Hello
I messaged on here recently about my symptoms and was recommended to take a private blood test, which I've done. So I'm surprised that they've all come back normal! I screenshot them but not all together. Think I need to now think it is actually not my thyroid, but rheumatoid after all!
Well it does show that you aren't converting fT4 to active fT3 very well....
Free T4 (fT4) 21.1 pmol/L (12 - 22) 91.0%
Free T3 (fT3) 4.1 pmol/L (3.1 - 6.8) 27.0%
T4:T3 Ratio 5.146
Certainly not optimal levels, have you looked into your Vit D, folate, B12 and ferritin levels as these all need to be optimal to aid conversion
Yes I have those too. I couldn't upload more than one photo ...I'll post it. Oh so would you suggest I contact my GP with these results? I don't really understand the ratio etc.
Jaydee has covered most things, you need to see an Endo to get some T3 prescribed as you are already top of the range for fT4 so no room for an increase
Which area are you in as some are really anti T3
I'm in south east, in Kent
Just looked at... openprescribing.net/analyse....
and looks like they are one of the highest prescribers 👏
so you must have some switched on Endo's 🤗
How do I get referred to an Endocrinologist though if my GP won't do it? Would I have to look for one privately?
With my surgery you can actually request a referral online and name who you would like to see... if you explain your results to your GP their eyes will probably roll back in the head and they will happily pass you on!
It's obviously quicker to go private but then you have to pay ££ and keep on buying the T3 which should be free via the NHS
So no need for increasing Levo then? I really need to research more!
No, too much levo (over range) is worse long term so your only option is T3
I was in a similar boat a couple of months ago, low TSH, FT4 21 and FT3 around 50%. I was on 200mcg of Levo and really couldnt push my FT4 upwards anymore.
There are health implications for long term high FT4, including raised cancer risk. I decided to self source some T3, drop my Levo down and I'm hoping to test as soon as my awol private blood test pack turns up. I have felt better since adding T3.
These are the rest
Your vits and mins are good, is there an Endo in your hospital you can check credentials and then sneak in for an early appointment?
Slight inflammation but you also have rheumatoid issues?
No, no Endocrinologist at my hospital, think I'd have to look at Medway which isn't too far. I'm not sure if I have rheumatoid problems, seeing a rheumatologist at the end of the month, as that's what my GP did referral for.
I'd write a request to your GP with the results and that you have been guided by Thyroid UK that you need to see an Endo as your symptoms will not improve without the addition of Liothyronine.
Have you had your thyroid antibodies tested? Is it autoimmune hypothyroidism
Can I check how you took the blood test?
What time of day was it?
When did you take your last Levo before the test?
It was taken venously, at midnight because I was on a night shift....I had taken Levo about 18 hours before.
To get accurate and consistent results with highest TSH its recommended to do the blood tests at 9am, fasting, Levo 24 hours before blood draw.
So likely your TSH would have been higher had you tested at 9am and if you can arrange that in future it would help you.
You haven;t mentioned what symptoms you have but you have room for a 12.5mcgs dose increase if you can insist on that with your GP.
Vitamins all look good.
My symptoms are aching legs, leg heaviness, fatigue, itching to top half of body, weight gain and puffiness, to name a few. I had a hemithyroidectomy in Aug 2020, been on 50mcg since about March 2021. I did wonder if I shouldn't have raken my blood in the night, but I couldn't get to the path lab, so got it done when I was on my night shift at the hospital!
50mcgs Levo is a starter dose.
Are you a small, petite person?
There is a very approximate dose calculation that can be made with your weight.
weight in kilos x 1.6 = guide final Levo dose.
I was about 9 stone but am now just under 11 stone....I'm 5 ft 2 inches
So my weight now I should be on 100mcg?! Although I'm now on a fasting diet with minimal carbs from vegetables and high protein and healthy fat
helvella - Estimation of Levothyroxine Dosing in Adults
A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.
Thats a very approximate guide amount but you likely should be on more than 50mcgs.
