Guides to Hashimoto’s + hypothyroidism?
June 22, 2021 9:16 PM Subscribe
My boyfriend has developed Hashimoto’s, alongside hypothyroidism - looking for non-woo resources (online or a book is ok) and reasonably well supported treatment guidelines.
It seems like the only real standard treatment is synthroid. His dose has just been increased, I gather it will take a good while until he feels some improvements.
Oh, Canadian resources would be most helpful. It seems like in the US and some other places, T3 supplements or natural sources of T4 are used, and sometimes low dose naltrexone (why, for what??), but it seems really implausible that a Canadian doc would go with those ideas.
Asking because there is no end of stuff online, and I don’t have the bandwidth to cut through it. (Bf doesn’t either.) In communities people talk about diets (carnivore, gluten-free, paleo…), and naturopaths and supplements (vitamin D?)… It seems like many are not getting the relief they would like from the standard treatment, basically, like the autoimmune component (inflammation?) isn’t being addressed and it affects their quality of life - is there anything really for Hashimoto’s that isn’t simply treating hypothyroidism?
TIA
Ah also - resources particular to people with mood disorders (and treated with lithium and other mood stabilizers) would be really great. But even a straightforward ELI5 no bullshit guide would be so welcome.
It seems like the only real standard treatment is synthroid. His dose has just been increased, I gather it will take a good while until he feels some improvements.
Oh, Canadian resources would be most helpful. It seems like in the US and some other places, T3 supplements or natural sources of T4 are used, and sometimes low dose naltrexone (why, for what??), but it seems really implausible that a Canadian doc would go with those ideas.
Asking because there is no end of stuff online, and I don’t have the bandwidth to cut through it. (Bf doesn’t either.) In communities people talk about diets (carnivore, gluten-free, paleo…), and naturopaths and supplements (vitamin D?)… It seems like many are not getting the relief they would like from the standard treatment, basically, like the autoimmune component (inflammation?) isn’t being addressed and it affects their quality of life - is there anything really for Hashimoto’s that isn’t simply treating hypothyroidism?
TIA
Ah also - resources particular to people with mood disorders (and treated with lithium and other mood stabilizers) would be really great. But even a straightforward ELI5 no bullshit guide would be so welcome.
Response by poster: Just some info, the hypothyroidism pre-existed the Hashimoto’s. TSH went haywire recently for some reason, *then* Hashimoto’s was discovered (who knows how long it was at play). So there has been synthroid treatment for many years, and it seems it’s worse. I figured the hashimoto’s would be why. Either way yes his doctor is adjusting his medication, he just feels worse than he ever has (with some symptoms that seem odd for hypothyroidism) and is convinced he’s dying. Hence me digging and seeing just waaaay too much to process. So the autoimmune piece itself doesn’t cause problems?
posted by cotton dress sock at 10:12 PM on June 22, 2021
posted by cotton dress sock at 10:12 PM on June 22, 2021
It is common to use T4 (Synthroid brand or generics, and sometimes T3 as well (Cytomel brand or generics). If the patient also has pre-diabetes/metabolic syndrome/insulin resistance it is common to also prescribe Metformin (generic is called glucophage) and a lower carb diet (with the carbs spread out over the meals and snacks) to control blood sugar.
The reason vitamin D is also often prescribed is that hypothyroidism causes fatigue. The doctor will test for and address other causes of fatigue, like Vitamin D deficiency, anemia, etc. Some huge percentage of people in the US and Canada have a vitamin D deficiency, so most people who are tested for it are going to have it and be prescribed Vitamin D.
A main reason some people are not getting the relief they need from fatigue, weight gain, brain fog, etc., is that some endocrinologists are using the dosing standards from 25 years ago, which called for far less T-4 replacement. The newer standards call for much more thyroid hormone replacement. Also, patients sometimes have other conditions which are not being adequately treated, like Vitamin D deficiency and anemia.
A key thing to know about Hashimoto's is that it is an autoimmune disease, and a person with one autoimmune disease is likely to develop others. They just name the autoimmune diseases by which part of your body your own immune system is attacking. (Google "autoimmune diseases" for the surprisingly large list.) Also, watch out for weight gain, because as my endocrinologist says: "Fat is metabolically active", by which he means that body fat puts out hormones that worsen the patient's medical condition.
