A couple of weeks i started to feel low and just wanted to be on my own so after having a row with my wife i chucked all my Levothyoxine tablets down the loo and this happened last Friday as just had enough.
i dont have a Thyroid as had it out about 8 years ago and now im 41 i just hate the whole thing and dont want to go on taking tablets anymore.
i have fits as well so that dont help with how i feel and i know its only been less then a week but i feel ok apart from still feeling low.
anyway though i would say hello and did not thing there were any thyroid forums here in the uk.
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macc2017
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If you stay off the levothyroxine you will eventually start to get really horrible symptoms of overt hypothyrodism. I know these are dire because I did not get diagnosed until I was really ill and I was lucky to survive at all. You really do not want to go there, it is truly hellish and is a slow, hideous way to die. You should see your doctor to get more medication and get them to do a blood test to check for vitamin deficiencies which may be of significance. If you get your thyroid test results and post them here (including ranges) people will advise if they are not optimal. You could consider trying alternative hormone therapies. I feel much better on Natural Dessicated Thyroid than I did on levothyroxine which left me feeling one dimensional, and very fat and tired. I felt my life was not worth living on it. Unfortunately the NHS does not approve of NDT so it is a lonely road to travel, but I have never looked back. You can also add T3 to levothyroxine which helps some people here. It is expensive in UK and can be hard to get prescribed but some do get it.
You will need to start back on Levo ASAP. The longer you are missing this, the worse you will feel. When you see GP for new prescription also ask for blood test for levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells. Common to be very low with thyroid issues.
Also if you had thyroid removed due to Graves have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid.
Blue Horizon - Thyroid plus eleven tests all these. £99
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
If you are going to do the private test, You will need to wait 6 weeks, to do the test from when you restart taking Levo, to get an accurate result.
Also do you know Levo should always be taken on an empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but lots of us find taking at bedtime is more convenient and sometimes gives better result
Long research article - final conclusion paragraph below
"In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in Quality of life to occur."
You are not being kind to yourself, in fact you are punishing yourself and your family by not taking your medication. You are unwell and need support and help, and may cause irreversible damage to your body if you do not restart some form of thyroid replacement medication. Please seek an emergency appointment with your gp, I know it is hard and that GPs can be unhelpful but YOU are worth it, there are many people on this forum who have fought through and now have better lives: by taking that first step you could be one of them too. Goodluck.
If your thyroidectomy was because you had thyroid cancer you risk recurrence by allowing your TSH to soar without Levothyroxine. You may have been feeling low if you are not on an optimal dose of Levothyroxine. See your GP as soon as possible to get another prescription. You should be tested 6-8 weeks after resuming Levothyroxine. Ask for a printout of your thyroid results and ranges and post them in a new question for advice.
Without thyroid replacement you will suffer major organ damage and failure which might be irreversible. After one week without Levothyroxine you will have half the Levothyroxine you normally take left in your system so may not be feeling unwell. By the end of the second week you will be feeling the lack and will be cold, fatigued and probably experiencing aching joints and muscles. Symptoms will become worse the longer you stay off Levothyroxine or some other form of replacement and recovering from being off medication can take weeks and months.
I also have no thyroid. 4 weeks off meds my TSH was 107 and both FT4 and FT3 were considerably below range. I was cold to the core, exhausted, in considerable pain and could barely make it from the bed to the bathroom. It took almost 2 months to replace my low FT4 and FT3 and bring TSH <0.1 and for the worst symptoms to improve but it was almost 6 months before my hair stopped shedding and my dry skin stopped dropping like confetti.
macc2017 Please take on board the advice already given about going back on Levo.
Then, after you've been back on Levo for 6 weeks, my suggestion would be to do a private fingerprick test with Blue Horizon which does full thyroid tests plus vitamins and minerals google.co.uk/search?q=blue+...
This will give your FT3 level, which the NHS rarely do, and is the most important test. As you don't have a thyroid, it could be that Levo alone isn't working for you and you need either the addition of T3, T3 alone or natural dessicated thyroid (NDT). Also, you will know if there are any nutritional deficiencies which may be stopping Levo from working. Make a new thread with these results for members to comment.
