I'm new to this site. I had Graves Disease in 2018 and had a thyroidectomy in 2019. I have since been on levothyroxine 100micrograms. My last Blood test in January 2022 showed that I needed to increase the levothyroxine so the doctor increased my dose to 125micrograms. I have now had another blood test after 3 months of being on the higher does. I feel it is too high and I think that my blood tests show this. I've got call with the doctor on Monday but thought I'd see what others thought. My blood results are as follows:
TSH level 0.07 mIU/L (0.27 - 4.20)
T4 level 25pmol/L (11-22)
T3 level 4.8 pmol/L (3.1 - 6.8)
I'm very interested to see what people think and what does they suggest I should be on. I'm also interested in whether my T4's are being converted to T3's properly.
Thanks in advance
Written by
artygirl12
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Your FT4 is over range but it looks as though it needs to be high to produce quite a modest amount of T3. Your FT3 is only 45.95% through range. So it looks as though your conversion could be a lot better.
Good conversion needs optimal nutrient levels, so you need to test
Vit D
B12
Folate
Ferritin
Perhaps you can get these tested and post the results, with their reference ranges, on the forum and we can let you know if any need improving and suggest what you may need to supplement.
If all nutrients are optimal - which are
Vit D - 100-150nmol/L
B12 - top of range for Total B12, and for Active B12 over 100
Folate - at least half way through range
Ferritin - half way through range although some experts say the optimal ferritin level for thyroid functionis 90-110ug/L
If these are optimal and conversion stays poor then that suggests you may benefit from less Levo and the addition of some T3.
Thank you so much for your reply, I will ask the doctor if I can get these all tested and post the results. I can tell my balances are not right and I struggle with weight. Im not if the weight is just me or things aren't running right. It would be good to know.
Yes the test was done at 8.50am 24 hr ish after. I have changed brand when I changed my doctors and they have a dispensary, that was about 6 months ago. The brand I currently have is TEVA.I do take vit D and Vit B12 as I'm vegan but I must admit I don't take them as much as I should. And I didn't know that I should be for my Thyroid. When I do and will from now on I take 1000mcg B12 and 2000IU bit D3. I do get these those in some vegan products that are fortified with them.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Thank you so much for all this information, certainly a lot of food for thought. I appreciate your thoughts on B12 being vegan. It is quite common that if you try a vegetarian diet or vegan without proper knowledge you can be low in B12. I do substitute this and have Vit D3 but I'm not regimented taking it but will from now. I will get my vitamin levels checked as well just to see if I'm lacking in anything. I really do appreciate all these words of wisdom. I'm just hoping I can battle with the doctors to get properly treated here in the UK. A very frustrating prospect that we don't get the proper medication we should be entitled too!!
I too have Graves Disease but had RAI thyroid ablation back in 2005.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 is a storage hormone and inert, as it needs to be converted by your body into T3 the active hormone that runs the body and is said to be around 4 time more powerful than T4 .
Your conversion of the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing.
So whilst we can't do something about everything that life throws us, we can try and maintain our core strength vitamins and minerals and be better placed to go forward.
It is essential that you are dosed and monitored on your T3 and T4 blood test results and we generally feel at our best when our T4 is in the top quadrant as this should, in theory, convert to a good high T3 number at a ratio of around 1/4 - T3 / T4 :
The accepted conversion ratio when on T4 only is said to be 1 - 3.50 - 4.50 - T3/T4 with most people feeling best when their conversion comes in at 4 or under : so to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 5.20 showing poor conversion.
The logical next step is to ensure that all your vitamins and minerals are optimal as no thyroid hormone works well until these are strong, solid and suggest you ask your doctor about adding back in " your lost T3 thyroid hormone " from having had a thyroidectomy.
Currently doctors in primary can only prescribe T4 and you will need a referral to an endocrinologist to be considered for a prescription of T3 - Liothyronine.
It is sadly, still a post code lottery as to if your CG support T3 prescriptions, but it would obviously make sense to replace like with like and restore your T3 which will likely kick start your metabolism.
