Restless Legs Syndrome (RLS) Discussion Board

Ask:
1. Anyone here take levothyroxine? If so, do you take it in the morning as instructed or have you played with timing?

2. Anyone have access to medical journals? If so, can you get to this study - I can only see the abstract. I am wondering what the instructions to the participants were regarding eating when they took their doses. https://www.ncbi.nlm.nih.gov/pubmed/21149757

Background:
My sister has been taking thyroid replacement for about 20 and has told me that repeatedly that I should be tested. I have been and up until recently, have always been fine. I noticed that my TSH value kept rising over the years (15 years ago 1.5, then 2.5 and then 4) and since my last test two or three years ago, now is 5.5. The reference value is .5-4.7 (at the lab my doc uses), so the doc put my on Synthroid, aka levothyroxine.

When my sister was diagnosed, I read a book by a doctor who said that patients with symptoms who tested in the OK range always eventually ended up out of range, but it could take up to 20 years. She was one of the doctors who believed you should treat based on symptoms, not on the test value.

So, 15 years after having many of the symptoms - dry skin, brain fog, hair falling out (my husband jokes about how we could make a hair blanket), tiredness, and other symptoms, here I am with my first bottle of levothroxine and wondering what will happen, if it will help, if it was part of why I am so tired, and other things, such as how to best take the drug.

I am hoping this helps...but also doubtful. I keep looking for anything to make me less foggy, wake up at some point during the day, and feel like a normal person again.

Ann, I emailed you a copy of the text of the paper.

I took levothyroxine for about 2 yrs and quit when I was starting to become hyper and was rapidly losing weight (which I cannot afford to do since my BMI is less than 19) even though I was eating four full meals each day with double desserts and still felt like I was starving. My doctors have keep rerunning my thyroid tests, which all keep coming back in the normal range. I keep telling them that I refuse to go back on it even if my thyroid numbers say that I need it. The constant hunger, hyperactivity, and the anxiety issues above and beyond those from RLS were just not worth it. Plus, if I lose any more weight, I will start to look like a third world refugee and it will become impossible to buy new clothes.

I was originally put on levothyroxine due to the symptoms and a borderline TSH. The symptoms were hair loss (my maternal grandfather had NO hair and my mother's hair was thin), dry skin (I live in the desert, so no surprise there), brain fog (aka RLS sleep deprivation), etc.

If you take levothyroxine, remember that it should be taking on an empty stomach and it CANNOT be taken at the same time as an iron supplement.

Ann, I take levothyroxine for mild hypothyroidism, I have a slightly elevated TSH when off the medication of approximately 5. Playing with the timing of the medication is not going to make any significant difference as it takes several days for one dose to exert its effect. The main point that Steve pointed out is be sure not to take it along with iron tablets. It's generally recommended that it be taken on an empty stomach but that is not so important as taking it consistently. The likelihood that you will notice any significant difference with a slightly elevated TSH is fairly low. It's a lot more likely that your low energy is due to your RLS.

Most of the symptoms listed for hypothyroidism are usually noticeable only if the tsh is significantly above 10 before treatment.

I have been on Synthroid since 2004 when I had my thyroid removed due to cancer. I take it in the morning on an empty stomach and wait from 1/2 to 1 hour before eating. I am not given the optimum dose because too much could cause any cancer cells that would be left to grow. I have always had low energy since the surgery and that when RLS is added it is worse.

Thank you all.

Yeah, I figure it's unlikely it's the thyroid...but I'll take ANY improvement, lol, real of imagined. My sister and a friend both swear that synthetic hormone is pointless and they only felt better when they switched to Armour.

I'd read about iron, grapefruit, calcium, and a few other substances blocking absorption. One study even showed coffee to inhibit it. When I read that, I was not a happy person as I am not sure I could do anything without coffee!

The study above was interesting because it showed better levels of some related things when taken at night instead of in the morning.

ViewsAskew wrote:
Ann wrote

I'd read about iron, grapefruit, calcium, and a few other substances blocking absorption. One study even showed coffee to inhibit it. When I read that, I was not a happy person as I am not sure I could do anything without coffee!...

Ann, this is why I emphasized consistency rather than the importance of taking the thyroid on an empty stomach. It is true that several foods change the absorption, but if you have the same foods every morning when you take the thyroid hormone, when your doctor subsequently does the TSH test the doctor will adjust the dose of thyroid hormone to reflect the differences in absorption. No drug is 100% absorbed anyway. So you can drink your coffee and take your thyroid hormone at the same time and the doctor will make the appropriate adjustment. The main point is to make sure that you drink the coffee every morning rather than just intermittently and you take the thyroid tablet at the same time.

