I've literally been diagnosed with hypothyroidism a week ago and started levothyroxine today, and feeling quite irritated really as it's clear to me now I've obviously had this a long time. TSH is 14.7 which doesn't seem great from what I am reading. What eventually got it diagnosed was me seeking acliclovir for the billionth time in the last few years, and one of the nurses finally thinking 'hmm maybe some tests to see why you get cold sores every few weeks' haha.
I'm a scientist by background and now work in clinical trial funding for cardiovascular disease, and maybe I'm being too academic about this but I'd really like to do a thyroid-specific quality of life survey on myself to try to track any changes as I start treatment/try to figure this all out. But all the thyroid-specific ones I can come across e.g. ThyDQoL are behind a license 'wall' or not in scientific publications I can get access to.
Has anyone ever been given a thyroid QOL questionnaire to fill in as part of their treatment/a research study and would be able to share what the points are?
Thank you
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Fweb
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Cripes sounds like you like many of us have been struggling for years... get them to check you B12, Vit D, Ferritin and Folate levels as likely they are all on their knees, also have they tested your antibodies?
I did do a rather good questionnaire when I first saw the Endo but this was based on life before and after the addition of T3 it was about energy, inclination, mood, cognitive ability, memory etc... to be honest being hypo is like constant low grade flu
Also sounds like you could look into Epstein Barr Virus..... get your zinc levels checked as supplementing has helped me greatly
You will find out so much by reading others profiles and our ramblings which sometimes go off subject but are always informative... it's a big old learning curve but incredibly helpful
Thank you for all this! Certainly lots to read and learn, I'm trying to treat it as a 'project' and get myself into a bit of process for seeing what else I can do to get myself on a track to feeling better.
Funny you mention EBV, as from my limited reading around this so far I'm wondering whether this was all triggered by me having glandular fever when I was 16 (I'm now 31) - timelines of symptoms appearing that I'm now realising were actually symptoms and not just 'me' making a lot more sense!
Oh yes, sounds highly likely that was the trigger to an autoimmune attack on your thyroid.
Treating it as a project is a really good way to tackle it as there are a few rules that work for most but inevitably the best treatment is highly personalised so years of monitoring and tweaking ahead
My response is tip of the iceberg just like to put out a welcome, you have come to a great place for your research, we have some top class members who are well up on the science...
Admin will likely swoop in and give you enough links to make your head spin shortly 🤣
Yeah so annoying all these things are paywalled! I've ended up emailing a few of the corresponding authors to see if they can share the actual questionnaire, I've found a few 'samples' of them in supplemental materials but not the full things.
The entire body is reliant on thyroid hormones, particularly T3 the active thyroid hormone, which means deficiency can result in numerous health conditions....and in extremis, in death!
The following should explain the potential impact of this condition.
It is still early days as far as your treatment is concerned...and that will be a long slow process. There is no quick fix for thyroid disease....but there is a fix if the correct medication is provided
I found the best way to track my treatment has been to keep a diary, recording symptoms, labs, medication etc.
I'm a dinosaur so a spread sheet is 21st century option!!
Either will provide the detail you require
To "figure out" this disease you first need to understand the cause and this involves a lot of reading. Quality of Life is the effect and unlikely to provide the answers you initially need......you already know how you feel and how your life is affected.
Once you know the cause then you can work to find your treatment....this will be individual to you. Progress can then be recorded.
feeling quite irritated really as it's clear to me now I've obviously had this a long time.
I fully understand, but...
This is far from unusual in terms of thyroid disease. I'm a rare case but it took me nearly 50 years to discover the thyroid related issues that had combined to leave me barely able to function. Getting irritated by things we cannot change is a waste of energy....been there!!
As the old adage suggests" Don't look back, that's not where you are going"!
(As far as diagnoses and treatments are concerned I'd suggest a good starting point lies in the training of med students...ensuring they are fully conversant with thyroid hormones and their function. Without that basic knowledge many will continue to suffer!)
I hope, following your diagnosis, that you now make good progress.
