Unacceptable side effects of Levothyroxine

I'm not sure, as I hardly have them. Best to speak to your gp.

Hi Eve,

I was on levo for 4.5 years and came off it (with gp support) 4 weeks ago due to side effects (headaches and stiff muscles) that the doctors were saying were due to stress. After reading up the side effects I wanted to come off levo. Within days of coming off I feel lots better and the side effects have all gone, I am on the marina coil and the docs said my lack of periods were due to that, my periods are back and had a show only two days after coming off levo, but having a full period now approx 4 weeks on. So yes levo can effect periods as your condition and medication effect all your glands and therefore hormones. I'm 44 and mum and sis were early menopause so I thought levo and potentially early meno were causing me not to have period. Talk to your GP if you are concerned about any side effects, I had to dig my heals in to find a doc that supported me to come off levo (I was borderline under active 4.5 years ago) I am managing with diet and thyroid supplements and doing great. Good luck

*i thought coil (not levo) and maybe early meno were causing lack of periods

Low thyroid hormones cause problems with periods. It's worth getting a blood test to check your thyroid levels. There are two possible causes from a hypothyroidism viewpoint. Firstly, your T4 level us too low. Secondly, your body is having a orivlen converting from T4 to T3.

Get T4 and T3 tested if you can. Note, if your body has problems converting from T4 to T3, you will still get hypothyroidism symptoms despite your TSH and T4 results being in range. Ask for a printout of the results. Look to see if T3 and T4 are at the same point in their respective ranges, e.g. both in the middle. If they are, that's fine. If T4 is higher, and T3 is lower, in their respective ranges, this indicates that your body is having problems converting from T4 to T3. When you get your blood test, see if you can also have iron and ferritin tested. Ferritin needs to be 70+ to be able to absorb thyroxine.

I'm really glad coming off thyroxine has worked for you. The important thing o note here is that you were only borderline to start with, so managed to stop the progression to full blown hypothyroidism. For those people that have already progressed to hypothyroidism, coming off thyroid hormones completely is not an option, so the best thing to do here is to a with to Natural Desiccated Thyroid (NDT). To avoid side effects pick one without fillers e.g. WP Thyroid - porcine - (obtainable by prescription), or ThyroGold - bovine - (obtainable without prescription). I went the ThyroGold route in June 2015 and have felt much better ever since.

Hello Eve, I've experience two weeks on, two weeks off, or similar when my thyroid levels are dangerously low. The levo didn't really work for me because the side effects were horrible and it didn't solve most of the hypothyroid symptoms. 

Although, with higher doses of thyroid meds, periods lightened. Still they were never right.

Its important to understand that thyroid medication suppresses both the thyroid and the pituitary. To think that only the pituitary's TSH production is suppressed with other other effect on the pituitary, is impossible. So you're going to get some wonky stuff with extreme low thyroid and with high doses of meds. 

Oh! For those who want to know my progress on the amino acid therapy, I've tapered way back and am feeling better than I have in a long time. I noticed my hair around the hairline is growing back and I have a lovely strip of inch long new hair regrow th around my hairline. Yay! Anyone else try anything? Let me know. 

Hello MrsPeach, yes, yes, yes! Great info to hear your story. I also have dealt with thyroid disease all my life. In my 20's I was undiagnosed hypothyroid due to exposure to bromine. Full on hypo symptoms and double periods, elevated TSH.  After several years of detoxing, things normalized out and with effort on general health, the thyroid disease went into remission except for the large cyst on my thyroid that was noticed a few years following the exposure. With the healthy lifestyle and remission, I enjoyed ten years of blissful thinness, though with effort. 

When my thyroid disease returned, the first thing that happened was the double periods and excessive bleeding. I was older, so they kept sending me to gynocology. I had a couple of tiny uterine polyps removed, and that helped, but really, all my blood work showed pre peri menopausal... Until I went on NDT and all the hormones went back to normal, more quickly because I used acupuncture. I knew the cycle patterns were exactly the same wonky as when I was in my twenties, so I knew it wasn't due to age, but some other factor. This was super important because often, you'll have changes in your cycle before anything else. Nature's protection mechanism is to shut down unnecessary functions to preserve the most important. Shut down reproduction to preserve metabolism (thyroid function) of basic body functions. Get it?

i also remember my mother going through " menopause" at an early age shortly after her last birth. My recollection is that is was not like any other menopause I've seen in women through the years. My mother was diagnosed with thyroid disease and goiter, but there was no treatment. I believe my mother's early and somewhat abnormal menopause was brought on by untreated severe hypothyroid disease. They didn't have as many choices back then and the typical way of treating house wives was with Valium. 

hi Catherine

It's bizzare how complex thyroid issues are, glad your getting better. I'm just struggling with lack of weight loss and having constipation at the minute. But energy levels are back and now my thyroid support supplements are running out I'm moving to the supplement recommended by my reflexologist as it seems to have better kelp levels and only one tablet matches the dose of two of the ones I was taking before so it will be more cost effective, the nutritional therapist has been really helpful on the phone. I'm also having a weekly reflexology for 7 weeks, she also has underactive thyroid and managing the natural way. She is consentrating on all my glands and digestive system. My grandmother had under active thyroid but my mum and sister have escaped it.

