Having had my thyroid removed on the instruction of an nhs specialist as my local hospital who then forgot to adjust my medication so that I ended up suffering from first hyper then hypo. Then my doctor took over.
But nobody ever told me when & how to take thyroxine, so I've been taking it every morning with tea and other meds. Followed by a breakfast cereal and a coffee!
I see from readings that a yearly blood test to check thyroid medication is correct is the norm - I have NEVER had such a blood test in seven years.
My symptoms include; depression, lethargy, alwful sleep patterns, no control over body temperature and more ...
Where do I start?
Written by
Jerry-Lee
To view profiles and participate in discussions please or .
Oh dear. That is exactly my experience however, I took matters in my hands after being educated on this forum, contacted my GP to book the blood tests. The downside is sometimes when you call for the results it is the receptionist who picks up to tell you everything in normal. Currently, I am paying to have regular blood tests privately. I wish you all the best. I do take my thyroxine immediately I get up which is 6am . This gives me enough time to get ready and have my break at around 9am.
Don't call for results over the phone, there's too much room for error in verbal reporting - and, as you say, they tend to just say everything is fine. Ring and ask them to print out your exact results - results and ranges - and you will pick it up at their convenience. It is your legal right to have a printed copy in the UK.
And, it's best to ask the receptionist for this, because doctors are very reluctant to give results, they'd rather you don't know, then you can't argue!
most surgeries will let you have a printed copy, but some charge a little for them; the receptionist can't allow this without GP's permission so expect a few days delay
Legally, I don't think they are allowed to charge for printed copies of results any more. That has been true every since the introduction of GDPR by the EU. (I think).
But my interpretation of the rules could be wrong :
I don't remember where I read this but one doctor apparently got very upset about patients being able to see their records because he considered the records to be his. After all, he wrote them. 🙄
Did he also provide the blood for the blood tests, and do the testing?
I think he's probably more upset about the fact that now people can see the snide and nasty comments he makes about his patients, and know what he really thinks about them.
I’m so sorry you were not followed up properly. You definitely do need annual blood tests. My doctors were good at calling me up until COVID, and then I had to call and ask for a blood test. I would definitely give your surgery a call and explain and ask for a blood test.
I will mention that on here you are more likely to hear from people who are having issues. I am one of the (lucky) silent majority and I don’t worry about when I take my thyroxine. I usually have it with a cup of tea after my breakfast cereal and it’s not a problem. I’m not sensitive to a particular brand either.
It may just be you are on the wrong dose… but if it turns out you’re on the right dose and don’t feel well, that’s when you need to look further at these details.
I do try to take other medication away from thyroxine - I once took some oily tablets and I think I stopped absorbing the thyroxine quite so well, so now I play safe and leave it a few hours.
1/ I have no idea whether or not I get the same brand in each prescription. [I am obviously to dumb to have checked before] but I will from now on.
2/ Been taking 100 micrograms all the time.
As of this morning:
Up at 07:00 take Levothyroxine, return to bed listen to music (or whatever). Then get up at 09:00 (am a pensioner now so no need to get up earlier) take other meds with tea. Then breakfast followed by coffee. Then rest of day and whatever that entails.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
I will try to utilise it in the best possible way when I see my GP. Thank you so much!
Without wishing to be a pain or seeming like a hypochondriac. Below is a list of my current meds. Could you please give them a quick look to see if any of them might be problematical.
Celluvisc 1% eye drops 0.4ml unit dose - one drop to be instiled four times a day
Cetirizine 10mg tablets - take one daily (Only when required)
Clopidogrel 75mg tablets - take one in the morning
Folic acid 400microgram tablets - take one daily
Lansoprazole 30mg gastro-resistant capsules - one twice daily
Levothyroxine sodium 100microgram tablets - take one each morning
(Discovered these are Accord Brand)
Perindopril erbumine 4mg tablets - take one daily
Pregabalin 200mg capsules - one twice daily
Vencarm XL 225mg capsules - TAKE ONE DAILY
Zopiclone 7.5mg tablets - take one at night
Again, many, many thanks for imparting your knowledge.
in answer to your question about the reason behind my thyroidectomy ...
Well it was like this; At a business meeting one day when without notice I began to get warmer & warmer, then hotter & hotter until ... I collapsed. Diagnosis - Hyperthyroidism.
Got to see a "specialist" at the hospital who put me on pills to bring my thyroid back under control, only the results were better but not great. So after about six weeks he said, "You'll have to take the nuclear pill and have it destroyed".
Being stupid I assumed he knew what he was talking about and if that was the only solution, I had no choice in the matter. So that Christmas My daughter and I sat on opposite ends of the sofa as instructed. Also as instructed I resumed my medication. Result - Passed out again at the end of January. Diagnosis - Hypothyroidism.
Saw my doctor (at the time) who said, "Don't listen to the specialist and don't go back to him. I will change your medication." He prescribed the 100 Micrograms dose of Levothyroxine which I am on to this day but never gave me any instructions as to how & when to take.
