I’ve just got off the phone with a professor I was seeing. Top notch endocrinologist. He says he can’t help me anymore and isn’t sure why I am unwell. I had a glimmer of hope while I was under his care and not I feel truly hopeless.
He suggested I lose weight and try anti depressants. I was nine stone when I got sick. Obviously weight is not the cause! I was doing spinning classes twice a day, I was not depressed!
I was on Thybon for six weeks and it raised my level but I felt no better for it.
My saliva test was slow but he said my syncathen test came back great so he doesn’t think I’ve an adrenal issue. My iron is good as had infusion.
Other vitamins are good. Maybe this is chronic fatigue syndrome after all.
I asked if I should try increasing T3 he said no.
T4 15.7 (12.0-22.0)
T3 5.3 (3.1-6.8)
TSH 0.04 (0.24-4.2)
I suppose I just have to face the fact that I’m probably going to feel like this forever. It’s been five years as it is so being positive and hopeful is naive. I’m gutted
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Well I can't lose weight unless both free T4 and free T3 are nice and high (80% through range).Your free T4 is a pretty feeble 37% through range, although free T3 is better at just under 60% (59.5% through range) - so still plenty of room before you go over-range.
I'd increase levo before increasing lio, as this will hopefully help both
I feel for you - you're under an endo but not feeling better; it IS possible to get fully well, but you need to be on the right level of meds for that to happen, and I don't think you are at the moment
Thank you for you reply. I agree with you, I think we could have tried more together! I feel properly discarded if I am honest. I can tweak but liked the idea of being safely guided by a professional who I know to be very popular on here 😢
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test and last 5mcg T3 8-12 hours before test
Ft4 is only 37% through range
Ft3 60% through range
Helpful calculator for working out percentage through range
Hey slowdragon. How you doing? Thanks for your reply. Yes, I sticked to the rules when taking the test and yes I am splitting the dose. I take quarter of a pill three time’s a day and 125mcg levo
Initially he asked me to drop the levo to 100mcg but I felt unwell after three weeks so upped it again. The same happened last year when I tried T3 I got off the net so just went back to 125mcg levo.
Vita Premium d3 4000 x2 a few times a week, and better you k2 spray. Also take when I remember super b complex Igennus. I do actually have some selenium 200mcg oxford vitality. I can order some zinc
So sorry your endo is apparently giving up, what are we supposed to do when the medical profession doesn't continue to look for solutions?
What are your current doses of Levo and T3?
Presumably you left the advised time gaps between last dose and blood draw, i.e. last dose of Levo 24 hours before test, last dose of T3 8-12 hours before test?
I'm on Levo and T3 and I seem to need both FT4 and FT3 levels balanced around 70% through range although some people are fine with a lower FT4 as long as FT3 is higher up the range. Have you experimented and tweaked doses to see if you can find a sweet spot?
Hey susie. Looks like I might have to tweak and freestyle but liked the safety of being monitored by someone that knows what they’re doing! I can’t stop crying 😭
It's not even Midlands, it's quite specific. My Aunt and Uncle said it all the time "do you want a cup of tea duck?" etc. They were in Bedworth. We lived in Coventry just down the road and nobody said that. Not sure how far up the colloquialism goes though. Nuneaton certainly. Tamworth, not sure.
I'm truly sorry you haven't yet found the solution.
I think you now owe it to yourself to try Natural Desiccated Thyroid.
Hopefully early next year we should see supply chains up and running so just try and see if this helps you.
It's a legitimate option offered in other countries around the world, and in some countries the first option offered for hypothyroidism and dispensed and prescribed through hospitals and doctors.
If you stay with the T3/T4 synthetic combo I think the results above would not be high enough through the range for me, and from my experience with NDT I would be looking for a T3 at well over 6 :
In fact, on NDT I now run with an over range T3 at around 110% and a T4 at just 20% : and if anything, still slightly hypo and definitely have no symptoms of hyperthyroid.
though this range, which is just a guideline, and I do not believe designed for people who have had RAI thyroid ablation : though fully understand if you are reliant on a doctor they are probably constrained by these guidelines and not as open minded as I have become.
My vitamins and minerals all need to be optimal which requires daily supplementation and I also take adrenal glandular to compensate for some of what else I believe the RAI treatment damaged when I had thyroid ablation for Graves Disease back in 2005.