Until your post, I never heard of Naltrexone being prescribed for Hashimoto's. Naltrexone is for opioid withdrawal. It doesn't make sense to me that Naltrexone would be used for Hashimoto's. I have not researched it though.
posted by KayQuestions at 10:33 PM on June 22, 2021 [6 favorites]
The reason vitamin D is also often prescribed is that hypothyroidism causes fatigue. The doctor will test for and address other causes of fatigue, like Vitamin D deficiency, anemia, etc. Some huge percentage of people in the US and Canada have a vitamin D deficiency, so most people who are tested for it are going to have it and be prescribed Vitamin D.
A main reason some people are not getting the relief they need from fatigue, weight gain, brain fog, etc., is that some endocrinologists are using the dosing standards from 25 years ago, which called for far less T-4 replacement. The newer standards call for much more thyroid hormone replacement. Also, patients sometimes have other conditions which are not being adequately treated, like Vitamin D deficiency and anemia.
A key thing to know about Hashimoto's is that it is an autoimmune disease, and a person with one autoimmune disease is likely to develop others. They just name the autoimmune diseases by which part of your body your own immune system is attacking. (Google "autoimmune diseases" for the surprisingly large list.) Also, watch out for weight gain, because as my endocrinologist says: "Fat is metabolically active", by which he means that body fat puts out hormones that worsen the patient's medical condition.
Until your post, I never heard of Naltrexone being prescribed for Hashimoto's. Naltrexone is for opioid withdrawal. It doesn't make sense to me that Naltrexone would be used for Hashimoto's. I have not researched it though.
posted by KayQuestions at 10:33 PM on June 22, 2021 [6 favorites]
I also have Hashimoto’s and the standard treatment is Synthroid. Here are some thoughts:
- Hashimoto’s can and often does present with other autoimmune diseases. I also have RA. That doesn’t mean it always does or that someone who gets diagnosed with it needs to get tested necessarily, but it’s common.
- Hashimoto’s on its own is annoying enough because your thyroid function can fluctuate, but you cannot increase Synthroid dosage too much or often. It can take time to get the dosage right.
- LDN Naltrexone is I think more commonly used for other AI conditions, but I’m not a medical expert. I’ve got some AI disorders. :)
- Vitamin D is a great supplement for people who are tired. I would not bother with OTC supplements unless a doctor recommends. My rheumatologist also recommended folic acid, but I think that’s more for RA.
posted by ancient star at 10:43 PM on June 22, 2021 [2 favorites]
- Hashimoto’s can and often does present with other autoimmune diseases. I also have RA. That doesn’t mean it always does or that someone who gets diagnosed with it needs to get tested necessarily, but it’s common.
- Hashimoto’s on its own is annoying enough because your thyroid function can fluctuate, but you cannot increase Synthroid dosage too much or often. It can take time to get the dosage right.
- LDN Naltrexone is I think more commonly used for other AI conditions, but I’m not a medical expert. I’ve got some AI disorders. :)
- Vitamin D is a great supplement for people who are tired. I would not bother with OTC supplements unless a doctor recommends. My rheumatologist also recommended folic acid, but I think that’s more for RA.
posted by ancient star at 10:43 PM on June 22, 2021 [2 favorites]
"So the autoimmune piece itself doesn’t cause problems?"
To answer your second post, yes, the autoimmune piece itself itself does cause problems. Be vigilant about looking for other autoimmune diseases that might be causing his symptoms. Also, some people's bodies are resistant to T-4, which I think is why T-3 is also sometimes prescribed.
posted by KayQuestions at 10:45 PM on June 22, 2021 [2 favorites]
To answer your second post, yes, the autoimmune piece itself itself does cause problems. Be vigilant about looking for other autoimmune diseases that might be causing his symptoms. Also, some people's bodies are resistant to T-4, which I think is why T-3 is also sometimes prescribed.
posted by KayQuestions at 10:45 PM on June 22, 2021 [2 favorites]
Not a doctor, but yes, for the people I know with Hashimoto's, there was no (standard U.S.) treatment to address the autoimmunity directly, mostly monitoring the thyroid situation + some other checks.
