this madness, I might try. Your thoughts?
    Sue

    Liz1967
    Post count: 305

    This makes sense. Mast cells, which secrete histamine, affect T3 and gluten intolerance also has a histamine connection. It could be the histamine levels and activation of mast cells that cause your problem. It could also be an absorption issue. Also there is a seasonal variation in TSH levels most people are unaware of, trends higher in winter and lower in summer, which might cause a seasonal, maybe unnecessary, shift in your dose – unnecessary because people with normal thyroids see this same seasonal variation. Certainly worth a trial of total gluten elimination.

    SueAndHerZoo
    Post count: 439

    Wow – thank you for that info. I really know very little about mast cells and histamine but it’s definitely something I should learn more about as apparently it affects my TSH and my colitis. I also had no idea there were seasonal fluctuations with thyroid levels – very interesting!

    That information will definitely be helpful the next time I see my levels are only a little off and I’m not really experiencing any symptoms, at that point perhaps I’ll wait to stay at the same dose with the expectation that it will regulate as the year goes on. So now to be MUCH more careful with gluten and see how it goes. Thanks again for the reply!
    Sue

    Kimberly
    Online Facilitator
    Post count: 4262

    Great to see you!

    I’ve not seen research on gluten intolerance and absorption, but there *have* been studies on celiac and poor absorption of levothyroxine:

    http://www.thyroid.org/wp-content/uploads/2012/07/clinthy_v243_4_5.pdf

    https://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-5-issue-6/vol-5-issue-6-p-3-4/#:~:text=In%20many%20patients%20with%20celiac,a%20diagnosis%20of%20celiac%20disease.

    One question you might ask your doctor is if there is any concern that you have celiac. If so, your doc might want you to wait on going gluten free until after you’ve gone through testing (as that can affect the results).

    Take care!

    SueAndHerZoo
    Post count: 439

    Thanks for the links, Kimberly….. I’ll go check them out right now. Actually I don’t have celiac disease, I am only “gluten intolerant”. I’ve been tested for all types of sensitivities and I’m not severely intolerant to gluten – it just becomes a problem if I ingest a lot of it over a short period of time.

    My colitis has been in remission for 9 months (meaning I’m off all colitis meds at the moment) and as long as I behave with my foods, the colitis is manageable. And since I seem to be “hyper” more than “hypo” it seems, if anything, I’m absorbing my Synthroid TOO well. (shrug)

    Lucky me for being “super sensitive” to everything that goes into my body, as well as super sensitive to every tiny side effect and symptom. I so appreciate being able to come here to get valuable information and helpful resources….. thanks to everyone for being here.
    Sue

    giannam
    Post count: 1

    Hi Sue, and hello everyone!

    This is my first ever post and I’m happy to be here! I was diagnosed with Grave’s a couple years ago and received the radioactive iodine treatment so now I am hypo and currently taking Synthroid.

    This post was very fascinating to me; thank you Sue for sharing! I also deal with sensitivity to dosage and frequent gastro issues. I tried a gluten free diet for a couple weeks and felt a little bit better but did not notice any drastic improvements or changes with my thyroid levels or overall. It is definitely worth researching as it is an interesting topic.

    Thank you Kimberly for the resources as well! It’s comforting to know there are others that go through the same issues throughout all of this!

    -Gianna

    Meredith2021
    Post count: 5

    Gianna—
    Hi, I’m trying to decide on treatment for Graves.
    Can you tell me— how was your radioactive iodine treatment?
    What side effects if any did you have? How did you tolerate it? How long did you take it for?

    Why did you decide on RAI instead of anti thyroid drug, like Methimazole?
    And did your doctor discuss taking ATD before RAI as -pretreatment, which some experts recommend, apparently?

    I keep reading that RAI is more successful at remission and with less side effects. Yet, a couple of doctors told me they use mostly ATD. I don’t know if this is a trend or what. I may look for a new specialist.
    Any feedback from you on your experience is appreciated.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello and welcome!

    First, do you mind if we work with you to update your screen name to avoid confusion with our admin, Ellen_B?

