My new Endo as suggested because not allowed to give t3 that on a trial basis I should increase my thyroxine by 125mg a week to try and bring my low t3 levels up and improve the way I feel even though it would bring my tsh under 0 and take my t4 well over the normal blood ranges. As this worked for anyone please and how much better do you feel?
Increasing thyroxine levels to increase t3 levels - Thyroid UK
Increasing thyroxine levels to increase t3 levels
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carroll9988
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My T4 levels need to be slightly over the top of the range but unless I've got the wrong end of the stick a recent study is saying this can cause Atrial Fibrillation which I do have so seems we can't win 🤷♀️
Hi she is aware I have episodes of A FIB too ! But because I am on beta blockers and warfarin doesn't see this as a problem. Need to speak to the gp pharmacist to increase thyroxine then I will begin the higher dose. I really hope it works.
I'm on Bisoprolol and Apixaban plus have a pacemaker but we need to know if there are any longer term problems with the Afib having a higher T4.
I think if there is I will soon find out. Sometimes in life we have to take a risk, its a personal choice x
SlowDragonAdministrator
What are your most recent thyroid and vitamin results
Maintaining optimal vitamin levels can help improve conversion of Ft4 to ft3
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially on just levothyroxine
Do you always get same brand of levothyroxine.
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
If Ft3 remains low once you have Ft4 in top third of range and all vitamin levels optimal ......Endocrinologist can and should prescribe T3
T3 cost is dropping significantly. Down from £260 to £121 for 28 tablets. Cost is not a reason not to prescribe, if patient has clinical need
Which CCG area are you?
Email Dionne at Thyroid U.K. for list of recommend thyroid specialist endocrinologists who will prescribe T3
tukadmin@thyroiduk.org
High Ft4 over range is the risk for Atrial fibrillation
thyroidpatients.ca/2020/09/...
I live in Nottingham so under Broxtowe ccg. All my blood which you mentioned are fine only 1 that is low is t3. Take vit D3, iron, magnesium. Calcium becuse since removal of thyroid have no working parathyroid... Not felt like me for 3 years so will increase my thyroxine and see what happens, hopefully for the better. My t3 is 3.6 just within normal range my t4 is 18 top end of higher range of normal and tsh 0.5 just within normal. Thank you
What time of day do you take levothyroxine?
Vitamin D3, iron, magnesium. Calcium all need to be four hours away from levothyroxine
(Vitamin D mouth spray doesn’t need 4 hour gap)
Iron needs to be separate from others
What is your daily timing on vitamin supplements
Do you take vitamin C or selenium
What beta blocker - if it’s propranolol that reduces conversion rate of Ft4 to Ft3
I take my thyroxine at 3 am when I nip to the loo. I fast before and don't take thyroxine before blood tests. My b12 is very good. The beta blockers are bisoprozole 1.25 a day. May try selenium. My vit D level very good as b12 good too
Folate result?
Do you always get same brand of levothyroxine?
As you had Graves are you on strictly gluten free diet
I assume I had Graves no one really said I did just over active thyroid, my thyroid was up and down for years and goitre growing slowly before they removed it. I assumed it was Graves 2 sister and grandaugh all hyperthyroidism 1 sister hypo. I always stick to same brand of thyroxine. Not gluten free
Always worth trying strictly gluten free for 3-6 months, see if it helps
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
healthcheckshop.co.uk/store...?
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
As you are without a thyroid this does seem rather callous - especially if you are having difficulty converting T4 into T3. Are you still taking Beta Blockers ? - I think I have read here they can affect thyroid hormones.
Hope they are testing the T3 as it is the cause of so many symptoms when low - including the heart.
Have no thyroid or working parathyroids since op 3 years ago. Going to give this a try because they will not give me t3 and cannot afford to go private. Thank you
Is your Iron checked on a regular basis ? Too much is not helpful. What are your levels of B12 - Folate - Ferritin - VitD ? All need to be optimal to aid conversion of the T4 you are taking. How much VitD are you taking ? Often too little is prescribed by GP's.
Your T3 is too low for a healthy metabolism. Every cell in the body needs T3 - the brain - heart - liver - lungs and so on - so when the level is low in range there is not enough to go around and things begin to go wrong.
Hope the increase works well for you....
Iron is OK, checked on regular basis, b12 is very good. Ferritin always on low side no matter what iron pilss I take
Are you taking VitC to aid iron absorption? Just a thought ...🌻
Do you eat meat?
