I keep forgetting my medication, feel anxiety and depression worsening . I have been told I need to take my medication for 3 months solid by the gp before they will recheck my levels . I can’t wait as I am sure my levels are wrong . I am so silly
Help keep forgetting my medication : I keep... - Thyroid UK
Do you have a thyroid condition?
Are you talking about forgetting your thyroid meds?
What are you taking?
What are your most recent results, including the reference ranges?
You need to find way to remember to take your medication.
I take mine early morning before I get out of bed, so I put my tablet in a little pot, and put it on my bedside table along with a glass of water, when I go to bed, then I can't miss them in the morning.
Or if you have a mobile phone, set the alarm and have it on repeat every day.
Or get a weekly pill dispenser and leave it somewhere obvious like in the kitchen by the kettle, or wherever suits you.
Hi yes I have an under active thyroid. I am on 100 mg of levothyroxine . My TSH is best between 2 and 3 . Not had it tested in 12 months . Asked for a review but got told I need to wait till I have taken my meds properly for 3 months . I keep it in my purse as I am on placement sometimes so not always at home . Need to get my alarm set might use my Fitbit . Thanks for the advice.
Get a weekly pill dispenser
Fill it up and then if you forget one take it along with next pill
Setting an alarm on computer/watch/Fitbit etc etc
Many people take Levothyroxine soon after waking in morning, but it may be more convenient and more effective taken at bedtime
Ask your Gp to test vitamin D, folate, ferritin and B12 at next test
These are frequently too low when on Levothyroxine, especially if you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
Thank you. I will request those tests next time
I have under active thyroids and only once I messed up with my tablets instead of taking 100 levothyroxine I took 50 and they went all messed up so I had to start over again it’s important to keep a time to take ur medication I take them always at 6-00am in the morning and breakfast at 8-00am so pls keep ur time ok
I was told to take my thyroid medication with a good amount of water same time everyday one hour before eating. I set my phone alarm for 5:00 AM and 6:00 AM. At 5 I take the pill and go back to sleep for an hour. When alarm goes off at 6 I get up and have breakfast. Before I got into this routine I was out of whack. Once on this routine I became very settled. Give it a try. Best wishes.
Some people here have male and female family members with hypo so quite possibly it is in your genetic make up. It is is usually stated that you are more likely to suffer if a close relative has it as well. Few people get it via iodine defficiency in UK these days (once referred to as Derbyshire neck far from the sea and fresh fish) which would point to geography as a causal factor. Mostly hypothyroidism here is autoimmune in origin and can be related to genetics
Sorry to hear that Den1987UK.
All the women in my family get hypothyroidism bar one who is hyperthyroid. Three of them had non Hodgkins lymphoma of the thyroid which is very rare (1 in 2 million in the UK I believe ) strangely my brother died of a non Hodgkin’s lymphoma as well but as far as I know he did not have thyroid problems - but he was quite young. I asked my gp. if these things might be genetically linked and she referred me to Leeds genetic department for testing. They told me there was a genetic propensity for NHL in the family that showed in my genes but there were no screening tests for it but to be wary if I got a lot of unexplained flu type illnesses and ask for a check. I since got hypothyroidism but no lymphoma. Might be worth asking your GP. They never tested me for relevant thyroid genes. Too many of us have thyroid disorder for it not to be genetic. I did have further genetic tests at Guys but despite advances they were far less emphatic than Leeds, and more interested in inherited disorders in my father’s side which Leeds had mentioned but had little to go on. Guys had far more data as more relative hazme succumbed with this and that by then. I think Leeds are very highly regarded in the field and appeared to be very on the ball, streets ahead of Guys. Not everyone wants to know this stuff but I retain a keen curiosity to know as much as I can about my illness, genetic predisposition included.
Hello TSH110 I know my mum has a bucket loads of illnesses Arnold Chiari Malformation where the brain slips into the cervix of the spine at the base of the skull putting pressure on the neck and also intercranial hypertension diabetes heart failure lympodema sellilitis pro lapsed disk arthritis high blood pressure and carpal tunnel.
Thank you TSH110 My mum is doing okay just about but doesn’t have a thyroid problem has been tested but negative even though I think some how it is all related. The fact that me and my brother have hypothyroidism and my mum has many conditions and my dad none apart from nerve damage and spondylitis.
