I rarely take my levothyroxine

Ok I am a 54 year old male I had my thyroid removed due to cancer I had a 10 centimeters tumor that turned out to be a malignant tumor so anyway I'm single and not very good at remembering to take my medication and due to certain circumstances I haven't see my endocrinologist so I haven't had the radioactive iodine treatment it's been over a year since my surgery am I going to die from my lack of taking my meds and not having done the iodine treatment. I'm gaining weight I get muscle spasms all the time lack energy and just don't feel well in general most of the time I need some advice

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  • Hello Ricky,

    Welcome to our forum and I am sorry to hear of your thyroid tumor.

    If you have had your whole thyroid removed, why do you need radioactive iodine treatment? Or did you have a partial thyroidectomy ?

    It is vital to take your Levothyroxine to replace missing hormones.

    Take your pill on an empty stomach, 1 hour before food, 2 hours before supplements or 4 hours before iron or calcium. It may be taken any time of the day but best at the same time so you remember. Members usually take theirs either first thing in the morning or last thing at night.

    If you are prone to forgetting, you could set an alarm or leave them out (by your bed? ) where you will see them daily.

    Levothyroxine contains T4 hormone which converts into T3 in the body and controls your bodies metabolism. Your metabolic rate dictates how quickly you process food, how fast your heart beats, how much heat your body creates and even how quickly you can think.

    If you are low on thyroid hormone you will become progressively more and more ill until you eventually die.

    Flower

    Hypothyroidism

    thyroiduk.org.uk/tuk/about_...

    This following link explains the importance of vitamins and where they may be obtained.

    thyroiduk.org.uk/tuk/treatm...

    ……………………………………………………………………………………………………………………...................

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    ……………………………………………………………………………………………………………………..................

  • You need to see your endo and he or she will decide what is best. He may say you need radio iodine or may not. It is a good idea to see him first incase he want's to give you radio iodine. The endo will see your report fjruomv your surgery and the endo will decide on those bases. Setting a alarm for your meds is a good idea and keeping your meds in a place you will remmember. I hope you get the treatment your need.

  • Thank you very much

  • Wow! Had no idea about iron supplements affecting absorption of thyroxine meds. Thank you. As for Rickyb, my sympathies. Good that you have come here to ask advice and to receive encouragement. Just take it a day at a time and practise taking your meds effectively and enjoying a comeback.

  • Hi Flower

    I didnt know about the iron so i've been taking mine at the same time (lots of pills now i'm Diabetic as well...oh great joy) what do they do to the T4? Obviously I will stop doing it asap.

    Thanks Joesoap

  • Iron (and calcium) binds to the T4 and makes it unavailable for conversion into T3 - briefly. So, you become more hypo.

  • Hi gg you have just thrown me a curve!

    I was under the impression that we need ferritin (a product from our stored iron) in order to facilitate the T4 to T3 process. I have just discovered that my ferritin is low so I was considering taking an iron supplement (or eating a lot of red meat - but that's expensive) so what should I do?

  • Take it four hours after your hormone. It just doesn't want to meet up in the stomach, that's all. :)

  • OK, I will do that. But does that mean that it's OK to "meet up" in the blood serum, just not in the stomach? Because T4 hangs around for about a week, it's not like it disappears for a while when you could take iron with no repercussions to your T4 level?

  • LAH's

    Although there is always a small amount of circulating free, we are looking to supplement the iron after the thyroid hormone we take becomes bound to proteins

    (TBG) and are carried to peripheral sites for conversion.

    By supplementing iron four hours away it is the best we can do to avoid our precious thyroid hormones becoming bound to the iron as this would make it unavailable for use.

    It is confusing because thyroid peroxidase (TPO) depends on sufficient iron stores as is an iron containing enzyme used in the initial process of thyroid hormone synthesis. Low iron not only lowers activity but the actual amount of TPO reducing T4-T3 conversion and increasing RT3.

    Flower

    nahypothyroidism.org/deiodi...

    ……………………………………………………………………………………

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    ……………………………………………………………………………………

  • Thank you very much flower, excellent advice just at the right time.

