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Starving After Starting Thyroid Meds


SleepyBunny

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beachbirdie Contributor

I've been taking 30mg of Thyroid which is lower than what I was taking with the levo. I believe it's equivalent to 50mcg of levo? I was taking 75mcg and even then with my last blood test my TSH had started creeping up again. I know I need to take this slowly but it's not easy :( I'm so tired of having no energy and sleeping a lot. Even my husband has noticed. He said you were doing better and now it's like you're in slow motion again. I called the drs office to see if he can bump it up. I have labs in 3 weeks so it should give it time. I actually bumped up my dose myself last night. I know I know!!! But I'm sure you guys know how desperate it can get when you feel this way. I'm on 30mg and split one. So I took 45mg. If he bumps me to 60mg I'll take 45mg till I finish what I have just to ease into it. I do just take it once and at bedtime and I seem to do well that way. I'll give it time like you said. Thank you guys for responding it really helps calm me down. :)

Yes, the 30 mg of Thyroid is roughly equivalent to 50 mcg synthetic. You probably are a little underdosed.

I second what Skylark said. Your doc must stop adjusting doses by TSH. Natural thyroid very quickly lowers the TSH and a lot of doctors think you are hyper when you are NOT. They need to do your Free T3 and Free T4 in order to manage doses well.

My TSH was near zero for a very long time and I was nowhere near hyper. It's been creeping up but I've been forgetting my pills a lot (major life stress going on).

I know what you mean about the slow motion thing. I used to tell my husband I felt like I was trying to run in waist-deep mud. It's especially hard to get back into feeling so sluggish when you've had times when you've felt really good. Ugh!

Hopefully you'll be feeling more energetic soon, and hopefully the natural thyroid will work well for you. I love mine, I will NEVER EVER go back to synthetic alone. Even if I have to go out in the woods, hunt down the wild pigs and stir it up in my bathtub. :ph34r:

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Skylark Collaborator

Are you still having trouble thinking right and remembering things? Do you think your dose needs to be tweaked or do you just need to wait for it to level out? Man me and you have such similar situations! :)

I still feel muzzy-headed and dizzy most of the time. I don't know what's wrong but I don't think it's thyroid. One of my friends said she felt this way in perimenopause. I think maybe my thyroid crash-and-burn set me on the path to menopause a little early.

Your head will probably clear out. I think I'm just unlucky.

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SleepyBunny Apprentice

I still feel muzzy-headed and dizzy most of the time. I don't know what's wrong but I don't think it's thyroid. One of my friends said she felt this way in perimenopause. I think maybe my thyroid crash-and-burn set me on the path to menopause a little early.

Your head will probably clear out. I think I'm just unlucky.

Is there anyway to test and see if you're in peri menopause? Sorry if that's a dumb question. I'm not sure how that works. Just keep looking for answers. I know its frustrating. I keep thinking were things really that bad to go through all of this? I just have to keep believing it will be worth it. I keep wanting to give up and stop taking thyroid medication and go celebrate with a bucket of macaroni and cheese and a wall of cake :lol: But I know it's a bad idea. I'll be praying that your luck will change and you will soon get to the point that so many of us are struggling to reach :) And if you need to vent I'm here! :)

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Skylark Collaborator

Is there anyway to test and see if you're in peri menopause? Sorry if that's a dumb question. I'm not sure how that works. Just keep looking for answers. I know its frustrating. I keep thinking were things really that bad to go through all of this? I just have to keep believing it will be worth it. I keep wanting to give up and stop taking thyroid medication and go celebrate with a bucket of macaroni and cheese and a wall of cake :lol: But I know it's a bad idea. I'll be praying that your luck will change and you will soon get to the point that so many of us are struggling to reach :) And if you need to vent I'm here! :)

Thanks a million! I read this at just the right time today, because I'm sitting here dizzy and frustrated. Your kind words mean a lot. :)

My endocrinologist wants to get my TSH settled first and then we will deal with the perimenopause. I think there are tests for it. I have a naturopath I'll get to see in a couple weeks once I'm back from vacation and she will probably have some ideas too.

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SleepyBunny Apprentice

Thanks a million! I read this at just the right time today, because I'm sitting here dizzy and frustrated. Your kind words mean a lot. :)

My endocrinologist wants to get my TSH settled first and then we will deal with the perimenopause. I think there are tests for it. I have a naturopath I'll get to see in a couple weeks once I'm back from vacation and she will probably have some ideas too.