And to think I waited seven years before questioning what had been said and done!
thanks for that. I did and I got results. Not no interactions but several, mostly to do with thyroxine absorption. So clear that getting the right dose is gonna be a little more complex than my initial "Here, take these and go away" presription.
If you decide to normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Morning and welcome 🙏 the advise in the above is confusing I know. It all confused me at the beginning but you will get the best if you keep reading and be your own advocate. I’m quite new to all this but the advice on hear has been fantastic and incredibly knowledgeable. It may all seem overwhelming at first but it gets easier…….. promise
Try taking Levo with just water, away from other meds and supplements and at least an hour before food and coffee. I often take mine in the night when I get up for the loo. Levo is a funny hormone and a lot of things your doctor won't tell you about can interfere with it. See if it makes a difference. You do need to have your bloods checked as well.
Why? Well it was like this; At a business meeting one day when without notice I began to get warmer & warmer, then hotter & hotter until ... I collapsed. Diagnosis - Hyperthyroidism.
Got to see a "specialist" at the hospital who put me on pills to bring my thyroid back under control, only the results were better but not great. So after about six weeks he said, "You'll have to take the nuclear pill and have it destroyed".
Being stupid I assumed he knew what he was talking about and if that was the only solution, I had no choice in the matter. So that Christmas My daughter and I sat on opposite ends of the sofa as instructed. Also as instructed I resumed my medication. Result - Passed out again at the end of January. Diagnosis - Hypothyroidism.
Saw my doctor (at the time) who said, "Don't listen to the specialist and don't go back to him. I will change your medication." He prescribed the 100 Micrograms dose of Levothyroxine which I am on to this day but never gave me any instructions as to how & when to take.
Never once (until now) did it occur to me to do some decent research of my own, never in my wildest dreams did I expect to get such a great response as I have to this post.
OK - so it sounds as though you were diagnosed with Graves Disease - do you have the medical evidence of your diagnosis and your TSH, T3 and T4 blood test results at diagnosis ?
The antibodies unique to Graves Disease are either a TSI ( a thyroid stimulating ) or a TRab ( a thyroid receptor blocking ) antibody.
As you can see one set of antibodies stimulate your thyroid and metabolism whilst the other set block your thyroid receptors causing the opposite set of symptoms. At any one time one set can be dominant and there is a middle ground where they burn each other out and you may feel relatively ok.
The anti thyroid medication, usually Carbimazole or PTU ( Propylthiouracil ) is usually administered by endocrinology at the hospital for a 15-18 month window with a view to symptom reduction and your T3 and T4 levels blocked by the AT drugs until this first phase of the disease is over.
I have to say that at my very first endo appointment I was told I was to have RAI thyroid ablation the following year and in 2004 I didn't know any better.
OK - so the RAI slowly burns out your thyroid in situ and you have, in effect, been flipped from being a hyperthyroid patient requiring hospital management into a hypothyroid patient which is seen as being easier to manage in primary care by your doctor.
The dose of RAI is somewhat not as measured as you might think and there seems little knowledge as to how long it takes for this toxic substance to totally disable your thyroid.
As you thyroid dies you will need the support of thyroid hormone replacement generally in the form of monotherapy with T4 - Levothyroxine and you dose of T4 may change as symptoms wax and wane with varying doses.
I was immediately put on 100 mcg T4 - when discharged out into primary care.
Graves is an auto immune disease, there is no cure, but now you haven't a thyroid it's thought it is no longer life threatening, as you haven't a thyroid - so to draw a simile you've now lost your engine so you can't go into over drive ever again.
Primary hypothyroidism caused by RAI ingestion s said to be more difficult to treat.
i have found treating hypothyroidism much more difficult than treating my Graves with the AT drugs and if I had my time again I'd stay on long term AT drug medication.
It is essential that you are now dosed and monitored on your T3 and T4 blood test results and not a TSH - though I'm fully aware that maybe all you experience in primary care.
There's a lot to Graves Disease and you might like to read around on the Elaine Moore Graves Disease Foundation website - Elaine went through RAI and with continued ill health, and being a medical technologist started researching this poorly understood and badly treated auto immune disease for herself. Elaine now has several published books, and a respected, leading researcher with a Stateside forum with a World wide following.
Best bet now is to get a full thyroid panel run and post the results and ranges back up on here and everything will be explained to you.
You'll also need to become your own best advocate in your treatment so start by reading up on the forum and on people's profile pages.
I now manage Graves, thyroid eye disease caused by the RAI, and hypothyroidism and have been self medicating for over 4 years now with full spectrum thyroid hormone replacement and have my life back thanks in the most part to this amazing forum.
so much information. Thank you so much for taking the time to respond in such a thorough and detailed way.
It's been less than 24 hours and already I am almost overwhelmed with what I have found out. Why I didn't visit this forum before will always be a testimony to my stupidity.
Well, there's no time like the present so get reading and if with the awful brain fog, reread and read again, and it does all sink and ask questions as that's is what the forum is all about.
It's a bit like a jigsaw puzzle but once you get a few corner pieces installed it all makes perfect sense and you will be supported throughout, whichever and what ever you choose to do to regain your health and wellbeing.
