Hi, i am sure this question has been answered before but i cannot find, so apologies for repeating
Finally i am on a trial of T3/4 combo therapy, having been unable to get this on the NHS following a consult with an Endo or via the CCG and so saw a private Endo, who agreed to a three month trial.
I am now taking 100 mcg levo and 10 mcg T3 ( was 150mcg T4), not really noticing any major improvement yet...its only been 2 weeks.
I am due a blood test at six weeks, are the rules the same for T3 as T4, ie withold the dose i would normally have taken first thing of both meds...ie 24 hr gap, or is it different timing for the T3?
I do fast and attend the first appointment at the gps for these tests.
Thanks for any advice.
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MishB
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I would have the blood taken about half-way between T3 doses so your get a rough average. If you are taking your T3 in a single dose you could switch to taking half at breakfast and half at bedtime. Alternatively, you could take a single dose in the evening and have the blood taken next morning. I find a bedtime dose of T3 gives better sleep quality.
Just wanted to add that I have been taking T3 for about 6 weeks, I started on 6.25mcg in the morning and then added another 6.25mcg just before bed along with my levo.
I have never slept so well, it's almost miraculous and believe me getting a good night's sleep when you haven't had one for years makes you feel a million times better!
Agree with everything else that has been said regarding the timing of taking T3/T4 prior to blood tests. Good luck!
Quick question...do u take the later dose on an empty stomach/1 hr before can eat after taking...... or is this not so important with T3 and absortion?
Advice given here is for last dose of T3 to be 8-12 hours before blood draw, altering time of dose the day before if necessary.
T3 peaks in the blood 2-4 hours after ingestion, leave longer than 12 hours and you get a false low FT3, draw blood too soon after taking T3 and you get a false high FT3.
For clarification, 8 - 12 hours if you take a single dose a day otherwise about half-way between doses but leave at least 4 hours at fT3 can peak in the blood during the first 4 hours.
At an endo appointment recently the endo agreed to put me on T3. However he did blood tests at the end of my appointment (which I didn’t expect) at about 3.30pm. I had taken levo and metavive 1 as usual at about 4am. I’m concerned that when he sees the results he will refuse to go ahead with the T3. Will my T4 and T3 results be affected greatly? I’m worried now as it’s taken me about 20 years to be referred and the endo was very understanding when he saw my medichecks test results and basal temp charts.
Hi Mickeydooley, I take my T3 as usual which often means I have blood drawn around 1 - 3 hours after taking it and it has never caused me a problem. I am sure the endocrinologists allow for this - although I take my T3 split into 3 during the day, so it could be different for those of you who take one big dose.
Hi Mickeydooley, I think not taking a big dose works in your favour - at least if you want to make sure you continue to be prescribed T3 and don't want the amount reduced. Presumably you are thinking you will show as having less because you are taking less, but, if you follow my thinking, that could be what you want. Unless I am misunderstanding and you are worrying about how you feel but if you continue to take your normal dose, as normal, you should feel the same.
I was just concerned that as I’d taken my levo and metavive as usual the T4 and T3 levels might be higher than I’d have wanted them to be. I don’t want the endo to have an excuse not to prescribe me the T3 he’d agreed to. (I’d had tests done by the gp a week prior to the appointment and had shown him my previous medichecks test results and hadn’t expected him to be redo the tests that afternoon).
Hi MickeyDooley, yes, you had been clear, I understood, it's just that I know doctors, especially specialists, take into account the meds we are on and it is marked on the results they receive from the lab. I know too that if results are unexpectedly low, given the medication the person is on, they do question whether the patient has taken the meds, not always to that patient but they put a comment on the notes to that effect. I understand your concern and what you mean, and I think you have good reason to think that way, because if many people are not taking their meds on the day of the blood tests then the doctors may be making allowance for that when reading the results - which, as you say, could disadvantage you.
What a ramble! Let's hope all is well and you have a smart doctor who knows your personality and realises that you had not withheld your own meds.
