Hello 👋 everyoneLet me start of by wishing you all a Happy New Year 👍🥳
I have a question? I've been living with thyroid since 2017. And I swear since taking levothyroxine tablets. I have one problem after another.
I've been to my doctor's time after time. But it seems like a lot of you are saying. It's blood test after blood test.
So my question to you all is..... Can you come off levothyroxine tablets for good. Or is there an alternative?
Thank you 😊
'Can you come off levothyroxine tablets for good. '
The simple answer... if your thyroid no longer produces the hormones you need in order to stay alive, then you will need to take thyroid hormone replacement for life.
The more complicated answer starts with... ' how much levothyroxine are you taking, and what were your most recent thyroid blood test results?
I'm taking 100mg levothyroxine tablets. And my recent blood test results was normal..Thanks 👍
'my recent blood test results was normal'
Normal is not acceptable when it comes to thyroid hormone levels. What's normal for me, may not be normal for you. Unfortunately doctors don't seem to understand this at all.
You need to contact your surgery to get the actual test result number/s. Ideally this would be TSH, FT4 and FT3. But most likely you will only have a number for TSH. When you have these results (together with the reference range), post them on forum so that members can offer help and suggestions.
Ho okay 👍 I've always just thought that was it. Normal means your fine. But I don't feel fine. I will definitely ask my doctor.
Thanks
I often post the text and link below because it is one of the best papers about reference intervals - normal ranges.
Because it comes from the medical world, written by medics and published in the British Medical Journal, it should be convincing to healthcare professionals.
It is also written in a way that is reasonably accessible to many patients, at least with a bit of careful reading.
The normal range: it is not normal and it is not a range
Abstract
The NHS ’Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ’normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ’reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding
►Health is a relative and not an absolute state.
►The reference interval acts as a comparator for the patient’s blood result. It is not the arbiter of whether disease is present or not.
►Natural fluctuations in a blood result can occur.
►Comparison of a result against the reference interval should be informed by the clinical suspicion made beforehand.
Freely accessible here:
Hi W051101
Ooo! Just don’t ask doctor for copies of results they really don’t like patients getting up to speed on their own health issues - ask the receptionist 😉👍.
If you want a quick overview of how Doctors can’t interpret blood tests read my bio 😊👍. I wrote it as a sort of case study.
Register but DO NOT rely upon patient access. My Online records have been more doctored than I have! 🤣 when I flagged I had been mismanaged things disappeared 🤣 I’d already taken screenshots though.😂
Keep your own records. Note symptoms in real time on a month to view. Just brief as few words as possible. I have a file.😉
Charlie-Farley 'don’t ask doctor for copies of results they really don’t like patients getting up to speed on their own health issues - ask the receptionist'
Although... Nothing is ever set in stone... Quite a few years ago, I asked receptionist for my results. She said no, we don't give patients that information. This was shortly before I was seeing my GP and I wanted to be able to plan my approach before I went in to see him.
When I complained to GP about the surgery policy on not giving patients their results, he told me that of course I should have them, after all, it's my body they came from. He printed them out for me there and then! I nearly fell off my chair! Unfortunately for his patients that GP retired a couple of years later.
Did he leave or was he pushed? The good ones are definitely in the minority these days - over reliance on tests they cannot interpret rather than symptoms they refuse to discuss. Just imagine how much more effective they would become if the at least could talk about symptoms. 🤔
At my GP surgery we can ask for our blood results, but the GP has to OK the request first, in case there's something they would like to discuss/explain before we see them. Usually there's no issue.
Our GP practice provides online access, so we can see all test results, consultation summaries, documents, appointments, medications, immunisations and health conditions. Very helpful
Thank you 😊
You probably need a dose increase or two to get rid of the 'one thing after another'. That and sorting out low vitamin levels caused by low stomach acid malapsorption. Gps are happy when our results just fall within the 'normal' reference range and don't really care if we have remaining symptoms. We will only feel well when our thyroid replacement is optimised though and your GP doesn't know how to do that.
Hang around here and learn a bit and you will find out what will help you feel better.
Thank you so much 🙂
correction: I didn’t learn a bit - I learned a lot
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Do you always get same brand levothyroxine at each prescription
Approx how much do you weigh in kilo……100mcg may simply not be high enough dose.