Hi pennyannie. How you doing? I even said to him shall I try NDT and he said he didn’t know what it was?! Of course he does and he doesn’t need to fib. He could have just said that he doesn’t promote it.
I think I’ll tweak with what I have as I don’t know how I would go about getting NDT now anyway. I’ll increase my T4 by 25mcg and see what happens 😢
I'm doing ok - thank you - just wish I could say the same for you :
It's not your fault - s/he failed to help you :
Up the synthetic as others have suggested and see how you go :
When I tried a T3/T4 combo it worked and I started with 6.25 T3 + 100 T4 - having dropped down 25mcg of T4 as my level was at 22 and top of the range : I took this all at 3 am in the morning and did feel a bit turbo charged and this wore off by the afternoon.
On NDT I take 57 T4 + 13.50 T3 at around 3 in the morning and am doing ok : I am not turbo charged it feels much softer on my body.
But there's probably no point comparing as they are totally different and again with NDT you dose to relief of symptoms and when optimal you generally see a lower T4 and a higher T3 and a low/suppressed TSH and it's OK. which has always been my stumbling block with the mainstream medical guidelines.
I guess I had better tweak the T3 now that I have it here. All of it is like gold dust isn’t it and I think if I went back to him and asked him to keep prescribing I think he would. I just hope doing some tweaking will help. Time will tell.
What an emotional day!!
It’s nice to hear from you though and I am glad you are keeping well 😀
I purchased the one as in Dr P's book but think it maybe out of stock at the moment :
Referred to as NAX - nutri adrenal extra : there is also nutri adrenal : the " extra " being incorporated vitamins and minerals and there was stock of the pure adrenal supplement when I last looked.
There are other brands and I have tried others, and they all worked, but I try and stay on this one as it's where I started and it's uk and free next day delivery if ordered in the am :
The company is Nutri Advanced in Whaley Bridge - Derbyshire -
My twopenneth...help gained from feeling 'safe' under the care of an endo , however well thought of ,is only helpful to a point. It stops being helpful when they write you off and leave you feeling like you do now.
I think in truth the combined experience and knowledge, measured advice and emotional support on this forum probably is 'safer' than even the most experienced endo.
So don't feel written off and alone.
Keep going.
If i was you i would first try a small increase in Levo of 12.5mcg. wait a full 8/10 weeks at least , get another TSH/fT4/fT3 and then decide what to do next.
I think he's given up too soon ...for example, why would you not try and increase either T4 or t3 a bit, what's the harm in trying ?
And as for the 'you haven't got an adrenal issue' , i think that is a bit like saying you've got a pulse... so you're well.
Just because you don't have such a serious adrenal issue that you need life saving medicine for life, that does not mean they aren't struggling a bit, so you should still consider what you can do to support them.
Thank you!!!!! I absolutely fee the same as though he threw the towel in way too quick!! The assessment of my levels was what I’ve come to expect from normal doctors and I expected more from him!
I imagine if it was him who felt like you do , he might not have been so quick to write himself off , and no doubt would have miraculously remembered what NDT was too.
Yeh right! Shame he didn’t see me as a challenge instead of a lost cause!! These people seem determined to convince me this is CFS or depression and instinctively I feel this is wrong
My Endo offered me counseling when I started to cry because I felt so ill and he said everything was fine. I then got up and walked out of his clinic never to return. I didn't need counseling just treating for my thyroid disease.
I can totally relate to this having seen a psychologist for over a year when medics said I had health anxiety. Lovely forum members here helped me to see that my symptoms were due to being under medicated for Hashis and not having optimal vitamins!
Yeah , well i think CFS stands for Chronic Forgetaboutpatient&filenotesinbin Syndrome.
It's on my notes too, and more fool me , cos it was me who first suggested it, before i knew that 'normal' is worthless when it comes to thyroid. I'm not fixed yet, but i feel a heck of a lot better mentally than i did for 15 years while i accepted that i had hypothyroidism that was 'fixed' and coincidentally also had CFS/ME/Perhaps i'm Crap/ These People Think i'm just Lazy/Doubt Myself Constantly Syndrome.
