Those with experience with Levothyroxine

Hello, I've recently been diagnosed with hypothyroidism whilst having blood tests for perimenopause. The tests also showed that I have a severe vitamin D deficiency and have been prescribed 20,000 units vitamin D capsules to be taken twice a week for 7 weeks, thereafter 1000 units, once a day. I started on hrt patches (Evorel Sequi) 5 weeks ago and started taking levothyroxine 2 1/2 weeks ago. I have a few questions that I hope can be answered as this is all so new to me.Q1: I have been given Levo 25 mics and told to have blood re-tested in 10 weeks, but it says on pamphlet that usual start dose is 50 mics and blood should be re-tested every 3/4 weeks. Q2: Pamphlet also states that oestrogen (in hrt) can reduce the effects of levothyroxine, so may need an increased dose. Q3: I've read that the iodine dye used in CT scans can mess up the thyroid. Due to 4 major surgeries and serious complications after each one, I've had at least 7 or 8 CT scans in the last few years - on occasions, 2 in the space of a week. When I mentioned this could be the cause of my hypothyroidism, my GP had never heard of it! I am at such a low ebb - depressed, tired, crying all the time and having been slim all my life, have put on at least 3 stones whilst barely eating over 800 calories a day and walking at least 35 miles a week - it's so soul destroying. I think I have the double whammy of having the menopausal and hypothyroid symptoms (of which many are similar) at the same time. I can't be the only woman going through these two things at the same time. I would really appreciate some experienced advice. I've been pushing family and dear friends away. Thank you

58 Replies

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  • Hi Sam, you poor soul, I was there once. Straight away, get rid of the doctor....keep the pamphlet.

    Can you list the tests and results. It's good you are trying to raise you D level, that will help. You are right about estrogen because it also binds to the thyroglobin that carries T3 and T4. Are you having menopause symptoms or is this connected to your surgeries? We aren't doctors here and you only know if they have good reason for what they are doing.

    Without antibody tests, it's hard to say what is causing your thyroid problem because there are many different reasons. If you have antibodies, it means your thyroid is under attack and that means you have an autoimmune problem which is not the fault of your thyroid. Rarely do doctors try to find out about any of the underlying issues unless you go to a functional medicine doctor. If you're in the UK the NHS doctors don't seem to follow their own protocols. They have started you on a very low dose and you should be getting increases and tests in at least six weeks. No one stays on 25 mcgs. Normally people take between 100 and 200 mcgs. of Levo.

    Also, for your Levo to work you need to support your treatment with folate, B12 and ferritin so insist on those blood tests which you may have to supplement.

    I often post this man's videos as he explains how all the hormones are connected. You might consider progesterone cream if there is some reason not to.

  • Hi Heloise,

    Thank you so much for such a detailed reply! I will ask my gp for the detailed test results and will list them. No my menopausal symptoms (which are horrendous!) have nothing to do with my surgeries. Gosh, there's so much to take in, isn't there? I will definitely ask for folate, B12 and ferritin blood tests. I don't eat meat so may well be deficient in B12.

    Regarding progesterone cream - the hrt patches I'm on contain oestrogen and progestogen (synthetic form of progesterone).

    I am in the UK (London), and I've briefly visited the Thyroid UK site, but not it's forum. I did tell my gp (quoting from Thyroid UK) that UK guidelines state that although a TSH test may be cost effective for a wide range of clinical purposes, it may be inappropriate in patients being tested for the first time. The guidelines say that TSH & FT4 should be done when optimising thyroxine therapy in newly diagnosed patients. She said that the reason I only the TSH test was because I only had a comprehensive blood test. I originally went to my doctor's because of severe perimenopausal symptoms, I had no idea that I had an underactive thyroid too!

    Again, thank you so much for your help! x

  • Your doctor has it backward. The first TSH test is showing what your body is naturally doing. When your thyroid is not able to produce T4, your pituitary begins sending out messages by way of thyroid stimulating hormone which causes a rise in TSH which should only be 1 or 2. If it tests higher, it is a signal but often they may wait and test again to see if it is a real trend. Patients will be symptomatic at almost anything above 2.

    Then, if you begin treatment with a T4 or NDT hormone your pituitary will no longer send signals because it will notice you have hormone in your system.

    At this point the TSH test result is not that helpful but the FT4 and FT3 are important because it reveals how much you are receiving and converting. They both should be high in range. Even this doesn't say how much hormone is entering the cells which is what makes you feel well. Broda Barnes established the basal rate test by taking your temperature at certain times.

