Hypothyroidism experiences and advice
February 15, 2023 1:29 PM Subscribe
Just diagnosed with hypothyroidism, and my GP said that my test results for previous years indicate I may have had it since 2012. I'm weirdly astounded at this, despite having a family history of it, and am slightly spiralling about the implications. Looking for other people's experiences, and advice on some specifics - also wondering about the implications for treatment of ADHD.
In case it's helpful for answerers, my T4 level was 4.6 and TSH 21.9.
Some specific questions - my GP mentioned that I need to be careful about taking calcium and iron in combination with levothyroxine. I drink milk as my primary beverage so my calcium intake is high. Do I just need to avoid milk immediately after taking levothyroxine, or is it more of an issue? Similarly, I take iron supplements because I've been anaemic in the past. Is it ok to take them at a different time or should I stop altogether?
I also have a diagnosis of ADHD. I'm aware that some of the symptoms of ADHD overlap with those of untreated hypothyroidism. If you have both, have you found that you don't need to treat your ADHD if your hypothyroidism is well-managed? I don't mean to minimalise the effects of ADHD, just wondering how the conditions overlap and affect each other. I am waiting for a prescription for Bupropion (have been told this will not be for a few months because of a shortage); is there any reason why this wouldn't be appropriate if I am on levothyroxine?
My actual reason for seeing the doctor was to ask about HRT, primarily for recent sleep issues and headaches which I think might be menopause-related (I am 49). I've put that on hold for the moment but am still interested in pursuing it at some stage, partly because of the recent research about HRT having a positive effect on the chances of getting dementia. Are there any implications for HRT of being on levothyroxine?
And this is woolly, but I'm struggling with thinking differently about tiredness and the consequent difficulty of getting things done. Hopefully I will feel less tired soon and therefore be able to achieve more - but in the meantime what do I do with the feelings and thoughts about low energy levels? I'm a ruminator and I'm already finding myself in spirals of "am I slumping in a chair and playing Spider Solitaire because I am lazy, because my ADHD means I am looking for distractions, because hypothyroidism means I am tired, because of all or none of the above?". I struggled with the ADHD diagnosis as I kept questioning myself about what in my actions was me and what was ADHD. I'm struggling again with re-adjusting my picture of my behaviour in the light of this new information. I do realise that this is a relatively minor condition and common and that I'm fortunate to have had it diagnosed and the opportunity of treatment.
I have read this question: Newly diagnosed with hypothyroidism and found the answers helpful, but it is from 2010.
In case it's helpful for answerers, my T4 level was 4.6 and TSH 21.9.
Some specific questions - my GP mentioned that I need to be careful about taking calcium and iron in combination with levothyroxine. I drink milk as my primary beverage so my calcium intake is high. Do I just need to avoid milk immediately after taking levothyroxine, or is it more of an issue? Similarly, I take iron supplements because I've been anaemic in the past. Is it ok to take them at a different time or should I stop altogether?
I also have a diagnosis of ADHD. I'm aware that some of the symptoms of ADHD overlap with those of untreated hypothyroidism. If you have both, have you found that you don't need to treat your ADHD if your hypothyroidism is well-managed? I don't mean to minimalise the effects of ADHD, just wondering how the conditions overlap and affect each other. I am waiting for a prescription for Bupropion (have been told this will not be for a few months because of a shortage); is there any reason why this wouldn't be appropriate if I am on levothyroxine?
My actual reason for seeing the doctor was to ask about HRT, primarily for recent sleep issues and headaches which I think might be menopause-related (I am 49). I've put that on hold for the moment but am still interested in pursuing it at some stage, partly because of the recent research about HRT having a positive effect on the chances of getting dementia. Are there any implications for HRT of being on levothyroxine?
And this is woolly, but I'm struggling with thinking differently about tiredness and the consequent difficulty of getting things done. Hopefully I will feel less tired soon and therefore be able to achieve more - but in the meantime what do I do with the feelings and thoughts about low energy levels? I'm a ruminator and I'm already finding myself in spirals of "am I slumping in a chair and playing Spider Solitaire because I am lazy, because my ADHD means I am looking for distractions, because hypothyroidism means I am tired, because of all or none of the above?". I struggled with the ADHD diagnosis as I kept questioning myself about what in my actions was me and what was ADHD. I'm struggling again with re-adjusting my picture of my behaviour in the light of this new information. I do realise that this is a relatively minor condition and common and that I'm fortunate to have had it diagnosed and the opportunity of treatment.
