Levothyroxine prescribed- How long did it take for you to feel better and what did you notice first?

bametels

Had a bout of thyroiditis 15 years ago and was warned that I was at risk of permanent hypothyroidism later in life. Well as my doctor put it yesterday, my thryroid has basically "crapped out." LOL She has started me on a "baby dose" of levothyroxine (50 mcg) to start and wants me to see her again in 6 weeks. She wants to get my TSH to 2.0 or lower, and will monitor my symptoms rather than strictly the numbers to drive how high a dose I take.

I wondering how long it took for you start to feel better and what you noticed first?

Also, wondering whether you've found a difference between taking this drug in the a.m. (as normally prescribed) or at night (which recent studies are suggesting is beneficial). She has me taking it at night.

Thanks in advance for your insights.

editorgrrl

Synthroid should be taken on an empty stomach (2 hours after eating, and 4 hours after taking any supplements) with a full glass of water. Wait 30–60 minutes before eating or drinking anything but water. Morning or night is entirely a matter of personal preference.

It took two years of ever-increasing doses before my thyroid levels ever entered the "normal" range, but I can't remember when I started feeling better. And I'm sure it's different for everyone.

T1DCarnivoreRunner

I never felt like I had a problem with my thyroid, but blood tests showed Hashimoto's. I get regular testing since I have type 1 diabetes and am at high risk for Hashi's. I've been on levothyroxine for more than a decade and can't say there is a specific time when I felt better or worse as a result of thyroid medication.

editorgrrl

I have Hashi's, and thyroid meds (Synthroid & Cytomel) changed my life. But the brain fog was so bad I can't remember when I started to feel better.

My symptoms included goiter, brain fog, fatigue, depression, anxiety, tremor, palpitations, weight loss, weight gain, sweating, chills, diarrhea, constipation…

Synthroid has had zero impact on my goiter or my weight. I still kept gaining until I learned to log everything I eat & drink accurately & honestly. Logging was a wake-up call. Logging works.

indianarose2

I felt gradually better and better almost immediately. I was severely hypo. It took a LONG while to seldom to get to optimal however. Get regular checkups. Don't let your doc put you off for more than 8 wks at a time to check on improving your levels. And it does sound like you've got a good provider so congratulations!

lindsey1979

I take NDT rather than the synthetics, but I started to feel better pretty quickly as well. It took me 2 months to get up to my full dose (130) and I started on 16.25 and increased 16.25 each week until I hit the 130 which is a good dose for me.

I started noticing differences in 2-3 weeks. But, I also started a bunch of other supps at the same time. For me, that was primarily DHEA, Vitamin D and magnesium. So I don't know if those first effects were from just the thyroid or also from eliminating the deficiencies in DHEA, Vitamin D and magnesium. By 2 months, it was a night and day difference.

The things I noticed first was the fatigue starting to life and my hands and feet weren't freezing all the time.

CSARdiver

From reviewing metabolic uptake it will take ~48hrs to 7 days for thyroid hormones to take effect where you will notice an impact. I had a total thyroidectomy after cancer diagnosis. From personal experience if I missed a dose I would feel it 5-7 days later and when I was experimenting with dosing it would take at least a week for me to notice. This is with Synthroid. I tried a generic and experienced brain fog and dizziness, so went back to the branded version with no adverse events.

I alternate daily with 175/200 mcg and take it first thing in the morning and don't drink anything for at least 30 mins.

bametels

Thanks everyone for your responses. It's encouraging to know that I could be feeling some improvement fairly quickly.

Lindsey1979 mentions supplements. Are other folks taking supplements too? If so, what have you found to be helpful? I was diagnosed with a Vitamin D deficiency last year so I've been taking a supplement for about a year and a half. I'm back in the normal range but can't attribute any improvements in my health to this. Although, if I wasn't taking it perhaps I would feel worse now.

CSARdiver mentions problems with a generic. Did anyone else experience this? I'm trying to stop brain fog, dizziness, and a myriad of other problems ... don't want meds that create more

My doc said if the levothyroxine doesn't work or if it causes problems we could try Synthroid but she is trying to be budget conscious. It's been a frustrating and expensive journey (as it was when I initially had the thyroiditis) to get a proper diagnosis and treatment.

Editorgrrl - I agree with you on logging. I've lost 50 lbs. and maintained it for a year by eating more healthfully, increasing exercise, and logging. In the past few months, I suddenly started putting on a few pounds which seems to be primarily, if not all, water weight. I wake up with a puffy face every day, my lower legs and ankles are puffy, etc. Never had this problem until recently. My doc says it's a hypo symptom and the meds should help. I'm not expecting any miracle weight loss to occur by taking this medication.

Thanks again.

editorgrrl

bametels wrote: »

@Lindsey1979 mentions supplements. Are other folks taking supplements too? If so, what have you found to be helpful? I was diagnosed with a Vitamin D deficiency last year so I've been taking a supplement for about a year and a half.

After blood tests, I started taking iron, vitamin B12, and vitamin D. I also take calcium & a multivitamin.

bametels

One more thing - Would love to have some MFP friends dealing with thyroid issues. Let me know if you would welcome a friend request!

