Levo side effects - is there a better medicine?

I have recently been diagnosed with hypo and hashi's. On October 1st I started 50mcgs of levo. I've also stopped gluten, dairy, and soya. I used to have occasional headaches, but now have a headache or migraine nearly every day, hardly sleep despite being exhausted, hair is starting to fall out, skin is very dry, and am constipated. All new symptoms.

I understand it can take time for the body to get used to being on medication. Is there a better medication to be on or is this all normal?

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  • It's highly individual. Having said that, however, I get the impression that only a minority of hypothyroid patients feel truly well on thyroxine only in the long run.

    A healthy thyroid gland makes several different hormones - T4 is the most abundant, but is also biologically inactive, and needs to be converted to T3 which is the active hormone.

    In a healthy individual, 90% of the thyroid gland output it said to be T4, and 10% T3. So the rest of the T3 the body needs comes from the conversion of T4 to T3.

    However, this conversion can be impaired for a number of reasons: adrenal fatigue, low iron levels, vitamin B12 deficiency, just to mention a few.

    I never did well on T4 alone. For me, natural desiccated thyroid (NDT) works best; maybe because it contains all the hormones a healthy thyroid gland produces. But it can be difficult to find a doctor familiar with it and willing to prescribe it.

    An alternative is to take synthetic T3 along with T4. Many seem to do very well on that.

    If you don't feel well on T4 only, not even after achieving so called "normal levels" of thyroid hormones (and that tends to put your FTs in the upper normal range), that might mean you need additional T3.

  • Thank you, anna. I have an appt with my functional medicine practitioner next week and will ask her about it. I've read a bit about it and sounds like people do well on t3 &t4 combo and read on sttm basically that it's a myth that t4 only is good. Here's the link: stopthethyroidmadness.com/o...

    Am interested to hear people's preference and experiences, thanks again anna.

  • Ps, I do have stage 2 adrenal fatigue with low cortisol and progesterone. Not taking or doing anything for that yet. Imagine the one hour of sleep a night isn't helping it much.

  • That could be a major impediment for T4 to T3 conversion...at least that is what happened to me.

    My own personal experience is that hypothyroidism is not as easily treated as many doctors seem to think. When I was diagnosed, 16 years ago, my doctor at the time told me: "Give it three to four weeks (on thyroxine), and it will be like you were never ill in the first place"...

    I have a couple of colleagues who have had a total thyroidectomy after being diagnosed with thyroid cancer, and they have had far less problems than I have (I have Hashimoto's). My theory is that they never had time to be hypothyroid for years before being put on treatment, so they never developed adrenal fatigue...a really debilitating condition IMO, and overlooked by most conventional doctors.

    Even some doctors treating adrenal fatigue seem to think you only need to be on cortisone replacement for a couple of weeks to strengthen your adrenals. I have noticed it's not that simple...I am even beginning to think that maybe I will have to remain on adrenal support for the rest of my life.

    For me, it's been a "one step forward two steps back" approach all along, and if it weren't for forums like this one, I am not sure where I'd be today...even though I am fortunate enough to see a so called Hertoghe doctor.

  • Thank you very much for your response. It's all overwhelming, not sure where to start. Makes sense that my body's so exhausted that it doesn't convert the medication properly, as I've been horribly ill for nearly three years, not thyroid related. Everything I'm trying that 'should' make me feel better backfires and makes me feel worse. Perhaps I need a stronger base of health to do well with medications and supplements. Have an appt with the doc to go over all the remaining test results and form a proper treatment plan. Any idea on where I should start?

  • I actually like Dr. Peatfields book "Your thyroid and how to keep it healthy", as it contains a lot of practical advice. I have read a lot of books about thyroid (and adrenal) health, and I have to say I find this books one of the best; comprehensive, yet user-friendly (clearly written with a patient perspective in mind, and by a UK doctor unlike most books on the subject which seem to be written by US doctors; no matter how good these books are, there is always the risk their advice is not really applicable to the situation in the UK where I assume you are). This books also covers the thyroid-adrenal connection extensively. So if I were to recommend one book, this would be it.

  • Will look for the book, thank you.

  • Two weeks on Levo may bring the setback here on page 26:

    web.archive.org/web/2010112...

    Or it may suggest adding T3-hormone. (Which is partly disputed in favor of treating ferritin: mdedge.com/clinicalendocrin... )

    (Conversion impairment may have various reasons. Ratio FT4 to FT3 too low. DIO2 mutation. Transporter mutation. Hormone receptor mutation.)

  • Very interesting extract!

  • Response edited just before your message

  • I doubt T3 will be prescribed as there may well be a good conversion from levothyroxine to T3 (liothyronine).

    Thousands seem to do well on levothyroxine. Some, most on this forum, don't.

  • “a dark shadow of doubt on the validity of the studies on the effect of T3 therapy in these patients” in mdedge.com/clinicalendocrin...

    Maybe easier to get ferritin diagnosed and prescribed and so worth a try?

  • Thank you eljii, afraid I was not able to open the first link on my phone, will try again on my computer later. I am being treated for low ferritin with ferrous fumarate, but that is new so likely has not had time to change much. The symptoms from the levo are new, not persistent, not sure if that makes a difference.