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/Websites/...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I eat red meat each day now, will buy vitamin c tablets thank you
Will always take beta blockers and warfarin because they found a hole in my heart which was repaired which caused Afib not at Afib for a few years now but as a safety measure they keep me on those pills
SlowDragonAdministrator
Nottingham CCG do prescribe T3
openprescribing.net/analyse...
What was reason for thyroidectomy?
Graves’ disease?
Yes Graves but main reason substernal goitre
Yes they do to existing patients those who have been on it for years not for new patients especially with a history of AtrIal fibrillation.... Thats so kind of you checking things out for me thank you. About a year ago an Endo Surgeon in Nottingham was going to give me a prescription for t3 till she found out about my afib history she was an Endo I'd never seen before so yes some do give it but use my Afib as a reason to say no when in reality they just need to monitor me more closely
SlowDragonAdministrator
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
See how you get on at 125mcg Levothyroxine
This is a bad strategy because when T4 levels go up type-1 deiodinase (D1) takes over and produces a lot of reverse T3 (rT3) which reduces T4 to T3 conversion. The loss of conversion occurs in type-2 deiodinase (D2) which converts T4 to T3 near the cell nucleus. Consequently there is a loss of T3 in D2 reliant organs such as the brain and skeletal muscle.
An added complication is that by supressing TSH long term the hypothalamic pituitary thyroid axis will be down-regulated, TSH will stay lower than it should be. This further reduces T4 to T3 conversion.
It's not quite true that the endocrinologist cannot prescribe liothyronine. The CCG may have told them not to but any doctor can prescribe, the CCG cannot overrule a clinical decision. Of course doctors are very reluctant to go against a CCG, they are put in a very difficult position. I would find out who instructed the endo not to prescribe (probably CCG) and give them a lot of grief. You may have to buy liothyronine or NDT privately and ask the endo to monitor you. High fT4 levels are not a good idea, they won't help much and carry cardiac and bone risks.
I'm a patient not a doctor.
OK thank you, but I'm going to give it a try but I will bear in mind what you've have said, Endo use my atrIal fibrillation against me as an excuse not to give me t3. I was so close to getting some of a different Endo until she realised and said. I would try ndt but it needs to come from a reputable source. But cannot afford to go to private Endo for private prescription. Thanks for your help
Hi, i guess you'll have to try it and see. But what jim correctly says about TsH in relation to T4 to T3 deiodinase conversion might mean that you don't achieve much higher FT3 results at the end of the day.
I have had FT4 well over range for years giving a TSH of around 0.04
ie. FT4 19.9 [8-18] 119% through range
up to 22.7 [7.9-14] 242% through range
i'm afraid to say it hasn't fixed me, and if i reduce it to bring TSH just within range at 0.5 i get constipated and feel worse.
So over range FT4 may make you feel better , but doesn't guarantee a complete fix. And it does carry risks as you are aware, but so does crossing the road 
so i wouldn't let it stop you trying.
Speaking of roads , a life time ago i used to live on Aspley Lane, are the lovely cherry trees still there ?
Sorry I don't know not been to Aspley for years. I live in Toton. Thank you for your reply x
SeasideSusieRemembering
carroll9988
As this worked for anyone please and how much better do you feel?
Definitely didn't work for me.
Due to ongoing symptoms and never feeling well, my GP allowed my FT4 to go to, at the highest, 34 (11.8-24.6) which was 173% of range. FT3 was never tested. Endo was TSH obsessed and as my TSH was always suppressed he insisted it came back into range with dire consequences for me (long story, wont go into but I ditched the endo).
Eventually took things into my own hands, discovered poor conversion of T4 to T3 - an FT4 166% of range produced FT3 of just 55% through range. Sorted vitamin deficiences and sourced my own T3. I get Levo on prescription still, GP doesn't know I add my own T3. It was the only way to stop the rot!
My Endo is convinced that this will push up my t3 which they check regularly. Where do you get your t3 from if you don't mind me asking pm me if allowed
With an FT3 that low, and such a high FT4, you are a very poor converter. So much so, that I doubt any amount of nutrient optimising will bring your FT3 up to optimal level. Does your endo realise just how much levo you are going to have to take to raise your FT3 to anything like a normal level? It's going to be a lot. A lot more than 125 mcg a week, I'm thinking. And, I'm really not sure that's a good idea long-term.
You say you can't afford to go private, I can understand that. Nor could I! But, you don't have to have a private endo to buy your own T3, which would be a lot cheaper. Just ask your endo if she will manage your treatment if you buy your own.