    I think you will understand all this quickly, Sam, and you must because the professionals don't seem to want to be bothered with the nuances of treating Hashimoto's. Keep posting your questions. I've learned so much myself.

  • Thank you. Silly question, but what is NDT hormone?

  • OH, I'm glad to answer as this is another peeve of mine. We also just had a discussion about this. In the 1800's people suffering from lack of thyroid brought about the use of dried thyroid of pigs (is there a message there). Not sure how it was developed by the Armour company sold primarily ham and therefore the hormone was called Armour NDT (natural desiccated hormone).

    This was probably the only formula hypothyroid patients had and it saved many lives. Beginning in the 1950's, a synthetic version of thyroxine was developed and a strong push by drug companies caused most doctors to prescribe it and less and less Armour or any other NDT. While some people can get on with thyroxine which is only T4, I prefer Naturethroid which like Armour contains T4, 3, 2, 1 and calcitonin. When you take a T4 your body has to convert it to T3. My argument is that unless you have a healthy liver and kidneys, your body is going to have a hard time making that conversion and the T4 and T3 test will reveal the problem. Actually many people here were self medicating with only the T3. It works very well, it was inexpensive and it was available over the counter because body builders used it to build muscle. It seems this is changing and I'm not sure why but it's difficult to obtain.

    Sam, you need to be increasing your levo in the next few weeks and by two months you should be find your normal dose, the one that gets your blood levels optimal. Tsh of about 1 and the FT4 in the upper third and FT3 at least midrange.

    Levo and NDT are easier to get yourself if you get nowhere with your doctors. It's not that difficult to do and many here are doing it. I'm in the U.S. and I have the same problems and just avoided my doctor for two years. Don't be disheartened, you can do it too.

  • Thanks so much for your help and support. I'll make an appointment to see my doctor tomorrow but with NHS cutbacks, I may not get to see her for a couple of weeks.

    Is the NDT still derived from animals?

  • Yes, usually it is pork because it has a closer relationship to our own human thyroid. Bovine from cows is also available but I think it may be weaker but Dr. Lowe developed it while he was alive although he used T3 for his own disorder. It's called Thyro-Gold.

  • I just want to point out that if these doctors are not interested in knowing the cause of you low thyroid you may as well not have a doctor. We have learned so much more from people like Izabella Wentz about autoimmune conditions and Shivan Sarno about SIBO (small intestine bacterial overgrowth) which have much more to do with our illness than a thyroid that is struggling. In fact the brain is very involved in many of these conditions as well. I'm curious and don't mind putting in the time to seek out information. I realize not all are prepared for that but I'm immensely better now than even fifteen years ago.

  • I thought FT4 mid range & FT3 upper 1/3 or 1/4. Have you'll read Stop The Thyroid Maddness. Excellent. Also on FBook. I switched to NatureThroid a NDT. It's much better

  • Hi there. Thanks for info. I'll definitely look up Stop The Thyroid Madness, thank you. Unfortunately for personal and ethical reasons, I wouldn't allow myself to take NDT - such a shame it's derived from pigs, as it seems that it works so much better than Levothyroxine, and the like.

    Thanks again!

  • I've read differing thoughts and it may have to do with which hormone you are taking. I think with Levo your T4 will be higher than T3 but if on NDT with additional T3, it may lower T4 value.

    I say, whatever makes you feel good!

  • Welcome to our forum and you are another who is left high and dry as you've found out that doctors know very little about the function of the thyroid gland and what can affect it.

    Your doctor has given you too low a dose and 50mcg is the usual starting dose unless someone is very frail with a heart disease. 50mcg with a blood test every six weeks with an increase of 25mcg thereafter with blood tests until you are symptom free. Too low a dose can backfire and make us feel worse as body doesn't have sufficient to convert to the Active Hormone - T3. Levothyroxine is T4 only but our bodies need T3 for all of our receptor cells, brain and heart contain most.

    Unexplained weight gain is a hypothyroid symptom and should begin to reduce as you get to an optimum of hormones. Many doctors stop precribing when results are somewhere in range. Wrong, the aim is a TSH of 1 or lower, not higher.

    It is a big learning curve when diagnosed as doctors and endocrinologists are poorly trained in metabolism and the working of the thyroid hormones. We have to read and learn ourselves with the help of members in order to be symptom-free. It is not a quick fix.

    Blood tests should always be at the very earliest, fasting (you can drink water) and allow a gap of approx 24 hours between last dose of hormones and the test and take afterwards. This helps keep the TSH at its highest as they are apt to adjust dose unnecessarily.