Thank you TSH110 I agree something doesn’t seem right. I know there is a condition called dishormonalgenesis which can be inherited but not sure. Also I get the strange nervous feeling in my breast bone been told it’s anxiety but not so sure. Also a pain in my throat near thyroid not major just there. Been on 50 mg for a year and a half then 75 mg now I am on 100 mg
Hypothyrodism can give you all sorts of strange symptoms and bodily sensations. Anxiety was a big one for me although you may be told it’s a hyperthyroid symptom it can also occur with hypothyroidism - it is not very nice. I used to get electric shock sensations especially in my knees which could be due to imbalances in magnesium and calcium messing up electrical nerve impulses - I mean how crazy is that? How could you even guess it as a cause? I just called it electric knee and ignored it! I never got breastbone pains but everyone varies. Some people feel like their insides are vibrating! Once you get properly medicated all these strange things should stop. I don’t know about the hormone condition you mention it sounds very serious.
Thank you TSH110 I had electric shocks and hair falling out and still do occasionally but it’s easing a little bit since I have increased the dose to 100 and only been on this dose for a couple of days. Before I had brain fog electrical shocks and aches and pains all over and anxiety was and still is a little severe at times. As for memory that’s terrible. My doctor kept saying it’s in normal range when in fact I felt like crud I knew something was not right. As for the inherited condition dishormonalgenesis it’s a inherited hypothyroidism condition from birth you could have a thyroid born at the back of the throat or positioned correctly at the front but both not producing any sufficient hormones correctly or none at all. Another condition that affects hormones is Cushing’s syndrome or Cushings disease because the adrenal glands which have tumours are on overdrive and produce too much cortisol.
It’s grim recovering it can take time. Seems you have similar symptoms to what I had - save the hair - it thinned but hung on in there! I had a big improvement when 75mcg was increased to 100mcg it was not at all linear it was still not enough but when I went up to 125mcg I shot over, so it was quite a sudden thing getting close to the optimised numbers. I was unlucky in that I needed some T3 as well as T4 and Levothyroxine did not make me fully better - interestingly all my hypo relatives found it sorted them out fast so I drew the short straw there. Chances are you will get better on just T4 once the dose is right - it is a minority that have persisting symptoms. Some here suggest vit and mineral tests and supplementing. I found once I got the right medication levels, all that stuff righted itself. Sounds like you do have deficiencies. Hypo affects the gut and it’s ability to digest food properly. I went gluten free which helped. 100mcg is quite a low dose I was finally put on 100/125 alternating daily . Everyone varies my sister needs 175mcg she’s tiny compared to me. You are supposed to wait 6 weeks before increasing a dose because the Levothyroxine half life is that long so you will only reach the maximum in your blood long after the increase. Don’t increase until you have a blood test to see how the levels are 6 weeks after the increase. Your GP may not be happy that you upped it - for good reason as you can increase too much too quickly and go over, A few days is not enough to know how the increase will affect you - but 100mcg is not a massive dose. I react to the stuff very quickly, but that is unusual. Is your GP doing blood tests six’s weeks after an increase?
You do sound like you had the same things I am going through with being too low for too long. Yes my doctor is and I am trying to get a copy of medical records that will or should tell me anything I need to know. Having a MRI brain scan done in February because of my mums condition but paying for it myself because my gp won’t fund it which is strange.
They must be very expensive but at least you will know you have have all the best tests and done everything possible diagnostically. I am so phobic of scanners you’d not get me in one unless I was totally out for the count! Pity you cannot donate any scan sessions to others like you can donate your organs!
Hello TSH110 That would be good because it would save lives potentially. I am a very kind soul who if I had millions of pounds would donate it to this awful condition and to help others like me and you and grey goose and jillygirl. It’s what I would do and to end all soya in any food which I heard is bad and to find better treatment and medications and to provide the best care possible. I know when I was younger in my twenties I was living life but because of my mistakes namely smoking which I quit last year and mistakes out of my hands I now live with this condition and others at thirty two years old and for a guy like myself who was happy go lucky that is devastating. If only I could change what I did to look after myself more but I was blind in my mind to what was happening to me but now I see.