  • Thanks for the information eljii.

    I will have to print off the first one as I would like to read it in more depth. I think I will have to go T3 only. I've never really been satisfied on Levo alone and adding T3 made a lot of difference but having had extremely high cortisol levels earlier this year set me back quite a bit.

    I have good levels of iron/ferritin.

    That it the wonder of this site - you're learning all the time about your condition.

    Once again thanks.

  • You are still on a low dose of levothyroxine and an increases are incremental of 25mcg every six weeks at a time until you are well.

    The normal starting dose is 50mcg of levo with increments of 25mcg every six to eight weeks until you feel much better (I had an increase every six weeks).

    Too low a dose can rebound so I'd make an appointment earlier and follow this procedure to get the best possible result. They usually only go by the TSH and some mistakenly believe that anywhere in the range (even top) is fine but we need a TSH of 1 or lower. These are a couple of hints:-

    Levothyroxine should be taken on an empty stomach first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake of the hormones.

    It can also be taken at bedtime as long as you've last eaten about 3 hours previously.

    When you have blood tests for thyroid hormones, they should be the very earliest possible, and fasting although you can drink water. Leave about 24 hours between your last dose of levothyroxine and the test as this allows the TSH to be at its highest and that is mainly what the doctor uses to adjust hormones.

    When next test is due also ask for B12, Vit D, iron, ferritin and folate as we can be deficient which can also give us symptoms.

    Never take the words, 'normal', 'fine', o.k. with regard to results always get a print-out for your own records and post if you have a query.

  • Thank you for your reply, shaws. My doc advised to start with 25mcgs. After what I learned on here I went up to 50mcgs and have hardly slept since the increase and all the other new symptoms have started, makes me not want to continue.

    I've also been given a high dose of vit b, d, ferrous fumarate, omega, probiotic, selenium, l-glutathione, progesterone, and who knows what else. It's a lot and a bit much. The vitamin b made my brain feel like it was vibrating, vit d made the headaches worse, progesterone made the nausea worse. It's all very discouraging. I'm trying to do all that I should to feel better, but I am ending up feeling worse.

    Perhaps I need to keep it simple and start with one thing at a time and lower doses and work my way up. I've been severely ill (not thyroid related) for nearly three years and imagine my body is exhausted and likely why it doesn't know what to do with things that are supposed to help. I have an appt with my functional medicine practitioner next week and she will likely give me another list of meds and supps to take. Where do you think the best place to start would be, the most important thing so then my body can begin to heal and do what it's suppose to with the treatments?

  • It is disappointing and I know the feeling of wanting to stop. I myself had a TSH of 100 when finally diagnosed. I had more symptoms on levo when first diagnosed.

    Most of the members when they get to a certain level which allows sufficient T3 (levo is T3 only and has to convert to T3) to get into our receptor cells we can feel much better.

    It has taken years for us to slowly become hypo so it stands to reason it may take some time to recover. It's not a quick procedure unfortunately as we are dealing with hormones.

    You should take vitamins/minerals well away from levothyroxine too. I don't know if you know the following but I'll give it just in case:-

    Levothyroxine should be taken on an empty stomach first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake of the hormones.

    It can also be taken at bedtime as long as you've last eaten about 3 hours previously.

    When you have blood tests for thyroid hormones, they should be the very earliest possible, and fasting although you can drink water. Leave about 24 hours between your last dose of levothyroxine and the test as this allows the TSH to be at its highest and that is mainly what the doctor uses to adjust hormones. We need a TSH to be around 1 and if it comes 'in range' doctors think we're on sufficient but anywhere in the range doesn't apply.

    The aim is to eradicate all symptoms and one doctor said that nowadays we're given too low a dose.

  • Yes, thank you. I've been taking the levo first thing in the morning with a glass of water and waiting an hour to have anything to eat. I will do as instructed for my next blood test.

    My doc told me to stop the levo for 5 days if I have any hyper issues, which I believe I had last night, my heart was racing, so have not taken a pill today. A bit worried that I've Ben messing about with the dose since I started, but does seem that the 50mcgs is too much, but have been told people feel worse on 25. Hard to make sense of it all and know the 'right' thing to do.

  • As we're dealing with some of the most important hormones and it's taken a long time before we eventually get diagnosed, it has to be slow and gradua increase. 25mcg to 50mcg is usual.

    Did you take your pulse before you began thyroid hormones and temp as it can be a useful guide when starting hormones.

    I have a pulse/monitor which I used when I had palps and don't need it often now as am on hormones which suit me.

    I think it's unusual to have palps on a low dose,(i.e. 50mcg but you could be sensitive to fillers/binders in it) although I know that if undiagnosed you can have unusual heartbeats. So we have to take note of which make we have and after a suitable trial ask pharmacist to provide another as that one might not have the same effect.

  • I am also having the same side effects as yourself on increasing levo. I am hashis too.

    I was on 75mcg and was trying to raise to 100mcg as per dr's instructions. However, after one day on increase I became constipated and after a few more days my skin got drier and drier then hair loss. I'm also on 20mcg of T3.