Thank you for all of this! For now I'm having a go at making an online form for myself incorporating these qol/symptom factors to record these things say every month - as I said I think I'm being too 'academic' about it but I'm just feeling like if I can find a way to make the symptoms I experience 'numerical' as well as a diary, maybe I can better keep track of things and correlate with whatever treatment or supplement I'm trying.
Re the labs, I did ask the GP about having the additional tests and also a cholesterol level done, but they said I'd need to wait til I've been on the levothyroxine for 2 months?! Which again seems a bit silly to me in terms of wanting to have a 'baseline' to then see how treatment affects it, so I've just ordered myself them as home test kits from Monitor My Health (I saw that some other in here have used them and seem ok!).
And thank you for your point about not looking back, I have to admit I did get myself in a bit of a hole last night thinking about how things could maybe have not been so hard along the way - but woken up today trying to be more positive and treat this as a 'project'
We have to wait 6/8 weeks on a steady dose before testing to allow the hormone to settle in our system....the wait isn't "silly" ....otherwise the result may be unreliable.
Your baseline is the set of results you have from before diagnosis.
Do you have a copy of those labs? If not you are legally entitled to request a copy from your surgery.
If you wish advice post them here and we can see what is going on.
Monitor My Health testing is carried out at the Royal Devon and Exeter NHS Foundation Trust laboratory and is used by many of us.
I'm not sure one needs to turn thyroid symptoms and treatment into a numerical exercise in order to make sense of it. In any case dealing with thyroid disease can be hard enough without trying to complicate things by turning it into an academic project.
You may find you have a very straightforward form of hypothyroidism which is readily treated with levothyroxine....as is the case with the majority of patients.
I understand your diagnosis may have come as a shock but most people live perfectly well once they are correctly medicated. Those of us who have arrived here have, for the most part, had more difficult thyroid journeys which medics have failed to correctly diagnose and resolve.
You are not an academic project you are a human being who needs to slow down and start listening to the advice of both your medics and those here who have a great deal of lived experience and knowledge of thyroid disease. Be kind to yourself and learn to listen to your body.
Here, we are all anonymous, but I have no doubt there are a number of academics on this forum. By process of elimination each member is working to find out what protocol best suits them as individuals...and there is no mathematical formula for that. It's often trial and error!
So, leave that "hole" behind, join us on our thyroid journeys and I'm sure that you will gather the knowledge and support you need to move on.
Ah I meant I wanted a baseline of the other thyroid tests beyond TSH, and a cholesterol level done. These are the only blood tests I've had at this stage:
Serum TSH level 14.69mU/L
HIV screen NEG
As I work in the cardiovascular side of things, as soon as it was mentioned to me that there's a link between low thyroid and choleserol, I got the fear haha and just wanted to check I shouldn't be statin-ed. And from my googles seemed like TSH isn't the only good measure to have?
I think for me I just find numbers easier to track than words, so that was my thought in trying to have something I can see a 'snapshot' of where I am and what areas are trending up and down over time, whether I can correlate with test results. But I think that's my 'you can take the person out of the lab' showing hahaha!
Now that you have started replacement treatment with levo this will change what would have been your baseline level for not only TSH ( a pituitary hormone) but also FT4 and FT3 ( thyroid hormones)
I guess most people here would say that a focus on numbers to the exclusion of a wordy description of signs and symptoms is the root of most hypo problems.
Numbers are not enough!
Unlike machines we humans cannot be calibrated to set points when it comes to dosing and testing we need to factor in the human response
I'd suggest you may need to " take the lab out of the person" on this journey!!
Fweb 'Has anyone ever been given a thyroid QOL questionnaire to fill in as part of their treatment/a research study'
The longer you're on this forum reading posts, the more you'll come to understand that QOL is absolutely not a priority for the medics. The vast majority of medics have near to zero understanding of how thyroid hormone imbalance affects QOL. The main aim is simply to prescribe the replacement hormone (levothyroxine) to keep you alive. If you have any unresolved symptoms, they will be either dismissed or treated as separate issues, and various pills prescribed for each of them individually.
