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in reply to: Just realized this could kill me #1184618
Hello and welcome – I’m not sure what type of allergic reaction you had. Hives is a common one, but it can be tricky to sort out whether those were caused by the meds or by the hyperthyroidism itself.
The latest medical guidance notes that for “minor” skin irritation with Antithyroid meds, you can keep taking the drug in conjunction with antihistamines. Ultimately, your doctor would need to make a judgment call as to whether or not your reaction was “minor”.
For information on the pros/cons of all 3 treatment options, check out the “Treatment Options” thread in the announcements section of the forum.
For someone who is extremely hyperthyroid, special precautions are needed prior to surgery or RAI. For RAI, the medical guidance recommends a beta blocker prior to treatment for patients with Free T4 levels 2-3x the upper limit of normal. (Not everyone can take a beta blocker, as this can potentially worsen asthma and certain blood vessel conditions.) The guidance also says that pretreatment with methimazole should be “considered” in these cases.
Take care – and keep us posted!
in reply to: Cognitive issues 1.5 years post TT #1184607Hello and welcome – hopefully, others who have had thyroidectomy will chime in here, but a couple of thoughts…
First, is your doctor looking at Free T4 and T3 in addition to TSH? Many docs will only use TSH following surgery, but if you are symptomatic, it makes sense to get the additional labs done.
If you’ve been experiencing up-and-down levels for the last couple of years, it could just be that your body is still healing. It would also make sense to discuss your symptoms with your primary care doc to rule out any other possible issues.
Finally, some patients report improvements using T3/T4 combination therapy, such as taking desiccated products like Armour or adding Cytomel to their existing T4 therapy. Not all doctors approve of combination therapy, and some Graves’ patients report that combination therapy brought back their old hypER symptoms, but if your quality of life is suffering, it’s at least worth a discussion with your provider.
I haven’t had thyroidectomy, and my memory is definitely not what it was pre-Graves’. I manage to get by though, by writing down everything and leaving reminders or setting alarms when needed!
in reply to: Sub clinical hypothyroidism post RAI #1184605Hello – Yes, I would definitely question the reasoning behind not changing your dosage! When my TSH got up to 6, I was *definitely* symptomatic.
To clarify, Tirosint is a gel capsule – I didn’t want to leave the impression that it was a topical treatment!
The U.S. National Library of Medicine says there aren’t any known interactions with Maca, but it would be worth exploring this further with your doctor. Here is some additional info:
(Note on links: if you click directly on the following link, 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).
https://medlineplus.gov/druginfo/natural/555.html
I will take my pill if I wake up in the middle of the night (which is almost every night) to avoid waiting an hour after I get up to have breakfast.
I haven’t had any issues with this.in reply to: Sub clinical hypothyroidism post RAI #1184603Hello and welcome – Hopefully, others who have had RAI will chime in here. Also, hopefully, you and your doc are still working on dose adjustments to get your TSH back in range, even though your T4 is normal.
A few other thoughts…
1. Make sure you are consistently taking the meds on an empty stomach and waiting 4 hours to take any soy/iron/calcium supplements.
2. There is a brand name replacement hormone called Tirosint that is gel-based, so theoretically, the absorption should be better.
3. I assume that you’ve been taking Synthroid all along, but if not, switching meds can require a dose adjustment.
4. Sometimes digestive issues like celiac disease can affect absorption, so if you continue to have difficulty, that might be worth checking out.
RAI generally takes 6-18 weeks to fully do it’s work, so I don’t think it’s all that unusual that you have needed a consistently higher dose over the last few months. Hopefully, you will get to that “sweet spot” soon!
in reply to: TT and eye disease symptoms #1184584@Shirley – The most well-known studies (Bartalena 1998 and Traisk 2009) left out thyroidectomy. However, the link that I included a few posts above is from UM Kellogg and found a reduced risk of TED for patients undergoing surgery.
This is also an interesting read from last year from Dr. Bartalena:
(Note on links: if you click directly on the following link, 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).
in reply to: I hate Graves Disease #1184575@Sandy40 – Links here can only be posted from specific sources; below is an excerpt from our forum guidelines that addresses links:
Posting of Links. Posted links must either come from (a) a well-established, peer-reviewed medical journal (ex: New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid, etc.) or (b) an established medical association or governmental entity (American Association of Clinical Endocrinologists, American Thyroid Association, National Institutes of Health, etc.) that provides information guided by “evidence-based medicine”.
You can read more about our guidelines and the rationale behind them here:
in reply to: TT and eye disease symptoms #1184577Hello – I’m aware of one study out of University of Michigan Kellogg Eye Center that indicated that thyroidectomy could potentially reduce the risk of thyroid eye disease:
(Note on links: if you click directly on the following link, 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).
http://kellogg.umich.edu/news/14/thyroid-eye-disease.html
I’ve also heard a couple of anecdotal stories from patients who saw an improvement in thyroid eye disease symptoms after surgery.
I’ve not seen *any* research that indicates thyroid eye disease gets worse after thyroidectomy.