(Since you mention lithium, my understanding from bipolar geeks is that it's pretty solidly known to increase risk of hypothyroidism, so that could perhaps have been ongoing, with Hashimoto's then starting on top of that making things words. Lithium may have various other thyroid-related effects where I think the tl,dr is: maybe take standard endocrinology (test reference levels etc.) with an extra grain of salt and focus on his symptoms one extra notch.)
posted by away for regrooving at 10:52 PM on June 22, 2021 [1 favorite]
(Since you mention lithium, my understanding from bipolar geeks is that it's pretty solidly known to increase risk of hypothyroidism, so that could perhaps have been ongoing, with Hashimoto's then starting on top of that making things words. Lithium may have various other thyroid-related effects where I think the tl,dr is: maybe take standard endocrinology (test reference levels etc.) with an extra grain of salt and focus on his symptoms one extra notch.)
posted by away for regrooving at 10:52 PM on June 22, 2021 [1 favorite]
I'm in the US and am diagnosed with Hashimoto's Thyroiditis. They really are not separate things. Hashimoto's simply means that the low thyroid is caused by autoimmunity, rather than by low iodine.
In the US, it's uncommon for most doctors to test for antibodies. Normally, they just test for TSH levels, and diagnose hypothyroid but not the cause. Probably, your boyfriend's hypothyroid has always been caused by Hashimoto's but his antibody levels weren't checked until recently.
In the US, people who have very high TSH levels (usually the cutoff for labs are WAY above what they should be, even according to the American Endocrinological Society!) are normally placed on synthroid, and then ignored if their symptoms don't improve. I had this experience, and it's very demeaning to deal with the attitude that I or others have "convinced themselves synthroid doesn't work". It didn't work for me. It didn't even work to improve my TSH levels.
Some people have trouble converting T4 to T3, so synthroid isn't going to work for them, and they need either to supplement with Cytomel/T3 as mentioned above, or take natural thyroid hormones such as Naturethroid, NP Thyroid, or Armour. There is a myth running around that Armour doesn't have a controlled amount of T4 and T3. That hasn't been true for decades but the myth persists. Some people really do feel better taking Armour or the like.
As for me, I have NEVER felt better no matter what. I am always fatigued despite now having "normal" levels of everything. I tried synthroid, I tried natural hormones, I take vitamin D, I tried avoiding wheat (because one doctor thought that would help mitigate further damage to my thyroid). No, I've just felt worse and worse over the years. I am tired of fighting the medical system, and, like you, don't have the bandwidth to continue trying to figure my own situation out.
Best of luck to your boyfriend in getting good treatment.
posted by Flock of Cynthiabirds at 11:24 PM on June 22, 2021 [10 favorites]
In the US, it's uncommon for most doctors to test for antibodies. Normally, they just test for TSH levels, and diagnose hypothyroid but not the cause. Probably, your boyfriend's hypothyroid has always been caused by Hashimoto's but his antibody levels weren't checked until recently.
In the US, people who have very high TSH levels (usually the cutoff for labs are WAY above what they should be, even according to the American Endocrinological Society!) are normally placed on synthroid, and then ignored if their symptoms don't improve. I had this experience, and it's very demeaning to deal with the attitude that I or others have "convinced themselves synthroid doesn't work". It didn't work for me. It didn't even work to improve my TSH levels.
Some people have trouble converting T4 to T3, so synthroid isn't going to work for them, and they need either to supplement with Cytomel/T3 as mentioned above, or take natural thyroid hormones such as Naturethroid, NP Thyroid, or Armour. There is a myth running around that Armour doesn't have a controlled amount of T4 and T3. That hasn't been true for decades but the myth persists. Some people really do feel better taking Armour or the like.
As for me, I have NEVER felt better no matter what. I am always fatigued despite now having "normal" levels of everything. I tried synthroid, I tried natural hormones, I take vitamin D, I tried avoiding wheat (because one doctor thought that would help mitigate further damage to my thyroid). No, I've just felt worse and worse over the years. I am tired of fighting the medical system, and, like you, don't have the bandwidth to continue trying to figure my own situation out.
Best of luck to your boyfriend in getting good treatment.
posted by Flock of Cynthiabirds at 11:24 PM on June 22, 2021 [10 favorites]
Response by poster: Flock of Cynthiabirds, I’m sorry it’s been difficult. Thank you (and all!) for taking the time to reply.
