I had the TPO antibodies test and scored Negative (9 IU/mL0).
My folate 8.1 ug/L, ferritin 86 ug/L and B12 335 ng/L - tested last year
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I’m looking for advice on what to do. Many years ago when I was in my twenties I had a few illnesses occur close together (mono, food poisoning, bladder infection and allergic reaction to antibiotics). A little while after I started feeling cold, my body temperature dropped, my hair which was always a bit fine really thinned out, hair disappeared from arms and most of my lower legs. My eyes were always a bit puffy from allergies but they looked worse. I developed dry eyes, dry mouth and bad fatigue. My weight started going up and although I switched up my diet and exercised regularly I only ever really lost water weight and then stalled or gained a few pounds.
The doctors did lots of blood tests and couldn’t find a cause but said I had hypermobile joints, inflammation and fibromyalgia.
I went to a private clinic for the t3 test because the gp said no and got these results which indicated that my t3 was low. I sent the results to my gp who said they would follow it up but did nothing. They said my T3 wasn’t low enough to be causing the issues I was having.
2007 thyroid test
Serum TSH level
1.18 mIU/L - 0.27 - 4.2
Serum free T4 level 17.4 pmol/L -12 - 22
FREE T3 - 3.7 pmol/ 4 - 6.8
I didn’t improve so just mostly lived with the issues and managed them the best I could. Fast forward to me going through the menopause and feeling even worse I decided to go back to the gp. They did some bloods and all are in normal range except cholesterol but they refuse to test for T3 and have said that even if my T3 free is low they would not prescribe T3 meds anyway. I got tests done privately and have posted the results at the beginning of the thread.
Does my recent test mean it’s not T3 causing my symptoms or could it be that being on the lower side of normal means it could be?
Thanks for any advice given.
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Whyamisotired111
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That was the results for my 2007 test. I think that was what was considered normal back then. My 2024 one with the current test levels is at the beginning.
Thank you for all this information - it's really useful and I'm going to go through it and check everything.
I had the TPO antibodies test and scored Negative (9 IU/mL0). I haven't done the TG thyroid test yet but will look into having it too as I did think it might be autoimmune related and possibly Hashimotos.
*I took the tests in the morning before food but after a glass of water.
My folate 8.1 ug/L, ferritin 86 ug/L and B12 335 ng/L were tested last year and according to my gp are in the normal range. I am scheduled to take a vitamin D test. I had a vitamin D test via my GP in 2010 and was told they would contact me if it was low and never did. As I now check my blood tests online, I see that it was 13.1 ug/L back then and probably explained my chronic back and bone pains that went away after I started supplementing.
I take a methylated b vitamin and occasionally b12 (stopped b vits a few weeks before my test) and vitamin c, vitamin d3 and k2, omega 3 fish oil and other things like l-tyrosine and l-lysine. I also included brazil nuts, some other nuts and seeds (chia etc). I did supplement with biotin and selenium before but stopped after switching to a multi b vit and adding in brazil nuts and seeds.
*I'm on hrt and that made me feel a bit better in terms of energy and brain fog. *I'm also taking Mounjaro and that has helped my muscle aches and pains a lot and I feel better than I have in years. I still feel cold, low body temp, dry eys, skin, scalp and sparse hair on legs and arms but my energy has improved. Recently I've seen some hair start growing back recently so things might be improving due to the anti-inflammatory effects of Mounjaro.
My folate 8.1 ug/L, and B12 335 ng/L were tested last year
Was this BEFORE starting on Vitamin B complex?
You want B12 at minimum 500 and folate at top of range
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
The tests were before I added the b supplements. I take a methylated b vitamin complex and b12 sublingual methylcobalamin. I did feel better (energy wise) after starting them but still feel like my bvits need tweaking. Once I have the new tests done I will be able to see if they've helped and I will have a look at your recommendations too as the ones I take have folic acid and not folate, although I do have some methyl folate ones I haven't taken yet. Thank you for the reading suggestions, will start reading as bedtime material
*I stopped my b vitamins a few weeks before the test as I didn't want to skew anything up.
I'm in the UK. The test was done via the NHS. I'm not sure why it's showing in ug/L -it might have been because it was in 2010. It will be interesting to see what my vitamin D is now and I'm planning to get it up to around 80nmol or more.
Thanks for the links for the supplements. A spray would be good as I have gut issues.
I found magnesium to be a life saver for my muscle pains and general health.
High doses of Biotin /vit B7 can affect T3 result (and TSH and T4)
Low T3 might just be your running level, it is a range where 95% of "normal"
I am wondering if low conversion of T4 to T3 which happens to some of underactive thyroid types, is a thing with healthy thyroid. Someone more experienced may comment.
Slowdragons advice about tests is good eg antibodies.
I am out of my depth but things help to convert like selenium. Underactives would optimise vit D B12 ferritin and folate to aid conversion. (I think)?
I stopped taking b vitamins around 3 weeks before the test. I had one of the antibody tests and it was negative but I'm going to get the other test done too.
I'm trying to increase my vitamin d, b12 and folate with food and supplements, and trying to improve selenium with brazil nuts but I may need to trial a selenium supplement if things don't improve.
