Resources for Graves disease & treatment
February 4, 2020 12:38 AM   Subscribe

YANAD, YANMD, but IANAD either and am struggling to have my concerns heard following a diagnosis of mild-to-moderate Graves’ disease. Without going down any quack-y rabbit holes I’d like to be able to better understand potential treatment options & outcomes in order to advocate for myself. Details below the fold. Thanks in advance.

FWIW I have done a search for Graves/hyperthyroid on the Green and found only one directly relevant Ask from about 15 years ago (lots of interesting info on kitty thyroids, though, heh). I also want to say upfront that I believe wholly in medical science and am not generally mistrustful of mainstream Western-style medicine or of doctors in general, and have always been a very conscientious patient. I have no problem taking pills, getting shots, or following treatment instructions.

However, I (30, cis woman) am really struggling to get physicians to hear my concerns about the disorder and the recommended treatment regimen, and my gut is telling me I need to wait and find out more. The few people I’ve told mostly just keep asking variations on, “so, are you gonna get fatter? Because that would be sad”, so useful advice won’t be forthcoming on that front (also, wow I need new friends). (Possibly relevant: I’m in W Europe, so I have the incredible good fortune to be able to afford treatment but also medical professionals tend to have a more paternalistic attitude than, for example, in the US.)

Since summer I've had frequent, pretty strong heart palpitations while my resting heart rate went from ~60 to~90 in one month and has stayed there. Bloodwork points pretty definitively to Graves/Basedow. I feel unreasonably hot much of the time as well and cannot bend over to pick things up unless I'm taking beta blockers.

I have seen three specialists: our neighborhood internist and two fancy-pants endocrinologists. All three recommend an 18-month course of 20 mg daily carbimazole. All three admit of the possibility that this treatment, while certainly less extreme than ablation, may permanently break my thyroid, though statistical likelihood of course seems to vary in the literature I’ve found. None seem to understand my concern about this eventuality (my mother’s hypothyroid utterly shattered her health and subsequently her career, neither of which she has never truly regained). They do not wish to discuss it in detail and when I press—politely, while emphasizing that I’m asking for clarity rather than challenging their judgement—they cut off the conversation. They also seem unclear on chances of remission without treatment or the viability of waiting and seeing before my jumping on what seems to me to be a pretty heavy-duty medication.

[Me: What if we wait and see? Can I just stick with beta blockers for a while?]

Internist (male): “I don’t understand your question. This is a very common disease and a very common treatment. Start the medication and come back in two months.”

Fancy Endo 1 (male): “This is a very widely used drug. You’ll be monitored weekly. If you go into hypo you’ll just need synthroid, it’s fine. I’m afraid I cannot just let you walk out of here with untreated hyperthyroid.”

Fancy Endo 2 (female): “Lots of women have thyroid disorders and live healthy lives. You may indeed drop below or lose normal thyroid function. If this happens you’ll just need to weigh yourself every week and not exceed 1000 calories a day going forward.” (Nothing about, y’know, fatigue, or hair loss, or feeling constantly cold, or…)

Basically, if such a thing is possible (and I realize it may not be), I would far rather live 5, 10, 15 years using lifestyle and beta blockers to tolerate the symptoms of moderate hyperthyroid—palpitations, heat intolerance, etc.—than risk living the remaining years of my life with the considerably heavier burden of hypothyroid (the exhaustion in particular scares me) + decades of daily medication. Even if that eventually must happen, I’d prefer to delay it as long as possible.

Furthermore, I strongly suspect I may already have experienced hyperthyroid about ten years ago and gone into remission. At the time I couldn’t afford the bloodwork (yay America!) to confirm whether that was what was happening, so my doctor let me go, saying to monitor the palpitations and sweating closely and return if they got worse. They resolved about 12 months later and didn’t really return until this summer. I have since moved several thousands of miles away from that practitioner so sadly no chance of going back to her.

Can anyone point me to reliable, peer-reviewed information on long-terms effects of carbimazole treatment, remission of hyperthyroid, or outcomes for Graves more generally? Even pointers on evaluating and interpreting findings (Jesus Christ I really need to brush up on my stats skills) would be awesome. I’m not necessarily looking for personal experiences as they tend to be so extremely individual, but those are of course appreciated too.

Thank you in advance and sorry for the book!
posted by anonymous to Health & Fitness (12 answers total) 6 users marked this as a favorite
Cochrane reviews are generally held in high regard - typically, they take all the available randomised control trials and analyse the findings, having made allowances for quality, study design etc. Here's the abstract for the Cochrane review that covers treatments for Graves' hyperthyroidism: The whole thing is here:

It maybe won't address all of your concern or answer your specific questions (in particular, it says: "None of the studies detailed incidence of hypothyroidism"). But I would expect any decent specialist to be aware of the Cochrane reviews in their area, and to be prepared to talk about them with their patients. It may give you some material that you can use to challenge or push back - or, it may help you to feel more comfortable that you've already been given evidence-based recommendations. At the very least, you'll be up to date on research (although this review is 10 years old now - often they're updated more frequently than that).