    Always get a print-out with the ranges. Ranges are important as labs differ. Don't diet at present as your body needs energy and doesn't have sufficient at present.

    I cannot answer about what caused your hypo but others who do will respond.

  • Gosh! Thank you so much for all this info. If it's ok with you, I'll print this and show it to my gp. Again, THANK YOU!

  • He may not like you bringing in info as they have to follow the guidelines but you can tell him this is an NHS Choices (Thyroduk.org.uk) for info about dysfunctions of the thyroid gland although we aren't qualified (but know more than most doctors/endos as we have gone through the mill before finding a way out of it. :)

  • Ok, thank you. will do. x

  • You need blood test after 6 weeks, not 10 and need to have both thyroid antibodies tested to see if cause is autoimmune thyroid disease, also called Hashimoto's. Plus folate, ferritin & B12

    If you can't get GP to do these, then like many of us on here, you can get private testing.

    Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular test. Same tests, just different companies. DIY finger prick test or option to pay extra for private blood draw.

    Reading the medication pamphlet, it looks like you already know more than GP. You need to be pro-active, keep good records of your blood tests, including ranges.

    If you find you have Hashimoto's then you may need to look at food intolerances, most often gluten.

  • Thanks, SlowDragon! I will definitely ask for those tests. I can't afford to go private atm - am self-employed, and with all the months I couldn't work after each surgery, am in serious debt...Arrgh!

    Interesting about Hashimoto's - my son is gluten intolerant.

    Thank you! x

  • Your GP should check antibodies (and if you have them you have an Autoimmune Condition called Hashimoto's - the commonest form of hypothyroidism but the treatment is the same).

    I'm sorry you have found it difficult due to being unwell and hopefully you will find an improvement reasonably quickly. GP should also test B12, and Vit D (pro hormones) iron, ferritin and folate. Always get print-outs with the ranges for your own records and you can post if you have a query.

  • Your help and advice have been invaluable! Thank you! x

  • Just take the HRT at least four hours away from levo, and you should be fine.

    I'm not sure there's enough iodine in these scans to mess up your thyroid permanently. It could have had a temporary effect, but if your thyroid was healthy, it should have bounced back. So, I wouldn't worry about that. Have you had your antibodies tested? Your hypo is far more likely to have been caused by autoimmunity. :)

  • Hi there,

    Thanks for taking the time to reply. Unfortunately, I'm on hrt patches so I can't space out the times. I do leave a space of about 2 hours after taking levo before taking Tramadol, which I take for arthritis.

    I've visited quite a few sites which say that the iodine dye in CT scans can cause Hashimoto's.

    Again, thank you!

  • OK, well if it's patches, it's not going to interfere with the levo, because it doesn't go into the stomach. It's only when they meet up in the stomach that there's a problem.

    Well, I'm no expert on iodine, but I really wouldn't have thought there was enough iodine injected for the scan to cause Hashi's. Excess iodine can cause Hashi's, of course, but that's when people are taking massive doses of it every day. Could you post some links from where you've been reading, I would be interested to read them, too.

  • Sure. Here's one, and there are others. Hypothyroidism can be caused by having just one CT scan and as I've mentioned, I've had at least 7/8.

    holisticprimarycare.net/top...

  • Well, they don't say it automatically causes it, they say it 'increases the risk' and 'is associated with'. Nor do they say if it is permanent or temporary disruption.

    But, even if that is what caused your hypo, there's not much you can do about it now, is there.

  • Yes don't worry about how you got here, just learn how to manage it. We are all hear to help. If you look on the Thyroid Uk site, they run this forum.m, there are loads of info I am sure you will learn from. They are recommended by NHS Choices so if your doctor is worried about where you are finding info then tell him that. They is a lot to learn but no one is going to test you st the end of the week! Learn as you go along, it's a lot to take in all at once. Shout out if anything you don't understand and welcome to the forum!

  • Ahh, thank you so much for your kind words. I've been feeling so alone going through this, and coming on here has been such a comfort. Thank you! x

  • I take oral HRT, & learned the hard way that it needs to be taken well away from thyroid hormones, & also vitamin D. I don't think patches will affect oral intake, but you might want to leave it a little longer between your levothyroxine & tramadol. I try to leave at least two hours before eating & drinking anything else after taking throid hormones, & 4 hours between any other supplements or medication, which is sometimes hard when my pain levels are worse. Often around 4am, I have to decide whether I most need painkillers to get back to sleep, or take my THs then & pain meds after 8. Hopefully, when your D levels increase, & you get to a happy dose of throid hormones, you'll be in much less pain, & timing everything else becomes easier.