Thanks for taking the time to respond. Originally i didn’t tell the endo about the metavive as I assumed he’d go on my previous test results and I didn’t know what sort of a reaction I would get to self medicating! (I’ve had such horrendous treatment from gps over the years and I didn’t expect him to be as understanding as he was.) However I regretted it as soon as I walked out of the room and I phoned the hospital as soon as I could get through and left a message for the endo. I hope he got it! I wanted him to have all the facts before he made a final decision regarding my treatment. It will be what it will be!
Endo wants blood drawn 4 hours after (divided) T3 dose, to make sure the peak doesn't take me over range, so I will play along. Roughly how long does the peak level last and how does it relate to what a more 'average' level would be, if that can be said to exist. Assume T4 should be 24 hours before phlebotomy.
Your endo. is being devious or more likely is ignorant. Thyroid hormone receptors are triggered after several hours T3 saturation, they do not respond to peak T3 values. We don't know to what degree receptors respond to sustained maximum, minimum T3 levels or the 'area under the curve' but they do need serveral hours exposure to T3 to respond. This is after the T3 has been transported into the cell and made its way to the nucleus. Worrying about peak T3 levels has no basis in science, this is likley to keep you on a dose that is insufficient.
One would think that before treating the numbers as gospel a doctor would take the trouble to study how thyroid hormones work. I would insist on leaving six hours to get a more meaningful result. The timing of taking L-T4 doesn't matter as long as you leave more than four hours, the seven day half-life of T4 means a daily dose has a very small effect on fT4.
Hi Jim, your reply is very interesting and seems to indicate that mine could be misleading people. There is something I'd like to clarify though. You are talking about receptors responding - I thought the test was measuring T3 circulating, not T3 saturation, please, could you clarify this?
Yes the blood test measures circulating (total or free) T3 at the time. Thyroid hormone receptors need to be saturated with T3 for several hours before they trigger. The term 'saturate' is used in this case to mean T3 is in the cell and available to the receptors, it's does not have the same meaning as we would use it in ordinary life.
Hello again Jim, this is interesting, but could you explain a little more please? When you say the receptors need to be saturated 'before they trigger', what does that mean? Before they respond? Before they benefit? Before it shows in blood tests?
This activity does not show in blood tests. T3 binds to thyroid hormone receptors in the cell nucleus and along with other substances called co-factors bind to a response element on the DNA. This causes the release of messenger RNA which builds proteins, these proteins do whatever the cell is supposed to do (being vague here as my understanding fades). This is how thyroid hormone works, whether it generates body heat, speeds up the heart or whatever.
The relevant point is that T3 takes several hours to do its job once it has arrived at the cell nucleus. So, a short peak in T3 levels is not a major concern.
That's really useful to know thanks, but why do I feel high as a kite and tachycardic about three to four hours after my first T3 dose of the day...I assumed it was my dose reaching its peak level.... Obviously that's wrong and feeling high isn't a straightforward relationship to free T3...my free T3 peak isn't doing anything directly, it's the genes in my cells responding to signals from saturated receptors..... Very confusing... So that makes me wonder what's the best dosing strategy to get consistent saturation? Drip feed across the day or take the lot in one go ?
It may well be the T3 peaking, along with high levels prior to you taking your T3 dose. The point is that the peak T3 level is not representative of your overall T3 levels and there's no evidence base for asserting that fT3 should not peak above its upper limit. Obviously you will tend to be more hyper a few hours after taking T3 but the peak T3 level is not a unique marker.
I would take T3 twice or thrice daily, if you feel high you are on too high a dose.
Thanks for the reply jimh111, totally get it that peak free T3 isn't saying anything about overall T3 profile and ultimately symptoms (or relief from them) are probably the best guide. I'm currently trying dosing four times across the day to try to even out highs and lows.
Hello Michael , I'm very excited for you that you have been given T3 . However dosing with any T3 there are a few steps to take to make it work right for us to the fullest .
1) knowing the lab values of FT4 . Adding any T3 to already high FT4 will only set someone up to failure thinking that T3 doesn't work .
2) NDT might work better for you . I didn't do well with Synthetic T3 but NDT works great for me .
3) Nutrients are very important too they help our thyroid meds work better for us .