Disclosure: my partner writes Cochrane reviews, although not in this subject area.
posted by rd45 at 2:03 AM on February 4, 2020 [3 favorites]

The suggestion to consult Cochrane Reviews is excellent. You can also find a whole lot of other papers (including other types of review articles) by searching on PubMed (sometimes called Medline). PubMed doesn't provide full-text articles, only abstracts. And, frankly, it's not the most user-friendly system. But if you find references that seem interesting, you can usually get the full text from your local medical school library. I've found that reference librarians are very helpful in medical school libraries, and you can get help even if you have no affiliation with the school.
posted by alex1965 at 6:39 AM on February 4, 2020

Oh, I forgot to add that you can also find many full-text articles on Sci-Hub.
posted by alex1965 at 6:46 AM on February 4, 2020

I have Grave's, after a lifetime of hypothyroidsm and an extensive family history of hypothyroidsm going back four generations. Graves likely existed for a few years before I was diagnosed, and possibly started during an extremely stressful period of my life. It was only diagnosed after the changes like blood pressure led to a brain bleed and months of very scary healing.

Because it's a lady disease, of course, most off-the-shelf doctors will do little in the way of treatment options beyond the "standard," which was a nightmare for me, and could have led to a lifetime of more problems.

I went through many (mostly male) unhelpful doctors who did not want to hear anything beyond the "standard" treatment that caused me to gain 30 pounds in three months and had me flirting with diabetes. They did not want to hear how bad I felt or that the meds I was on were making me fat and depressed. When you see these doctors, drop them like a hot rock. They aren't the doctors you're looking for.

I now have a private endo who doesn't take insurance and functions more as a GP. We did major bloodwork and laid out a whole plan of lifestyle changes including exercise, stress reduction, and routine monitoring. I'm not on meds for Graves, but am monitored regularly, and I'm back to being hypothyroid at a subclinical level. If the Grave's comes back or the hypothyroid bumps, we'll respond in a measured way. If I end up on hypothyroid drugs, I will start with natural thyroid replacement (I think it's from pigs), which my friends on thyroid meds say has fewer side effects and doesn't cause them to blow up like a balloon.

Maybe the science will catch up with this. But medicine has a dismal track record of ignoring women's pain and illness, so I wouldn't hold my breath. Feel free to memail me if you have questions.
posted by answergrape at 7:04 AM on February 4, 2020 [1 favorite]

Since you're open to personal experience (although I see you're not particularly looking for it) - my mom has Graves' disease and had her thyroid rendered totally non-functional (I'm not sure how, as I was a kid at the time). She takes levothyroxine daily and has for over 20yrs at this point. She has plenty of energy, no hair loss, has maintained her weight, etc. She does need to have the amount of levothyroxine she takes adjusted regularly, but it really doesn't have an impact on her daily quality of life.

I don't know whether your mother's experience or my mother's experience is more typical, but I'd definitely look into the data about what it's like to have little to no thyroid function with appropriate medication before deciding how to proceed.
posted by insectosaurus at 7:13 AM on February 4, 2020

Since you are open to individual experiences—I was diagnosed with Graves almost 30 years ago. My situation sounds very similar to insectosaurus’ mom—I had radioactive treatment to knock out my thyroid (took one pill as an outpatient and then had several painless scans to monitor progress) and have taken levothyroxine ever since and will be on it for the rest of my life.

In my experience (and yes, everyone is different) the resulting hypothyroid is much easier to deal with than Graves—meaning I rarely think about it and basically have a very normal life. I have bloodwork once a year to see if med levels need to be adjusted, and I’m somewhat more sensitive to cold, but that’s it. (Again, I know this isn’t the case for everyone) It was MUCH more stressful and difficult to figure out and manage the meds for Graves, which is why I decided to go with the radioactive treatment.

I’m so sorry your healthcare providers are being dismissive of your concerns. You deserve to have your questions taken seriously and answered respectfully.
posted by bookmammal at 7:39 AM on February 4, 2020 [1 favorite]

I was diagnosed with Graves in late 2018. After 6 months of beta blockers (no other treatment), my symptoms eased significantly and my blood work returned to normal levels. I went off the beta blockers to no ill effect. My endocrinologist essentially handed me back to my GP and told me to check my TSH every year and pay attention if symptoms returned. So, anecdotally, Graves can seem to resolve itself if left alone.

I wish I had any sort of scientific research to read about this too, because the entire thing was confusing and alarming, not least because my primary symptoms were severe anxiety, panic attacks, and heart palpitations. My endocrinologist said that Graves can appear during extreme stress (for me, finishing my master's degree) and go away when that stress is resolved.
posted by little king trashmouth at 8:36 AM on February 4, 2020

My personal experience with Graves:

Followed doctors' orders, took the meds, which over time failed to control my thyroid adequately. Eyes bugged out due to swelling at the back of the eye sockets, causing vision problems that have never been resolved (my glasses have immense amounts of prism now and are very expensive). Eventually, I followed medical advice to have my thyroid removed. All the doctors said I'd be fine afterwards.

I was not fine.