I would not worry about the past and being human rather than a saint! You can’t change that so it’s wasted energy to fret over what has been and gone - it is what it is. I was a 60 a day fag smoker till I was 30 - they say by 7 years of stopping you have a totally new set of lungs which is heartening! I drank like a fish too. Bit of a wild child all round really. I resolved to be a healthier individual and was very careful after that to be kind to myself. But I still succumbed to hypothyroidism. I think it is often bad luck, genetic/other factors rather than neglect that sets it off, some say viruses are key - well those blighters are everywhere waiting their chance. No one really knows. As long as you are doing everything you can to keep healthy from now on that is what matters. I avoid soya. I used to be tofu mad but I have banished it from my diet. It seems to be in everything you have to read the labels like a hawk! Oddly, I did read that smoking has a protective effect keeping hypothyroidism at bay so perhaps stopping allowed it to surface in your case. I still think not smoking is a major step towards better health. I started to ache like hell when I stopped but nicotine is a strong pain killer apparently. I felt loads better otherwise.
Hello TSH110 good evening yep I used to until I read about cholesterol and thyroid and heart. Clogged arteries not good. I now look at things in a different way than I used to. The blood circulation system is like plumbing too little blood getting through causes problems. I had thick blood high haemoglobin and was referred to haematology on a number of occasions when I smoked. Said nope you have to stop smoking and look after yourself or we are doing venesection blood taken out until at right levels.
You’d find Dr Malcolm Kendrick’s blog interesting about heart disease. I think he is spot on he goes against the current thinking which I think will eventually be abandoned in favour of his explanation. I’ll post a link there will be lots of back posts to read. He writes very clearly and is quite witty.
He is on our side about thyroid disorder and the way it is so badly treated too.
50mcg is a starting dose and after blood test it is usual to get increments of 25mcg every six weeks until the TSH is 1 or lower. Unfortunately many doctors seem to believe that once TSH is somewhere in the 'normal' range we're on a sufficient dose and do not increase it.
The aim, for us patients, is a TSH of 1 or lower and a Free T4 and Free T3 towards the upper part of the ranges. These two are rarely tested.
Levothyroxine should be taken - usually when we get up with one full glass of water and wait an hour before eating. Some prefer a bedtime dose and if you decide to do this, ensure stomach is empty and last have eaten about 2 hours previously (3 hours if you've had a heavy meal). If you take a bedtime dose and having a test next a.m. miss p.m. dose, take after blood test and p.m. dose as usual.
Many doctors seem to think that once the TSH is somewhere in the range that we're on a sufficient dose. This isn't the case, the aim is a TSH of 1 .
You have to tell him/her that the aim is a TSH of 1 or lower. I know many doctors believe that if it is below 10 that we're on a sufficient dose. If you're not a member of Thyroiduk - please join as the more members the stronger the voice as a collective. Be calm and positive.
Just tell him/her straight out that he's wrong and the aim is for your TSH to get to 1 or lower and that you need sufficient thyroid hormones to enable your body to function as normal, and that T3 is the Active thyroid hormone - not T4. Tell him/her that our brains/heart need the most T3. T4 is inactive and has to convert to T3 - the Active thyroid hormone. I doubt he's aware of that fact.
Don't beat about the bush and say that you've been informed that, once diagnosed, you need sufficient hormones to bring TSH down to 1 or lower (and no - you wont be taking too much hormones). (don't be angry with him as you recognise he seems to be doing as directed).
Tell him/her that you'd like a Full Thyroid Function Test which is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if antibodies haven't been checked before). Rarely are FT4 and FT3 checked. Just tell the doctor you're fed up with not improving your health and that you're now a member of Thyroiduk and whose advice you're taking. (I must also state I'm not medically qualified but had to diagnose myself and by that time TSH was 100 and a couple of days before I got that result the GP phoned to say all of my 23 blood tests were fine and I had no problems! You can also say there's a forum on Healthunlocked and members are assisting you.
Also tell him/her that you know that doctors aren't well-versed in one of the commonest autoimmune conditions and relying upon the TSH alone (which is from the pituitary gland - not thyroid gland) but that you are studying/learning as you want to recover your health.
Also insist that your B12, Vit D, iron, ferritin and folate are optimal. Tell him/her that our heart and brain need the most T3 and if you've insufficient levo to convert to T3 you wont improve your health.