Thank you so much for your insight into it all, it certainly helps. I will definitely get my vitamin levels checked to see if anything is out of whack. And it sounds like I'm going to have to battle for T3 medication, but I like a challenge. I'm currently waiting for a call now from my GP to see what they say. I have a feeling they're going to lower my Levothyroxine as I'm low in TSH making me hyperthyroid, but this will then lower my T3 dramatically! I hadn't really looked into any of this before, it is certainly eye opening and explains why I've been progressively gaining weight since having my thyroidectomy. I really appreciate all your wisdom.
Your TSH is low because you are taking thyroid hormone replacement.
You haven't a thyroid to " go " hyperactive - you thyroid has already gone into a bin !!
Since you haven't a thyroid, you are primary hypothyroid and totally reliant on thyroid hormone replacement, so in theory, you can only ever be under or over medicated, and you currently have symptoms of hypothyroidism and not hyperthyroidism.
Your issue is one of poor conversion of T4 and a referral to an endocrinologist with a view to prescribing T3 to rebalance your T3 and T4 thyroid hormones would be the next best step.
Since your haven't a thyroid - your HPT axis - your Hypothalamus / Pituitary / Thyroid feedback loop on which the TSH is based is broken as your thyroid isn't there any longer to complete the circuit.
As I thought having spoken to the doctor they told me my T3 is in range so no problem and reduced my levothyroxine back down to 100mcg. She didn't think this would change my T3 so I will do this and go back for a blood test in 2 months. As they don't normally test for T3 as standard, my last one was in 2019, she told me that was enough for her to know that all was ok. So I will wait to see what happens on the next blood test, apparently if it does drop only then can she refer me to endocrinologist and only they can prescribe T3 medication. At the moment apparently I'm good!
In the meantime I will have my vitamin levels checked etc..
Are you sitting there wondering why no one has replied ?
You need to write replies to ' somebody ' for them to be notified you have said something else - I just sensed you would have left feedback and searched you out !!!
Most posts are replied to as fully as possible on first read and any ' new information ' deserves a ' new ' post for full readership of members, and we look back at previous posts if we need to.
Sorry your appointment was a waste of time :
Your T3 will likely always be ' in range ' but not at a high enough level for your health and well being as you have ' lost ' your own T3 production when you ' lost ' you thyroid.
It's more about the ratio between the T3 and T4 and your conversion ratio is way over the accepted range at over 5 and T3 and T4 need to be balanced in the ranges at around a 1 / 4 ratio. T3 / T4 :
Reducing your T4 will likely, in the short term, do nothing to help you - but put T4 into the range, with your doctor thinking that's the answer - it is not.
Imagine 2 children on a seesaw - best fun happens when they are of around equal weight as they can respond and challenge their efforts and energy - bouncing and responding to each other.
Currently your T4 is too high and your T3 too low to be effective within your body and metabolism , and since you haven't a thyroid, and your T3 only derived through taking T4 it can become a vicious circle when on T4 monotherapy.
Optimal ferritin, folate, B12 and vitamin D will help your ability to convert T4 into T3 but as you've lost your own T3 thyroid hormone production the logical answer is to replace this T3 .
You could self medicate and buy your own T4 or T3 or any other thyroid hormone replacement for that matter.
I think you need to consider whom you might like to be referred to on the NHS or privately.
Thyroid UK - the charity who support this forum hold a list of supportive, recommended, endocrinologists and specialists, both NHS and private, and it might make sense to contact the charity for this patient to patient list.
Scrolling up this screen Thyroid UK now have over 125 K members - when I started my learning curve on here some 6 years ago I think I remember seeing 113 K people looking for help ???
Hi, I just wanted to say how informative I have found your response and helpful although frustrating that your general GP has really no understanding of the thyroid apartment from the basics. I decided to wait to see what happened after the GP dropped my dosage back to 100micrograms. I was hoping that just maybe my T3 level would drop out of range so therefore I'd be able to argue the case to be referred to an endocrinologists. But no such luck! its lowered but just about in range. Here are my new blood test results:
Well yes, as predicted and I'm not a fortune teller as this happened to me as well.