We need to see results before we can comment
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours
Some like iron, calcium, magnesium, vitamin D, HRT or PPI at least 4 hours away
ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once for autoimmune thyroid disease
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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 (Hashimoto’s or Ord’s thyroiditis)
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 on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Frequently GP only tests TSH ……completely inadequate
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 (doesn’t include antibodies)
monitormyhealth.org.uk/full...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
what vitamin supplements are you currently taking?
I take my levothyroxine tablets in the morning. But I'm asthmatic so I have to take my inhaler straight after my tablet.
I take my my levo in the afternoon at 3PM, it works great but I keep away from coffee for at least an hour after taking the Levo.
So it’s ESSENTIAL that you get full thyroid and vitamin testing done
Inhaler will lower TSH result as it’s a steroid
Thank you 😊
ask GP to test including Ft4 and FT3 and thyroid antibodies and vitamins
Book blood test for 9am and last dose Levothyroxine 24 hours before test
Come back with new post once you get results
GP unlikely to be aware that inhaler will after thyroid results
Essential to test vitamin D, folate, ferritin and B12 at least once a year
Many (most?) thyroid patients need to supplement vitamin D and B complex pretty much continuously
Some need separate B12as well
Low iron /ferritin common too
You may simply be not on high enough dose levothyroxine
Approx how much do you weigh in kilo
Guidelines are approx 1.6mcg per kilo of your weight per day
Unfortunately many GP’s think as long as TSH is somewhere between 0.4-5 your “fixed”
Most important results are ALWAYS Ft3 followed by Ft4…..and all four vitamins at OPTIMAL levels
Again NHS only tests and treats vitamin deficiencies
But we need GOOD vitamin levels
I weigh 9 stone 8lbs. Wouldn't the doctors know this by our medical records? How much levothyroxine tablets you should be taking. Thanks again.
so you appear to be on roughly right dose for your weight
But some people need higher dose
First step is to get hold of all test results done by GP
see exactly what has been tested…..and what hasn’t been tested yet
Then get FULL Thyroid and vitamin testing done
Make sure you test early morning
If Private testing…….early Monday or Tuesday morning and avoid post strike days
Come back with new post once you get results
Levothyroxine is 2nd or 3rd most prescribed medication in U.K., but management of hypothyroidism is very poorly understood by many GP’s
There’s over 2 million people in U.K. on levothyroxine
Thank you for your advice. I will call my doctor tomorrow.Happy New Year 🥳
it’s bank holiday tomorrow
Request online access to your test results on Tuesday
Hahaha 🤣 Gosh.... yeah it's is. Will do on Tuesday.
i know blue reliever inhalers are not steroid - salbutamol. Does that effect thyroid? as i have to use salbutamol for mild asthma.
Google salbutamol and levothyroxine and TSH
i'm not really finding anything specific to salbutamol. Other than one medical paper i cant make any sense of.
Blue inhaler which is ventoline. Isn't a steroid. But I'm on a steroid inhaler. So I will ask my doctor......if I get to see one. Could it affect levothyroxine tablets.
Don't think I've ever seen any evidence, nor even suggestion, that an asthma inhaler directly affects absorption of thyroid hormone.
Quite possible that there are interactions within the body, seems likely with steroid-based inhalers, but I doubt time is an issue.
What are the problems that you are having that makes you want to stop taking Levothyroxine?
Hello 👋I just don't feel myself anymore. I feel really weak in my neck and chest bone's. Anxiety and lack of sleep 💤 I've been to my doctor's about all of these problems. But just get the same answer over and over again. So I'm thinking best thing is to look after yourself ☺️
Happy New Year 🥳
You will see thousands of uK members test privately to make progress
See what you can get tested via GP first
Medichecks results
healthunlocked.com/search/p...
Blue horizon results
Sorry to learn you're not feeling right, nor yourself anymore....that's horrible. since starting levothyroxine, have you always had the same brand? If the brand has changed, have you noticed any differences?
When first treated with levothyroxine, the dose gradually increased until I felt stable.... and it was always the same brand. Last year....almost forgot it's now 2023 
I began to feel really unwell again, despite the dose remaining the same. Anxiety out of the blue, thick brainfog, light-headedness, painful aching joints, fluid retention etc etc. and a bad fall. It took me until November to realise there may be an issue with all the changing brands I'd been given.
I talked to my GP, and it is now written on my prescription that I only have the brand that suits me. Everything has stabilised again since being on that brand only. There is considerable difference in how I feel and am. I am also addressing the essential vitamins and ferritin, to get them lifted so they can help thyroxine do its work.
