Hi all is it necessary to know T3 when requesting an increase in Levothyroxine?
I’m having problems getting doctor to increase my medication from 25mcg. The NHS lab didn’t test T3 even though it was requested. I was thinking of having a private test for T3. Whilst I realise the doctor doesn’t have to accept the results, surely a doctor wouldn’t ignore it completely?
Rosserk,
It is likely your FT4 and FT3 are low otherwise TSH wouldn't be 2.63. You should be able to get a dose increase on the basis of your TSH without testing FT3. If your GP is of the "TSH is the important test" school then s/he may not take note of FT3.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Hi Clutter.
I had another test on Tuesday and it came back
TSH - 3.7
T4- 13.2
Doctor refused to increase levo. I haven’t seen a doctor all done over phone. I have appointment Wed with different doctor. I’m clutching at straws because I’m so desperate to feel better willing to do whatever it takes. I understand everything you’ve told me previously about where I am in the range and where I should be. I have the Pulse article and some other information ready for Wed. I’m also aware I have one shot at convincing her to increase my medication with no where left to go.
Rosserk,
It's not a one shot thing. If the GP you see doesn't raise dose then see another even if you have to see every GP in the practice and if they don't help change practice.
It’s extremely difficult to get appointments at my GP practice. I will have to wait until after my appointment Wednesday to make a new appointment and it will be two weeks later. They really do have control over your health here! If I can’t persuade her on Wednesday I will look to sourcing NDT.
Rosserk,
Why NDT? Why not source Levothyroxine if your GP won't raise dose?
And there lies the problem Clutter I don’t know what I’m doing. I didn’t know I could get Levothyroxine without prescription. I have no idea what I’m doing because I’m so desperate to feel better I can’t think straight. I’ve been ill for so long and just when I thought I’d reached the end of my journey with my diagnosis, it feels like it’s been snatched away with the doctor refusing to increase the dose.
During the last three years I’ve lost my sister, my father has been sectioned under the mental health act with dementia and my 76 year old mother who lives with us has just broken her hip and spends her days crying because she wants to see her husband of 55 years! All of which I’m forced to deal with when I can’t even walk down the stairs without collapsing, so I’m on the end of a very short fuse 😩
Rosserk,
Because one GP is of the opinion that you don't need a dose increase doesn't mean every GP will agree.
There's no reason why you should be aware that Levothyroxine can be available without prescription, I only mentioned it so you are aware that you don't have to remain undermedicated even if your GP practice won't help you. I feel sure your GP will help on Wednesday but, if not, write a post requesting members PM you with sources for Levothyroxine without prescription.
I'm sorry for your parental difficulties. They would be difficult to deal with if you were in good health.
Thank you Clutter you’ve just given me back some hope. So all the daft questions I’ve been asking have got me a little further forward.
Kindest regards...
Rosserk,
There are no daft questions, just unasked questions 
You have been extremely kind Clutter thank you. It’s not easy advising newbies and it must be so frustrating when people like me appear not to be listening, you have been extremely patient and I’m so very grateful you’ve taken the time to help me.
Whilst I’m a little up and down at the moment I’m taking all your advice on board and I’m absolutely conscious you’ve given up your time to help me and others on this site. I won’t forget it thanks again 😜
I heard a daft question once. In my high school advanced science class a girl asked if the birds can hear telephone conversations when they sit on the wires. Sorry, off-topic, lol...
Almost forgot to mention that her father was a doctor
And I laugh, but who really knows what birds hear? Certainly there has never been a study
Similarly there’s been no comprehensive study into hypothyroid and correct dosage of medications. Not so funny 😜
There are just so many variables when it comes to correct dosage and correct medication. Plus it is easier and more profitable for them to not look into it. Just dose by TSH and go about your merry way. Except that it is not a merry way for the patient...
rosserk I hope things improve for you, is their anyone who can help? Maybe discuss your family situation with the GP so they realise what you are coping with and why you are pushing hard to get the correct medication to get your energy back. I'm new here too and the advice and knowledge of other members is a great help, but it's so frustrating when the GP looks at results with little knowledge; mine said I was overmedicated just because my TSH was near the bottom of the range!!! I had private blood tests done in October which showed both my antibody levels are high, I'm having them done again to see if they've increased, and the gene test to see if I have T4 to T3 conversion issues, but I know even armed with results I probably won't get any more help from a GP. I've never been referred to an Endo or had a scan or been given any information about the destruction of my thyroid!
However for the dose I have increased this myself when I felt necessary and told the GP what I needed at next appointment! This was easy when on 25mg and 50mg I just took 1 1/2 or 2 tablets, but not now I'm on 100mg. Also at that time I was prescribed 3 -6 months supply so had time to get more, however now GPs only prescribe one month at a time for all medications which seems totally ridiculous!
Good morning Haze 1234 thanks for the kind and thoughtful response. Read my latest response to SlowDagon below .
Around the 3rd week of taking Levothyroxine 25mcg I felt amazing. I felt I was cured and was bouncing around like I’d won the lottery! Angina pain went, didn’t feel like I was suffocating and short of breath, I wasn’t breaking out in cold sweats. My heart rate had increased to 61bpm from 48 and my blood pressure hadn’t dropped for over a week! It was a miracle!