I'm back at the doctors for my first blood test after coming off levo in a week or so time so I'm keen to see the results, I'm going to ask for all my previous blood test results too so I can try and make head and tail of my history and condition.

Good luck and keep up the natural way xx

Hi Barbara,

I hope your keeping well,

From your experience how do people tend to get on with the prescription NDT WP thyroid ? I'm going to discuss this with my doctor when I'm back in a few weeks when my blood results are discussed since coming off levo.

Xx

Hi. MrsPeach, I've also found the quality of the kelp makes a difference. You really do have to go with a reliable company that does radiation testing. The reflexology should be great. I've use acupuncture to help get and keep my system on track.

Thank you

thsnk you so much

Hi mrspeach, NHS endocrinologists aren't allowed to prescribe WP Thyroid, so you'll need to find a private endocrinologist who will. I tried it but swelled up after taking a quarter grain, which is why I'm on ThyroGold.

Many people do well on WP Thyroid. One thing to bear in mind is that it's porcine based, so has a higher ratio of T3 to T4 than the bovine one. Even the bovine one has a higher ratio than that of humans.

I agree with Barbara. There are problems with the porcine NDTs. Still way better than the levo. The high T3 in porcine formulas can be hard on older folks because it can aggrivste heart conditions. So keep in mind, as you get older, docs won't prescribe the NDTs, especially if there's any sort of heart issue. Unfortunately, heart problems are often paired with hypothyroid disease.

Also, I tried the NDTs and they kept changing the formulations, which was really bad for me. I'm in the US and the WP I most recently used seemed like it also contained levo. The unfortunate thing is that there is no difference in pharmaceutical names for the  synthetic and natural T4. Regardless of the brand name or source, the pharmacy labels show the T4 ingredient as levothyroxin. I found this disturbing because it makes it so there really isn't any way to know what you're getting.

The bovine naturals have lower T3. Closer T3/T4 ratios to human, so they're a little easier on the body. 

I've head coil causes heavy periods.

I've got a mirena coil and it lightened my periods considerably for 5 years. The coil reached the end of its life and was replaced. The next one gave me no periods at all for 4.5 years, then I had a period and the doctors concluded it had failed 6 montha early. It was replaced and I had no periods for 12 months, then for an extremely light period (aka spotting) for 3 weeks. Then no periods for past 2 months. The spotting coincided with too low levels of thyroid hormone. So my experience is that coil doesn't cause heavy periods. However we are all different. Two things to check. Firstly are your thyroid levels OK (been the T3 and T4. Secondly, is the coil fitted correctly, or has it slipped out of position?

Should have read 'both T3 and T4', not 'been'

Hi Catherine/Barbara

I hope your keeping well, you might remember me I've been off levo since early Feb, I've just been on supplements and been doing ok apart from weight gain and low energy. I've just got blood results back ......

Free T4 is 7.3, TSH is 52.9 these are the only tests my gp did and they want me to go back on levo but I've said no and I've been referred to endo in may. I got my last blood test result from my doctor which was while I was on levo back in October these are...TSH 5.2, free T4 18.1, free T3 4.0. After these tests the doc said medication level I was on was ok and satisfactory.

I've been reading what the above means and both sets of results I interperate as high! Have I got it right?

I got really good relief of symptoms with the essential amino acids and extra phenylalanine. Try them!

Hi Mrspeach, nice to hear from you. When your TSH is high it's asking your thyroid to produce more thyroid hormones (hence its name Thyroid Stimulating Hormone). High for my lab is above 4.9. (Range is 0.4-4.9). As you can see your TSH is way too high at 52.9. Your thyroid is not responding to the requests by the TSH for more thyroid hormone. This is verified by your free T4 (one of the thyroid hormones) being too low (my lab's range is 9-19). This means that you have HYPOthyroidism. You, like me, are definitely not one of the people who can get by without supplementing with thyroid hormone.

Providing your body can convert the thyroxine T4 to T3 you will be fine on levothyroxine tablets EXCEPT if, like me, you are allergic/intolerant to the fillers. In which case there is a liquid thyroxine you can take. One variety of liquid thyroxine also made me swell up. TEVA was OK.

If you, like me, are one of the 15% of people who can't convert T4 to T3, you will need to supplement with T4 (thyrixine) and T3 (liothyrone), OR take a natural dessicated thyroid. The way to find out is to get tested for T3 as well as T4. In the meantime I would strongly urge you to heed your doctors advice and start taking thyroid hormones again. I am experiencing a number of automune problems and suspect it is because my hypothyroidism was sub-optimally treated for many years (with only T4, as we didn't know I don't convert T4 to T3 very well).

I can't remember, but I suspect you stopped taking thyroxine because of the side effects, in which case make a list of them and tell your doctor 'this is why I came off thyroxine'. I need an alternative, can I try liquid thyroxiine?