There may be something here that helps you understand what is happening/not happening for you? Wishing you "yourself" back again x
With reference to getting copies of GP records and test results...
1) Asking the receptionist is always the best option to begin with. If you wanted to ask a doctor it would mean you needed an appointment and they would consider that to be a waste of an appointment. But if the receptionist is not helpful try to make a phone appointment with a doctor.
2) When you go to pick up copies of records from the surgery always take ID with you.
3) The receptionists are usually not allowed to give copies of records/test results to patients without permission from a doctor so you might have to visit the surgery twice. There shouldn't be a long wait - it should never be more than 24 - 48 hours from asking for what you want to actually getting the copies.
4) If you get access to your records and test results online make sure to take screenshots/copies of them all immediately. If you annoy a receptionist, nurse or doctor, or query anything at all that has been recorded they may take away access to the relevant records or even take away access to them all.
I have been on Levo for a long time , as I understand from my endo, it’s for life! I am sure there r alternatives out there like, Ayurvedic doctors who can guide & treat u! I have a friend who chose to quit the treatment and is doing fine without meds! But, we r all different! Whatever path u choose, do research and decide carefully!
Whilst levothroxine cleared up most my initial symptoms with UA thyroid i do find it creates a fair few problems of its own. The trouble is with this pesky condition is anything you do has a multi month feedback loop across a vast pool of potential symtpoms.... very difficult to pin anything down. But I do find levo creates sleep apnea and myopathy symtpoms build over time all of which disappear when i take abreak or reduce my levels. I have been off levo for 3 months, feel brilliant and enjoying the break but have no doubt ill be back on it at some point. Not scientific and not for everyone but you just have to find what works for you as decent to get good specific advice. I am not suggesting to stop btw that could be terrible for you just that everyone is different and levo brings its own complications for some.
Very interesting responses here for you all which give good advice EXECPT I cant see any mention of including natural thyroid extract. If you have no thyroid function where is the T3 going to come from to convert your Levothyroxine T4 (which is a storage only hormone) into bioavailable T3 ?? I spent years taking up to 150mcg of Levothyroxine with no change in my symptoms. Think of having a full tank of fuel in your tank in your car but no spark plug !! Check out Janie Bowthorpe's wonderful web site ( which saved my life as I was going crazy on Levothyroxine alone) where she explains it in great detail. stopthethyroidmadness.com/
Also check out the wonderful book by Dr Kenneth Blanchard showing how to take a very small amount of T3 with your Levothyroxine. Improved my dosing just right. " Functional Approach to Hypothyroidism, The : Bridging Traditional and Alternative Treatment Approaches for Total Patient Wellness"
amazon.co.uk/Functional-App...
Best of luck.
NDT ( and T3) is often mentioned /suggested on here , but in this instance it's a bit too soon for anyone to have suggested it since we currently have no idea of WO51101's fT4 and fT3 levels on 100mcg of Levo .
(NDT is also very hard to get prescribed in UK unless from a private Endo , and therefore nearly always needs to be self sourced without prescription )
"If you have no thyroid function where is the T3 going to come from to convert your Levothyroxine T4"
T3 is produced from T4 by deiodinase's, by removing one iodine atom . (also the thyroid produces some T3 if it' s still there / has any residual function )
T3 level ( and T4 ,and TSH) does have some impact on the deiodinase's , altering the efficiency of conversion from T4 to T3 , T4 to ReverseT3 ,and T3 toT2 .
But T3 is not what convert's T4 to T3.
Some people get enough T3 from the T4 in Levo, IF their conversion is good enough , and some don't, and may benefit from taking it in either T3 or NDT.
But until we know somone's fT4 and fT3 levels on Levo ,we don't know if they have lowish T3 or a pretty decent level.
It's best to try and optimise their levo dose first, and make sure 'everything else' is as good as can be, because Levo is simple to obtain and free on NHS , before suggesting more expensive options like NDT/T3 which can lower TSH substantially and thus complicate matters with GP.
Thank you for your advice 🙂
Hi, your symptoms could be menopausal.
Hello 👋I've had it checked out with my doctor. It isn't menopausal.
Thank you for your advice 🙂
Just diagnosed 
Does Levothyroxine only replace T4?
Thyroid and tinnitus....
Levothyroxine