Although your T4 was over range at around 130% through it's range your T3 was at 4.80 and around 46% through it's range.
Now with a dose reduction we are looking at a T4 in range at around 60% BUT a T3 of just 3.80 some 19% through it's range and you must be feeling horrible :
Though your doctor has achieved his goal of having the TSH, T3 and T4 in range and believes s/he has done a good job and it therefore must be " all in your head " and maybe suggests an anti depressant " ??
OK so now there's probably a discussion to be had to increase back up again, but by only half the amount of the last dose reduction - what was that 25 mcg T4 ?
Even so your conversion is still wide of centre coming in at around 4.75 and your metabolism still struggling to get started.
The logical solution is to prescribe a little T3 to replace that lost T3 from when you had a thyroidectomy and in this way these 2 vital hormones can be rebalanced as nature intended.
No thyroid hormone replacement works effectively until your core strength vitamins and minerals are up and maintained at optimal levels - so you need to check your ferritin, folate, B12 and vitamin D levels and supplement where appropriate as when metabolism isn't happening it's extremely difficult to extract your essential nutrients from your food, no matter how well and clean you eat.
I know I feel at my best with a ferritin at around 100 : folate 20 : active B12 75 ++ and vitamin D at around 100.
Having been refused any help nor understanding through the NHS I now self medicate and am much improved.
Some people can get by on T4 monotherapy :
Some people find that T4 seems not to work as well it once did and need to add back in a little T3 to rebalance and restore health and well being - making a T3/ T4 combo :
T3 - Liothyronine is said to be around 4 times more powerful than T4 - Levothyroxine.
Some people can't tolerate T4 and need to take T3 only :
Some people find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones of the human gland and derived from pig thyroids dried and made into tablets referred to as grains.
Twenty odd years ago all these treatment options were available in primary care and your doctor could try you on the various options until you found hat worked best for you.
As explained previously you will now need a referral to an endocrinologist if you want to pursue this further through the NHS.
I suggest you contact admin at Thyroid UK - who are the charity who support this forum, for the list of ' sympathetic specialists and endocrinologists ' and at least try and get referred to someone who maybe able to help you. thyroiduk.org
It may mean travelling outside your own CCG area as writing a new patient prescription for T3 - Liothyronine is an additional difficulty - and if you go into openprescibing.net and then analyse you can see by surgery and CCG where the T3 prescriptions originate and it gives some clue as to your own surgeries support, or not.
elaine-moore.com - all things Graves Disease and the most valuable of all the websites I researched through apart from Thyroid UK and this forum.
Your Thyroid and How To Keep It Healthy - written by a doctor who has hypothyroidism another go-to of mine. Barry Durrant - Peatfield writes for patients and his mission was to enable patients to self advocate and if all else failed, self medicate. He writes in any easy to understand, insightful manner and explains our basic physiology and how important the thyroid is and what you can do to help yourself.
Thank you so much, I do feel terrible, really sugglish, lack of energy, tired and my metabolism is so slow. I just don't feel right in myself at all. So this really does help to know it's not just me. I will pursue what you've suggested. I'm going to start by seeing if there's anyway I can get a referral to an endocrinologist. I will ask the doctors but as you say they feel they've done their job. I'm going write to thyroid.org to see if I can get a list as you recommend. Can I just ask how you self medicate? this also interests me.x
You just need to email Thyroid UK - if you scroll up here you'll find their logo etc :
Yes I didn't start my own research until around 8 years after RAI thyroid ablation when I became very unwell - so you're not the only one working backwards to understand their diagnosis, and the treatment and medication options :
The most recent research actually bears out my situation :
If you wish to read my profile ( and find yours )afterwards - press the icon alongside my name here and you will be taken to all my posts and all my replies to other forum members :
No you are not alone - and it's was mainly through this amazing forum that I'm here today trying to ive back where I feel i can help as the situation is ridiculous and everything is down to costs and not medical needs.
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