    Please check your other nutrient levels are good, too, so your body's better able to convert your hormone intake to T3. I've often seen posts advising people to get their ducks in a row with regard to vitamins D, B12, folate, & minerals iron for ferritin, selenium, zinc, & magnesium. Important to be aware that these clash with THs, & some need to be taken apart for best absorption. I take THs with a pinch of vitamin C powder in the water, & iron with fruit for vitamin C. D with something fatty. Magnesium is good at bedtime, & might help your pain levels. A good soak in calcium magnesium sulphate (epsom salts) or magnesium flakes is lovely & soothing for my aches. I get 25kg sack & use at least 500g in the bath.

    If I've left anything out nutrient wise, please chip in!

  • Thank you! Oh my gosh! That's so much to take in!! I'll have to start setting my alarm several times a day (and night!). It all sounds so complicated and my brain is so foggy atm (menopause symptom). Thank you so much for your advice. x

  • Would just like to add that my job is quite physical, so I need to take the Tramadol and Ibuprofen by 9am, so do I have to wake at 5am every day to take the levo? I never have breakfast, so the not eating part is fine, but can I drink water after taking levo? I drink lots of water - especially because of the night sweats and hot flushes! x

  • You can take levothyroxine at bedtime as long as stomach is empty - usually food passes slowly if hypo as everything has slowed down, i.e. pulse and temp and metabolism for instance. If you decide to do this, miss this dose if having a blood test next a.m. and take after test and again at bedtime.

    Levo or any other thyroid hormones have to be taken with one full glass of water. It could stick in throat.

  • Ok, thank you. What exactly is an empty stomach? I mean, how long after eating say supper, is a stomach regarded as empty?

  • If we have a meal without protein I believe it's about two to two-and-half hours. Go to the date January 30, 2002 on the following link to read:

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

  • Thanks. x

  • You can take Levo at bedtime. In fact lots of us find it better and recent research backs this up

    verywell.com/should-i-take-...

    Does need to be on empty stomach, nothing apart from water two hours before or an hour after.

    Good reason to avoid evening fridge raid or other nibbles before bed!

  • Haha - true! So, not even a glass of wine?!

  • Early evening drinks are fine. If you're out and eating /drinking late, just take Levo in middle of night when get up for the loo. Quite a few take in middle of night every night

    Put daily Levo in pill dispenser by bed... very easy to wonder if you took it ...or not otherwise ...especially with brain fog

  • Great advice, thanks!

  • Hi sam8de welcome to the forum, you have been given some really good advice already but would like to say that alot of your symptoms that you've put down to menopause could be because your hypothyroid as i see you put foggy brain down to menopause but brain fog is classic symptom of hypothyroid you'll see lots of us refer to having brain fog on the forum, have a look at the list of symptoms on the thyroid UK site you will be surprised at how many there are. I put alot of my symptoms down to menopause before I was diagnosed.

  • Hi, thank you. Yes, so many of the symptoms of menopause and hypothyroidism are the same. That was the reason that my gp didn't want to put me on levo at the same time as starting hrt, as if I improve, we wouldn't know which medication was working, but my depression, lethargy and constant crying got so bad , even on hrt, that I went back and said that I couldn't wait until September to start the levo, so she put me on it....but on such a low dose!

  • The menopause is a natural event - being Hypo is not.

  • It is overwhelming at first, but just take one thing at a time. In a few months juggling stuff will be second nature, & you'll start feeling better! :)

    If I sleep through the night, & the HRT stopped my hot flushes, it's always THs first, pain meds second with a whopping big coffee, onmy pain doctor's advice. ;) I fit in everything else throughout the day. One of the most important things that helped was avoiding unfermented soya, just in case you eat any.

    Good luck!

    Mel x

  • Thanks Mel. I've heard that soya beans may interfere with thyroid meds. I was eating edamame beans to help with menopause, but stopped after hearing this.

    I told my gp (and boyfriend) that I'm definitely coming back a man - simple minds, simple bodies! Haha. x

  • I doubt your boyfriend will like that idea :) but we know what you mean.

  • If you are not a meat eater I am guessing your B12 will be low. Any thing below 500 can present with neurological symptoms - it is far more than a vitamin deficiency. It is so missed by Docs as a potential for very serious conditions. If you click onto my name above and scroll through my posts and read the ones about B12.

    I live with the consequences of Low B12 and now have weekly injections. When low it can cause brain shrinkage ....