Best advice i ever had from my grannie..." if you can't be sure which thing is true , ...choose to believe the most helpful one "
Shortly after her second baby she was found trying to finish herself and the baby off with their heads in the gas oven. So they had her committed to an asylum (in1933) and gave her electric shock treatment.
She managed to get out 5 years later, which is no mean feat , cos asylums back then were the original 'Catch 22'. If you refuse to agree you're mad , that proves you're mad. And if you agree you're mad , then you're mad......
She went on to be headmistress of a village school, and did a history degree at Oxford in her 50's
Don't know what she had , maybe Post partum psychosis , but TBH i suspect thyroid influence , cos her daughter got graves and i've got hypo. She went 'wrong' again in her 80's bless her , and they did the electric shock treatment again... and then she wasn't really 'my grannie' anymore.
But i wish i could take her to appointments with dismissive Doctors with me, She'd tell em where to stick it.
Oh my GOD what an horrific story. And we think doctors are bad now lol. What a strong woman but so so sad to be treated in such a way! Of course nowadays she would be helped with therapy and anti depressants suffering from sever baby blues.
Her story gives me strength , cos i remind myself if she could deal with that, and still play the organ in church with a fur coat on , while secretly laughing at the 'respectable ladies in the village who had no idea that she'd been 'put in there', then i can handle a bunch of upstart misogynist doctors who aren't as old as some of my tea towels.
That's just awful! And knowing what we know now, that was hormone disruption. The baby sent her hormones (oestrogen and progesterone + probably thyroid) into free-fall and so they locked her away! Same in her 80's. Some oestrogen would probably have helped her. That "first do no harm" thing really needs rethinking.
So much for the expert! Is he a diabetic consultant?
So sorry that you feel like this many of us can empathise.....been there!Had an endo with no helpful advice!
It looks as if your conversion is reasonable , your FT3 is 59.5% through the ref range and FT4 is 37%......but the Thybon would raise FT3, How much are you taking?
The Thybon, raised your FT3 which would have lowered your TSH.
It looks as if you have been dosed based on TSH which does look ok, but that is only part of the story, medics are now taught to do this but at the expense of both clinical evaluation and the importance of FT4 and ( importantly) FT3 results.
However your FT4 remains low....why hasn't he increased your levo?
It looks as if you need to increase your levo....it could be a straightforward as that! How much were you taking
When medicated, both Frees need to be close to 75% through the ref range.
Have you been diagnosed with CFS?
Research has revealed that a number of CFS patients are suffering from low T3
As another possibility....Has anyone suggested that you may have some form if thyroid hormone resistance? In the most basic terms it means the T3 is not reaching the cells/tissues from the blood, in sufficient quantities.
Your situation reflects some of my experience, though I'm not suggesting it is the same just suggesting another route you might want to investigate.
I now take a large dose of T3 only ....my thyroid journey is detailed on my profile.
T3- only and self medication being the last resort.
I am inclined to suggest you read this e-book which is available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton
Don't despair there usually is a way forward .....that route just needs to be teased out of clues! You need to be correctly medicated.....try increasing levo first. Another 12.5mcg to start with, then re- test.
Just a few thoughts which might help lift the gloom!
We're all in this thyroid mess together so come back with as many questions as spring to mind
Thanks dippydame! I am taking 15mcg Thybon a day split in to 3.
I think my TSH was around 2 when we started and I only started Thybon six weeks ago. He has binned me off super quick!!!
I am on 125mcg levo so like you and the others say I’ll increase that a bit and see how I go. I’ll keep taking the T3 too now that I’ve paid for it lol. I have that gene thing so guessing it might help me.
Yeh was told I’ve got CFS but think they said it to stop me making me appointments lol! I felt very unwell after reducing levo so think I’d have to keep taking it personally but it’s something I can look in to later down the line.
I’ve had a good cry and brushed myself off and am ready to try something else!
Me too! It makes me see red that we have to wade through treacle in wellie boots to try and find the answers after the "experts" have left us struggling.It's not rocket science!
Glad your ready to tackle something else
I don't think you are depressed....just understandably hacked off!
I'm having one of these days too. My GP waded in and pressurised me to drop my large T3 dose, she thought my heart was at risk ( echocardiogram shows no problem ) so stupidly I listened rather than rocking the boat. Huge drop in T3....
Biiii...gg mistake, now I've got to stabilise my T3 dose again. I usually self medicate......and now feeling like a bear with a sore head!!