He’s very discouraged already from previous experiences with psychiatric drugs (I do think the lithium, + family history set the stage for this). He wants to feel better *today* and I am having to explain to someone who feels absolutely exhausted, uncomfortable-to-in-pain, and depressed that this is, possibly, another long-haul thing - for sure, it will take weeks to months to get relief. He said he wants to throw out his meds and will refuse doctor’s appointments. Meanwhile I am taking care of my dad part-time and have to leave my boyfriend alone sometimes (sometimes overnight), and he basically can’t function at the moment (feels like Sophie’s Choice :/). So what can I tell him that’s going to be encouraging and will keep him going day by day until he starts to feel better (hopefully!!!)? I tell him it’s solvable, there’s a light at the end of the tunnel… meanwhile he has no appetite at all and finds every hour until nightfall unbearable… he just wants to feel/be normal and I get that…
posted by cotton dress sock at 12:32 AM on June 23, 2021 [1 favorite]
He’s very discouraged already from previous experiences with psychiatric drugs (I do think the lithium, + family history set the stage for this). He wants to feel better *today* and I am having to explain to someone who feels absolutely exhausted, uncomfortable-to-in-pain, and depressed that this is, possibly, another long-haul thing - for sure, it will take weeks to months to get relief. He said he wants to throw out his meds and will refuse doctor’s appointments. Meanwhile I am taking care of my dad part-time and have to leave my boyfriend alone sometimes (sometimes overnight), and he basically can’t function at the moment (feels like Sophie’s Choice :/). So what can I tell him that’s going to be encouraging and will keep him going day by day until he starts to feel better (hopefully!!!)? I tell him it’s solvable, there’s a light at the end of the tunnel… meanwhile he has no appetite at all and finds every hour until nightfall unbearable… he just wants to feel/be normal and I get that…
posted by cotton dress sock at 12:32 AM on June 23, 2021 [1 favorite]
I've also had Hashimoto's for decades and my doctors have all prescribed Armour because it contains both T3 and T4. Vitamin D and magnesium can both help with fatigue - I take both but it's important to not take magnesium with calcium within an hour of taking any thyroid meds - or in fact to eat anything within an hour. If he's doing that he will be significantly lessening the absorption of the thyroid hormone. There are a significant number of people with hypothyroid who become unable to digest gluten. It's not universal but if he's having any gut issues might be worth a try. And I have yet to find a non-bs guide to thyroid stuff online either - there is a ton of woo out there.
posted by leslies at 5:33 AM on June 23, 2021 [5 favorites]
posted by leslies at 5:33 AM on June 23, 2021 [5 favorites]
I've got an autoimmune disease and had incipient Hashimoto's (that seems to have mostly resolved upon getting the autoimmune condition under control) and I did a metric ton of research on the diet side. I did an elimination diet - the Whole 30 and discovered in the month + couple weeks of challenging that I react very very badly to gluten, and cutting that out long-term has been 100% necessary. (This is a one-month elimination diet, not a "diet" in the "eat like this to lose weight" sense - it's not intended to be permanent, it's intended to be diagnostic.) I have since found that for my particular body, eating very low carb is the best thing for managing my inflammation. YMMV.
And that, of course, is the problem - the diet stuff is vast and confusing because people's bodies all differ and there isn't a "correct" diet for any condition or every person. I can't blame anyone who looks at all that and decides to try vitamin supplements or whatever first.
posted by restless_nomad at 6:27 AM on June 23, 2021 [3 favorites]
And that, of course, is the problem - the diet stuff is vast and confusing because people's bodies all differ and there isn't a "correct" diet for any condition or every person. I can't blame anyone who looks at all that and decides to try vitamin supplements or whatever first.
posted by restless_nomad at 6:27 AM on June 23, 2021 [3 favorites]
I want to chime in and say that everyone has very different experiences with Hashimotos but mine has been fairly stress-free. I felt bad, got prescribed Levothyroxine, and felt better. Get blood work done every year and sometimes dose adjusted. I'm definitely not saying this to discount anyone else's experience, just to say he's not *necessarily* in for a long and extremely stressful process here.
posted by LeeLanded at 7:12 AM on June 23, 2021 [4 favorites]
posted by LeeLanded at 7:12 AM on June 23, 2021 [4 favorites]
Depression can itself be a direct effect of inadequately treated Hashimoto's hypothyroidism. I'm in agreement with a poster above who feels that he always had Hashimoto's but the appropriate testing wasn't previously done, and thus potentially effective treatments not started. Hashimoto's can be quite serious if not adequately treated and occasionally leads to "thyroid storm", a severely life-threatening condition, so not seeing doctors or throwing out his meds is very dangerous. It's rare because Hashimoto's hypothyroidism is typically well treated, but it is a real possibility if poorly or inadequately treated. Don't mess around with internet-suggested do-it-yourself remedies. This is serious stuff.