Aaaww I'm glad I could make you feel a little better :) You always help me on here and I appreciate it! :)

Being dizzy sucks :( I hope you're feeling better! At least you're on vacation. That always helps :) have you been to this naturopath before? Do you like seeing them? Are they able to prescribe thyroid meds? Sorry for all the questions lol :)

Where are you vacationing? :)

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SleepyBunny Apprentice

Yes, the 30 mg of Thyroid is roughly equivalent to 50 mcg synthetic. You probably are a little underdosed.

I second what Skylark said. Your doc must stop adjusting doses by TSH. Natural thyroid very quickly lowers the TSH and a lot of doctors think you are hyper when you are NOT. They need to do your Free T3 and Free T4 in order to manage doses well.

My TSH was near zero for a very long time and I was nowhere near hyper. It's been creeping up but I've been forgetting my pills a lot (major life stress going on).

I know what you mean about the slow motion thing. I used to tell my husband I felt like I was trying to run in waist-deep mud. It's especially hard to get back into feeling so sluggish when you've had times when you've felt really good. Ugh!

Hopefully you'll be feeling more energetic soon, and hopefully the natural thyroid will work well for you. I love mine, I will NEVER EVER go back to synthetic alone. Even if I have to go out in the woods, hunt down the wild pigs and stir it up in my bathtub. :ph34r:

I called the office again and still nothing. I'm thinking of actually going to the office tomorrow. I'm just worried my insurance may not cover it since it's compounded. :(

Yeah my TSH was around 5.something then dropped to 1.3something after levo but still didnt feel that great. In April my TSH was 2 and my t3 was at the lower end of the range. Also considered "normal"

I hope this natural thyroid works for me too! :) And i understand major life stresses. I went through quite a bit when I was going through my detox diet and all but you need to take your medicine!!! :) you're just going to end up starting over if you stop. Trust me I know lol I hope things are getting better for you. And same goes for you if you need to vent I'm here! :)

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SleepyBunny Apprentice

Is it normal to feel "off" when you're changing doses? My head still feels a little funny at times and my body is weak. It's like when you've been sick then you feel better but as soon as you try to do something you feel winded and sluggish.

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Skylark Collaborator

Aaaww I'm glad I could make you feel a little better :) You always help me on here and I appreciate it! :)

Being dizzy sucks :( I hope you're feeling better! At least you're on vacation. That always helps :) have you been to this naturopath before? Do you like seeing them? Are they able to prescribe thyroid meds? Sorry for all the questions lol :)

Where are you vacationing? :)

Going to visit my folks in Georgia. I don't get to see them very often. I've been to the naturopath once, got some tests done. Results are back in so I'll go again when I'm back to see what the results are. Yes, she can prescribe.

Is it normal to feel "off" when you're changing doses? My head still feels a little funny at times and my body is weak. It's like when you've been sick then you feel better but as soon as you try to do something you feel winded and sluggish.

Yeah, it's normal to feel weird. Thyroid is a big deal and your body has to adjust to dose changes for weeks!

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SleepyBunny Apprentice

The PA actually called me himself this morning and told me to stick with 30mg but take 45mg on Tuesdays and Thursdays. I've only been taking the 45mg for 3 days so I think I'm going to try what he said and see how it goes. Hopefully things will start to level out soon. :)

I hope you have a nice trip! It's nice to visit family you haven't seen in a while. You'll have to see if there's any good gluten-free restaurants in the area you're going to :)

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Gemini Experienced

I know I shouldn't have stopped my meds but I was so unbelievably frustrated :( I started compounded thyroid about 3 weeks ago. Some days I feel pretty good (not necessarily as good as I think I should feel) and others I feel like this is never going to end :( The wellness dr did not test my thyroid. I showed him results from past drs and actually got my gp to prescribe the thyroid med. My gp wants to test me soon to check my levels. I want to up my meds myself cos I'm starting to feel tired a lot again. :(It's to the point of we're it's almost impossible to wake up when I have to work in the morning. I keep looking for reasons to go home or call in. The wellness dr has me eating better but also wants me eating like 6 times a day. When all I want to do is sleep it makes it difficult to cram all that food in. I find myself craving sugar (fruit). I ate a rice cake with honey almond butter before bed last night and it put me in a sleep coma. :( It just seems like every time I start to feel better something screws it up and it's so hard keeping track of all of this.

This is my number one symptom when my T3 or T4 is low. It's a major effort to get my butt out of bed but I have a job and have to. I have been doing this for over 20 years and the Celiac is easy compared to regulating my Hashi's thyroid. I have periods of time when all is well and then BAM! I have to re-adjust my dosage. It usually occurs when I am very stressed and I am going through this again right now, after a period of wellness on that front.