Put simply because your T3 reading is too low compared to your T4 reading and you are not converting well the - T4 - Levothyroxine.
T4 - is a pro-hormone and needs to be converted in the body into T3 - which is the active hormone that runs the body much like fuel runs a car -
We generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range and with a conversion ratio at around a 1/4 - T3/T4.
Currently you T4 is around 74% with your T3 at around 19% -
The accepted conversion ratio is said to be 1 /3.50-4.50 T3/T4 and we generally feel best when we come in this range at 4 or under -
currently your conversion ratio of coming in at around 1/5- ( divide your T4 by your T3 ) so wide of the centre showing you struggling to convert the T4 into T3 and it was also the same problem way back in 2007 .
In order to fully optimise and convert the T4 thyroid hormone into T3 we do need optimal levels of ferritin, folate, B12 and vitamin D - in fact - which ever thyroid hormone replacement you take - you will need to maintain optimal levels these vitamins and minerals.
You may have results of these core strength vitamins and minerals already - please share if you have - as it is not about being in the NHS ranges somewhere, anywhere - but -
as with T3 / T4 thyroid results / ranges - it's where in these ranges you feel at your best :
It sounds as though your doctor has ' knocked you back ' regarding T3 thyroid hormone replacement - Liothyronine - probably because s/he can't prescribe it -
as currently you need a referral to a NHS endocrinologist to be assessed as to your need -
added to this fact is that currently getting T3 prescribed on the NHS is something of a post code lottery with ICB / CCG financial constraint being implemented in some areas of the country over patients medical needs.
Currently your GP can only prescribe T4 and many offer anti-depressants as a second option which do not work when there is an obvious medical need and many patients feel confused, not listened to and believe ' its all their head ' and struggle in a diminishing circle of wellness.
If you go into openprescribing.net you can see by primary care provider if your surgery is supportive of T3 and if it is actively being prescribed which might help you in getting T3 prescribed as a new patient - just enter Liothyronine as the drug you wish to search.
Many forum members have forced to buy their own thyroid hormones as NHS treatment options have been reduced over the years - but first off - we need to check out your vitamins and minerals as this is a necessary first step which ever way you move forward - with the help and support you will find on this patient to patient forum - back to better health.
High cholesterol is associated with hypothyroidism and it's advised to treat the hypothyroidism first - before throwing more drugs at the ' so called ' other health issue.
The lack of body hair is an obvious symptom of hypothyroidism - were you investigated for the dryness being experienced in your eyes and mouth - I was investigated for Sjogren's - but that came back negative and then learnt by reading around that my symptoms were caused by the RAI treatment I was given for Graves Disease back in 2005.
P.S. Please ensure any eye drops or ointments you are using to ease the dryness/grittiness - for your eyes are Preservative Free - even those prescribed :
I've never seen a conversion for T4 and T3 and this really shows the poor conversion and highlights what the issue is.
I had the TPO antibodies test and scored Negative (9 IU/mL0).
My folate 8.1 ug/L, ferritin 86 ug/L and B12 335 ng/L - tested last year
I also had really low vitamin D (back in 2010 but never notified by GP) and am due to get test soon. I'm hoping it's now in the normal range as I supplement and my back ache and bone pain went away after taking it for a while.
I've asked to be referred to an endocrinologist because of my symptoms and my old test but they refused. They also refused to test for T3, said it was too expensive and as they don't treat low T3 (only low T4) there was no point. I will push back at my GP because I have my test results and will mention the low conversion rate but I'm at the point where if they do nothing, I'm prepared to go private just to feel better. I did also say to them that rather than throwing pills at me for high cholesterol, high blood pressure, eye drops etc they should treat the cause but got nowhere.
I did see someone at the hospital and an optician via my GP about my dry eyes and they diagnosed clinically dry eyes but no solution except over the counter eyedrops and an eye ointment that didn't really help. *I recently heard about Sjogren and am planning to get tested for it. *I will make sure the drops and ointments are preservative free from now on - thank you.
I did have a consultant gaslight me years ago about it being fibromyalgia saying it was a made up disease and all in one's head, so after I said some nasty words, I gave up trying to get help through them for years and just suffered and tried to manage the extreme tiredness. I overhauled my diet and made changes which made me feel overall better but the specific symptoms related to hypothyroidism still persist.
*I'm on hrt and mounjaro. After a few weeks on mounjaro the pain I've had for years has eased up (before any weight loss) and has allowed me to be able to take up exercise again.
A full thyroid panel to include the TSH, Free T3 and Free T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D - is the next best step - and follow SDragon's instructions ias to how and when to do a thyroid blood test.
and as I detailed it is not about just being in a NHS range somewhere - but achieving and maintaining a strong body core and eating healthy, cooked from scratch meals -
not everybody has o/range thyroid antibodies - but we all seem to improve on non processed foods with many cutting out gluten, dairy, wheat - as symptoms dictate.
Exercising will deplete your low T3 faster than gentle exercise such as walking -
I have no knowledge of the implications of Mounjaro when taking thyroid hormone replacement -
but do know from reading on this forum that some when they start HRT need to increase their thyroid hormone replacement.