  • LAH it's not so much the red meat in general--it's about beef liver in particular---get organic beef liver as its not full of impurities--graig farms in wales sells it cheaply--there maybe some other organic farms that sell it as well-

  • Thanks Sky.

  • you are welcome...  

  • t4 and lack of t3 can make a person diabetic, statins cause it too..

  • faith can you please say where this info comes from---want to show to my diabetic nurse --to help re enforce my case for t3 thanks

  • Most importantly would be to heal your immune system..inflammation causes type 2, it starts with the Gut and repairing it..

    ncbi.nlm.nih.gov/pmc/articl...

    holistic-hypothyroidism-sol...

    holistic-hypothyroidism-sol...

    drhyman.com/blog/2010/05/20...

  • Yes Flower your first question is the first thing that went through my mind. You do not necessarily need RA radiation treatment after thyroidectomy, they only do this if there are any cells left which may develop cancerous again or float around and "plant" tumors elsewhere. You get a Radioactive Iodine scan to determine this - and it's hard to escape that, after surgery you pretty much submit to everything they want, at least for a while.

    Get back to the Endo Ricky B, your organs will start shutting down slowly and it will not be pleasant. It's much worse than responding to an alarm first thing every morning.

  • Thank you for good explanation LAHs.

    I was confused as have no knowledge of thyroid cancer.

    It all makes sense now.

    Flower

  • I had my whole thyroid removed and had to have radio iodine to shrink the tumor. Incase there are any cells left behind the radio iodine will help that.

  • Oh thank you puneet.

    I have no knowledge of thyroid cancer and am sorry to hear you have suffered.

    Flower

  • Hi, Ricky. So sorry to hear what you've been through. Just wanted to confirm what everyone else has said: taking thyroid medicine is not optional if you have low thyroid function (which you do). You need to see a doctor in order to get everything checked, and in the meantime, you absolutely do need to take your medicine and take it regularly.

    Like puneet said, set a daily alarm if you have to. Skipping is not an option! I mean, it is, but you will continue to feel like s*** if you keep skipping, and it will only get worse. It might also help to always take your pill at the same time each day, so that you get into a routine. You can even leave the pills in one of those weekly pill holders (the ones that say M T W Th F Sa Su) so that you can look into it and make sure you've taken your pill for the day. (You just have to remember to fill it with pills every Sunday --or whichever-- night.) It would be crazy in this day and age to let yourself die an awful death simply by not taking a pill that is readily available and easy to take daily.

    Wishing you good luck.

  • Take action immediately. The lack of levothyroxine is responsible for your weight gain and for the spasms and the lethargy. You will feel like crap. Have your bloods taken to see if you need a higher dose. Have a glass of water with your meds at the side of your bed so you can take them first thing after a week you should feel well enough to get intouch with your doctor to get the treatment you need. Lack of thyroxine will certainly make you depressed plus you will feel like you're dying. Come on get sorted!!!

  • Thank you very much I know this has nothing to do with my thyroid but two months after the thyroid removal I had to have cervical spinal fusion surgery so much has happened to me in a year and half once again thank you

  • You need a big cuddle. Don't give up now you've been through so much you are nearly there.. God bless

  • this is the best reply to him for sure... i'm thinking carer to come --hospital should do after care for you--even if it's short term for support and getting you onto a routine and give some friendly banter, and do you know if you are able to convert t4 to t3? and what about other meds like natural dessicated thyroid or t3 worth asking---not everyone does best on levo & that's the truth... and anyone that ends a paragraph with --and then you die or to that effect.... isn't helping at all... you are going to get better ! you want to ! you reached out to this group..you need simple to understand instructions--not death threats --we are holding your hand and are here for you don't give up you can get better with help from new friends, get someone to start with making a nourishing and strengthening proper chicken soup--ask endo to check your iodine levels...if you can handle more info ( brain fog ) we can offer it...and reach out to docs endos district nurses, anyone that can help--it's your right to get better! we support you ! here's a hug from me as well....