Tell him/her that you're now learning about hypothyroidism and are a member of Thyroiduk.org.uk. The more members we have the stronger we become and Lyn Mynott works hard and has already spoken with The Lords about the disaster of T3 being withdrawn.
It's such a struggle and it has to be that student doctors don't learn anything about dysfunctions of the thyroid gland at all. Whereas, in the past and before blood tests, we were diagnosed upon our clinical symptoms alone and given NDT (natural dessicated thyroid hormones) - before levothyroxine (T4) was introduced along with blood tests.
NDT is the very original thyroid hormone replacement until those 'at the top of the tree' made False Statements about it in order to get it withdrawn.
It contains all of the hormones a healthy thyroid gland would produce i.e. T4, T3, T2, T1 and calcitonin.
Have you asked at reception? The doctor will probably avoid giving you results for as long as possible. He obviously knows nothing about thyroid and is struggling to keep his head above water - but he doesn't want you to know that! Remind them at reception that they are breaking the law by not giving you your results when requested, and that you can take steps to force them to do so.
We have to educate ourselves if we want to recover our health. Many members have to source their own medication too. This should not be the case but without the proper dose, our body cannot function as our brain and heart as well as the millions of T3 receptor cells need T3. T4 (levo) is supposed to convert to T3. That's why it is advisable to get a private test on an occasion as GPs don't test FT4 and FT3.
T4 is an inactive hormone and has to convert to T3.
Thank you shaws for the helpful information I cannot believe the NHS would put peoples lives at risk like this. If it was their family member they would do something. T3 should be made available again and the ranges of TSH on the NHS guide lines need to change and better testing and more better knowledge and training by gp’s and doctors is what needs to happen.
Hello Jnetti Thank you it could be the T4 results number. Even I thought that was strange. Think he said as long as it don’t go over 24 not sure what my gp is talking about sometimes because he is always in a rush and I feel doesn’t care much . But I have taken to increase the dose to 100 myself because I did not feel right on 75 mg. I feel a little better but not much on 100 mg. Also my gp likes to be evasive and I am trying to get my medical records at the moment.
As I think someone else said, ask the receptionist. If your practice has several doctors you could also ask if there was a different doctor you can see. Not dissing the other one of course just that you need someone to talk to who might have more time to help. Receptionist might not know much medicine but it doesn't take them long to suss out the doctors themselves!
Booking a double appointment is a good idea too, so the doctor would have more time to talk with you.
"it could be the T4 results number. Even I thought that was strange. Think he said as long as it don’t go over 24"
Yes that must be the T4 result.
Usually doctors only take notice of the TSH result and due to the fact they've been told not to diagnose someone until it goes above 10 that patients suffer.
TSH means thyroid stimulating hormone and it is from the pituitary gland - it rises if our thyroid gland has a problem and doctors have been told not to diagnose until the TSH is 10 (which is ridiculous). The pituitary gland tries to pump out more thyroid hormones. Once diagnosed we like TSH around 1 or lower whilst some doctors seem to think that if it is up to 10 that we don't need more levothyroxine.
We have to educate ourselves and ask questions.
Als ask for B12,Vit D, iron, ferritin and folate to be tested. Everything has to be optimal.
I’d be decked with that number! Dr Toft recommends TSH 0.2 - 0.5 and the free t3 and free t4 in the upper 1/3 of the ranges. Once your practice gives you all your result print outs, you can check to see if these numbers are being reached (doesn’t sound like it). ThyroidUK have a copy of the Toft article in Pulse Qn6 staying this, which you can underline and take to your GP to try and get them to optimise your dose correctly. Just email admin for a copy. Thyroid UK is recommended by NHS choices and Dr Toft is an eminent endocrinologist and Surgeon to the Queen when she’s in Scotland....should you get any GP resistance those facts might win him over. He might even appreciate the guidance. Once you get to those numbers you should feel a lot better.
You have to get a request from the gp for a dosette box . My TSH was 10.0 but they always used to say I was borderline but I kept going back it took 2 years to get diagnosed. Even if my TSH levels rise up to 4 now I symptomatic. I am going to see a different doctor for some bloods . I hope you get some answers soon
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that
most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
Thyroxine replacement in primary hypothyroidism
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Mine has never been 2.0 and even when it is 4.0 they say it is normal so I have to remind them of what the levels should be . I will request a blood test ASAP . Thank you
Vast majority of GP's think TSH anywhere within range is fine ....it isn't
Majority of population without Thyroid issues have a TSH around one
Median TSH graph
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
There's nothing 'normal' about a TSH of 4. The reason is that they've been directed not to diagnose a patient with hypothyroidism until TSH reaches 10, which is ridiculous. or to prescribe levo and when it gets within the 'range' up to 5 that we're on sufficient dose.