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bametels

Thanks vinegar-husbands. I would never have thought about coupons for prescriptions. I'm a doctoral student so I need to check out what it would cost at the University pharmacy. I think I can get medicine pretty inexpensively there.

FitPhillygirl

I've been on Synthroid since my early 20's so I really don't remember when I started feeling better. However, I believe it would have been when my blood tests were back in the normal range again.

FitPhillygirl

vinegar_husbands wrote: »

bametels wrote: »

My doc said if the levothyroxine doesn't work or if it causes problems we could try Synthroid but she is trying to be budget conscious. It's been a frustrating and expensive journey (as it was when I initially had the thyroiditis) to get a proper diagnosis and treatment.

Most people (that I know of) with thyroid problems find that generic levo is far less effective than Synthroid. If generic levo doesn't work for you, I'd recommend asking your doctor for coupons. My past GP received tons of coupons from pharma reps.

This was definitely the case for me as well. My levels on the generic brand were never as high as they are on Brand name Synthroid. So for a number of years now, I just pay the higher co-pay and get my Doctor to write Brand name necessary on the prescription for Synthroid.

toadqueen

I was on Synthroid, 25mg in 2012 for a couple of months - I gained weight and did not feel any better. I started on the generic, levothyroxine, same dosage with no physical effect but my TSH, T4, and prolactin levels improved. I recently started Cytomel 5mg in addition for very low T3 and have not seen any physical effects. I go next month for a follow-up with my new doctor and am eager to see the lab work. She also prescribes Armour, but I tried that also in 2012 following the Synthroid and gained more weight. There were likely other factors involved back in 2012.

I've only taken these medications in the morning.

bametels

Eileen_S and toadqueen - Thanks for your responses. The more I read and the more responses I receive, it seems (not too surprisingly) that our bodies all react differently. I think this is going to be a journey and will take some trial and error to find out what works best for me. I'm grateful that my doctor seems open to various options, which does not seem to be the case for my other people dealing with this.

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gaelicstorm26

I was diagnosed with Hashi's when I was 11 (I'm now 33). I've been on thyroid medication for a LONG time already. I started out at 25 mcg and now take 150 mcg. Over time my thyroid function has decreased.

It can take some time for your levels to come down depending upon where you started. I was taking 112 mcg for a bit and a blood test showed that my TSH was 28. I took 125 mcg for a bit which got it down to 13. I'll have another blood test in a few weeks to see how the 150 mcg is working.

As for feeling better, well, I've lived with this for most of my life and I don't really remember feeling any differently. For me, this is a good as it gets! I can usually predict when I need a med adjustment by my hair loss and dry skin, which you might not notice if you aren't diagnosed with Hashis.

bametels

Thanks, gaelicstorm26. I didn't realize that children as young as 11 can have Hashimoto's Disease. Sorry you have been dealing with this for so long. I don't have Hashimoto's Disease. I had thyroiditis about 15 years ago. The thyroiditis caused severe hyperthyroidism which damaged my thyroid and caused severe hypothroidism. My thyroid improved but I was warned that I was at risk for permanent hypothyroidism later in life. Well - now it's happened. Tonight I found a very comprehensive article on hypothyroidism published by the Univ of Maryland. It includes information about when you can expect various symptoms to improve. For those interested here's the web address:
http://umm.edu/health/medical/reports/articles/hypothyroidism

Fuzzipeg

This link is interesting, thank you.

I understand the difference between naturally occurring hypothyroidism from dietary issues or related gland mis-functioning and Hashimoto's Thyroiditis is the existence or not of antibodies, when for some reason your own cells attack those of your thyroid. Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication. For some the use of selenium and other supplements will also reduce the antibody levels sometimes substantially.

There can be many different causes of the initial inflammation which started the first attack on the thyroid. Unfortunately many people are un-diagnosed or under or incorrectly treated. Fortunately so much more is being learned by medics with open minds to what is going on within people with thyroid and associated issues. A great problem lies in that the majority of medical professionals national and internationally fail to recognise these developments and the part our genetics, diet, internal systems and environment can have on our lives and thyroids and treat accordingly.

Everyone's experience of Thyroid problems will be very different because the thyroid is pivotal to so many of our body's systems that our personal areas of strain will show a different range of symptoms often not standard ones. Here on this group we have the opportunity to read what helps others and set their news against what we know of ourselves, giving us something to think about and apply if it seems appropriate.

Some times we need to grasp our own straws before we find the cause of most of our health problems. I no longer take what any doctor says as "Law" my health comes first. This comes from many years of medical disregard of my symptoms.

T1DCarnivoreRunner

Fuzzipeg wrote: »

Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication.

I'm not sure how medication is going to reduce antibodies unless you are taking imune suppressants, which you would have to take forever... and that is very high risk because exposure to other viruses and bacteria will be more likely to harm you.

As far as the cause of Hashi's, it is 2 things (you must have both):
-Problems with the HLA genes on chromosome 6
-Trigger for the autoimmune response

You cannot change your DNA... you are born with SNP's that your biological parents passed down to you. It sucks, but that's the hand you were dealt.