  • Oh Rickyb, that's very tough! I know because my sister had the same cervical surgery 4 months ago, and had postponed it for ages, taking shots for pain instead. Everything 'going downhill' for you healthwise is enough to make you totally miserable, but there IS hope - when you get your thyroid on a regular dose of Thyroxine (T4 - levothyroxine or synthroid for starters) things will definitely get better. It can happen within a week or a few weeks, so stick to it and expect things to improve. The prognosis for back surgery is good too, although it's rotten when you're getting over it!

    Julie's suggestion to use a weekly pillholder is something I find absolutely necessary. I set my alarm for 7:00am or so and take the meds, so if I go back to sleep I know I've done that thanks to the pillholder!

    Stay hopeful. You are NOT alone!

  • You know it's simple really Rickyb, take your meds and you will start feeling a heck of a lot better. Good luck to you.

  • You should of course take your thyroxine. If there is something you do first thing every day, for example - brush your teeth, have your thyroxine near your toothpaste. Take it and continue as normal. Having said that I haven't taken my thyroxine in a long time now and am not suffering as a result. My doctor's advised I restart BUT I genuinely have NOT suffered side effects or other issues as a result, yet. I'm fortunate that I'm fit and able to exercise, so I do, and frequently. I eat moderately and try to be careful but that's it. I sincerely believe we feel daily dependant on thyroxine but we're not. My thyroid has not been removed but produces nothing at all so in theory I am totally dependant on levothyroxine but I clearly do NOT need this to function so if you forget, even for a day or two, don't fret. It's unlikely you'll actually suffer as a result.

  • Unfortunately I don't have a thyroid at all and I noticed that I was beginning to have quite a few of the side effects which led me to inquire about it Im glad for you I pray you keep feeling better thank you for replying

  • Redscorpian-you are absolutely wrong-please stop advising others when you lack medical knowledge.

  • RedScorpion, that's a weird thing to say, that you've given up your thyroxine altogether. But as I have no thyroid and have been through RAI, etc where you need to be off thyroxine, I am always curious about people's experiences.

    How do you know your gland produces nothing? I assume youve had blood tests and that TSH is over 100 and fT3 and fT4 both under range? And you can still excercise?

    That is what my numbers are like currently, And what RickyB's may be if he takes his thyroxine very infrequently. I couldn't even do one or two yoga poses!! Although because I've switched over to NDT I'm able to read a novel or watch complex movies on it.

  • Take your medication!

    Keep them on your bedside table and either take as soon as you wake up or last thing at night then hopefully it will just become routine. Ideally they need to be taken an hour from eating food/drinking to be most effective.

    You will feel better than you do now.

  • totally agree with katepots I was going to write the same but she has already done it- leaving whereyouare sleeping it is there. you cant miss it.

  • Hi Ricky. Please do as other more experienced members say. I stopped taking my meds as I felt so ill. I did get to feeling much worse without them and am still not at an optimal dose. Currently I talked 125 MCG levo. I cut 7 tablets off the strip in one box and 7 off the strip in the other and keep them by the kettle. I can tell if I have remembered or not this way. Not taking my meds affected my memory so this really helped. You will feel better as others have said once you slowly reintroduce your meds. I think you will need medical supervision of some sort though. Hope you feel good soon x

  • Good idea; leaving them by the kettle... I am still programmed to seek a coffee hit first thing in the morning. By the time I've staggered to the kitchen and realised the futility of my caffeine seeking behaviour; it's a good opportunity to take my Levo ☕

  • Hi Joburton, I think it is better not to take thyroxine with tea or coffee, just water. I think I read on here that it's best not to hit the hot drinks until an hour after?

    I hope you are feeling well? Take care x

  • Lol, don't worry I always make myself wait for a whole hour; I'm still on autopilot and head straight for the kettle on waking though. Old habits die hard.

    Not feeling too bad atm, thank you x

  • Glad to hear you are not too bad x keep that feeling x

  • Do not take your meds within an hour or two of caffeine as that will weaken the absorption

  • Wow, I didn't know that. So glad I kept on reading. Thanks!

  • I never knew about tea n coffee weakening the absorption and Ive only been on it for thirty odd years !