Isn't it becoming increasingly difficult to buy T3 ? There seem to be daily queries about difficulty in supplies and where to get it.
Is it that T3 is becoming more difficult to find? Or is it just that more people are looking for it because they've just realised they can get it? But of both, probably. But, even so, if someone is in dire need, like the OP, it would be churlish not to suggest it, don't you think?
I'm not questioning you mentioning it I was just making an observation. I was chatting with my Endo about T3 last week, not that I take it but my late husband did, Endo can't/won't prescribe but he recommends patients buy from abroad, he does accept it's not always easy to source.
Are his objections on the ground of cost? Or is he anti-T3?
Cost plus Somerset CCG have really cracked down now, he definitely isn't anti T3 as he tells his patients to buy it, he did suggest as I have a big stash of it left by my hubby I give it a go 😉
Rather than letting it go to waste, eh? lol Strange man.
He is the nicest man ever, he was also my husbands Endo and he kept in touch with me while my husband was in hospital and after he died, I was only referred to him last year but he knew hubby well as he was a very complex case with a rare pituitary tumour, talking to him is so easy and he's not got an ounce of the usual arrogance we often encounter.
Taking more L-T4 will increase T3 levels but the subtle point is that it will produce T3 in the wrong tissues and increase rT3. There will be more T3 in the blood but not in the tissues that rely on converting T4 to T3 (such as the brain and muscles).
High fT4 is associated with cardiac problems including AF. Replacing some L-T4 with L-T3 will improve symptoms without increasing the AF risk. It is the overall hormone burden that increases cardiac risk.
Hi jim , would you mind elaborating a bit on 'produce T3 in the wrong tissues' and 'not in the tissues that rely on converting T4 to T3 such as brain and muscles'
Do you have any good research link for this ? i know i've read stuff on this but can't remember where i found it now.
I'm wanting to explain how i could have brain and muscle problems on Levo with over range FT4, mid range FT3, with TSH o.o5 (reducing Levo dose made digestive system grind to a halt , so it's been put back up after an argument.)
I describe it on my website in the Subnormal TSH Secretion topic but specifically on this page ibshypo.com/index.php/where... . I believe it is very important we move one step further and look at where T3 is produced rather than just how much T3 is in the blood.
Not only is it important to have D2 derived T3 but it looks like rT3 inhibits the production of D2 T3 ibshypo.com/index.php/rever... . I've come across a few more studies that support this concept and plan to add them to the topic when I have time.
So excess levothyroxine is counter productive because it reduces D2 activity and the rT3 it produces also inhibits D2. Thus, the brain and muscles are deprived of T3 even though serum levels are high.
From my own experience many years ago I found that high doses of levothyroxine caused erratic hormone activity. T4 seemed to build up and then suddenly kick in, I'd swing from hypo to hyper. Dr Skinner referred to this as 'backstacking'.
Thankyou very much, jim.
Hello Carroll
Can I just add -
A fully functioning working thyroid supports you daily with approximately 100 T4 + 10 T3 :
Having been refused a trial of T3 by the NHS back in early 2018 because my TSH was suppressed I started self medicating myself.
Initially I increased my T4 - expecting a higher T3 - all I got was a really bad headache : So struck out on this being an option worth considering long term.
I then trialled a 1/4 tablet of T3 with a slightly lower dose of T4 - at around 3 in the morning and woke up about 4 hours later, relaxed, and with an immediate improvement in my cognitive functions and knew this was an option worth considering long term.
I have since gone on to try Natural Desiccated Thyroid and have chosen to stay on this for the time being as I find it softer on my body - I am with Graves, post RAI thyroid ablation in 2005 becoming very unwell, about 8 years after this procedure.
Since you too have lost your thyroid, you have lost your own T3 thyroid hormone production which equates to about 20 % of your overall well being : and I can't believe an endocrinologist can be so naive as to suggest that increasing T4 will solve your health issues.
Hi where do you get your ndt from please and how much pm me
After suffering debilitating hypo symptoms for four years I finally pulled out all my blood tests. It showed that in the past my T4 levels had to be around 1.9 to have decent T3. over the past three years my T4 wentdown to 1.6 and 1.7 and my T3 dropped to 2.6. I never had any heart issues before. My Dr has continued to try and drop my T4 even further at 1.7 saying it's too high yet he never bothered to add T3. What is wrong with this guy! When my T4 was around 1.9 my tsh was still 1.5. never suppressed.
Are you talking to me?
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