I have read this question: Newly diagnosed with hypothyroidism and found the answers helpful, but it is from 2010.
I've been taking levothyroxine for decades. I can help with that part of the question.
The notes with the prescription say "take on an empty stomach at least 30 to 60 minutes before breakfast" and "do not take iron products, antacids that have aluminum or magnesium, or calcium carbonate, within four hours before or four hours after taking this drug". So you should be able to take your supplements, just not in the morning.
That being said, I routinely eat breakfast within an hour of taking the medication. It probably does change how the medication is absorbed, but at this point my current prescription is taking into account my current breakfast routine (via measuring the T4 levels in my blood after the fact). I expect that if I changed my breakfast routine drastically (either what I eat, or the timing) my prescription may need adjustment.
posted by meowzilla at 1:54 PM on February 15, 2023 [3 favorites]
The notes with the prescription say "take on an empty stomach at least 30 to 60 minutes before breakfast" and "do not take iron products, antacids that have aluminum or magnesium, or calcium carbonate, within four hours before or four hours after taking this drug". So you should be able to take your supplements, just not in the morning.
That being said, I routinely eat breakfast within an hour of taking the medication. It probably does change how the medication is absorbed, but at this point my current prescription is taking into account my current breakfast routine (via measuring the T4 levels in my blood after the fact). I expect that if I changed my breakfast routine drastically (either what I eat, or the timing) my prescription may need adjustment.
posted by meowzilla at 1:54 PM on February 15, 2023 [3 favorites]
Some people do fine on Synthroid and standard care. Some don't. Those who don't make up a significant minority, which is why Paloma Health, a medical servine solely devoted to treating hypothyroidism exists.
In terms of drug interactions: I always found it easiest to take iron in the AM and thyroid medication at night to avoid any conflicts.
As for tiredness and low energy: Medication may do it all. If it doesn't, apart from looking at other kinds of providers who prescribe a greater range of medications, consider focusing on a protein-first diet. Some hypothyroid patients need to take care to eat enough protein in order to have normal energy levels.
posted by Puppetry for Privacy at 2:45 PM on February 15, 2023 [1 favorite]
In terms of drug interactions: I always found it easiest to take iron in the AM and thyroid medication at night to avoid any conflicts.
As for tiredness and low energy: Medication may do it all. If it doesn't, apart from looking at other kinds of providers who prescribe a greater range of medications, consider focusing on a protein-first diet. Some hypothyroid patients need to take care to eat enough protein in order to have normal energy levels.
posted by Puppetry for Privacy at 2:45 PM on February 15, 2023 [1 favorite]
I don't have adhd, but did have pretty significant "depression" that just disappeared. The change on the thyroid medication was dramatic in that my life improved so so much so fast in just a few weeks. At that point I ended up discontinuing mental health meds that weren't doing me any good.
It just felt like I had the motivation to do things honestly. Like the switch on my brain that was conserving my energy because I was so tired got turned off and I could just... Wash the dishes. I woke up from sleeping and didn't feel like I needed more sleep, I felt ready to get out of bed (not everyday but most days!) I could sleep just 8 hours a night (I was sleeping between 10 and 14 hours a night and still talking naps). Overall how I accessed the world, and what I had the capacity to do and handle physically and emotionally expanded pretty significantly.
In terms of day to day I take it when I wake up with my diet soda. I generally don't eat breakfast so I don't stress about that. Sometimes I eat tums in the evening after a meal without hassle.
posted by AlexiaSky at 6:40 PM on February 15, 2023 [1 favorite]
It just felt like I had the motivation to do things honestly. Like the switch on my brain that was conserving my energy because I was so tired got turned off and I could just... Wash the dishes. I woke up from sleeping and didn't feel like I needed more sleep, I felt ready to get out of bed (not everyday but most days!) I could sleep just 8 hours a night (I was sleeping between 10 and 14 hours a night and still talking naps). Overall how I accessed the world, and what I had the capacity to do and handle physically and emotionally expanded pretty significantly.