    Thanks for the info

  • Rickyb, I've not had my thyroid removed but for many years Hashimoto's. Unfortunately my body rejected thyroxine and had no replacement. For some reason my body seemed to adapt ........ seemed........ but I saw a respected endocrinologist who bluntly told me if I didn't get some form of replacement I'd be dead in six months. Then, he arranged for me to go into hospital, challenged my body with thyroxine slowly and yes I was allergic to it. Then I was introduced slowly to liothyronine. I hadn't realised just how badly I'd been beforehand. I wouldn't want to be like that again. I realise before liothyronine I'd been living a half life.

    That endocrinologist sat me down and told me just how important the thyroid gland is to the whole of your body. I'm NOT saying you're going to die anytime soon but do go to you GP get a new prescription for thyroid meds. yours might be out of date, and ask for a referral to an endocrinologist who will advise you from now on.

    Come back to this site and let us all know how you're doing. I wish you well. X

  • Hi Mabsie, great post - sounds like you found a good endo. Could you possibly give me his name and where he practices? I desperately need to see someone prepared to prescribe T3.

    Thankyou

  • Thanks health seeker. Unfortunately that gentleman has retired. I've moved house and my recommendation would be contact thyroid UK as I'm sure they will have lists of endocrinologists in your area. We all struggle to find ones we can 'work' with. Since my move I've struggled but fingers crossed I'm hopeful my new one will be ok. The previous one tried to stop my t3.

    I hope you find a good endocrinologist who will listen and help you. All the best to you.

    'M' X

  • Many thanks, I hope you find another good doc. Seems that we can never get complacentabout continuing good treatment once we've found it. Maybe it would help to get a copy of your hospital notes to show the new doc?

  • My notes he's already seen and he's sent a blood form for several tests... most of the usual ones. So, I feel hopeful healthseeker.

  • Hi Ricky

    Can't you set an alarm in your watch or phone to remind you? I take mine around 4.am. as I find the dawn disturbs me regularly. Good luck Ricky and take those pills please. x

  • Hi sorry for jumping in on this post, I really need some advice, I had a thyroid biopsy nearly 6 weeks ago, I spoke to consultant a few weeks back and he told me they were having an mdt meeting to discuss my case they have cancelled my appointment twice and I'm at my wits end as no one is telling me anything tia

  • leanne2305 ring up and speak to the secretary and keep ringing until they answer you or get doc to it. you need someone to fight your corner when you are unwell.

  • Thank you hun, I've tried the Secretary on Monday and she told me that someone would ring me on Tuesday but never did, I have rang pals did this yesterday but could take up to 7 days,Ive also tried my doc but there not telling me anything either, really don't know what to do now

  • leannei have learnt that you have to be a dog with a bone, I kept tryingto get apt with phsyio not important really comsidering all the other health probs I have but after constantly leaving messages on the fone, same as ENT secretary I needed to get there for my ear but no replies, day after day so I thought sod

    this for a game of soldiers, I rang the chief executive office.

    the person who answerd was the PA I aske dfor the chief, she said can I help? I said I dontknow hope so,-- relayed the story and off she went to the physio dept- and then sent off an email to the ENT and hey I got both appoints.

    I would ask th epractise manager, but what is it that are not tellingyou? what is it you are waiting for?

    tell them you need answers as it is your body an dthe stress is makingyou worse

  • Glad you got sorted hun,yes I'm the same dog with a bone I'm not letting this drop I'm going to make some phone calls today and get some answers, as you say it's my body and I have a right to know what's going on, and I have been stressed to bits since I had the biopsy done,thank you for your advice hun it's much appreciated, will let you know how I get on

  • Yes please do- because ethey do not have to live our life- iam far from sorted as I have so many problems, but it is an uphill fight, don't let them beat you down, a slongas you are not rude , just be firm and they cannot condemn you. point out the suspense will kill you!!!!

  • One day all us dogs with a bone are going to become a pack.. and stand outside NO.10 xxx

  • mango I LOVE IT-- A HOWLING PACK OF WOLVES! an di love your pic.. sweet..

  • Thank you, it's a picture of me.. Tired and feeling the cold. xx

  • Good on ya BluePettals, yes, act like a dog with a bone, sometimes even a mad dog with a bone.