Following the surgery, I had increasing problems with fatigue, brainfog, inability to learn new things... Doctor after doctor told me that my bloodwork was normal, would literally shrug when I asked them what to do next. Ended up, finally, on full disability. Was it the Graves? Was it the surgery? I don't know. I eventually got tired of looking for a diagnosis that it seemed I'd never find; nowadays, I take my levothyroxine and live the best life I can despite my limitations and don't look back at the past.

But yeah. You are right to be concerned.


My mother also had Graves. Rejected medication. Rejected thyroidectomy. Was sure she could control her thyroid with soy and other natural stuff. One effect of Graves disease is that it can make you "emotionally volatile", which is a nice way of saying (in my mother's case, anyway) shrieking fits of rage for no apparent reason and without warning. Another effect of Graves disease is that it can cause heart problems, which is what I believe did her in, in the end. The last time I spoke with her, years prior to her death, she was - how can I put this nicely? - a complete raving lunatic.

Was it the Graves? I don't know. My mother was never quite right in the head to begin with. She ended up being banned from the doctors who'd once treated her, for I'm sure was good reason, for "advocating for herself", in her terms, and probably screaming in their faces (from my own experience). Her idea of self-treatment was drinking soy milk and measuring her own perception of how she felt afterwards, without anything resembling lab work to back it up, which is very different from the approach you're considering.


My advice to you? Don't be me, and trust too much; don't be my mother, and trust too little. Do your own research, shop around for a doctor who listens and pays attention to what you say BEFORE taking any irreversible action - but keep a close watch on those heart issues, and if you start looking bug-eyed or noticing vision problems, or find yourself freaking the f* out at people, get on that immediately. Hypothyroidism can cause a lot of problems, but hypERthyroidism - as is caused by Graves - that can kill you.

I'm sorry I have no more definite answers for you, but I wish you the very best of luck in dealing with this.
posted by WaywardPlane at 8:37 AM on February 4, 2020 [1 favorite]

If I were you I'd want to be evaluated for Hashimoto's thyroiditis :
Hashimoto's thyroiditis affects about 5% of the population at some point in their life.[4] It typically begins between the ages of 30 and 50 and is much more common in women than men.[1][3] Rates of the disease appear to be increasing.[5] It was first described by the Japanese physician Hakaru Hashimoto in 1912.[9] In 1957 it was recognized as an autoimmune disorder.[10]
Overt, symptomatic thyroid dysfunction is the most common complication, with about 5% of persons with subclinical hypothyroidism and chronic autoimmune thyroiditis progressing to thyroid failure every year. Transient periods of thyrotoxicosis (over-activity of the thyroid) sometimes occur, and rarely the illness may progress to full hyperthyroid Graves' disease ....[my emphasis]
Especially since you think you might have had an episode before and your mother had thyroid problems.
posted by jamjam at 9:44 AM on February 4, 2020

Beta blockers are treating a symptom, not the actual problem. They slow your heart but you can still have things like the opthalmopathy (bulging eyes), which can become permanent even if your thyroid settles down. Another effect of Graves is increased anxiety, even if you don't normally have anxiety . Two major concerns about untreated Graves are 1) risk of arrhythmias and 2) thyroid storm.

From UpToDate, a resource widely used by physicians in the US to make decisions about care:
Although thyroid storm can develop in patients with longstanding untreated hyperthyroidism (Graves' disease, toxic multinodular goiter, solitary toxic adenoma), it is often precipitated by an acute event such as thyroid or nonthyroidal surgery, trauma, infection, an acute iodine load, or parturition.

About antithyroid drugs, also from UpToDate:
Minor side effects — Up to 15 percent of people who take an antithyroid drug have minor side effects. Both methimazole and propylthiouracil can cause itching, rash, hives, joint pain and swelling, fever, changes in taste, nausea, and vomiting.
Major side effects — Fortunately, the major side effects of antithyroid drugs are very rare.
Agranulocytosis – Agranulocytosis is a term used to describe a severe decrease in the production of white blood cells. This condition is extremely serious but affects only 1 out of every 200 to 500 people who take an antithyroid drug. Older people taking propylthiouracil and those who take high doses of methimazole may be at higher risk of this side effect.

Hepatotoxicity is another major concern with these drugs and methimazole can cause birth defects. I haven't seen anything about these permanently changing thyroid function. The thing that would permanently change the function would be ablation with radioactive iodine, which destroys the thyroid cells. If your physician hasn't clearly explained the difference between these things I would keep asking questions.
posted by arachnidette at 3:07 PM on February 4, 2020

I had a reaction to propylthiouracil, and was told AFTER the reaction that asthmatics should not take it. They knew I was on asthma meds when it was prescribed. I would be sure to clarify any other conditions you're receiving treatment for if a doctor prescribes something new for you.
posted by answergrape at 9:45 AM on February 5, 2020

51 YO male, diagnosed 25 years ago, had the radioactive iodine treatment, been hypothyroid since, take Synthroid daily, in perfect health, it's the most inconsequential thing ever. I hope your outcome is as successful as mine has been.
posted by Keith Talent at 1:26 PM on February 5, 2020 [1 favorite]

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