Vitamin "D" /K2 , B-Complex , B-12/Folate, Iron if you test low can cause palpitations , magnesium too , Vitamin "C" , Celtic Sea Salt for adrenals/electrolytes .
4) Gut issues can make thyroid meds not work to the fullest . Going gluten dairy sugar coffee , eggs free can be very helpful .
5) Having adrenal/ Cortisol levels checked via 24 hour salivary testing is very helpful too .
6) Splitting T3 doses is very helpful .
Michael I'm just trying to enlighten you that to make thyroid meds work for us as well as possible and make it a great success there is more involvements that we have to consider . It's not just taking a pill and be done with it as some Dr's will have us believe . Try to find a Dr that understands and is willing to work with you . Think Positive and be Persistent . You will get .
This is what I have done and, as said above, it's never been a problem, I do think the endos allow for this if they prescribe T3. Also, when the results come in, they do note whether or not we are on thyroid meds, so there's a reminder for even if the doctor had not thought about it. Really, I think they are far too smart to overlook such a thing.
Among autoimmune disorders, increased prevalence of CD has been found in patients with autoimmune thyroid disease, ..........., 2% to 5% in autoimmune thyroid disorders ......in prospective studies. …..Screening high risk patients for CD, such as those with autoimmune diseases, is a reasonable strategy given the increased prevalence.
Non Coeliac Gluten sensitivity is far more common than coeliac in autoimmune disease
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Yes gluten free now for 18months and has helped with the bloating and gut issues big-time, not so much any other symptoms
Most recent bloods were taken a week or two by my GP before seeing the private Endo
10.7.19 on 150mcg levo, 08.30 appointment fasting and not taken meds 24hrs
TSH 0.59 mu/L (0.35-5)
FT3 4.4 pmol/L (2.50-5.70)
T4 although i know was asked for wasnt reported!
Folate 19.1 ug/L (2.70-34). Take supplement from GP
Ferritin 224 ug/L (20-275)
Vit D 167nmol/L (50-150). Take supplements
B12 949 ng/L. Have inj 8 weekly
HbA1c 51 mmol/mol (20-42). **
Fasting blood glucose 7.1 mmol/L. (3-6) **
Also take selenium and magnesium citrate daily
Thyroid meds normally when wake at 6am..n all the others at bed time
previous tests at GPs 31.12.18 on 150mcg levo 08.30 appt, fasting and no meds 24 hrs
TSH 0.15 mu/L (0.35-5)
FT3 3.3 pmol/L (2.50-5.70)
FT4 13.1 pmol/L (9-20)
Folate >20 ug/L (2.70-34). Take supplement from GP
Ferritin 316 ug/L (20-275)
Vit D 167nmol/L (50-150). Take supplements
B12 782 ng/L. Have inj 8 weekly
HbA1c 43 mmol/mol (20-42). Note last tested 18.10.16 and was 46 was not being treated for hashis at this point ie no levo
Fasting blood glucose 6.7 mmol/L. (3-6)
GP and i are intrigued to see blood sugar tests have risen since dec ( esp as had christmas and measure over a 90 days i undrstand..quite how!!)
- we know obv my weight gain of 2 1/2 stone since 2016 has a bearing but diff to lose weight with thyroid not functioning / medicated , but also is aware my metabolism is a mess with Hashis, and so is not yet treating the likely T2D, until after my next blood test having been on T3/4 regime for 6 weeks to see if improves? Is this a possibility?
Exercise not so easy as get light headed and very short of breath, n obv get fatigued quickly...i do walk the dog daily and try to do 30sec bursts of faster heart rate ..fast walking, slow jog as rec by my recent visit to GP who said some research shown that 30sec higher intensity activity can help kick start metabolism...not yet found this research googling!
I am not low carb as such...but having said that hubby not a big rice or pasta fan...so prob only have each 2-3 x per month...but spuds....if home lunch is generally a slimmers world JP
So looks like i need to knock that on the head n see what happens!
I wish I could get on a trial, my Endo signed me off after thyroidectomy without even seeing me, saying I’m cured of my thyroid disease., but without t3 , I’m struggling after 2 years, and I’m so tired and nauseous and low.