Halfway through the 4th week, I went downstairs when you woke up and by the time I filled the kettle the room was spinning I was hyperventilating, my lungs were burning and I was dripping in sweat, I practically crawled to a seat. My blood pressure was 60/48 heart 115bpm!
I phoned doctors but they refused to increase meds until I’d had a second blood test so I had to wait 2 weeks. When those results came back at 2.63 doctor refused to change dose and I’ve been trying to resolve it ever since. 😂
So sorry for all of your problems it will get better things always come together in the end, don't worry the help you require is on this site I got better it took a while but it's worth it.
You have plenty of choice private blood tests and self medication.
Thank you Bunnyjean, I had a taste of what it was like to feel well only for it to be snatched away so cruelly.
Now I know I can source what I need without prescription if I can’t get an increase I’m a lot more positive. I don’t want to wait 8 weeks feeling like this before they agree to re-test me. As I said I will try the nurse practitioner Monday as she can have a direct conversation with the doctor. If that doesn’t work my appointment is Wednesday if that fails I will source the medication myself and get independent tests. I will then insist on seeing a consultant as I believe is my right. In any event I’m going to start gathering evidence and prepare to fight! Lol enjoy your day!
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
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
rcpe.ac.uk/sites/default/fi...
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)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 plus vitamins
Private tests are available
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's and low vitamins are extremely likely
SlowDragon most of that information I’ve already been given but thanks for the reinforcement. There is one snippet of information which I don’t think I’ve previously seen and will be the start of my argument for an increase in medication is the official NHS guidelines, so a special thank you for taking the time to enlighten me. My TSH (3.7) level is above the ‘official NHS guidelines for someone taking levothyroxine’ so that statement alone should be all the leverage I need, or at least one would think so? I will certainly ask why my Doctor is ignoring official guidelines.
I’m finding this website extremely helpful and most of the posters have been overwhelmingly kind with the odd exception from some well meaning contributors who are a little aggressive when imparting their knowledge. I’m guessing the latter are posters who are exasperated by the difficult roads they’ve travelled and lose patience with people like myself just starting out on this journey. Thanks again for your help I will let you know how I get on my warmest regards to you 😜
There's this official guidelines from NICE too might be worth printing out for GP
They often dismiss Prof Toft articles, but the others are official NHS ones
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
cks.nice.org.uk/hypothyroid...
You know, SlowDragon, that these NICE documents are NOT official NICE guidelines? That is, they are not formal NICE guidelines as most people understand. Things that were properly developed with multi-party input, through a formal process, and with significant standing within medicine.
They are the old NHS Clinical Knowledge Summaries which were "adopted" by NICE. Whatever their quality, they simply do not have the reputation of "real" NICE guidelines.
NICE has started the process of developing thyroid guidelines.
Let's hope they make significant improvement in them. There's no mention anywhere for GP's (as far as I am aware) that they should be aiming to get anyone on Levothyroxine to have TSH low in range.
So common for GP to think TSH anywhere in range is absolutely fine
I think there is every possibility of them being better - but by how much, we will have to wait and see.
At the very least, there will be a formal process for reviewing and putting in complaints about full NICE guidelines. There is a clear error in one the the oft-quoted documents from the BTF/ACB and no mechanism for getting it corrected. I have even been in touch with the original author who confirmed the mistake - but he is now retired.
So what are the gps using as guidelines at the moment?
This might explain why there is a forum full of people under diagnosed and ignored.
Should let one of the admins right the guidelines!
Exactly!!! I don't think they have a guideline, they just use TSH "range" on lab reports, and to be honest why wouldn't they! It's the "range" that needs correcting for diagnosed Hypothyroid sufferers on medication
There are all sorts of so-called guideline documents. There are laboratory handbooks for most (all?) laboratories. There are the Clinical Knowledge Summaries already mentioned. Various organisations have put out their own documents.
You'd have to ask your own GP. He/she might say that they are using their years of clinical experience and don't need guidelines ...
25 mcg is just a starting dose of thyroxine. What are your test results and ranges?
Morning Muffy
Lab ranges are
TSH 0.27-4.20
Free T4 12.0- 22.0
My first test came back
TSH 13.1 my/L
FT4 8.8
My second test only the TSH was tested 6 weeks after start of Levothyroxine
TSH 2.63
Third test 8 weeks after Levothyroxine
TSH 3.7
FT4 13.2
😜
Which confirms you are significantly under medicated, TSH should be around or just under one and FT4 Towards top of range.
Your FT4 is almost at bottom of range
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Is this how you did the test?
On these results you need 25mcg dose increase and retesting in 6-8 weeks
Yes I tested first thing in the morning. I actually think my results would be worse now because I’m not sure if you recall from previous post I took a double dose on several days when I got to four weeks and started to feel poorly again. I’m sure those extra tablets will have screwed the results. I haven’t done it since because I will run out of tablets if I do. I did tell them what I’d done. I believe it takes several weeks for the extra doses to clear the system.
Doctors do and will ignore results as people have written on the site.
You might find this post helpful.
healthunlocked.com/thyroidu...
It shows that a TSH over 2 is far higher than that of the majority of healthy people.
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