  • I agree with bluepettals2.. Phone every day until you get the right answers.

    Best Wishes x

  • Thank you hun x

  • Hi Rickyb, every night as I'm going to bed I pop the necessary pills out of the packet and bottle and leave them on the dressing table with a glass of water so I can take them as soon as I wake up, this then gives them a chance to be absorbed before I put anything else into my stomach a bit later on. After a few nights of this you'll start to remember as it becomes part of your routine ...plus you'll feel better as well! Good luck.

  • Good advice x

  • Hi

    I had full thyroid removal due to cancer,The radioactive iodine treatment is a way of sweeping the body to make sure no cancerous calls travelled away from starting point.Thyroid cells take up /absorb iodine where as the rest of the body doesn't so they make the iodine radioactive,you swallow it it goes inn your body and any thyroid cells still anywher absorb the radioactive iodine and get killed off so to reduce the chance of any cancer cells growing again.Ideally you should have had it within a few months but as i recently posted my brother didn't have his nuked for years.

    Taking levothyroxine everyday is vitally important !

    You can also get a free prescription card so as you don't have to pay for any prescription again as you will need them for life.

    Please see your gp at least and as others have said set alarm and take everyday.

    Take care

  • Hi Rickyb you can buy little medication boxes in a strip with the day am, pm on each one to remind you when to take them, all you have to do is pop the meds in each box every week. It's a good idea if you're under stress and get a little forgetful.

    Good luck with everything.

  • Hey there, I have also had my thyroid out due to cancer and received the iodine ablation treatment a few weeks after.

    Now 13 years later I take 175mg levothyroxine daily and have on occasions forgot to take it, I have been told that if I don't take it, any cancer cells that could be remaining will grow.

    Honestly this has been enough for me to take them and daily again.

    I was also told to take first thing in the morning with a glass of water and an hour before eating anything.

    Please take your meds x

  • Morning Rickyb. as janW says i bought a tablet box from Boots as i was a bit hit&miss with my tablets, I now put all i need for the next day last thing at night. I all so had to find out for myself about iron& levothyroxin. I am thinking a visit to your Drs would not go amiss.Best wishes Dave.

  • Hi Rickyb, To remember to take my levothyoxine I always have them on my bedside table next to a small bottle of water. I take them first thing in the morning when I'm getting out of bed. Also, my levothyroxine usually comes in strips of 28 pills and what I do is cut a strip off containing just 7 pills. That way (if I've been in groggy stupor when I've got up and can't remember if I've taken my pill) I can always go back later and check that I've taken one for that day. (All you have to remember is what day of the week you first taking them on....Conveniently, I first started taken mine on a Monday, but if you, say, start on a Wednesday, you'll know that the pills in the strip correspond to the days of the week running from Wednesday to Tuesday inclusive.) All the best. I hope you start to feel better very soon.

  • Hello Rickyb, I'm not surprised you forget to take them after all the surgery you have had over the last year or so!

    Think of the Levo as your "staying alive" pills!!

    I take a lot of medications and have done for a while before needing Levo, but I still find I forget (thyroid brain fog!) so making a small tick chart can be good, stick it up next to the kettle. If you are cleverer than me with a computer you could do a spreadsheet! I write out by hand. Tick off when you have taken the meds for the day.

    Don't be afraid to go back to the doctor, they understand how complicated life can be, but I second what flower007 has said, low thyroid will kill you if untreated. Look after yourself well and good luck! God Bless.

  • Some pharmacies will package your medication in a set of daily strips for you. Generally it's for older people who are on multiple medications, but if you are struggling it might be worth a try if you can find somewhere that offers the repackaging.

  • Those sound exactly like the symptoms of a under-active thyroid, so really why are you not taking levothyroxine when it has been prescribed for you, eventually your body will slow down and you will go into a coma, this of course will take quite awhile, but why risk it?