I am doing 2 moves this year, downsizing into a condo but am living in an apartment while the condo is being built. In May, I started feeling draggy as all hell and knew it was my thyroid. MY TSH was, as usual, suppressed and very low but I never use that number. My T3 was great but the T4 was in the very low normal range. I take Nature-throid, which has both. Soooooo........I started on an additional supplement of T4 (Levoxyl) at 50 mcg. Feeling better now but why the hell does this keep having to happen? It's a major pain in the butt and I am paranoid about my thyroid getting too low as I popped with shingles last time it got very low. :o I never want to repeat that experience again!

I am having my hormone levels tested, which can influence thyroid production. My adrenals are a bit screwy as my cortisol is backwards....I have low cortisol in the morning and it gets higher as the day goes on. That explains why I have always been a night owl. You can't really fix that as supplementing in the morning will only make me not sleep at night. It is such a dance to balance all of it and I find that every 3 years or so, I need a thyroid tune-up. I so feel your frustration..... :(

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SleepyBunny Apprentice

This is my number one symptom when my T3 or T4 is low. It's a major effort to get my butt out of bed but I have a job and have to. I have been doing this for over 20 years and the Celiac is easy compared to regulating my Hashi's thyroid. I have periods of time when all is well and then BAM! I have to re-adjust my dosage. It usually occurs when I am very stressed and I am going through this again right now, after a period of wellness on that front.

I am doing 2 moves this year, downsizing into a condo but am living in an apartment while the condo is being built. In May, I started feeling draggy as all hell and knew it was my thyroid. MY TSH was, as usual, suppressed and very low but I never use that number. My T3 was great but the T4 was in the very low normal range. I take Nature-throid, which has both. Soooooo........I started on an additional supplement of T4 (Levoxyl) at 50 mcg. Feeling better now but why the hell does this keep having to happen? It's a major pain in the butt and I am paranoid about my thyroid getting too low as I popped with shingles last time it got very low. :o I never want to repeat that experience again!

I am having my hormone levels tested, which can influence thyroid production. My adrenals are a bit screwy as my cortisol is backwards....I have low cortisol in the morning and it gets higher as the day goes on. That explains why I have always been a night owl. You can't really fix that as supplementing in the morning will only make me not sleep at night. It is such a dance to balance all of it and I find that every 3 years or so, I need a thyroid tune-up. I so feel your frustration..... :(

Have you been following me down and writing the way I feel? Lol That sounds just like me! When I started with the 30mg about 3 weeks ago I've been fine. I felt I could feel better but pretty good. Then bam! Like you said. All of a sudden I'm just exhausted. I have low morning cortisol also (night owl too) and the dr had me on supplements for that also. I had a set schedule and for the most part I worked in the evenings and went in around 11:30 am on weekends. 11:30 sounds late enough but sometimes having to be at work that early was kind of a pain but doable. Then my boss took it away and has me working early every other fri,sat, sun. It was so hard almost physically painful to wake up that early. Then it actually started getting to be ok with the supplements and thyroid meds. This past weekend was an early weekend and it just hit me out of no where. I had to leave early Friday and call in sat and Sunday. I was having trouble falling asleep and then once I did I slept all day. I've just been feeling so weak too. I'm so scared of getting in trouble at work because of this :( What if this keeps happening and I have to call in again? And I've been having stresses too and I know that isn't good for all of this. I'm a worrier and can't help it :(

Thank you so much for putting this! It helps to hear from people with similar stories :)

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Gemini Experienced

Have you been following me down and writing the way I feel? Lol That sounds just like me! When I started with the 30mg about 3 weeks ago I've been fine. I felt I could feel better but pretty good. Then bam! Like you said. All of a sudden I'm just exhausted. I have low morning cortisol also (night owl too) and the dr had me on supplements for that also. I had a set schedule and for the most part I worked in the evenings and went in around 11:30 am on weekends. 11:30 sounds late enough but sometimes having to be at work that early was kind of a pain but doable. Then my boss took it away and has me working early every other fri,sat, sun. It was so hard almost physically painful to wake up that early. Then it actually started getting to be ok with the supplements and thyroid meds. This past weekend was an early weekend and it just hit me out of no where. I had to leave early Friday and call in sat and Sunday. I was having trouble falling asleep and then once I did I slept all day. I've just been feeling so weak too. I'm so scared of getting in trouble at work because of this :( What if this keeps happening and I have to call in again? And I've been having stresses too and I know that isn't good for all of this. I'm a worrier and can't help it :(

Thank you so much for putting this! It helps to hear from people with similar stories :)

Looks like I have another twin on this forum! I am so not a morning person and I know it all has to do with adrenals and thyroid function, but most people don't understand that. They barely comprehend Celiac, never mind thyroid problems.