If he is not doing so, he needs to see an endocrinologist rather than a general medicine physician. He needs to have the appropriate tests, perhaps ultrasounds of his thyroid, maybe a fine needle aspiration of his thyroid to determine what exactly is happening in his thyroid. I did all this when I was diagnosed a decade ago. Synthroid is fortunately all that was needed for me, but mine was a simple, uncomplicated case and turned out not to be caused by Hashimoto's. Roughly 10% of women develop hypothyroidism in their lives, and only a small percentage have the autoimmune version. But everyone who develops hypothyroidism needs at least a panel of bloodtests, including Anti-thyroid antibodies, free T4 and T3, Total or free, to rule out Hashimoto's before decisions are made on therapy.
Unfortunately, at least in the USA it is very difficult to secure first new-patient visits with endocrinologists. I would not wait to find a qualified endocrinologist, preferably affiliated with a teaching hospital, where the newest and most thorough evaluation can be done. If you explain the situation they will try to get you in earlier, so I'd call several and be willing to travel if necessary.
Good luck, and thank you so much for reaching out for advice. Autoimmune disorders are confusing. I, a liver nurse, have always thought endocrinologists and rheumatologists, who specialize in autoimmune diseases, were the brainiacs of medicine. Long and complicated residencies and fellowships, long involved visits with patients who typically feel awful and are very afraid, and no procedures to bring in money. No wonder there are so few of them around, but those who choose that field are passionate and dedicated to their patients.
posted by citygirl at 7:26 AM on June 23, 2021 [6 favorites]
If he is not doing so, he needs to see an endocrinologist rather than a general medicine physician. He needs to have the appropriate tests, perhaps ultrasounds of his thyroid, maybe a fine needle aspiration of his thyroid to determine what exactly is happening in his thyroid. I did all this when I was diagnosed a decade ago. Synthroid is fortunately all that was needed for me, but mine was a simple, uncomplicated case and turned out not to be caused by Hashimoto's. Roughly 10% of women develop hypothyroidism in their lives, and only a small percentage have the autoimmune version. But everyone who develops hypothyroidism needs at least a panel of bloodtests, including Anti-thyroid antibodies, free T4 and T3, Total or free, to rule out Hashimoto's before decisions are made on therapy.
Unfortunately, at least in the USA it is very difficult to secure first new-patient visits with endocrinologists. I would not wait to find a qualified endocrinologist, preferably affiliated with a teaching hospital, where the newest and most thorough evaluation can be done. If you explain the situation they will try to get you in earlier, so I'd call several and be willing to travel if necessary.
Good luck, and thank you so much for reaching out for advice. Autoimmune disorders are confusing. I, a liver nurse, have always thought endocrinologists and rheumatologists, who specialize in autoimmune diseases, were the brainiacs of medicine. Long and complicated residencies and fellowships, long involved visits with patients who typically feel awful and are very afraid, and no procedures to bring in money. No wonder there are so few of them around, but those who choose that field are passionate and dedicated to their patients.
posted by citygirl at 7:26 AM on June 23, 2021 [6 favorites]
You've gotten a lot of good advice above. Strongly second what KayQuestions says, including this:
A main reason some people are not getting the relief they need from fatigue, weight gain, brain fog, etc., is that some endocrinologists are using the dosing standards from 25 years ago, which called for far less T-4 replacement. The newer standards call for much more thyroid hormone replacement. Also, patients sometimes have other conditions which are not being adequately treated, like Vitamin D deficiency and anemia.
I just want to chime in and second that he could wind up having additional autoimmune issues, so it is something to watch out for. In my case, I first had pernicious anemia (which is a vitamin B12 deficiency and is an autoimmune disorder) and then later became hypothyroid (I was completely exhausted and getting sick all the time).