In terms of day to day I take it when I wake up with my diet soda. I generally don't eat breakfast so I don't stress about that. Sometimes I eat tums in the evening after a meal without hassle.
posted by AlexiaSky at 6:40 PM on February 15, 2023 [1 favorite]
I take levo for low thyroid but was never given all the caution about not eating with the medication. I can get nauseous easily when I take pills on an empty stomach, so I take everything at dinner. My TSH numbers have been fine for years now.
I do think it helps me sleep better because the few times a year I forget my meds, I often have trouble sleeping in the mornings.
posted by soelo at 8:26 PM on February 15, 2023
I do think it helps me sleep better because the few times a year I forget my meds, I often have trouble sleeping in the mornings.
posted by soelo at 8:26 PM on February 15, 2023
I have hypothyroidsism and my "sweet spot" is TSH right around 1. echoing what someone else said, that a significant minority of people do not do well on Synthroid (even though their levels might go down and look good -- that's what happened in my mom's experience -- her levels were good but she felt terrible). Hopefully that won't be you, but if it is you, be aware of alternatives available -- Armour and specially mixed T3/T4 compound medicines. I take Armour.
posted by virve at 9:40 PM on February 15, 2023
posted by virve at 9:40 PM on February 15, 2023
The good thing about thyroid medicine is that a simple blood test will tell you if the drugs are working. Thus far I've been all right with a dairy-heavy breakfast half an hour after drugs (though according to my endocrinologist gold standard is to take it in the middle of the night... if you can fall asleep again afterwards), but magnesium supplements in particular really interfered with absorption, so I just shifted them to the evening portion. On the other hand, melatonin for sleep (in the evening) apparently interacts positively with levothyroxine and results in better TSH levels.
My ADHD is fairly mild and thus unmedicated, because local standards for medication in adults is "can't hold down a job" levels of impairment, but I've noticed definite improvement once I have enough energy from better thyroid function to focus. More executive function, more focus, more spoons. Hopefully that'll be you within the week!
posted by I claim sanctuary at 11:08 PM on February 15, 2023
My ADHD is fairly mild and thus unmedicated, because local standards for medication in adults is "can't hold down a job" levels of impairment, but I've noticed definite improvement once I have enough energy from better thyroid function to focus. More executive function, more focus, more spoons. Hopefully that'll be you within the week!
posted by I claim sanctuary at 11:08 PM on February 15, 2023
I've been diagnosed with hypothyroidism 3 years ago (probably would have been earlier if the tests had been run).
I had high hopes for levothyroxine, but after months of adjusting the dose, and my blood tests looking great "on paper", i feel almost 0 difference. I take 175 mcg.
So, I'm still searching for the root cause of the problem. The idea is to figure out what's causing inflammation in my body resulting in this autoimmune disease.
I've already made so many lifestyle adjustments, there's not much left i can improve, yet i still feel terrible.
BHRT is one of the options i'm investigating at the moment (I'm 38). Waiting for the very expensive tests results back. My doctor didn't mention any issues to potentially being treated with BHRT for imbalanced hormones as well as hypothyroid. She also prescribes bio-identical thyroid hormones (very uncommon and hard to get here in the Netherlands, and also not covered by insurance).
I hope you respond to the drugs well and you get relief fast. If not, know that there are other alternatives you can look into. I wish i explored other solutions earlier.
posted by PardonMyFrench at 1:24 AM on February 16, 2023
I had high hopes for levothyroxine, but after months of adjusting the dose, and my blood tests looking great "on paper", i feel almost 0 difference. I take 175 mcg.
So, I'm still searching for the root cause of the problem. The idea is to figure out what's causing inflammation in my body resulting in this autoimmune disease.
I've already made so many lifestyle adjustments, there's not much left i can improve, yet i still feel terrible.
BHRT is one of the options i'm investigating at the moment (I'm 38). Waiting for the very expensive tests results back. My doctor didn't mention any issues to potentially being treated with BHRT for imbalanced hormones as well as hypothyroid. She also prescribes bio-identical thyroid hormones (very uncommon and hard to get here in the Netherlands, and also not covered by insurance).