    Hopefully, you will get some personal experiences here. You might also join our closed Facebook group, as that is a lot more active these days.

    I suspect that what you’ve read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves’. The goal these days with RAI is to completely knock out all thyroid hormone production, so you *aren’t* likely to have a recurrence of hyperthyroidism. All three treatment options have risks and benefits.

    If you are considering antithyroid medications, you might be interested in this recent webinar that the GDATF hosted: https://www.youtube.com/watch?v=WJjSzjFyNU4&t=945s

    Take care!

    Meredith2021
    Post count: 5

    Hi Kimberly—thanks for your reply June 11. Per your advice I’ll update my screen name, ellenb. Do I just log out, and then re-register, or what?

    Re treatment– you wrote:
    ‘I suspect that what you’ve read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves’.

    Could you clarify that? I’ve read that RAI does in fact cause remission from both H. Thyroid and Graves’.

    And I have a question on GDATF’s interesting February webinar that you mentioned— ‘The Long Term Use of Antithyroid Medication’.

    Two experts spoke on the advantages of anti-thyroid drugs as the best treatment—including Dr. David S. Cooper – professor Johns Hopkins, past President ATA, editor of endocrinology journals, etc.

    They showed statistics that ATD was better than RAI, but also they showed that it led to actual remission in only 50% of cases. And said many patients prefer ATD, so doctors go along with patients’ preferences, if possible.

    But the surprise was that towards the end of the webinar on ATD, Dr. Cooper said he himself took radioactive iodine (RAI) for his own Graves Disease. Said he’s doing fine, and he said so do most people who take it!

    What did you think about that? I don’t get why Dr. Cooper would give a lecture promoting ATD, then tell us he used the other treatment, RAI, for his own Graves Disease.

    GDAFT recently had an article explaining RAI advantages, written some years ago:
    “Treating Graves’ with radioactive iodine– Treatment of Graves’ Disease by the “Atomic Cocktail” by Malcolm R. Powell, M.D

    So why do patients or doctors choose ATD (Methimazole) with frequent relapse rates? And mainly, the side effects can be so much worse.

    Also, some doctors say to use ATD as pretreatment for RAI. But, an article in Medscape Medical News said:
    Radioactive Iodine Can Be First-Line for Hyperthyroidism (in the UK)

    Thank you for any feedback. It’s a confusing matter.

    Liz1967
    Post count: 305

    https://pubmed.ncbi.nlm.nih.gov/31482765/

    2019 study, another perspective on ATD treatment. Note especially the “conclusion” section.

    Kimberly
    Online Facilitator
    Post count: 4262

    (Edited) Hello – Thanks for being flexible on the username to help us avoid confusion with our other admin! I changed it to EB2021 – but can change it to something else if you have a preference.

    You hear different definitions of remission. The one from the American Thyroid Association is one year of normal levels with *no* medications – so that one wouldn’t apply with RAI. Another definition is undetectable antibody levels, which you could eventually get to with RAI, although antibody levels tend to spike in the months following treatment.

    I don’t know when the presenter was treated with RAI, but it was at least prior to 2009, when I first heard him give a lecture at a GDATF event. Back then, RAI was the front-line treatment for Graves’ in the USA. These days, ATDs are more commonly used in newly diagnosed patients. I’ve since heard him lecture several times, and he’s not suggesting ATDs are “better” – just providing info on options.

    All three treatment options have risks and benefits. The American Thyroid Association has a nice set of guidelines that include info on when patients might favor one treatment option over the others:
    https://www.liebertpub.com/doi/full/10.1089/thy.2016.0229

    Those who choose ATDs either want an opportunity to try for remission – or they choose to continue on a low dose of meds. (The risk of side effects is lower with a low dose, and with one exception – vasculitis – the first 90 days are the highest risk time for side effects.)

    Unless you have an obvious issue that prevents you from choosing one of the three treatment options (for example, docs will NOT recommend RAI if you are pregnant or of you have active, severe eye involvement) whatever choice you make in conjunction with your doctor is a valid one.