The reason doctors routinely treat mild low thyroid conditions is that it is extremely easy to treat with levothyroxine, inexpensive, and some people will have improved energy and decrease symptoms even with mild hypothyroidism. There are innumerable causes of low energy, dry skin, hair loss, Etc, but none are as easy to treat as low thyroid. So even though doctors recognize that quite a number of their patients with some of these symptoms and mild hypothyroidism will not improve, the simplest thing to treat is the thyroid condition.

Synthroid medication is definitely effective, so I disagree that it is pointless. I have no thyroid and wouldn't be functioning much less alive if it wasn't. The consistency angle is a good one. I usually drink a cup of coffee after taking my Synthroid in the morning. When I first went on this med I wasn't given any instruction as to how to take it. Honestly, I don't feel any differently now when I pay attention to the empty stomach direction than when I just took it in the morning whether or not I had eaten. I really like these discussions because I learn so much.

I take it, in fact just recently had to I increase my dose. Hope it helps.

It is relatively common - wasn't expecting so many regulars to chime in, though!

I have no thyroid or parathyroids. The thyroid was removed due to goiter. There was a two per cent chance of the parathyroids being damaged and they were. They regulate the uptake of calcium so I take a large dose of calcium and vitamin D twice a day. They are taken with food. Iron is taken without food as is the levothyroxine which I take around 1:30 in the morning. That's no problem because I am up and down all night. When I started taking iron my levothyroxine had to be reduced. I had a blood test yesterday but haven't heard the results. It's a real balancing act.

Yankiwi wrote:I have no thyroid or parathyroids. The thyroid was removed due to goiter. There was a two per cent chance of the parathyroids being damaged and they were. They regulate the uptake of calcium so I take a large dose of calcium and vitamin D twice a day. They are taken with food. Iron is taken without food as is the levothyroxine which I take around 1:30 in the morning. That's no problem because I am up and down all night. When I started taking iron my levothyroxine had to be reduced. I had a blood test yesterday but haven't heard the results. It's a real balancing act.

I can imagine it is quite the balancing act!

I was put on thyroid medication (levothyroxine & liothyronine) many years ago and I thought it would solve all my health problems but it didn’t. My numbers got into the acceptable ranges and I still felt crummy (anxiety, daytime fatigue, weight gain, hair loss, etc) but my doctor (considered one of the best endocrinologists in the city) told me it wasn’t my thyroid causing these symptoms because my numbers were perfect. Some doctors believe only in the numbers and others believe only in symptoms, with others in between. My RLS started later, after starting hypothyroidism treatment. I recently decided to mess with things and see if I could feel better, so I’ve come off the thyroid medications completely and instead am on daily Low Dose Naltrexone (LDN), OTC ThyroidScript by Suzy Cohen, and a big Brazil nut for selenium. My plan is to see if I can feel better and affect my thyroid numbers over a few months time. It’s preliminary but I feel better overall.

I’ve spoken to many doctors about timing of thyroid medication and I’ve been told to take on an empty stomach before getting out of bed, then wait anywhere from 30 minutes to 1 hour before eating. No iron supplements for 4 hours. And the endocrinologist said it’s mostly about your body having daily consistency so take it around the same time every day and eat/drink at the same time after the medication. In the beginning, test every 3 weeks until you level out. I’ve been told that most patients feel best with their TSH near 1, either higher or lower.

If you haven’t already, consider testing for Hashimotos on your next blood test, by testing for thyroid antibodies. It’s a form of hypothyroidism that really needs extra care. My husband has it and has battled brain fog and exhaustion for years before we realized that just taking the thyroid medication wasn’t enough. So he went on LDN, Zoloft, OTC HashiScript by Suzy Cohen, and a strictly gluten free diet. The change in him has been remarkable. He also has cut back on sugar as he needs less of it to get through the day, coffee changed out to black teas, and light-moderate exercise a few days a week for stress reduction. Some doctors believe that all hypothyroidism starts with Hashimotos and some people are able to work through it like a phase while others get stuck in it.

If you’re looking for more info on different approaches to thyroid treatment, here are some resources I’ve found useful.

https://thyroidpharmacist.com/

https://stopthethyroidmadness.com/

P.S. Sorry this is so long, but, Ann, you’ve been so helpful to all of us here on the board and I wanted to share everything I could. Actually, for me, this is kind of short.

Yawny - thanks ever so much!