I changed my hours at work because I just cannot be anywhere at 8:30 in the morning. I am a slow starter and it doesn't matter how much thyroid hormone I take, I am a slow starter. People think you are being a prima donna but if they could walk a week in my shoes, they would shut up pretty fast. I am lucky to have had this job for many years and they are pretty understanding of employees needs so I work from 10:00-6:30. But I also come in no matter how I feel as I have a sit down job. I can pull myself up and do OK on the outside but on the inside sometimes I am tired. Not always but you have these blips that happen and you have to re-adjust everything. I go hypo pretty fast when it happens and go from fine to dragging pretty quickly. I have found that stress is the number 1 enemy and I am wallowing in it right now but things should be over pretty soon on that front.

Hang in there but I know exactly why you worry as I do too. I always worry that my health will tank (I am 53) and I won't be able to make it to work and be a productive employee. The world is a pretty scary place right now with all this financial instability. I have done remarkably well with my Celiac recovery but the thyroid thing drives me crazy. I do so well for awhile and then the fatigue can creep in. Maybe that's just normal for someone with 4 autoimmune diseases and the schedule I do but I hate it. The important thing is to find a doctor who will not just dose by labs and not treat you like an idiot. That can be rare.

Hope you feel better soon! :)

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SleepyBunny Apprentice

Looks like I have another twin on this forum! I am so not a morning person and I know it all has to do with adrenals and thyroid function, but most people don't understand that. They barely comprehend Celiac, never mind thyroid problems.

I changed my hours at work because I just cannot be anywhere at 8:30 in the morning. I am a slow starter and it doesn't matter how much thyroid hormone I take, I am a slow starter. People think you are being a prima donna but if they could walk a week in my shoes, they would shut up pretty fast. I am lucky to have had this job for many years and they are pretty understanding of employees needs so I work from 10:00-6:30. But I also come in no matter how I feel as I have a sit down job. I can pull myself up and do OK on the outside but on the inside sometimes I am tired. Not always but you have these blips that happen and you have to re-adjust everything. I go hypo pretty fast when it happens and go from fine to dragging pretty quickly. I have found that stress is the number 1 enemy and I am wallowing in it right now but things should be over pretty soon on that front.

Hang in there but I know exactly why you worry as I do too. I always worry that my health will tank (I am 53) and I won't be able to make it to work and be a productive employee. The world is a pretty scary place right now with all this financial instability. I have done remarkably well with my Celiac recovery but the thyroid thing drives me crazy. I do so well for awhile and then the fatigue can creep in. Maybe that's just normal for someone with 4 autoimmune diseases and the schedule I do but I hate it. The important thing is to find a doctor who will not just dose by labs and not treat you like an idiot. That can be rare.

Hope you feel better soon! :)

I would always take forever to get ready and became self-conscious cause people would always make jokes about how I was going to make everyone run late :( I've gotten a lot better though. I wish I could just work evenings at work but I hardly see my husband enough as it is. He's been real supportive through all of this. I'm glad he doesn't just see me as lazy. He says that I don't sleep I hibernate lol

I give you credit for going to work no matter what. Some days I call in just cause I'm too tired. :( When I was in high school I slept through my alarm all the time. I even used a radio alarm and put the music as high as I could. I think that's one of the reasons I have trouble falling asleep when I have to wake up early. I'm so afraid I'm going to oversleep. That and being a night owl doesn't help.

Do you have any blood sugar problems? Ugh I want a muffin lol Sorry but the wellness dr has me fasting to help with my blood sugar. He thinks that might be part of the problem too. I'm doing ok but I keep thinking of sweets! Lol

I hope you feel better soon. Moving and getting a new place ready isn't easy. I hope that it goes smoothly for you! :)

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Razzle Dazzle Brazell Enthusiast

What does that mean them. I'm up 1 green. Does that make me awesome? Seriously, what does it mean? :unsure:

Lol I couldn't resist. A plus sign adds to your reputation so yeah it kinda pretty much means that you're awesome. And if you gp into red it kinda pretty much means you made somebody mad, or offended someone, or just said something stupid. So conversely a plus also means you are smart or said something smart ;)

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GF Lover Rising Star

I am having my hormone levels tested, which can influence thyroid production. My adrenals are a bit screwy as my cortisol is backwards....I have low cortisol in the morning and it gets higher as the day goes on. That explains why I have always been a night owl. You can't really fix that as supplementing in the morning will only make me not sleep at night. It is such a dance to balance all of it and I find that every 3 years or so, I need a thyroid tune-up. I so feel your frustration..... :(

Regarding your cortisone level. Have you been tested for Addison's. It is also an auto-immune disease that attacks the adrenal glands thus effecting cortisol levels throughout the body. It is usually overlooked as a normal thing to test for. My husband was in the hospital for 10 days before they diagnosed him with a simple blood test. He was close to dying by that point and now his adrenals are completely destroyed. He has had to take hydrocortisone and fludricort for life.