This too will pass....at least I know what the problem is.
Listen to your body.....you understand it better than anyone else!!
Ha! Oh he was nice though. And he has helped a lot of people on here. I thought he might try other stuff with me. I am quite surprised and disappointed as thought he was the best
Unless you’re in your 20s your t3 looks too high and your tsh way way too low. TSH has several other functions beyond stimulation of the thyroid gland and there’s no evidence that it should be suppressed below normal (1-2) on thyroid replacement. Your TSH is 100 x below upper range (4.0) quoted. You could try reducing t3 and increasing t4 but that may also keep TSH suppressed. For me the least symptoms associate with 16-18 ft4 4.4-4.6 ft3 and 1-2 TSH which is logical because they are close to euthyroid normal with ft4 slightly higher because I’m a low t4-t3 converter and need a little more. These things are an exquisite balancing act and amelioration of symptoms is not just about hammering out the hypothyroidism, it’s getting the balance just right. If you haven’t tried running at TSH around 1.0 then how do you know you’re optimally treated?
You may be overdoing the t3 and that may be clouding the issue, disrupting your bodies feedback mechanisms. In the face of uncertainty why not go for unequivocally normal healthy levels there’s a lot of guff talked about upper parts of the ranges and often these are referencing lab ranges which are not healthy normal ranges! Healthy normal ranges are defined by data from thyroid healthy epidemiological studies and trials with unhealthy thyroid individuals excluded. The majority and most common levels are in a much tighter range than lab range eg tsh 1-2 ft4 15-18 ft3 4-5 and your personal range may be tighter still, you just need to find it! Easier said than done but if you’re not sure what’s going on why not aim for normal healthy range for a few months and then see....
I am not sure how I would achieve this though to be honest. My TSH a couple of years ago was 4.57 and I was just on T4. Are you saying I could lower it by increasing it? If so I was planning on doing this anyway actually.
Our response to thyroid replacement changes over time especially from the early days of being first diagnosed. TSH is affected directly and separately by t4 and t3 and my experience is that t4 has the biggest effect and a small amount of t3 reduces the tendency to have too much t4 if we don’t convert efficiently t4 needs to be just right!
Whilst I understand your comments I'm not sure you have picked up on the fact that the O/P has Graves Disease and been through RAI thyroid ablation.
So the feedback loop is broken and the TSH a totally unreliable measure of anything, and the O/P needs to be dosed and monitored on T3 and T4 bloods test results.
If this isn't difficult enough to deal with I now read that the O/P is positive for the gene defect and that conversion of T4 into T3 even further compromised :
The hypothalamus and the pituitary are still likely responding to thyroid hormone levels whether thyroid tissue is present or not. Even if the thyroid gland is physically out of the loop, it’s not much different to a nonfunctional thyroid gland in situ is it? The issue maybe more whether there’s a condition that has a clinical requirement for suppressing TSH ? And as I understood it the condition is now primary hypothyroidism not thyroid cancer (Which would require suppression of TSH). unless there is a secondary thyroid pathology such as defective hypothalamic/pituitary response then TSH will be doing something of significance in response to thyroid hormones from replacement. It may still be an useful marker of thyroid state and to check it’s not being suppressed for no clinical reason. TSH is of functional significance elsewhere in the body eg with receptors in the bone osteoblasts.....and is also thought to play a role in extra-thyroidal thyroid hormone conversion and transport.
There is the issue of the Graves antibodies in that they can " sit on " and attach to the TSH receptors driving down the TSH - and no one knows if they are ever released from the receptors and this is why a TSH in a Graves Disease patients can be a very misleading and unreliable measure of anything.
At diagnosis the Graves antibodies would have been identified in bloods and they are the drivers for the thyroid going overactive, by attaching themselves to the TSH and driving it down causing the increase in thyroid hormone production.
The thyroid may now be burnt out and disabled, by RAI thyroid ablation and the feedback loop broken but the Graves antibodies are still there, present and able to keep the TSH " looking like " you are overmedicated when in fact the very opposite is more likely the case.
You can read more technical detail on Elaine Moore 's Graves Disease Foundation website :
I agree, I don't think my TSH works anymore because it does not reflect how I am feeling. I go by what my T4 and T3 is and I need my T4 to be very high in the range to feel well. I am in my second remission at the moment and feel well but I know this won't last forever unfortunately.