I have been fighting for T3, persuaded my GP to send me to an NHS endo who was known to be T3 friendly...saw him last August! But hands were tied, not allowed to prescribe on NHS and as he didnt do private work couldnt give me private script either. My GP wrote to CCG on my behalf but they refused to fund my T3 trial eithr, GPs in Essex not allowed to prescribe either!
So had to bite the bullet and pay to see a T3 friendly Private endo, and incur all the costs that involves....not the outcome i wanted as i am not made of money! BUt really wanted to see if this may be the answer and give me back my quality of life.
I have followed lots of advice from this forum, GF, pacing self, supplements
Can't you persuade you GP to give you a private prescription? Mine doesn't charge me for the paper scrip. I then order T3 from Germany which costs £50 approx. including p&p and that compares with £1000 if bought at Boots!!!!
HI @crimple I tried to get a private script from my GP, but she has been overuled by one of the other GPs who is the prescribing lead at the surgery who cited from the GMC doc, regarding good practice in prescribing and managing medicines and devices
'37 if u prescribe at the recommendation of another dr, you must satisfy yourself that the prescription is needed, appropriate for the patient and within the limits of YOUR COMPETENCE
'38 if u delegate assessment of a patients suitability for a medicine, you MUST be satisfied that the person to whom you delegate ha the qualifications, experience, knowledge and skills to make the assessment.you must give them enough information about the patient tomcarry out the assessment require. You must also make sure they the guidance in paragraphs 21-29 on consent
'39 in BOTH cases you will be responsible for any prescrition you sign
my GP had contaced the CCG for my case to have T3 in November 18... had to chase for a reply which came in April 2019!!!!!!
The ESSEX CCG has decided that Liothyronine is not routinely suitable for prescribing at Primary care level, due to safety concerns such as palpitations and tremors, and limited evidence of clinical cost effectiveness !
PEople who are affected by an underactive thyroid and have symptoms that are not controlled by Levothyroxine should be under the care of a specialist clinician who has a greater expertise in this area
By limiting prescribing of medicines such as liothyroninenthat are outside of the clinical expertise of a GP to a specialist we are assured that the patient is being reviewed and followed up safetly
It is not the appropriate for a GP to prescribe medication and take clinical responsibility for a therapy they are not familiar with. Hence form a governace, safety and clinical perspective, prescribing and clinical responsibility should remian with a specialist
Hence it has taken sooo long to reach this point of having to see a private consultant in order to get a prescription!
Oh dear, I am very lucky then. My GP did send me to Endo who agreed I could continue with self bought T3 as long as GP monitored my bloods, which they have just done and NHS lab did test T3! GP just writes me a private scrip and I do the rest and save NHS a fortune. Will be ordering again soon because don't know what will happen with Brexit. I might have to fight NHS then! Let's hope MHRA finally comes up with the goods. i.e. heavily fines Concordia for serious overpricing of T3. Can you move? expensive option I know!
Are you on Lithyronine for T3? I take 20 mcg of T3 and 200 mcg of T4 - Always take them first thing in the morning on empty stomach but never take any thyroid medication before blood test. Always been the same and I have been on T4 all my life. T3 for the last 15 years or so.
Do you know what thyroid tests they are doing? As a rule in the UK/NHS they rarely do the T3 test, unless in the private sector. Only the TSH and T4 unless you have been told otherwise.
Change in medication can take several weeks to absorb before you notice any significant changes.
When I was initially put on T3 - I was told (right or wrongly) by my Endo, that it was quick acting, for first thing in the morning. Not sure of that, but the combo seems to be doing the trick.
Whatever happens, I hope you get the correct medication for your needs.
Endo seems to just be concerned dont supress too much..assume he is talking re TSH....so hes obv not so clued up on T3/4 combo treatment ...but i have my meds at the mo and this forum is helping me fine tune!!
I have been lucky nhs has actually reported on my T3 levels on my last two draws...pre T3 medication GP quotes symptoms still persist hence need T3 n 4.... it may not happen this time though so fingers crossed it does, else have enough time to get a medichecks test done before i see him for my followup!