Yeah I'm getting that vibe haha. So I think that's why I was thinking, if I can assess a baseline 'score' myself from one of these questionnaires, I can make my own record to try to tell what is/isn't helping.
How much levothyroxine have you initially been prescribed
Which brand
Did GP make you aware to take Levo on empty stomach and then nothing apart from water for at least an hour after
Many people take early morning, but can be more convenient and possibly more effective taken at bedtime
Retest 6-8 weeks after any dose change or brand change in Levo
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
EXTREMELY important to maintain GOOD vitamin levels too
So if not had vitamin D, folate, ferritin and B12 levels tested GP should do these
Or test privately
Have you had thyroid antibodies tested yet?
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
50mg of Accord Levothyroxine, and no wasn't told about not eating before it, just to take it in the morning! Aaaaa so that's my first day of taking it messed up haha.
Thank you for the point about timing of blood tests - I'll definitely bear that in mind with booking my next one (which I need to figure out how I actually do that, as it's not giving me the option on their system haha). By chance my last test was done at 8:45am - so I'll try and see if I can get that slot again and make sure I don't eat/coffee before.
I did actually ask for some more blood tests from the GP, as I was a bit concerned about what I was reading with the links between low thyroid and choleserol, but they said just to wait for 2 months when I have my first review. I thought that was a bit dumb so I've actually just ordered a 'whole health check' blood test thing from Monitor My Health that includes thyroid antibodies, vit D etc etc.
Stop taking any supplements that contain biotin 5-7 days before test
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
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you 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
Be aware
Accord only make 50mcg and 100mcg tablets.
Accord is also boxed as Almus via Boots,
So when you get increase to 75mcg ask for extra 50mcg tablets and cut in half to get 25mcg
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
Will do and thank you so much for taking the time to share all of this - all going straight into my notes!
I take a bunch of stuff usually in the mornings but didn't take any today to check for interactions etc. I'm now wondering whether it may be best to try taking my levothyroxine in the evening to keep my vit D/calcium/etc 'away' from it.
- Osteocare tablets
- Vit B complex
- Starpowa Hormone Support (main thing in it is evening primose oil) and Collagen support (vit C, E, various amino acids)
- CBD
- Occasional rhodiola in morning and ashwaganda in evening when I'm having a bad time at work
I've just gone through waves of trying random things to try to not feel as bad/have bad skin and hair/have breakable bones (managed to break a metatarsal twice this year), but the supplements I take don't feel particularly 'organised' atm. So hoping that the blood test results will help me pin down what I need to be doing.
Did you test vitamin D or calcium or folate or B12 BEFORE you started supplementing
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
No at all tests before I started, the vitamin D was just in terms of everyone in the UK is supposedly deficient haha, and I was recommended Osteocare after fracturing a metatarsal twice this year. B12 was very much an 'I am always tired, what can I take to fix things' purchase!
I'm feeling like the wise thing for now is to stop everything, wait for the home test and figure some things from there.
I don't know any questionnaires about thyroid disease, but if you feel at all interested in writing one you might like this link which contains several symptom lists of varying ages :
I have seen anecdotes on the forum of people being told by doctors that symptoms are irrelevant in thyroid disease - the blood tests are all that counts.
There are also the NICE guidelines and "clinical knowledge summaries" that you might find of interest :
Seems v silly to me! I think I'm just also coming from the view of, whenever we fund a research study through my work now it has to include some sort of person-centric outcome as well as clinical outcomes, and there's various CV specific QOL scores I've come across. So there must be a place for them in thyroid too... but what do I know haha.
Thank you for the links, lots of bedtime reading tonight.
I wish every researcher cared about symptoms. There was a time when doctors were expected to make people feel better. Now they (doctors) are quite happy to dismiss patients whose blood tests are all in range, even if their symptoms still exist.
Fweb I was on Accord/Almus for about 10 years 100mmcgm + last few years 15 mcgm T3 This summer my review blood tests showed mt T4 had slumped from 65% though range to 32% Which explained the return of some symptoms. So after finding out on here that others had problems with Accord not delivering enough T4 I sent in a yellow card and changed to Vencamil(Aristo). After 8 weeks on their tabs my T4 was only 34% through range, so now adding in another 12.5mcgm per day, another test due in New Year, still a bit off! It is frustrating but I know it could take some time to get back to my previous well status.