The thing with dieting is that it changes your blood results. Fasting, low calorie and low carb diets inhibit conversion of T4 to T3, so lower T3, raise FT4 and lower TSH.
If you want to get onto your optimal thyroid dose you will have to stop dieting and eat completely normally. Retest in 6 weeks from eating a normal diet and post results in a new post.
Goodness. It is the most complex thing! I am dieting because I feel so awful being this weight, and the only thing that has worked before was fasting and limiting carbs. I am so depressed with my weight, I've not weighed this before even when 9 months pregnant! I'm trying things I can do to try to alleviate my symptoms of heaviness a bit.
Its understandable that one might think that dieting could help, however, when hypothyroid other things come into play and in the first instance you are better off getting your thyroid levels to optimal plus vitamins and then things should fall into place more.
At the moment your diet is likely affecting your blood results and preventing your GP realising you need more thyroid hormone. Your GP may need encouraging to increase your dose once you get your blood levels back to where they should be though.
GPs really dont understand the complexities of hypothyroidism or have the knowledge to make us well.
But she is already top of the range for fT4 so an increase in levo isn't what is required here as result was 18 hours after last dose?
Fasting and low carb diets/dieting pushed FT4 up falsely and decreases conversion to T3. So if the diet was stopped the FT4 would fall back to a more natural level.
Have we got some research papers for this? I know low carbs is counter productive but I'd be surprised in this case as her vits and mins are so good that it would make that much of a difference?
I do actually have personal experience of this. Its what brought me back to this group after a period of having given up on getting my thyroid treatment right.
I had been intermittent fasting and my blood results showed very low TSH, raised FT4 and low FT3. GP dropped my Levo dose, I stopped doing the fasting diet and of course everything went back to'normal' and my functioning was worse than ever.
This article has a few links to research on dieting. palomahealth.com/learn/hypo...
I'd only started this diet two days before my blood test? I'd not been doing it since last September.....would that affect the blood test within 2 days?
Hey there again :
Re - ' this diet ' - it reads as though last September you were ' doing it ' - presumably for longer than just 2 days ??
I did it for 5 weeks before a holiday. I lost a stone. But it crept back on again with the holiday and then looking after Mum and eating a lot of easy dinners and drinking wine. It is a harsh diet but it has worked for me in the past, that's why I had started it again last week. It's basically fasting for 16 hours from 18.00-10.00, then eating things with high protein and minimal carbs, meditteranean diet basically, cooking from scratch in my eating window. I didn't realise I shouldn't diet when I might be hypothyroid?
No worries - just trying to understand things -
so over the course of a good few years - like very many other people - you have resorted to dieting to loose weight and feel better about yourself -
Ok - so - it's not ' just the last few days - but periodic episodes of fasting so yes, this may well have down regulated your T4 to T3 conversion and can see cause and effect.
But don't beat yourself up - what's done is done - and we just need to focus on going forward and you'll probably ' do better ' with a little T3 alongside your T4 .to kick start your metabolism and break this cycle your body has unwittingly put you into.
Last September was the first time I've done a fasting diet. I have done various, slimming world, calorie counting for most of my adult life, I've managed to lose weight eventually. So yes, I have dieted in the past, but the fasting, I have only done once before this time. Thank you for your advice. I have just come off a night shift, so will compose a letter to my GP asking about referring me to an Endo. I will also request a further blood test and ensure I'm eating a more regular diet.
Oh - sorry - I mustn't keep you now -
so yes dieting of any sort is not conducive when with a thyroid health issue and I'd hazard a guess working nights isn't doing you any favours either :
But lets leave that there-
Sweet dreams -
A lot of hypo weight is excess fluid, not fat. We tend to hang on to fluid that should be excreted by the kidneys, I know its small consolation when you stand on the scales 😲 but ironically restricting your calories and excessive exercise can make things worse, not better.
You are fighting against a very underperforming metabolism, it should be a Ferrari 🏎 but is more like a Robin Reliant 🚙, which is reliably crap.