As i was going to be taking 10 mcg of T3 he reduced my T4 by 50mcg, ie 25mcg T4= 5mcg So now on 100mcg T4
I am hoping that i see some improvement on this regime...things need to get better!!
Suspect you might find the drop in Levothyroxine is too much
Keep an eye on FT4 levels
My endo only dropped Levo by 25mcg when added 2 x 5mcg. Then T3 was increased by 10mcg with no further reduction in Levothyroxine
I still found I needed Levothyroxine increased back up after few months. FT4 dropped right to bottom of range on lower dose Levothyroxine .........I was much more active once T3 was added (more on my profile)
What a journey...def going to split my 10mcg T3 am and pm from tomorrow, gives me 4 weeks to blood test then
Will be interesting the T4 levels although sadly my last results for that is dec 18, as although asked for in July 19 werent reported on....new blood forms and think hca didnt print off everything on new system from my paper gp request!
NHS often won't do full Thyroid test, even if on T3
I haven't had NHS test in about 6 years.
Make sure to get blood test as early as possible in morning and fasting and last dose Levothyroxine 24 hours prior to blood test and last T3 8-12 hours prior to blood test (even if means changing time of last dose)
Stop any supplements that contain biotin a week before any blood tests
I agree with SlowDragon regarding the reduction in T4. Mine was gradually reduced from 250 mcg of T4 by 25 mcg each time to the new dose of 200 mcg, plus the T3.
I think some of these GP's treat our medications as sweeties in a Candy shop!.
Not heard of the Tbyon Henning T3 you are on MishB.
Let us know how you get on though, keeping fingers crossed for you.
I agree with SlowDragon that you may well be undermedicated at the moment. So we are not surprised you see no improvement. Unless your FT4 levels were almost to the top of the range, your doctor did not need to reduce your dose of T4 when introducing T3. Given that 1 mcg of T3 is equivalent to 4 mcg of levothyroxine, you would have needed at least 12.5 mcg of T3 in order to make up for the 50 mcg that he reduced your levothyroxine dose. Seems to me that he could have left your levo intact and just added the 10 mcg of T3 to improve your situation a bit. It will be interesting to see what your FT4 and FT3 levels are at 6 weeks in. I would be willing to bet that your FT4 has dropped a lot.
Hi, I’m on T3 and T4. for my last tests I had one in the morning before meds and one five hours later after meds so the endo could look at my peak free T3 and trough free T3. There was a big difference between the two test results for free T4 and free T3. I've learned that if you are on T3 a single tests doesn't really show the pattern. According to my results I am well within mid range for free T3 when I wake and tip just over the range a few hour after my morning meds. It seems to correspond with my feelings of highs and lows. So think a single measure is going to be pretty limited at least if you are on T3. My meds were adjusted based on peak and trough readings.
So I'm a little living experiment. A morning pre medication test will yield lowest free T4 and T3 results.
Hello Slowdragon, I must admit I'm still struggling. My endo said my T3 was probably over max range at peak during the day, but said there was room to bump up my levo by 6.25mcg. I'm currently on 10 mcg T3 and 118.25 levo (previously 112.5mcg). Just started splitting the T3 into four doses over the day as I was struggling with highs and lows. Now after four weeks on increased Levo and a week on split dosing I feel weirdly more tired, achy and low in mood... I'll keep going till my next bloods in four weeks but feels like I've gone into reverse. I'm trying to follow advice from you and SeasideSusie and be patient .... Not my strong point .
Ps after being worried my endo would reduce my dose in my last post about results, he was very relaxed about the T3 pushing my TSH down to 0.03 and said no risk and nothing to get excited about.
The symptoms your talking about aches/pain /fatigue /moodiness for me personally was from high FT4 . But it can be from high FT3 too . It's all about balancing . Lab results are a snap shot of the moment your BW is done . *Symptoms* are *Cellular* results .
I agree with you that it is very confusing at first to sort it out . With time you will recognize the hypo/hyper symptoms and some are over lapping each other too . It's great you joined this great community that members shares their own experiences . The members on this community are very informative and very helpful . You are not alone we are in this thyroid journey together .
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