I would suggest making sure they do blood work to check his iron levels, vitamin D, and also vitamin B12, since deficiencies in any of these can cause someone to feel tired/exhausted.
posted by gudrun at 7:28 AM on June 23, 2021 [5 favorites]
A main reason some people are not getting the relief they need from fatigue, weight gain, brain fog, etc., is that some endocrinologists are using the dosing standards from 25 years ago, which called for far less T-4 replacement. The newer standards call for much more thyroid hormone replacement. Also, patients sometimes have other conditions which are not being adequately treated, like Vitamin D deficiency and anemia.
I just want to chime in and second that he could wind up having additional autoimmune issues, so it is something to watch out for. In my case, I first had pernicious anemia (which is a vitamin B12 deficiency and is an autoimmune disorder) and then later became hypothyroid (I was completely exhausted and getting sick all the time).
I would suggest making sure they do blood work to check his iron levels, vitamin D, and also vitamin B12, since deficiencies in any of these can cause someone to feel tired/exhausted.
posted by gudrun at 7:28 AM on June 23, 2021 [5 favorites]
Don't forget that only the people for whom this normal treatment doesn't work (or have convinced themselves that it doesn't work) are going to spend their time posting about it on the internet.
Hello, I'm sure you didn't mean this to be as condescending and dismissive as it came across to me, a person who has convinced themself that the "normal" treatment didn't work because it didn't actually work and has occasionally spent time posting on the internet about it in response to other people for whom the "normal" treatment doesn't work.
In my experience, most endocrinologists are going to default to the "standard" lab range (which as others have noted, is often outdated) and the "standard" medication (synthetic T4). I spent A LOT of time, money, and my very limited energy going to increasingly more obscure specialists, until I found a doctor who would treat by symptoms and prescribed natural thyroid. I can't say I am 100% "normal", but it took care of most of my obviously thyroid-related symptoms.
Unfortunately you do sometimes have to sift through the woo - I think this is a side effect of so many medical professionals gaslighting patients about their symptoms. My current doc occasionally trends that way and I have to politely head that off but he really is good about working with me on thyroid issues. Is there any way you can ask BF's doc to at least try to add T3 and see if there is improvement? Ask for Free T3/Free T4 tests to see what they show?
posted by Preserver at 9:36 AM on June 23, 2021 [6 favorites]
Hello, I'm sure you didn't mean this to be as condescending and dismissive as it came across to me, a person who has convinced themself that the "normal" treatment didn't work because it didn't actually work and has occasionally spent time posting on the internet about it in response to other people for whom the "normal" treatment doesn't work.
In my experience, most endocrinologists are going to default to the "standard" lab range (which as others have noted, is often outdated) and the "standard" medication (synthetic T4). I spent A LOT of time, money, and my very limited energy going to increasingly more obscure specialists, until I found a doctor who would treat by symptoms and prescribed natural thyroid. I can't say I am 100% "normal", but it took care of most of my obviously thyroid-related symptoms.
Unfortunately you do sometimes have to sift through the woo - I think this is a side effect of so many medical professionals gaslighting patients about their symptoms. My current doc occasionally trends that way and I have to politely head that off but he really is good about working with me on thyroid issues. Is there any way you can ask BF's doc to at least try to add T3 and see if there is improvement? Ask for Free T3/Free T4 tests to see what they show?
posted by Preserver at 9:36 AM on June 23, 2021 [6 favorites]
I just want to chime in and second that he could wind up having additional autoimmune issues, so it is something to watch out for. In my case, I first had pernicious anemia (which is a vitamin B12 deficiency and is an autoimmune disorder) and then later became hypothyroid (I was completely exhausted and getting sick all the time).
Hello! This is also me, except the other way around (I found the thyroid issue first). DEFINITELY get a vitamin panel run. My thyroid is pretty well under control -- I also feel better on Armour, the natural thyroid -- but when my B12 is low, I truly feel like death is imminent and like, have to take to my bed. It sucks! But it's also fairly easily treated. It might make him feel better to know that this is very very normal for his condition and it's likely that he WILL feel better eventually!
posted by Countess Sandwich at 11:19 AM on June 23, 2021 [4 favorites]
Hello! This is also me, except the other way around (I found the thyroid issue first). DEFINITELY get a vitamin panel run. My thyroid is pretty well under control -- I also feel better on Armour, the natural thyroid -- but when my B12 is low, I truly feel like death is imminent and like, have to take to my bed. It sucks! But it's also fairly easily treated. It might make him feel better to know that this is very very normal for his condition and it's likely that he WILL feel better eventually!