Before going down the Endo route I would strongly recommend retesting under the conditions I stated before:
blood tests at 9am, fasting, Levo 24 hours before blood draw, only drink water the morning before blood test.
Also no dieting at all.
Dieting won't fix the weight issue, thyroid hormone will, so you need to get that right before addressing any weight that has been gained due to being hypo.
Actually looking at this graph TSH is quite high at midnight, but still you have a little room for an increase according to your TSH and FT4.
Your FT3 is on the low side too which may be whats causing you the symptoms.
you can add them as a reply, one at a time
Hello Flo and welcome to the forum :
Your results maybe in the so called ' normal ' range and be dismissed by a doctor who isn't clued up on thyroid management -
but your results are not ok nor optimal for someone with half a thyroid and taking 50 mcg T4 daily and who is still dealing with and experiencing symptoms of hypothyroidism.
Once on any form of thyroid hormone replacement the TSH should be kept under 2 and we generally feel best when the TSH is towards the bottom of the range and probably well under 1.
We generally feel at our best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around 60/70 % through its range, at around a 1/4 ratio T3/T4 :
The accepted conversion ratio of T4 into T3 is said to be 1 / 3.50 - 4.50 - with most people feeling at their best when they come in this ratio at 4 or under.
T4 - Levothyroxine is a storage hormone and pretty much inert until it is converted in your body, in the liver, into T3 the active hormone that runs the body, much like the petrol that runs the car.
Your T4 is in the top quadrant at around 91% but your T3 tracking behind at around 27%.
Put another way - if we divide your T4 - 21.10 by your T3 - 4.10 your conversion ratio is coming in at around 5.10 showing you struggling to convert well the pro-hormone T4 into the active T3 hormone.
Conversion can be compromised by non optimal core strength vitamins and minerals -
I now aim for a ferritin of around 100 - active B12 75 ++ ( serum B12 500 ++ ) folate around 20 and vitamin D up at around 100:
Other less easy to resolve issues that can compromise T4 to T3 conversion are antibodies, inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4 :
Some people can get by on T4 monotherapy.
Others find T4 seems to stop working as well as it once did and that by adding in a little T3 to replenish that little bit lost their feel better and take a T3/T4 combo of medications.
Some can't tolerate T4 and need to take T3 only - Liothyronine :
Whilst others feel improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
So, taking this blood test is where we all start off and a necessary first step in your restoring and reclaiming back your health and well being.
Having had a hemi-thyroidectomy your remaining part thyroid gland is trying to work at double time to support you and this is not conducive to long term good health and you need more support than you are currently getting.
Are you supplementing anything or taking any other medications ?
Apart from your Inflammation looking a little high - and maybe some tweaking on the vitamins and minerals - I think your choice of thyroid hormone replacement needs to be reconsidered.
Wow, it's so complex isn't it? I will definitely ask my GP to look into this and hopefully refer me to an Endocrinologist, but in the meantime, hopefully will prescribe the correct and adequate medication for me. I am so depressed feeling like this all the time. It doesn't help working shift (mostly nights) and my mum sadly passed away 2 months ago, but these symptoms have been going on for at least the past 18 months. As well as my Levo, I'm on blood pressure medication.
You are not alone!! And I am so sorry to hear about your mom. I’d give you a hug if I could!
Remember that suboptimal T4/T3 causes a clinical depression (so improving your Ts will improve feeling depressed) AND even without the blood chemistry- I call it “situational depression” - because feeling so limited all the time is enough to bring anybody down! Many many of us have been told we need anti-depressants when all we needed was a little more T4/T3 to treat the root cause of the problem.
Also - I’ll just say it, this forum is smarter and more knowledgeable than almost all doctors out there. There’s lots of reason for that and it doesn't mean we don’t “like” our doctors or that they aren’t good people or that some aren’t amazing… but most just aren’t taught about how to manage thyroid issues. So if you are ever in doubt, come ask the board here and you will definitely feel the confusion lift!