I just want to make sure you don't have another immunity problem lurking in the shadows

I hope you will begin to feel better.

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SleepyBunny Apprentice

Regarding your cortisone level. Have you been tested for Addison's. It is also an auto-immune disease that attacks the adrenal glands thus effecting cortisol levels throughout the body. It is usually overlooked as a normal thing to test for. My husband was in the hospital for 10 days before they diagnosed him with a simple blood test. He was close to dying by that point and now his adrenals are completely destroyed. He has had to take hydrocortisone and fludricort for life.

I just want to make sure you don't have another immunity problem lurking in the shadows

I hope you will begin to feel better.

Were you asking me or Gemini? Cos we both have low morning cortisol. Mine would get slightly elevated in the afternoon then go to normal. I don't believe I've had my adrenals tested. I really don't want to add to my list of problems :( I know it's important to get everything fixed though :( I was just hoping to have all of this fixed by now :(

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GF Lover Rising Star

Were you asking me or Gemini? Cos we both have low morning cortisol. Mine would get slightly elevated in the afternoon then go to normal. I don't believe I've had my adrenals tested. I really don't want to add to my list of problems :( I know it's important to get everything fixed though :( I was just hoping to have all of this fixed by now :(

You should both have it checked. It can start by just effecting the amount of cortisol being produced but can get serious without diagnosis. As an autoimmune disease, it has a whole host of symptoms that overlap with most immune diseases.

You should have the test right away. Read up on addison's disease. I hope this helps

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Gemini Experienced

I would always take forever to get ready and became self-conscious cause people would always make jokes about how I was going to make everyone run late :( I've gotten a lot better though. I wish I could just work evenings at work but I hardly see my husband enough as it is. He's been real supportive through all of this. I'm glad he doesn't just see me as lazy. He says that I don't sleep I hibernate lol

I give you credit for going to work no matter what. Some days I call in just cause I'm too tired. :( When I was in high school I slept through my alarm all the time. I even used a radio alarm and put the music as high as I could. I think that's one of the reasons I have trouble falling asleep when I have to wake up early. I'm so afraid I'm going to oversleep. That and being a night owl doesn't help.

Do you have any blood sugar problems? Ugh I want a muffin lol Sorry but the wellness dr has me fasting to help with my blood sugar. He thinks that might be part of the problem too. I'm doing ok but I keep thinking of sweets! Lol

I hope you feel better soon. Moving and getting a new place ready isn't easy. I hope that it goes smoothly for you! :)

No....if there is one area that I am really good on it's the blood sugar. Except if I go too long without eating, I will get a headache but that's normal for just about everyone. My blood sugar is always low normal and doesn't vary too much so I am lucky.

We really sound alike.....including the supportive husband. That's how I manage! :D

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Gemini Experienced

Regarding your cortisone level. Have you been tested for Addison's. It is also an auto-immune disease that attacks the adrenal glands thus effecting cortisol levels throughout the body. It is usually overlooked as a normal thing to test for. My husband was in the hospital for 10 days before they diagnosed him with a simple blood test. He was close to dying by that point and now his adrenals are completely destroyed. He has had to take hydrocortisone and fludricort for life.

I just want to make sure you don't have another immunity problem lurking in the shadows

I hope you will begin to feel better.

I haven't been tested for Addison's but am familiar with it. I have 4 autoimmune diseases, total, so have become quite familair with many of them. I doubt I have Addison's because I really don't have any of the symptoms, other than fatigue once in a while and that is also a symptom for all of the other ones I have.

I stopped collecting AI diseases when I went gluten-free. It's been 7 years and the ones I do have are improving and stabilized....except once in awhile I have to do a re-adjust of the thyroid meds. That's pretty common for Hashi's.

The threat to my health at present comes from the financial sector. My God, they make you jump through hoops to get money right now, even if you have all the right stuff. It's driving me crazy! I don't know how younger poeple navigate through it when buying their first home. The system needs changing..... :ph34r:

Thanks for the heads up on Addison's...I will keep that in mind if my thyroid keeps giving me grief. :)

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      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
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