    Meredith2021
    Post count: 5

    Kimberly. Thanks for changing my sign in, so no confusion with other person. How about changing my user name to Meredith– my 1st name. (ellen is my middle name)
    Also on my other post, why does it say ‘Registered: 2020-11-08’?
    I registered April 1, 2021, I think. Can we change it?

    Your post was informative, and I’ll read, or re-read, the ATA guidelines you cited. Is there a webinar on RAI that I can see? Maybe with Dr. Cooper in a past lecture.

    Re which treatment—seems some doctors and sites say that if you do take RAI, you should still pretreat with ATD. But I saw other studies saying that’s not needed, you can start with RAI.

    Another poster, Liz, cited— https://pubmed.ncbi.nlm.nih.gov/31482765/

    The conclusion of the study: ‘Patients using ATD have only a 50.3% chance of ultimately avoiding ablative treatment and only a 40% chance of eventually being euthyroid without thyroid medication.’

    And as you wrote—‘RAI was the front-line treatment for Graves’ in the USA. These days, ATDs are more commonly used in newly diagnosed patients.’

    Yes, I’ve read the trend is changing toward more ATD. Why is this?
    And I’m interested why in Europe ATD has been more commonly prescribed. Interesting article on this in Endocrine News per the Endocrine Society: “Transatlantic Differences Treating Graves’ Hyperthyroidism”.

    It quotes the writers of guideines for the professional organizations here and abroad–Dr. Ross and Dr. Kahaly. But it doesn’t really go into the reasons for the difference. I checked the web but can’t find.

    Liz1967
    Post count: 305

    I realize total thyroidectomy is expensive for insurance companies vs ATD or RAI, but at least for me, it has been a blessing. My endo also did not present it as an option, but then after TT I no longer needed an endo, my primary care has managed my thyroid replacement very well for the past 7 years. It always bothers me when people with Graves think their only choices are ATD or RAI.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – We already had a user named “Meredith”, so I switched it to “Meredith2021”. Not sure why the registration date is being glitchy – I don’t think I can change that on my end.

    With Graves’, some issues have wide agreement among doctors, such as no RAI if you are pregnant. However, there are a lot of other issues that aren’t fully settled, such as pretreatment with ATDs prior to RAI. The American Thyroid Association guidelines that I mentioned earlier do recommend pretreatment for patients who are at risk of a worsening of hyperthyroidism – specifically the elderly and those with conditions like heart issues. However, they rank their recommendations according to the amount of evidence available, and this one was noted as “weak”. Ultimately, this is a decision that you and your doctor will need to make.

    This is a presentation from a GDATF conference from around 10 years ago, but the basics should still be the same. (Other than we have more specific guidelines on when RAI should be used in patients with existing eye involvement.)

    https://www.youtube.com/watch?v=XNejWQCwB10

    Dr. Cooper notes in his presentation on long-term use of ATDs that the shift in the USA is largely patient-driven, from those who wish to make an effort to keep their thyroid. I also suspect that it has to do with heightened awareness of potential eye issues.

    Again, ultimately, this is a choice that you and your doctor need to make. As the American Thyroid Association notes, “Once it has been established that the patient is hyperthyroid and the cause is GD, the patient and physician must choose between three effective and relatively safe initial treatment options: RAI therapy, ATDs, or thyroidectomy…the treating physician and patient should discuss each of the treatment options, including the logistics, benefits, expected speed of recovery, drawbacks, potential side effects, and costs. This sets the stage for the physician to make recommendations based on best clinical judgment and allows the final decision to incorporate the personal values and preferences of the patient.”

    Meredith2021
    Post count: 5

    Kimberly– loved your article — ‘Playing on One String – Day to Day Life With Graves’….re famous violinist Paganini’s broken violin strings and our dealing with Graves.
    Btw, I watched a PBS show called Now Hear This. A violinist visits EU towns where lived famous composers—Bach, Vivaldi, Mozart, etc — -he plays violin and tours the historic places with fellow musicians and also shows some old violins.

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