Of course, as Dr. David Granet from UC Shiley Eye Institute noted at a seminar earlier this year, “when you’ve seen one case of Graves’ disease, you’ve seen one case of Graves’ disease. In other words, your mileage may vary!
in reply to: I hate Graves Disease #1184572Sandy40 wrote:Thank you for your advise, I have asked multiple times, gone to several doctors and due to my age 40 they don’t want to investigate my slurring and stuttering, I am often told it is the weakness from the facial muscles as a result of leakage of minerals from my muscles into my blood stream.Obviously, I’m a fellow patient, not a doctor, but if it was me, I’d seek a third, fourth, or fifth opinion. There are many different medical conditions (not to mention medication interactions) that can cause slurring, and all of them should be ruled out.
The vast majority of our members here have been very happy with surgery as a treatment option – but you don’t want to assume that surgery will give you relief from an issue that could be coming from other causes!
in reply to: I hate Graves Disease #1184570Sandy40 wrote:I am now considering extreme radical measures to deal with these hormones but I will give conventional medicine a chance to make me better first.Liz1967 is correct that this is *not* an issue that can be fixed by diet or supplements (or any other so-called “alternative” therapy). Some assume that alternative cures are risk-free, but this is not the case. The biggest issue with these alternative approaches is that they probably won’t control your levels. And if you go extremely hyper or hypo because your treatment isn’t working, both come with significant risks.
Again, I would encourage you to find a doctor to help you get to the bottom of the slurred speech – to determine whether that is due to out of balance thyroid levels or some other underlying cause.
in reply to: I hate Graves Disease #1184563Hello and welcome – we have a number of regular posters here who have chosen surgery as their treatment option. Hopefully, they will chime in, but you can also use the “search posts” feature when you are logged in to search for keywords such as thyroidectomy, “thyroid surgery”, etc..
You noted that you are not responding to medication, but hopefully, your endocrinologist is looking at Free T4 and T3 as well as TSH in making this determination. TSH can remain suppressed in Graves’ patients and is not a good benchmark to be used alone in monitoring the course of the disease.
Also, your primary care doc should be looking into other potential causes for the slurred speech. I’ve heard of this more commonly with hypo than hyper – but there are many other causes as well, all of which should be checked out.
Here are a few resources that will hopefully be of interest as you make your decision:
(Note on links: if you click directly on the following link, 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).
American Association of Endocrine Surgeons:
http://endocrinediseases.org/thyroid/surgery.shtmlGDATF Bulletin:
http://gdatf.org/about/about-graves-disease/patient-education/thyroidectomy-for-graves-surgical-option/GDATF Conference video:
in reply to: On Week 12 and very discouraged #1184496Hopefully, your doctor is looking at Free T4 and T3 in making dosing decisions. TSH can remain suppressed for a while with Graves’ patients, so if that is the only test done, it’s fairly common for patients to eventually go extremely hypo. If your doc isn’t looking at T3/T4, definitely ask for these tests to be run.
Hopefully, you will start feeling better soon.
in reply to: 3 year old with graves #1177617Liz1967 wrote:Just one study. Methimazole is not a totally innocuous drug. Agranulocytosis is a bone marrow problem that is a known side effect of antithyroid drugs.It’s important to note that this was not a study – it was a case report of a single individual and a review of existing literature. Wendyh’s doctor referred to “problems with bone marrow which is non curative”. In the case reported in this article, the individual recovered after discontinuing the meds.
I agree 100% that methimazole is not a “totally innocuous drug” – every single patient that takes this med should be aware of the risk of agranulocytosis and liver issues, as well as less serious side effects. However, patients should also be made aware that these issues occur more frequently early in treatment and also generally at higher doses.
ALL three treatment options have risks. As patients (or parents of a small child), the best that we can do is fully understand all of the risks, to make sure that our questions have been fully answered by our medical provider, seek a second (or third or fourth) opinion if necessary, and then to make the best decision that we can.
in reply to: 3 year old with graves #1177613Hello – I have never heard of a bone marrow issue with anti-thyroid meds. You might ask to see if there is a specific study that the doctor has seen that I have not. Certainly, though, it’s worth meeting the additional specialists to learn about the pros and cons of RAI and surgery vs. continuing to stay on the medication.
I would NOT try any sort of herbal therapy without letting your daughter’s doctor know exactly which supplements she is taking, as there are some that can actually make hyperthyroidism worse. And I would *definitely* not recommend discontinuing the meds and pursing any sort of alternative type of therapy.
Wishing you and your family all the best!
in reply to: 3 year old with graves #1177612Hello – I have never heard of a bone marrow issue with anti-thyroid meds. You might ask to see if there is a specific study that the doctor has seen that I have not. Certainly, though, it’s worth meeting the additional specialists to learn about the pros and cons of RAI and surgery vs. continuing to stay on the medication.
I would NOT try any sort of herbal therapy without letting your daughter’s doctor know exactly which supplements she is taking, as there are some that can actually make hyperthyroidism worse. And I would *definitely* not recommend discontinuing the meds and pursing any sort of alternative type of therapy.
Wishing you and your family all the best!
in reply to: GD with TED #1184522mojon wrote:Any info on GD people/groups in Missouri?Hello – The GDATF is *very* small, so we only have a handful of in-person support groups, and we unfortunately don’t have coverage in Missouri. This forum is a great resource, and we are also active on Facebook (if you do a search on Facebook for GDATF, that will pull up our page).
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