Well, I don't know where my TSH was when diagnosed Graves - I just felt exhausted as I had done for most of my life but then in 2003, with dry gritty eyes and insomnia, so presume, knowing what I think I know now, with over riding " blocking " as opposed to " stimulating " Graves antibodies.
After RAI for several years I felt much the same as before and never questioned my thyroid hormone replacement dose, and accepting that I was then 60 + years old.
Around 7/8 years after RAI ablation in 2005 my dose of Levothyroxine was reduced because of my TSH - and I became more unwell : this went on for a period of years and I was always suppressed with a TSH at 0.01 - told off - like it had anything to do with me !!! and my dose dropped, then upped when I complained about more symptoms and was on a continual T4 dose seesaw and given anti depressants.
At one point in 2014 my TSH rose to 15 - I knew nothing about it and felt no different and referred to as a conundrum :
So, anyway, I think it is the T3 and T4 that we all need to be dosed and monitored on :
The issue of course is finding that little dot on the graph that gives you back "you " and when you are with Graves post RAI thyroid ablation looking at a TSH blood test result is a total waste of everybody's time and money.
I felt quite unwell when I dropped just 25mcg of levothyroxcine though so who knows. I think I’ll mess around with my levels and if that doesn’t work I might try NDT again. Failing that T3 only. Long old road!!
1 grain NDT contains about 38 T4 + 9 T3 : amongst other things :
A fully functioning working thyroid supports you on a daily basis with approximately 100 T4 + 10 T3 : with the average person using about 50 T3 daily just to function.
If you have the gene and know you can't convert well T4 into T3 you would therefore need about 5/6 grains x 9 mcg T3 content to get close to around 50 T3 :
I'm only on 1 + 1/2 grains NDT so that works out at 57 T4 + 13.50 T3 and doing ok : so presume my conversion is pretty good, though I do supplement daily ferritin, folate B12 and vitamin D + adrenal glandular.
The less able you convert T4 into T3 the more NDT you will need as the T4 component is a wasted as you can't utilise it.
You become totally reliant on just the T3 content and you would need around 5/7grains on NDT to get to a total content of around 50 T3.
So it would probably be easier and cheaper to buy and dose with just T3 .
You are a very clever lady and you just carol vorderman-d me haha 😂
I do wonder though why it is the T3 has not made a jot of difference. I thought I would expect a weeny bit of change if my body was so thirsty for it, ya know?
It’s very kind of you to share your knowledge and advice with me. I have had less help from people that I pay twenty quid per minute too.
I think it's just a question of balance between T3/T4 :
Imagine a seesaw - one end a little girl - the other end her big sister - well they will not have much fun as she is sat high in the air and her sister is suck down in the mud.
Best fun is when you have some balance between the 2 and they can bounce off each other - and that's how I see the relationship between these 2 hormones :
T3 is said to be about 4 times more powerful than T4 :
The conversion ratio is said to be around 1 / 3.50 - 4.50 - T3/T4 - with most people preferring to be around 1/4 or lower in their T3/T4 blood test results when on Levothyroxine only :
Over 4 and you are struggling to convert T3 into T4 : the wider out this goes out the more you need a T3/T4 combo to bring both T3 and T4 back into range and balanced within the ranges.
Look at your blood test results when on Levothyroxine only :
Divide your T3 into your T4 and what ratio do you come up with ?
Mine came in at 1/5.50 though told this was acceptable ???
With a dose increase in T4 it came in at 1 / 4.5 and I felt much better but not perfect :
But told I was then overmedicated because by then my TSH was - yes - you guessed it 0.01 and told I needed a dose decrease in Levothyroxine.
You can pay via Paypal - after you pass my test on the seesaw - you can go to the playground tomorrow and see what you find : if you haven't a playground - think of a pair of scales - and how much baking powder / cream of tartar / bicarb to plain flour for a successful scone ?
Maths was never my strong point and even less so now. I can struggle to find words when I talking so any mental acrobats such as making plans or arithmetic and my brain hurts! Even before I became sick I was the type of person that would lose at Connect4!!
Thankfully you guys are fab at helping me so my brain can take a day off, phew!!
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