  • Hi Ricky- just got in from work & read your post- please take everyone's advice & take your meds- without a thyroid we will die & the meds are the only thing that can prevent that!! 😢 Another thing made alarm bells ring- your "muscle spasms" When they removed your thyroid, were they able to preserve your parathyroids??? If not, you may be suffering from calcium deficiency & this can also become very serious. You haven't been very well followed up by the hospital- please get yourself medicated and checked out for calcium xxxxx

  • I'm glad a few people explained RAI treatment. It's for cancer patients to have after surgery to make sure every last scrap of thyroid, and any cancer cells that have floated off into your body will get zapped. You will also be offered a scan 3 months later, which is a smaller dose of RAI to confirm that there is no cancer anywhere. The fact that you have not a scrap of thyroid tissue left means that if your blood tests ever show there is any thyroid activity in your body, they know it is cancer. This means we have this simple blood test as an insurance forever that the cancer will be caught immediately if it returns.

    I went through this process starting in 2013. It took almost a year from my first operation to getting the all clear, and because you have to go off medication RAI and I had it 3 times, I was on and off my thyroxine all year. It is damn hard work, But I think the way to get through it is not to think too much, just keep plodding through, all you need I get through is the next treatment on the horizon, or the next day of waiting for a better dosage.

    Give yourself a break, You have had a really really hard time. But also you need to get back on that horse, take your medicine regularly, and get to your GP and get referrals to have your RAI. You've got to make sure you're safe in the future.

    The step you'll be offered later is to start tailoring your dose. That's the point when you really start to feel a whole lot better. You will probably start feeling better within a week if you start taking your medicine right now. As others are saying, lots of your problems are from hypothyroid - it feels wretched.

  • Just noticed you asked in the OP if you will die from not having RAI or not taking thyroxine.

    For RAI it's really an insurance policy to stop the cancer coming back. Depending on how virulent your cancer was, it is probably unlikely to have spread, but there is always a tiny chance a few pieces broke off and have gone somewhere else in your body. RAI stops that from happening.

    With thyroxine, I've heard people say you can die after about 6 years with none at all. Your body would get slower and slower until everything started to shut down. You would defintely know it was happening! In a lot of ways the thyroxine is for your own quality of life. Without it you will feel rubbish, and it will slowly cause other health complains and make other things worse. The closer you get I the right dosage, the more you will feel like your old self, have energy, and reduce symptoms like depression., dry skin, constipation, etc.

  • Btw, this is the dosette box I use: amazon.co.uk/gp/aw/d/B009F9...

    It's a bit nicer than the kind you will find in a chemist. You can pop each day off the strip in case you stay overnight somewhere. There is also a deluxe version with a timer and alarm if that would be useful to you.

    Something like this is ESSENTIAL for people who are forgetting to take medicine. Laying things out by your bed is all very well (it's what I do), But with a box like this you can tell at a glance if you've missed 2 days of tablets. If it's levothyroxine, You can still take them even if you've missed a whole week. Its very very slow acting.

    But you do need to really commit yourself to setting them up on Sunday or whenever.

  • And this one if you have other medicine to take for other conditions - it's got space for 5 doses each day :

    amazon.co.uk/Anabox-Weekly-...

  • Rickyb, your symptoms are due to low thyroid because you aren't taking Levothyroxine. The other, and perhaps major, reason for thyCa patients to take Levothyroxine is to suppress TSH <0.1 to reduce the chances of thyroid cancer recurrence in the lymph glands which can then spread and metastasise throughout the body. 4 weeks off Levothyroxine prepping for RAI my TSH was 107.5. I imagine yours will be considerably higher if you've not taken Levothyroxine since surgery.

    You need to start taking Levothyroxine immediately and take it daily. Make a GP appointment for urgent referral to an endocrinologist who will check your lymph glands for swelling and arrange RAI if necessary. RAI isn't always necessary but usually is for patients >40 years of age with tumours >2cm especially if the thyCa was one of the more aggressive types.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Dear Rickyb,