Important to be back on Levo for 6 weeks as it needs that long to build back up in your body and give an accurate result.
i know some may say come on pull your socks up man and get on with it but im not seeing it that way at the moment.
my wife when i was on the tablets did not understand my moods and does not understand anything to do with my illness which does not help at all as feel i dont have anyone to talk to or anyone who will understand me.
for some reason since i stopped taking tablets i have kind of felt im free of it and told the illness that its not getting back into my body ever again(yes i know it sounds mad) and i will keep saying that.
i have had mental health problems in my life where i do things to hurt myself which maybe is what im trying to do now and im not sure why i do it.
for a few years now i never sleep at night so im awake till 6 or 7 in morning and up again at about 1pm which since i have been on them tablets i cant get out of it.
i just want someone or some people to understand how i feel and not just see me as a moody 41 year old man.
but as i say i feel free now that i stopped taking tablets last Friday and i dont feel any worse by not taking them.
i have tried to take my own life before by taking overdose of tablets which did not work so maybe thats what im trying to do now by not taking them.
Hi! Really sorry you're feeling so horrible. I think you need to talk to the right people about your different issues. Have you made an appointment to see the doc yet? Ring them today at 8 am or 12 noon. Tell the receptionist you think you need a blood test. I really advise getting back on the levo, it's possible you need a higher dose. It takes six weeks to work and then six weeks for your body to catch up, so you might take ages to feel better either way. Sorry! Go on, get on the phone! M x
Lots of us suffer even more because our friends and family cannot understand because we don't look sick, we look fat and lazy.
Its not been posted recently but here is the Spoon's Theory. The write had lupus, but it can just as easily apply to a whole host of invisible illnesses
You could ask your wife to read it. I doubt she is being deliberately nasty - its just very wearing living with someone who is, quite frankly, not a lot of fun. And the fact you are depressed will not help her any more than it does you.
The rest of what folk have written above is sadly all too true. You have no thyroid, and must take medication to make up for what you cannot make yourself. There is no choice. You are 41, and it sucks, but the alternative sucks even more.
Go and see your GP and tell him/her all about it. You need your medication, but you may also need more help with the depression.
I felt better (mentally and muscle pain gone) when I stopped taking levo. But within a few weeks I was falling asleep by lunchtime. Go to your gp and ask them to refer you to an endo. I was put on t3 and have slowly improved since. Good luck.
You are quite correct - you WILL feel better after stopping taking levo when you don't have a thyroid. Been there, done that, got the T-shirt!
BUT, A VERY BIG BUT, that will only last for a week or so and then gradually you will start to feel a lot worse than you did before, until eventually you will be unable to get out of bed at all and even worse.
Get back to your doc asap and get some more pills, and better still go to the pharmacist and ask for an emergency supply if you cannot get an immediate appointment.
Without a thyroid you would probably feel a lot better if you started taking NDT, but it is very, very unlikely that your doc would supply you any, but no harm in asking considering your actions. NDT=Natural Desiccated Thyroid, often referred to by the brand name Armour, but other brands are available which are far cheaper.
Hi there, tell your GP that Levothyroxine made you feel really ill so you had to stop taking it and ask if you can try Liothyronine (only) instead because you definitely need t3 in your body. Good Luck!
I would get back on the phone and tell them that you have tried to commit suicide and thinking of self harming, I'll tell you now, they will have you seeing a doctor that same day!
I say this as it was the same with my husband when he attempted suicide, he was in with a gp within the hour and saw the mental health services that same day too.
Go and get some levo again please and maybe speak to the doctors about needing a higher dose/an alternative as you feel so Ill. It can be sorted, you can feel normal again but it will require you to fight right now for your well-being.
i have no trust in the NHS now after trying to get to see doctor today even after me telling them ive not taken meds for 10 days now but i still feel better then i did when i was taking them but dont care now if that dont last much longer.
That is very poor show - just ask for another/repeat prescription. They should be able to print it out and you just go and get it especially if they expect you to wait 2 more weeks to see anyone - it is a very bad scene and I am deeply shocked at the attitude of your GP practice. It is hard enough even approaching them when you are really very depressed let alone having to put up a fight to get help I can fully understand it is simply too much for you to deal with right now. I feel furious that they did that to you. You could try the pharmacy and see if they can give you an emergency supply to tide you over for now until you see the GP - who needs it?
Still feel low and head is all over place and still not taken meds since Dec 28th but still kind of feel ok without them apart from starting to get sore heads but not sure if thats down to not taking meds or stress.
no one still dont understand me and how im feeling even my doctor which is a waste of time.
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Stopped taking NDT thyroid
Hashimotos, low TSH, normal t4, Feeling so ill
Feeling so sad 
I've stopped taking my meds.. help 