    I also have adrenal issues which I am supporting with adrenal cortex. But earlier this year my cortisol levels went very over range and I had to sort that out. Now they are below range.

    It could be rT3 so I am reducing my T4 back down to 75mcg and increasing the T3 up.

    I don't know what could be causing it and am only guessing. I have no other symptoms trying to raise the T4. My recent thyroid blood levels are good.

    There is a urine test for thyroid that you can do to see how much FT4 and FT3 is in your body and I believe it shows if you are converting the T4 to T3. The test can be obtained from Genova which is on the Thyroid UK website. I'm going to try that.

    I would be very interested if you do find an answer to this problem. I haven't come across any other post besides yours and mine which has this problem.

    Please let me know if you find an answer and I will likewise.

  • Thank you mischa, that is interesting yet strangely comforting to know we're not alone in our struggles. I will let you know if I find a solution to this mess. I will also look into the Genova test. I have an appt next week with my functional medicine practitioner to go over the remaining test results. One of the tests was an Organix urine test that might be the one you mentioned, I will find out. Hope you find answers and a solution very soon and yes please let me know if you do.

  • Will do.

  • Can your function practictioner test for rT3?

  • Yes, it's been done. RT3 was 9 (8-24).

  • If you've been ill and untreated for a long time then I'm guessing your Free T4 would have been low. T4 is the raw ingredient for making T3 and Reverse T3. If you have low T4 then the chances of having high T3 or Reverse T3 are probably rather low.

    But as your Free T4 goes up with treatment then it would be worth checking what proportion of T3/Reverse T3 you are making.

    There's nothing wrong with doing a reverse T3 test. I just think it would have made more economical sense to do it a bit later in the treatment process.

  • I wouldn't worry too much about RT3. I'll give you an link and go to the date March 24, 1999. There are some false beliefs about RT3.

    web.archive.org/web/2010103...

  • Thanks for that Shaws. Really interesting. I have wondered whether RT3 really does get 'stuck' or is in the body for prolonged periods. It's really a theory and I haven't read any concrete evidence that it does. I believe there is such a thing as RT3 but how it affects the body over a long period of time - I'm not really convinced.

    Once again thanks Shaws.

  • The link I gave you was a scientific fact. The doctor was also a researcher as well as scientist.

    This is a sentence within the above link which might explain it better.

    Under normal conditions, cells continually convert about 40% of T4 to T3. They convert about 60% of T4 to reverse-T3. Hour-by-hour, conversion of T4 continues with slight shifts in the percentage of T4 converted to T3 and reverse-T3. Under normal conditions, the body eliminates reverse-T3 rapidly.

  • Thank you for that Shaws.

    I'm now of the opinion that my problem is about converting. I'm slowing decreasing the Levo and increasing the T3.

    I've already noticed a small difference in the dry skin and constipation. So I'll be guided by those symptoms.

    You are a gem Shaws!

  • Your dose of 75mcg levo plus 20mcg T3 is equal, in effect, to approx 135mcg of levo.

  • mischa i found this article about levo, side effects, and dosing. Thought I'd share in case it is useful.

    restartmed.com/levothyroxin...

  • Hi Misscshell24 - I've read through the page and its really interesting. It appears that our symptoms do not fall into the category of allergic reaction to Levo, i.e. skin rash, gut issues, nausea, diarrhea, etc. Also he says that the 50mcg pill doesn't have any fillers - well it does. The article is by an American Doctor so I suppose their 50mcg Levo pill doesn't have fillers. I have the 50mcg pill and there are several fillers in it.

    Our symptoms seem to me more and more like a conversion issue, that the T4 is just not converting into the T3 which it's supposed to do. I've noticed that as I decrease the T4 and increase the T3 the dry skin abates somewhat and so does the constipation. I don't really want to change anything but it looks like I'll have to. When I decrease my tinnitus returns with a vengeance! I'll just have to give it time. I'm decreasing very slowly.

    I do believe my problem began earlier this year when a cortisol saliva test showed I had extremely high levels of cortisol on all four samples. I was very ill for some time as the high levels pushed my FT3 levels way up high. It took some time but I did manage to bring the levels down however, too far down and now I'm propping up my adrenals with cortex. So be it. But now I'm having difficulty raising the Levo.

    To be quite honest Levo hasn't really done much for me not until I added T3 and I think it was when I added the T3 I began to get better, that is until earlier this year.

    Thank you for the information and for the other two articles you've found. I will keep searching.

  • I think the article says the 50mcgs has no dyes or color additives, but does have fillers. If that makes a difference?

    I am still very new to all of this and have a lot to learn. Was just officially diagnosed and given medications a couple weeks ago. Having an issue with conversion does seem to make sense as we both also have issues with low cortisol. I have an appt with my functional medicine practitioner this week and will ask her.

    Thanks!

  • Good luck for next week. After many years hypo I'm still learning.

  • I found a list of medications associated with under active thyroid and their user reviews. Thought it was interesting and might be useful, so wanted to post.

    List for hypothyroid medications:

    drugs.com/condition/hypothy...

    List for hashimotos medications:

    drugs.com/condition/chronic...

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