  • Wow! I will do. Thanks! x

  • Just checked - it is the 4th post down on my Profile.

  • Got it!! x

  • Thanks for all the info, and I'm so sorry to hear about your condition. xx

  • hello,lots of advice,much of it good.Would agree that your thyroid problem is probably causing many of symptoms attributed to menopause.Its difficult for you and gp to work out what is actually helping as both these being treated at once,albeit sub theraputic treatment of your thyroid.It might be better to get the thyroid adequately treated in the first place without the HRT on board.There are alternative treatments for menopause symptoms like sage drops for hot flushes,red clover etc that work well.Your body may benefit from not having too many synthetic hormones thrown at it at once.Vitamin D ultimately also you can get from more time out doors and diet.Your body must be very ,very stressed,multiple surgeries,arthritis,pain,self employed,buck stops at you money wise.good book on menopause by Christine Northrup worth buying or library.You need to make gentle changes,find things that nurture yourself that can happen on a daily basis.make small gradual adjustments to diet(gluten free stopped my arthritis but did nothing for thyroid)try eating and cooking from scratch as it cuts out loads of additives .avoid the gluten free substitutes.buy yourself some aromatherapy oils,walk gently.Let your body heal.Try not to worry about finances too much as it creates more illness.Your body needs to heal from lots happening to it.You have it within you to do that.It takes time and belief.

  • was in similar situation 14 years ago(6 laparotomies losing colon by end of it),loads of scans,poor medical care.sole earner in household.subsequent employment issues,etc.became hyper then hypothyroid,chronic neutopaenia,arthritis,low cortisol.am full time carer for partner with MS and have 2 lovely parents 88,89 to keep an eye on.my body,as with others developed some form of 'stress response' biologically.if I exercised more than gently. Would swell up,if I ate less to lose weight ditto,more swelling,no weight loss.I avoided HRT as my initial illness was hormone dependent.I found being with nature,taking time for self,enjoying food but moderately,walking gently,bit of photography generally 'getting in the groove' switched some internal switch that seemed to turn off autoimmune illnesses or modify them.It is trying to find that key for yourself that is much of the answer.Im size 14/16(wish I was thinner but So what)waist length thick ,hair despite being hypothyroid,and wish I had followed more of my own intuition about what suited my body best.

  • Gosh, what a lot of stress for one person. Poor you, but I'm glad that you've managed to sort out what works for you! x

  • haven't got it all worked out but sometimes good to find more answers,good luck

  • Thank you so much for such thoughtful advice. Perhaps it would have been better to get my thyroid sorted first, but my menopausal symptoms were so bad that I had become suicidal. Trying to get through each minute of every day was such a struggle. I felt like the girl on The Exorcist - some crazy, horrible woman had taken over my mind!!

    As I've mentioned, I walk over 35 miles a week, so was shocked about the vit D deficiency, until I realised that because of my huge weight gain, I've been covering up to hide my body (I've never been overweight before all this happening and feel very self- conscious and embarrassed about it).

    I've been a pescatarian for 27 years and am completely into cooking from scratch - I love cooking, but also eat lots of raw vegetables and salads. I'm totally against 'ready meals, microwaved meals and any processed food. My dog was fed a raw, homemade diet, haha.

    I will definitely try the sage drops and red clover you suggested. A couple of friends swear by yam tablets too!

    Thanks again for such good info.

    Sam x

  • sounds like you have a good sense of what suits you.And also a GP who cares.Its odd to be so vitamin D deficient walking so much,just wondering if your gut is absorbing all the vitamin d in food.good luck with it all

  • Hello. I'm so sorry to hear you're so down. I was diagnosed hypothyroid last year just after I was also diagnosed with early menopause. I'd had hot flushes 5 years previous but the doc said I was too young. I'm now 49. I feel confused, unable to make decisions, have virtually no short term memory, have bouts of uncontrollable yawning and can't stay awake after 4pm. I felt like a zombie most of the time and was put on 50mg levothyroxine and have hrt evorel 50 patches which were increased to 75. I still feel something is wrong and can't keep up with my chores or my deadlines at work. This started about 4 months ago and the doc put me on antidepressants. I feel like they are missing the point and have convinced myself its my thyroid making me so tired and sluggish.

    I wish i had the answers for you but I'm just as confused but you're not alone in this.

  • Oh, poor thing. It's tough, isn't it? I feel for you so much. We see our friends and family carrying on and enjoying life, and wonder when/how/why we can't feel and do the same anymore. x

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