    I'm so glad you've joined this help group.. cause that is what it is ! I have Graves' disease , different from your condition and therefore not equipped to give to direct

    advice .. but just look 👀 at how many caring people answered your post ! You made

    me feel so upset to think you've suffered so much and , I think, perhaps on your own ! .. please ...take your Medication as well as all the info here and slowly begin to get your life back together... you CAN do it and these good folk will tell you exactly how to.. don't be afraid to ask more questions ... you'll get all the answers you need on here .. and the very best of Luck to you Ricky..in a few days you'll be so very glad you made the effort .. stay strong and here's a flower for you too Luvvie 🌻 X

  • Hi, I also lost my thyroid due to cancer nearly 4 years ago. You should be seeing an oncologist or and endocrinologist. I see and oncologist ever 6 months now, was 3 months at first. You have to get to your gp as soon as possible and get these appointments chased up and attended. Put your levothroxine in a dosset box so you know when you need to take it. Your life will be affected terrible if you don't look after your health. Hope things improve soon.

  • Hi, so much help on here but my tuppence worth is that I can't ever remember my thyroxine if I try to take it in the mornings and also I always start the day with a cup of tea and it's best not to take the two together, so the pills are kept next to my toothbrush and I take them before bed. Last week I ran out and thought I'd be fine for a few days but by day 3 I was a mess! - I was completely exhausted and everything just seemed bleak. Two days back on and I'm feeling human again. So please, please find a way to take them regularly and make sure you keep going back to your GP if, after a month or two you still don't feel right. Good luck.

  • Wow I am very touched by all responses I have gotten it's been more and better than I ever thought it would thank you all so very much I will keep you all posted on how things are going I made an appt with my primary care doctor thank you

  • you need to be seen asap or eventually you will go into thyroid storm and yes could die . set your alarm to take meds daily amd get an appointment urgently with an oncologist for treatment.

  • I am 54 also, had my thyroid removed over thirty years ago now and like you I'm a swine for forgetting my meds that was until I put them next to the kettle ! I always remember now.

    I also felt unwell, tired and was gaining weight, but I started feeling better when I got more organised.

    Please try and find a way to remember your pills, they are important, also drink plenty of water and you will feel better soon. Sending you a hug

  • Hi Rickyb, I don't know if anyone suggested this since I was unable to read all responses to you but one thing that is mandatory that enables me to remember if I've taken it or not is an inexpensive 7 day pill holder which lists the days of the week. Since I started using one of these, except on a very rare occasion, I don't miss. I also take it every morning.

  • I put my tablet in a egg cup by my bed with a glass of water as soon as I wake up I take it this stops me forgetting 👍

  • Get a grip!!! I was there in my own special way... You've got to sieze the day take control and stop being a victim... If you had a tumour removed then surely you're worth it I mean they don't chuck vital resources away on no hopers so brush yourself off and get on with it all treatment is based on us playing our part... So come on you're over the worst... You've done it I was a stunningly beautiful women and I got thyroid eye disease got graves now I'm a wonky eyed overweight with half my teeth missing(thorn waltz cyst) but that's another story!!! Spent a year on steroids and gained 5 stone man I was fffather!! But I'm losing the weight and I'm getting sorted and you will just hang in there and get ur Arsenal up off the floor... We've all been there and it's worth hanging in there x

  • Hi Ricky, I am very sorry to hear about your problems. There are two ways to remove your Thyroid Gland or may be should I say make it stop working.

    1. To totally remove it, this is what you have had .

    2 Radio Iodine, this kills the gland but leaves it there.

    As you had a tumour on your gland it was necessary to remove it in total, that way getting rid of the Tumour, so you will not need any iodine treatment.

    With regards to your medication, I am surprised you are still functioning if you do not take your medication. I would asked you dr for a Thyriod blood test ASAP and see what the results are.

    Good luck John

  • I am terrible at remembering to take meds. Have you tried to get a pill dispenser with the days of the week on I have one with morning and evening on and they are cheap to obtain on a well known auction site, or at chemists, even some pound shops have them? I find if I keep it in the kitchen near the tea and coffee I remember. Its the only thing that works for me. I fill it up every Sunday with the next weeks meds. I hope this doesn't sound patronising but it has worked for me and nothing else did. I take thyroid meds in the morning before 8am, then lunch time or after lunch my vitamins, then later on in the evening more thyroid meds, leaving at least 4 hours between them.

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