Who is behind this ThyDQOL? There are some endocrinologists who are definitely wrongly interpreting the info they get from something similar to this. They are well known and disreputable, in the opinion of many on the forum. However if it’s for your own use (and if it’s useful) it might be ok.
Looks like it was developed by researchers at Royal Holloway - pubmed.ncbi.nlm.nih.gov/156... (who on a quick google look to be health psychologists with specific interest in endocrine disorders).
The thing is that it is so complicated, everyone is different. Most are woman so that adds another complication to the mix.
If enough of the basic questions and answers were asked maybe it could progress from there. Different question for say Hypo/Hyper. Hashi or not HRT if not vitamins and minerals. Very Very complicated but yes I think that it could help.
Also Blood test results, medications being taken and most importantly of all.
Yeah I think for me, I had put a lot of the symptoms I'm experiencing down to hormonal changes, as they do seem to map in severity on a roughly monthly cycle - so a whole other layer to think about.
The thing is that it is so complicated, everyone is different. Most are woman so that adds another complication to the mix.
If enough of the basic questions and answers were asked maybe it could progress from there. Different question for say Hypo/Hyper. Hashi or not HRT if not vitamins and minerals. Very Very complicated but yes I think that it could help.
Also Blood test results, medications being taken and most importantly of all.
I dont think it is a bad thing to look at it from an acedemic point of view as this takes out the personal slant, but I would recommend doing the personal slant alongside, because how you feel is the most important bit.
Be aware that the long, slow slide to hypo can take a long slow climb to feel well. Frustrating, but is just how the thyroid system seems to work. You should be tested after any change in dose after 3 months, but I have to book the blood test as they never remember.
You may feel better after a couple of weeks on thyroxine and then feel worse - this is your body saying "ohh, thats better, can I have some more please". Most of us have been through this. So after 3 months and another test (demand T3 test!), they up your dose and you repeat the feeling better bit. Once you find your "sweet spot" and feel almost normal, and you will get there, they will move to testing once a year.
The quality of life never enters most medical professionals heads. Sending a hug.
Thank you for this and the hug I'm definitely preparing myself for this not to be a quick fix, but am just glad there is maybe a better future ahead.
I'm already struggling to book the next blood test - it's done external to the GP and seems the systems have not yet 'spoken' to each other. So psyching myself up to sit on hold for a bit tomorrow to try to get it sorted!
One issue I have never seen addressed: What happens to the reliability of a questionnaire when one person fills the same one many times?
I have a nasty feeling that the more often, and the more frequently, anyone does this, the more they will reply with the same answers as last time. Not even giving each question its due thought and consideration.
I think it's definitely a factor that's hard to quantify - also we see all the time in the trials we fund that people get bored of filling in questionnaires the longer they go on and don't even get that final data haha.
I'm just hoping it will allow me to be as objective as poss (which I realise is basically impossible, in assessing myself haha) and see whether/where things are changing over time. A few years ago I was seeing a therapist who at the beginning of every session would ask me to fill in a generic depression and anxiety questionnaire. It annoyed me at the time, and I also felt like I wasn't really improving along the way. But then we got to the end of 12 weeks, and she could show me in the numbers that actually yes certain areas had improved, even though I still felt I was doing terribly. And I guess that gave me a bit of oomph to keep trying - and I'm hoping that maybe I can achieve something similar doing this
Just to let you all know, I've managed to get a 'for information' copy of the ThyDQOL! If anyones interested, I can try to share (not sure the best way to do, I guess email/chat?)
I am definitely interested. I am not that good on the computer but for everyone to get a copy, individually, I would say put up a reference within your own post (this one) and everyone can make their own copy. Less work for you too. Or do similar in a completely new post, so everyone gets a chance to see it.
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Questionnaire for thyroid research
PubMed paper on cognitive functioning and quality of life 
Thyroid Trust questionnaire for hypos