posted by Countess Sandwich at 11:19 AM on June 23, 2021 [4 favorites]
You want a very analytical doctor who specializes in hypothyroidism. If you get an endocrinologist, know that hypothyroidism is the poor stepchild of diabetes (which is much more lucrative and often means they think a lot less about thyroid issues). I don't understand how the Canadian health system works, but if you have very little choice in terms of doctor, I'd say pay out of pocket if you have to. I fired several doctors before I finally found the one I've been using for more than 10 years. One of doctors I fired included the doctor who had written the standard reference textbook on thyroid disease and he was, hands down, the laziest and least competent, to the point that I was showing him stuff from a Harvard medical reference aligning with my symptoms and he kept telling me it was all in my head.
I agree with a lot that's been said above. I take Armour-type drugs. I tried multiple others, including Synthroid. None worked for me. In the U.S., you're frequently told that all the thyroid brands are bioequivalent. They're not. Some have fillers, and it's actually possible to be allergic to them. There are also slight differences in potency ranges among some of them.
Regarding other autoimmune diseases: Don't get overly scared about this. Although the statistical odds are higher of getting a second autoimmune disease, the range is so vast rhinitis (e.g. a runny nose from allergies) can count.
Food intake can matter a lot with thyroid disease. Not only is it worth it to do a food challenge, but it's worth radically increasing the intake of protein. Thyroid disease slows you down. If you've had it for years improperly treated it will indirectly affect other things, including how efficiently you metabolize food. Prior to being properly diagnosed I ate half what my partner ate; afterward, I ate the same amount (and I'm half their size) — and I felt much much better. It is very easy to eat too little, generally, or to eat something with too little protein — and crash. Once you crash, there was no coming back from it for the entire day. Over time, I learned the most effective approach was to double (treble) up my proteins: meat + beans + cheese, for example, and after a while I learned that if I left the table a little too full, I would feel significantly, predictably better for the rest of the day. Protein is energy, after all. If you suffer from hypothyroid, until you're really well treated for a long time, you may just not have enough.
Low energy can also most definitely do a job on your mood. Even now, if I start to feel a little depressed, I recognize that cause is most often physical regardless of what else is going on. Conversely, high energy in the form of food played the biggest role in making me feel normal long-term. As others mentioned gluten sensitivity or celiac is statistically much more common in people with thyroid conditions. I mostly eat gluten free as a result, and that helped too, both because I clearly am sensitive to it (hives) and and because by not eating gluten I am forced to eat more protein.
There are a lot of radically unscientific websites on this topic, but not all are like that. I found the forums at some sites helpful, including for doctor recommendations or symptom checks. I also started looking into books written on the topic by doctors. Many are also bad. But some are simply trying to communicate what they've learned outside of the usual academic routes, which is how I found my current doctor. Again, look at the reasoning, tone and logic rather than dismiss everything as woo. Standard treatments are frequently terrible. Synthroid is one of the biggest-selling drugs in the U.S. even though there have been multiple international studies showing that more patients feel better on T3 and T4.
Finally, although my doctor does a slew of tests to check on my thyroid health, he also uses the TSH test as a rough measure. When I first started seeking treatment, a doctor told they never treated anyone with a TSH under 20. (I believe I was 10 at the time, and slept much of the day.) Once I was properly treated, it actually turned out my TSH should be just about 1.5 — and I think the entire range caps out around 5 now, though you'd have to double-check me on that.
Anyway, it does get better. The main issue after all of my symptoms were gone was keeping up in changes to dosage. Because that can be a little unstable for all sorts of reasons, my doctor prescribes the lowest dose pills out there, and then has had me increase in tiny increments when the dosage was clearly off. Practically, this means I take three pills/night every night. It's a little annoying until just one more pill is the difference between feeling not quite right and feeling perfectly fine. Over time, however, you learn on your own what makes you feel bad and whether you probably need a slightly different dosage. Now, I don't even think about it much. And that's really the ideal, isn't it? It does get better.
posted by Puppetry for Privacy at 11:03 PM on June 23, 2021 [6 favorites]
I agree with a lot that's been said above. I take Armour-type drugs. I tried multiple others, including Synthroid. None worked for me. In the U.S., you're frequently told that all the thyroid brands are bioequivalent. They're not. Some have fillers, and it's actually possible to be allergic to them. There are also slight differences in potency ranges among some of them.