I hope you respond to the drugs well and you get relief fast. If not, know that there are other alternatives you can look into. I wish i explored other solutions earlier.
posted by PardonMyFrench at 1:24 AM on February 16, 2023
The recommendation is often to take the medicine in the morning and wait 30 - 60 minutes before eating breakfast or having any drink apart from water. However I read that the medication absorbs over three hours, so waiting 30 - 60 minutes is not long enough.
I switched to taking it right before bed. I try to wait at least two hours after having any food, supplements or drinks apart from water. Ideal would be waiting three or four hours, but it's just not possible for me.
I feel like my energy levels have improved since making this change.
posted by kinddieserzeit at 2:37 AM on February 16, 2023
I switched to taking it right before bed. I try to wait at least two hours after having any food, supplements or drinks apart from water. Ideal would be waiting three or four hours, but it's just not possible for me.
I feel like my energy levels have improved since making this change.
posted by kinddieserzeit at 2:37 AM on February 16, 2023
I've been on Synthroid or its generic since I was 16 (I'm 46 now, wow) and in my experience, your energy levels should pick up very quickly once y'all get your dose right. (Lots of other things did too - I became less constipated, I healed faster, I slept better). Then again, I was a teenager, so YMMV.
Re: the rumination... try not to spiral about "what's this, what's that" etc (I know, easier said than done) until you've been on the meds for awhile and see how you feel. Just feel how you feel. If you need to take a break - take a break. You're not lazy, you're tired, whether it's the ADHD or the thyroid or the weather or whatever. Once you have one variable out of the equation (meds for the thyroid in your system and adjusted properly), then you can see how you feel and go from there.
posted by joycehealy at 12:14 PM on February 16, 2023
Re: the rumination... try not to spiral about "what's this, what's that" etc (I know, easier said than done) until you've been on the meds for awhile and see how you feel. Just feel how you feel. If you need to take a break - take a break. You're not lazy, you're tired, whether it's the ADHD or the thyroid or the weather or whatever. Once you have one variable out of the equation (meds for the thyroid in your system and adjusted properly), then you can see how you feel and go from there.
posted by joycehealy at 12:14 PM on February 16, 2023
Best answer: I've had hypothyroidism for years and years. I'll weigh in on the taking meds with food aspect. My doctor's advice was to work out the routine that worked best for me, in terms of taking it with breakfast, other vitamins, etc. and then work out what dose level is needed to keep my TSH where it should be. Vitamins like calcium will affect the absorption, yes, but you can adjust your dose to account for that and make sure you're getting what you need. It's more important to be consistent about it. So if you want to take it with your calcium pill or with milk, just make sure you always do that. I always take mine with my coffee and milk in the morning, for example, and take my calcium pill in the evening.
Also, levothyroxine has a very long half-life in your body and the dosing is extremely forgiving of missing a dose and then taking two to make up for it. I found a study at one point saying you could take a week's worth once a week, even. Probably not the best way to start with your meds, when you're still figuring out the dose and so on, but know that you have some grace room in taking it. And I'm sure you know what you need in terms of managing ADHD and taking meds regularly.
I was *very* hypo when first diagnosed and found that it took quite some time for all of the symptoms to resolve. Some I didn't even realize were symptoms until they went away. I hope you are able to feel better and better. I did have to adjust my med level when I hit menopause, but we figured that out and now things are fine again.
posted by gingerbeer at 12:40 PM on February 16, 2023
Also, levothyroxine has a very long half-life in your body and the dosing is extremely forgiving of missing a dose and then taking two to make up for it. I found a study at one point saying you could take a week's worth once a week, even. Probably not the best way to start with your meds, when you're still figuring out the dose and so on, but know that you have some grace room in taking it. And I'm sure you know what you need in terms of managing ADHD and taking meds regularly.
I was *very* hypo when first diagnosed and found that it took quite some time for all of the symptoms to resolve. Some I didn't even realize were symptoms until they went away. I hope you are able to feel better and better. I did have to adjust my med level when I hit menopause, but we figured that out and now things are fine again.
posted by gingerbeer at 12:40 PM on February 16, 2023
Response by poster: Thanks, everyone, for the answers.
posted by paduasoy at 3:30 AM on March 20, 2023
posted by paduasoy at 3:30 AM on March 20, 2023
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