If you are not in the UK and can get NDT, great. If you are in the UK, your choices are to see a private endocrinologist and get a private prescription, or do what I do, and buy ThyroGold yourself.

By the way, your set of blood test results when on thyroxine re confusing to me, but this might be because your lab's ranges are different to mine. If your lab's ranges are the same as my lab's, the your TSH is above the range at 5.2 (suggesting under-medicated with thyroxine), yet your T4 is near the top of the range at 18.1 (suggesting the dose of thyroxine is definitely enough) - confusing. A visit to the endo is a good idea. Ask them to explain. One thought, my labs range for free T3 is 2.6-5.7. Thus with your T4 near the top of the range, I would gave expected your T3 to also to have been near the top of its range. Conclusion: maybe you too are one of the people who doesn't convert T4 to T3 very well. I've just calculated that your T4 is at 90% of its range, whilst your T3 is at 54% of its range. I would have expected them to both be at about the same point in their respective ranges. To me, this suggests you don't convert T4 to T3 very well. Again, worth asking your endo. Is the endo going to do any scans of your thyroid?

By the way, weight gain and low energy are two of the main symptoms if hypothyroidism! So both your symptoms and your lab results suggest you need medicating with thyroid hormone. I've read that being under-medicated with thyroid hormone causes premature aging of one's body. This is certainly true of me -

I've got a number of medical conditions I shouldn't have got for another 20 years. Hope I've explained this OK. I'd be interested to know what the endo says. All the best.

MrsPeach, please pm me, as your comment was deleted.

Hi Barbara and Catherine, finely been to see the NHS endo... as suspected she can't prescribe me anything NDT so I need to find a private one, I live on the Sheffield border and found a couple not too far so going to ring them up today. nhs endo is also testing me to see if I'm in menopause (I'm 44, mum and sis were my age) I've had quite a few symptoms and obviously similar to hypo symptoms. Hope your all keeping well xx

Hi, heads up: WP Thyroid is the porcine prescription NDT that has the fewest fillers. I couldn't find a bovine prescription one. Bovine has a T3/T4 ratio closer to that of humans. However with my inability to convert T4 to T3 correctly, porcine one would have been fine - problem is, I reacted to WP Thyroid (I seem to have an intolerance to pork) so I ended up on a bovine non-prescription one. Even though endos tend to prescribe the full dose, remember to start low and build it up over a number of weeks so that your body has chance to adjust. Nothing about hypothyroidism happens quickly. Blood tests take 6-12 weeks to reflect your actual tissue levels after changing dose. I think it took me about 8 weeks to build up to the correct dose.

Hi Barbara,

I've got a appointment next Thursday with a private endo (£240 for a 40 min appointment) it just seems bonkers and expensive just to get a prescription that I'm going to also pay for. I've put on a lot of weight since Feb and zero energy most days. I definitely want to go on a NDT and accept it might take a few months to see an improvement. Please can you send me the links about NDT myself on line, online ordering makes me nervous but thinking a private endo might not be needed? X

Hi, I've pm'd you. It is possible to self medicate. I've done it. Although my NHS GP is running blood tests for me, it is possible to get them done via a clinic via online.

Hi barbara iv seen my endocrnologist and i havnt got auto immune i do convert t4 into t3 im on liquid levothyroxine 125 mg now iv just found out if its not auto immune its nutrient defficient hypothroidism

Also im feeling very low mood im determined i dont want anti depressants i would like to try ashwagondha ? does any one else no about taking ashwagondha whilst on levothyroxin

Also it makes sence to me now as i developed hypothroidism after the birth off my daughter so my resources were low & had my docter done there job properly checked my antibodies i woulnt of needed medication!!!

Hi Jayne, I have tried herbal blends with ashwaganda and have found them helpful, though I've mostly taken on a short term basis both with and without meds.

I tried the ashwaganda herb blends prior to the meds and found them helpful on a temporary basis. My feeling is that they will help get the system back on track, but cannot reverse thyroid disease alone.

 

Hi Jayne, that's interesting. Which country are you in? Some countries have a deficiency of iodine in the soil and the crops that are grown in it do too. It's unusual in the UK.

Beware though, endos can be mistaken. One of mine said I didn't have a problem converting T4 to T3 because both results were in range - he was ignoring the fact that my T4 was at the top of its range and T3 was middle of its range (one would expect them to both be at about the same place in their respective ranges). Conclusive proof came when I stopped taking levothyroxine (T4) for 10 days prior to switching to NDT and had a blood test at the end of the 10 days - my T4 was in range (about middle) but my T3 was below its range. As there was enough T4 available to convert to T3, the T3 result should also have been in range.

Also it's common to develop hypothyroidism at times when one's hormones are going through changes i.e. puberty, pregnancy, menopause. Try eating foods rich in iodine. Also one's thyroid needs 200mcg selenium a day to work properly and your ferritin level needs to be 70+ to process thyroxine properly. If you decide to take an iodine supplement, make sure you don't take more than the specified amount as excess iodine is toxic to the thyroid.

Have you had your vitamins and minerals checked? Ferritn (needs to be more than 70), folate iron, vitamin B12, vitamin D,