It might help you to start reading around on the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com
Sjogren's is ultimately diagnosed by a lip biopsy - it all takes so much time - and not 100% anyway - but just maybe helps on a medication front - what do you do now to ease this issue.
For your eyes are you aware there basically 2 forms of Preservative Free -
light water type droplets and sprays for daytime use and heavy duty grease in little tubes that lasts overnight and that you squeeze into your eyes last thing at night as this will distort your vision.
I'm due to get tests via the gp soon and this will include all of the ones mentioned except the Free T3 and I'm not sure about the inflammation ones but will do some research. I'm trying to increase my b12, folate and ferritin through diet and supplements to be more optimal because the normal levels don't always meant good health for me..
My diet is relatively healthy now. I have processed foods occasionally but it's mostly protein (meat, fish and vegetarian options) with a range of vegetables, some fruit, nuts and seeds, and some carbs like rice, couscous and I make my own tortillas with gluten free flour. I don't eat dairy due to it causing migraines etc and I usually don't eat gluten anymore because it makes me feel more tired, bloated and unwell.
I used to walk a lot but had to stop due to the pain and settled for 10 minute walking sessions. The exercise I do is on an exercise bike because it lessens the impact on my joints and I'm going slow and steady.
I will read up on the research of Dr Izabella Wentz as I'm out of touch with any up-to-date information now.
i’ve tried quite a few different eyedrops and most don’t really help except heavier and thicker ointment style . I’m using Thealoz Duo Eye Drops (preservative free) in the day and used Gel Tears in the evening, but switched to a thicker ointment in the evening with better results. Also the Opticrom eye drops during hayfever season. I'm looking into Meibomian gland dysfunction as I think that may also be an issue with what's going on with my eyes.
I will see how I get on with everything else before going down the Sjogren's route as there's a lot to go though.
Thank you for all your help and advice. I was feeling a bit lost and overwhelmed with information before but this helps me with how to move forward.
Ok then - just remember it is a fasting thyroid blood test ideally by 9.00am -
just take in water until after the blood draw - and take your Levothyroxine for that day - after the blood draw so you have around a 24 hour window since your last dose of T4.
If taking any supplements containing the vitamins and minerals you are having tested leave these off for around a week prior to the blood test as we need to measure what your body is holding and not that recently ingested - and anything containing biotin needs to be not taken for around a week as this can ' mess ' with the analysis substances used in some laboratories.
For maximum absorption T4 needs to always be taken on an empty stomach with water and you need to wait around an hour after taking the Levothyroxine to eat or drink anything other than water.
Supplements need to be taken well away from T4 - and ferritin well away from every thing else expect possibly vitamin C to aid its absorption -
I take my thyroid hormone replacement in the middle of the night at a toilet break - as it can get difficult fitting everything in -
Yes- normal nothing when hypothyroid - as our bodies have a slowed metabolism - until we are optimally medicated - and even then, we need to maintain certain vitamins and minerals if we can't build back alone through good, clean food choices.
I'm not taking T4 supplements but I did stop taking the b vitamins a few weeks before the thyroid tests. Do I need to stop taking the b12 before the b12 test (and the same for vitamin d) or are are those okay as I'm wanting to raise by b12 etc?
It definitely feels like everything is in slow motion and it doesn't help that I have stomach sensitivities. I do feel much better energy wise when I eat a clean diet and avoid dairy and gluten. Just need to get these hypo symptoms sorted.
In your reply you mentioned when to take Levothyroxine - so I thought you thought I was taking T4 meds. I might have read it wrong, if you was saying when to take Levothyroxine in general.
Yes - you are right - I thought you were already diagnosed hypothyroid - apologies :
Ok - so a euthyroid - ( normal thyroid ) would have a TSH at around 1.20-1.50 - with a T4 at around midpoint so around 50% through its range with your T3 tracking just behind at around 45% through its range.
So your TSH is a little high - your T4 a little high and your T3 a little low - but I'm afraid none of them will be seen as needing medication.
The NHS only tests one set of thyroid antibodies - a private blood test for both sets of antibodies might show something - or perhaps a thyroid scan is likely the definitive proof of a thyroid health issue - but you would likely need to get the tests done privately and the NHS is not obliged to accept private tests - though might force their hand into further investigations.
That’s interesting that my TSH and T4 are both a little high but the T3 a little low. I looked at my blood test form and it just says Thyroid antibodies test so I’m assuming it will just be the same TPO one that was included in my private test.
I will follow up with my GP and send them the results but I’m not expecting them to do anything.
I’m going to read up and try to improve my conversion to T3 and do what I can with nutrition and supplements and then retest.
Thank you for all the advice and the Sjrogen’s link.
around 10/11 biomarkers and includes both thyroid antibodies, inflammation, and the core strength vitamins and minerals as well as the TSH Free T3 and Free T4 :
I think SlowDragon gave you all the necessary information and links should you wish to get this blood test taken privately it is the most comprehensive and from which we can understand better exactly what is going on - though the NHS are not obliged to accept private blood tests - it might just help in getting further NHS investigations.
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