So sorry to read of your Mum's passing - and I just read you were dieting - which of course is what we all do when we find no help nor understanding and made to feel it's all our fault and offered the ' anti depressants ' that do nothing - stop beating yourself up, and eating healthily and cook from scratch - meat and 2 veg ?
the body closes down and slows the whole process of metabolism down when senses starvation - which also means down regulation of T4 into T3 - the opposite of what you need when taking any form of thyroid hormone replacement.
The thyroid is a major gland and responsible for full body synchronisation from your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
And I hazard to guess that living with half a thyroid is no better than living without a thyroid when not on the appropriate thyroid hormone replacement.
Currently in primary care your doctor can only prescribe T4 and you need a referral to an endo for consideration of any other treatment - though 20 odd years ago your doctor had all these treatment options in his own box of tricks if and when T4 monotherapy didn't restore your health and well being could offer you T3 or NDT.
It now has become something of a post code lottery I'm afraid with financial constraint rather than medical need being implemented in some areas of the country and with NDT virtually impossible to be prescribed on the NHS to new patients.
Thyroid UK - the charity who support this patient to patient forum do hold a list of recommended thyroid specialists and endos - both NHS and private - with many still offering video consults so distance need not be an issue - maybe email admin @ thyroiduk.org for the list and take a look and you can ask for feedback but replies will be by what we call Private Message ( the paper plane icon lights up if anyone replies to you ) as we aren't allowed to openly discuss any medical professional -
You will likely end up with information overload today - just take a breath and reread everything - as if with the horrible brain fog - nothing seems to register at times ;
If you get lost reading around this forum - just press the Profile Icon, top right on this screen on my laptop - and it takes you back to all your posts and replies.
We can all read what is being written by everybody and just make sure when replying that the named person's name pops up -
If you want to read about anybody else simply press their icon which is alongside their name - and we try and answer as fully as possible all posts within the first 24 hours -
Thank you. Yes there is so much to digest. I have tried to research, but get lost in a lot of the information (despite being a nurse!)......you all have so much knowledge about it. And thank you for the heads up about looking at my replies etc.....it is a bit overwhelming!
I was the same when I fell in here researching low ferritin around 9 years ago and didn't pluck up the courage to write anything for a good year - just kept reading and realised it wasn't ' just me ' !!
It's a bit like a jigsaw puzzle without a picture but slowly things fall into place and you will see your way forward and just keep asking questions and you will receive considered opinion.
Flo2021 is on a low carb, fasting diet.
I only restarted it last Monday (not been on it since last September) so only 2 days before my blood was taken, so surely it wouldn't impact that quickly?
I don't know how long it would take to affect blood results and in what way.
If you want to get accurate results you need to be on a normal diet, test at 9am or earlier, fasting that morning just drinking water before the test. Take Levo AFTER the test so you have a 24 hr gap between last Levo dose and blood draw.
Also no biotin containing supplements for 4-7 days before the blood test as they can affect the results.
Ok thank you. I just don't know what else to do to lose the weight! I don't take any supplements, just eat a healthy diet.
Flo2021 drinking from a firehose! I know it seems complex but there are basics to this that will sink in. Take time to read and re read the above thread - you have great responses!
I just want to say one more thing - you are not gaining weight because of what you are eating. You are gaining weight because suboptimal thyroid hormones. Among many things, Thyroid regulates your metabolism, some of what you’ve gained is water weight anyway, and low calorie diets can even have the opposite effect you want as they will slow your metabolism down even further.
So don’t beat yourself up for the weight - it is a symptom of hypo, not a result of your eating. Focus on your free Ts (and optimal vitamins/minerals D3, B12, ferritin, folate) first.
Thanks - just replied having picked up that ' gem ' as well as answering a telephone call - hence the delay on finishing this. !!
Your FT3 is much too low.
Thank you. I am going to write to my GP and ask for repeat test and to see an Endo.
Good idea that will help.
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