The fact that we have to read/learn/ask questions about one of the commonest forms of hypothyroidism is ridiculous. We wouldn't expect to do that for other medical problems we may develop.
Thank you for this great information.
I purchased a fitness watch that has ability to set multiple vibrating alarms that I set ...for example I take meds at 10am so I set my alarm to go off at 10, 10:15 and 10:30 it gives me 3 chances to remember to take my meds....I have 4 different alarm times that go off through my day for all my meds and I never take my watch off only to charge it.
I can't remember a stinking thing anymore, this is how I survive my medication nightmare.
P.s. if I know I'm going out I put my meds in a pill holder and put it into my tote/purse the night before.
I use separate little plastic pill boxes just for thyroid meds. I can't remember the chemist but you can surely get them online otherwise. They are different colours for each day of the week. I keep them on or in the bedside cabinet and put one ready every day near to hand (take them at night as it's more convenient). Impossible to take a double dose by mistake as the one for that day is now empty.
I can’t do that as dogs and kids about
Put them on a high shelf and then you will soon get used - every day - to take your dose. I find it easier to take when I get up, with one full glass of water and wait an hour before breakfast. Others prefer a bedtime dose.
You just fill the box once a week.
Try to take on board how important taking the tablets are for your health even though it is unnatural. I have been lucky in that no matter how bad I felt I seemed to be able to remember to take them, perhaps something subconscious is at work. I suspect our bodies are probably not too wild about tablet taking of any kind and need persuading to coooerate) I take mine on waking but the last thing I do before going to work on a week day. I always have a stash in my work bag just in case or if I should get get caught up somewhere unexpectedly without a supply. Your Fitbit alarm might be helpful as a reminder. I found keeping everything simple and sticking rigidly to the same routine helped me get through the worst of it as it reduces the number of things you need to remember if they are an integral part of the daily pattern you follow. Boring tho! Hope the ideas suggested here help you to take the medication you need to stay well 🍀☘️🍀
I do but I am caring for my partner , doing a degree and I just need to get a better routine. Thank you x
Sounds pretty tough but impressive you are managing all that when you are poorly with hypothyroidism - it is easy for me to say that about the medication when it was one of the few things I was able to do when I felt dire (a degree? Forget it and I could hardly care for myself let alone anyone else) I know a few people on here find taking the tablets as advised really hard. I worry that your GP is refusing to monitor you because you have been honest about the struggle and it rendering the blood tests unreliable, the knock on affecting you being put on the best dose, all of which will compound your condition. It can be a huge struggle to get back on an even keele again, getting the meds right is really key to recovery. I am sure you will find a way with all the helpful suggestions here. I found and still find having options paralyses me because I simply cannot make up my mind, it has occurred to me that my lack of adventure/being set in my ways could be a way of dealing with it by removing choice with a set order of doing the same things every day! But that’s me.
Hello TSH110 yep it’s hard for all us but if we let it win then all hell breaks loose we still have a life to lead and a ton to do, but I have my family and dog my beautiful Reah to think about they are my world and would not trade them for the entire earth. Even with the worst symptoms like burning feet and dizziness and mash potato for memory but hay ho. I have to keep going.
Thank you . I will go see another doctor in the new year and explain the situation. I will put a reminder on my fit bit I think as don’t always have my phone. X
Hi Chester, I am assuming the you are talking about thyroid meds, so go get a full thyroid panel blood test via Medichecks (a private blood lab). This will give you full information about your thyroid condition and whether it is contributing to your symptoms. It will also take away the anxiety of dealing with a doctor who will not test you for another three months (it should be six weeks btw).
I think forgetting to take one's pills is psychological, I never forget my thyroid pills, not one even ever, but I often forget my blood pressure pill. I put it down to the fact that I have accepted my thyroid condition as part of my life probably because of the trauma of having had a complete thyroidectomy but I will not accept the fact that I have high blood pressure.