Regarding other autoimmune diseases: Don't get overly scared about this. Although the statistical odds are higher of getting a second autoimmune disease, the range is so vast rhinitis (e.g. a runny nose from allergies) can count.
Food intake can matter a lot with thyroid disease. Not only is it worth it to do a food challenge, but it's worth radically increasing the intake of protein. Thyroid disease slows you down. If you've had it for years improperly treated it will indirectly affect other things, including how efficiently you metabolize food. Prior to being properly diagnosed I ate half what my partner ate; afterward, I ate the same amount (and I'm half their size) — and I felt much much better. It is very easy to eat too little, generally, or to eat something with too little protein — and crash. Once you crash, there was no coming back from it for the entire day. Over time, I learned the most effective approach was to double (treble) up my proteins: meat + beans + cheese, for example, and after a while I learned that if I left the table a little too full, I would feel significantly, predictably better for the rest of the day. Protein is energy, after all. If you suffer from hypothyroid, until you're really well treated for a long time, you may just not have enough.
Low energy can also most definitely do a job on your mood. Even now, if I start to feel a little depressed, I recognize that cause is most often physical regardless of what else is going on. Conversely, high energy in the form of food played the biggest role in making me feel normal long-term. As others mentioned gluten sensitivity or celiac is statistically much more common in people with thyroid conditions. I mostly eat gluten free as a result, and that helped too, both because I clearly am sensitive to it (hives) and and because by not eating gluten I am forced to eat more protein.
There are a lot of radically unscientific websites on this topic, but not all are like that. I found the forums at some sites helpful, including for doctor recommendations or symptom checks. I also started looking into books written on the topic by doctors. Many are also bad. But some are simply trying to communicate what they've learned outside of the usual academic routes, which is how I found my current doctor. Again, look at the reasoning, tone and logic rather than dismiss everything as woo. Standard treatments are frequently terrible. Synthroid is one of the biggest-selling drugs in the U.S. even though there have been multiple international studies showing that more patients feel better on T3 and T4.
Finally, although my doctor does a slew of tests to check on my thyroid health, he also uses the TSH test as a rough measure. When I first started seeking treatment, a doctor told they never treated anyone with a TSH under 20. (I believe I was 10 at the time, and slept much of the day.) Once I was properly treated, it actually turned out my TSH should be just about 1.5 — and I think the entire range caps out around 5 now, though you'd have to double-check me on that.
Anyway, it does get better. The main issue after all of my symptoms were gone was keeping up in changes to dosage. Because that can be a little unstable for all sorts of reasons, my doctor prescribes the lowest dose pills out there, and then has had me increase in tiny increments when the dosage was clearly off. Practically, this means I take three pills/night every night. It's a little annoying until just one more pill is the difference between feeling not quite right and feeling perfectly fine. Over time, however, you learn on your own what makes you feel bad and whether you probably need a slightly different dosage. Now, I don't even think about it much. And that's really the ideal, isn't it? It does get better.
posted by Puppetry for Privacy at 11:03 PM on June 23, 2021 [6 favorites]
I also take Armour, because other types did not work for me. It took me decades to find an endo willing to have a frank discussion about how I feel versus "the numbers," and adjust based on my needs rather than a preprescribed "norm" that is likely not normal for everyone at all.
I also had had sudden onset Graves disease, which is hyperthroid-based, after a lifetime of low or borderline low thyoid. At first, I was basically told this was very unusual. Turns out.... the more reading I do, the more I discover it's not unusual at all, which is why level testing periodically is important, especially if there's sudden weight loss without any other explanation. My thyroid went back to its lower-than-normal self a year later, after some pretty serious health consequences.
posted by answergrape at 1:03 PM on July 6, 2021 [2 favorites]
I also had had sudden onset Graves disease, which is hyperthroid-based, after a lifetime of low or borderline low thyoid. At first, I was basically told this was very unusual. Turns out.... the more reading I do, the more I discover it's not unusual at all, which is why level testing periodically is important, especially if there's sudden weight loss without any other explanation. My thyroid went back to its lower-than-normal self a year later, after some pretty serious health consequences.
posted by answergrape at 1:03 PM on July 6, 2021 [2 favorites]
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posted by meowzilla at 9:46 PM on June 22, 2021 [6 favorites]