Find the information asked for and your original diagnosis - it might make sense to register for online access of your surgery records as hopefully the hospital letters should be there too if you can't find your copies - we are all now, legally entitled to copies of all our medical records so you are not asking for anything untoward.
Well I could say the same about myself but for the fact this forum wasn't around in 2004 - but that's exactly that isn't it :
When unwell you seek medical advice - just as when your car won't go you see a car mechanic.
We trust the system, and the " first do no harm " dogma is lodged firmly into our memory - and just as we attempt to excel in all that we do - we presume the same is true of the professional, especially the medical profession.
I'm not stupid and neither are you - you will become your own best advocate and empowered by reading around Graves Disease and knowing what treatment options you do have and start to take back some control of your own health and well being.
PS; You have not had a thyroidectomy BUT had RAI thyroid ablation - they are two very different options :
These days it seems it's not so much Hippocratic Oath as Hippocritic Oaf!
As for having Graves Disease, oh I do wish it had a better name, "Graves Disease" sounds like something that a cemetery groundskeeper would spray for. (We buried my uncle last month and now he's got Graves disease, poor sod.)
As for the RadioActive Iodine or I-131 (Better than U-235 I suppose) Ablation.
Ablation = Sounds disgusting!
Sounds even worse when you look it up;
Separation or detachment; extirpation; eradication. (Sounds pretty final)
Surgical excision or amputation of a body part or tissue. (Yuk!)
The erosive processes by which a glacier is reduced. (Ooh, cool but would take too long)
The dissipation of heat generated by atmospheric friction/The reduction or removal of heat-protective surface material by aerodynamic friction. (I've never heard anyone from NASA refer to it as re-entry ablation)
Just so long as it doesn't interfere with my Gag Reflex - You know the special part of you that responds to a gag or forces you to make a gag about something.
I really don't know where I'd be without my sense of humour! I don't want to take life seriously, I've seen people who do and I've seen what it does to them! Not for me, no sir!
But (seriously) many thanks for all you have said, it has been most edificational.
You start from today Jerry-Lee and am sorry you found yourself in a situation that did not improve your health initially.
Take your (I assume) levothyroxine on an empty stomach with one glass of water and wait an hour before you eat. The majority take their thyroid hormones when they awake, with one glass of water and wait an hour before they eat.
Some people prefer a bedtime dose -
When having a blood test, make the appointment for the very earliest blood draw - even if you make the appointment weeks ahead.
It is a fasting test and do not take thyroid hormones before it, take it afterwards. This gives us the best results. Always request a print-out of your results, for your own records and you can post results for comments.
If you're in the UK, there's not many doctors who know how best to treat patients.
Also request vitamin B12, Vit D iron, ferritin and folate to be checked too.
Where do I start, well you start here on this site, and good luck to you. Sorry for the lack of treatment too.The knowledgeable people on this site got me well after my thyroid was removed and you
can get well too. Seven years is a long time without help.
Thank you for your kind words. We all started out as new and often confused lol. I hope we are always able to make people feel welcome, reassured and informed. Information is power and the first step in helping ourselves feel better. Take care and please keep us updated on how you get on.
Medical professionals have no idea how best to treat patients who have a dysfunctional thyroid gland.
We find that out when we, the patients, is diagnosed - if diagnosed as I was not. I had to diagnose myself and like many on this forum, we had never heard of hypothyroid or hyperthyroid.
the one thing most professionals don't have that obviously people on here have is the knowledge gained through personal experience and clearly empathetic knowledge is worth so much more than mere observational opinions.
Another awful thing happened when my mother's GP told her she needed no more B12 injections (Pernicious Anaemia) and both my sister and myself said 'that's good Mum'. Little did we know what hell was ahead as the doctor's advice caused my mother to develop stomach cancer. Absolutely awful.
Shaws when I read the first time you said this .I laughed so hard . But it's not a laughing matter. It's a crying shame . How can we trust our lives with Dr's like this? Dr's know so very little a bout thyroids .
All of our 'older' doctors - now retired - diagnosed by symptoms alone and then gave us NDTs (natural dessicated thyroid hormones - now removed from being prescribed in UK), NDTs saved lives from 1892 onwards until - in UK -they removed this from being prescribed and left many, many patients in distress and worried about how they would progress.
The 'experts' thought that was a 'good idea'!!!
GPs - in these 'modern' times know nothing at all.
We laugh because the statement is so ridiculous but truthful.
nope, no options as such. Seems that once the "specialist" got fed up with trying to get my meds in order [about 5-6 weeks] it was, 'It will have to come out, surgery or pill? Pill will be better. You'll have that.'
Knowing nothing except that everyone was telling me what a genius specialist he was - I just went along with it.
We live (if we're lucky) - We learn (if we're luckier still)
Funny how, if I am researching for a storyline & plot - I can spend months doing it.
Yet when it came to my own health & life - I did nothing except trust in others.
Perhaps a fault of my upbringing when, as a child, the family doctor was a family friend and knew it all and would never steer you wrong.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thyroid issues
Thyroid issues
Thyroid confusion 