You cannot go back in time and stop the trigger for an autoimmune response. Time travel is not available.

Botom line: Once your immune system starts treating cells in your thyroid as a foreign substance that must be attacked, it will always see them that way. Our immune systems are not advanced enough to declare cease fires and stop attacking cells that it thinks need to be removed. The only way that outside substances have been able to get past our immune systems for a little while is by disguising themselves. This is why the influenza virus has mutated so many times.

bametels

Midwesterner85 - I don't have Hashi's but still interested in learning... what does SNP stand for?

gaelicstorm26

Yes, mine is autoimmune and medication has not changed the fact that I test positive for antibodies with every blood test. Unfortunately, one autoimmune disease can lead to others, and I have recently been diagnosed with Vitiligo (your body attack the melanin in your skin). Fortunately, when caught early, topical steroids can help stimulate pigment regrowth. I'm also monitored closely for developing lupus, as I have begun to show allergic reactions to sun exposure.

My endocrinologist's best guess for my trigger was that I had mono about 3 years before being diagnosed with Hashi's, and that if this was caused by the Epstein-Barr virus, it could have triggered the Hashi's. I was sort of accidentally diagnosed, actually! And yes, 11 is not a usual age for diagnosis. Diagnosis usually occurs much later in life, during the middle-age years.

I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.

editorgrrl

gaelicstorm26 wrote: »

I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.

Surgery & radiation have inherent risks, so it makes sense to me that we take meds until the highs & lows of Hashimoto's are unbearable.

gaelicstorm26

Yes, mine is autoimmune and medication has not changed the fact that I test positive for antibodies with every blood test. Unfortunately, one autoimmune disease can lead to others, and I have recently been diagnosed with Vitiligo (your body attack the melanin in your skin). Fortunately, when caught early, topical steroids can help stimulate pigment regrowth. I'm also monitored closely for developing lupus, as I have begun to show allergic reactions to sun exposure.

My endocrinologist's best guess for my trigger was that I had mono about 3 years before being diagnosed with Hashi's, and that if this was caused by the Epstein-Barr virus, it could have triggered the Hashi's. I was sort of accidentally diagnosed, actually! And yes, 11 is not a usual age for diagnosis. Diagnosis usually occurs much later in life, during the middle-age years.

I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.

T1DCarnivoreRunner

bametels wrote: »

Midwesterner85 - I don't have Hashi's but still interested in learning... what does SNP stand for?

Single nucleotide-polymorphism

bametels

Thank you, midwesterner85. I looked it up.

FitPhillygirl

bametels wrote: »

Eileen_S and toadqueen - Thanks for your responses. The more I read and the more responses I receive, it seems (not too surprisingly) that our bodies all react differently. I think this is going to be a journey and will take some trial and error to find out what works best for me. I'm grateful that my doctor seems open to various options, which does not seem to be the case for my other people dealing with this.

This is so true about how people's bodies respond differently to medications. It may take a while, but hang in there because eventually you and your doctor will find one that works best and you'll begin to feel better again.

gaelicstorm26

editorgrrl wrote: »

gaelicstorm26 wrote: »

I have often wondered if a good course of treatment for those with Hashi's would be complete removal of the thyroid. Given that we are already on thyroid replacement, an increased but possible steady dose as opposed to the roller-coaster dosing that Hashi's can create might create a better health picture.

Surgery & radiation have inherent risks, so it makes sense to me that we take meds until the highs & lows of Hashimoto's are unbearable.

I suppose that's true. Too bad there isn't more that they can do. It's so crazy that I can have a normal test and 6 months later test and get a 28. It would be nice to be somewhat steady!

bametels

Four days on levothroxine and I'm seeing changes - hoping it's not the placebo effect - but I don't think so. By end of day 1, I noticed changes in my skin color. I have very pale skin but for a while, I have looked like "death warmed over." Now I actually have some color in my skin. My heart rate and blood pressure have come up a bit (they have been very low) so I'm guessing it's due to better circulation. Waking up early - My dog has not had to rouse me out of bed to take her out. I've been waking up before 7:00 a.m. without an alarm clock. My skin has been terrible for a long, long time - so dry and scaly. Noticeable change in feel and appearance (although still a long way to go). Muscle changes - tight muscles are relaxing. Most noticeable is some relaxation in a persistent knot in my neck/upper shoulder that has caused so much pain and tight jaw and forehead muscles that have caused terrible headaches. The muscle tightness and headaches remain but are significantly diminished. I'm less 'puffy' and have lost 3 pounds in 4 days - clearly, it's water weight. So, I'm feeling hopeful! The only negative so far is that taking the med before bed seems to be causing some reflux so I'm going to try to take it earlier in the evening. Thanks again to all of you for your insights.

gaelicstorm26

I'm glad you're feeling better! If I remember correctly, it takes about 4 weeks for the dosage to show up in your serum and be reflected on labwork. I think we are all so different with medication. What works for one doesn't work for another!