Zannado

[Zannadoo]

I was told by endo I could get t3 if I did 6 weeks on levo to show I don't convert properly. I did this on 175 levo but my t4 was rising out of range and t3 not in the highest range. I've been on ndt and t3 but always self sorced. But I was hoping to get t3 on percripton. The gp has said I now have to do another 8 weeks cut down to 150 because of course I'm over meditated with my t4 high .I know I'm not . So I'm adding my own t3 25up to 100 levo but I'm not sure if I should take 125 on levo. As I don't know how much I need with adding t3 myself

[Jaydee1507 Administrator]

Are you following the suggested protocol of last Levo 24 hours before blood draw & Last T3 8-12 hours before test? If you are leaving too short a time then you will be capturing the peak hormone levels as opposed to stable blood levels.

Do you have a copy of your latest blood results you can share with is? Its difficult to comment otherwise.

How are your vitamin levels looking and what supplements are you taking?

[Zannadoo in reply to Jaydee1507]

Yes I did that I'm quite up on it all .I was only on levo 175 no t3 I've only just added it .took day before the blood's. T4 was on 20 t3 was 4.6

[Jaydee1507 Administrator in reply to Zannadoo]

Can you quote the ranges for each test - numbers in brackets after your result number? Ranges vary from lab to lab so are very important.

[Zannadoo in reply to Jaydee1507]

Sorry I don't know them I think levo is 21 .t3 around 6 for the high point of the ranges .I can't get my results they did this before made me wait weeks for a copy. So I'm winging it till my nxt blood's. I just don't know if I'm taking enough or 2 much to be aqivelent to 175

[Hidden]

I am not quite sure I understand what you mean.

Are you adding T3 to a reduced dose of levo without the approval of your endo? Then, your endo won´t be able to tell how well you are converting, so you will have to self-medicate. You can only tell how well/poorly you convert if you are on levo only.

It´s common for FT4 levels to end up slightly out of range when on high doses of levo. That happened to me as well, but my FT3 levels remained low. If your endo knows anything about thyroid, he should know that high FT4 levels don´t make you hyper. If your FT3 levels are low on high doses of levo, you are a poor converter. Adding more levo is not the answer. Been there, done that.

If you take too much T4 for your needs, the body will convert more of it to reverse T3 (which is inactive), not free T3.

If you are a poor converter, you either need to improve conversion (there are many ways to do this, for instance by correcting mineral and vitamin deficiencies, but there are no guarantees it will work) or add T3.

175 mcg of levo is a pretty high dose. If your FT3 was suboptimal on that (provided you stayed on it long enough, that is, at least 6-8 weeks), then your endo could reasonably conclude you are a poor converter.

My personal experience is that, once you take anything containing T3 (NDT or synthetic), you need to go by symptom-relief to decide if you are taking too little, too much or the right amount for you. There is no magical dose of T3 that works for everyone, so nobody will be able to tell you how much you need.

[Zannadoo in reply to Hidden]

I was only on 175 no t3 that is what the endo said to take. If it shows I'm not converted enough he will add t3 .but I have only seen gp who has cut me down to 150 levo for 8 weeks. I already know I don't convert well and so I'm not doing another 8 weeks feeling crap .hence I'm asking if anyone knows the amount of levo t3 . I've had hasimos for 30 years and been self medication for 6 .on ndt but I wanted to do it with t3 and levo without having to buy it myself

[Hidden in reply to Zannadoo]

What do you mean by " the amount of levo t3"? How much T3 your replace levo with? I think that is highly individiual, although many sites and blogs say that 100 mcg of T4 = 25 mcg of T3. Based on the assumption that T3 is four times stronger than T4.

[SeasideSusie Remembering]

Zannadoo

So that we may get a full picture which will enable us to offer you help and guidance, can you please post your results, including reference ranges, after your 6 weeks on Levo only. We need to see how well you convert so we must see TSH, FT4 and FT3 results. If you've only got TSH or TSH plus FT4 this wont be enough, you will need to retest, maybe privately, and have all three tests. We can then offer guidance on how much Levo you might need and how to start adding T3.

It's also important that tests are done following our advised protocol to know that they are as accurate as possible, so can you confirm that you did your test as follows:

* Test at 9am or as close as possible.

* Nothing to eat or drink except water before the test so that nothing interferes with TSH level.

* Last dose of Levo should be 24 hours before blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, are your key nutrients at optimal levels:

Vit D: 100-150nmol/L

B12: top of range for Total B12, if Active B12 is tested then 100 plus

Folate: at least half way through range

Ferritin: some experts say the optimal ferritin level for thyroid function is 90-110ug/L

[Zannadoo in reply to SeasideSusie]

I did all the above my t4 was 20 t3 was 4.6 unfortunately that is all I was told

[SeasideSusie Remembering in reply to Zannadoo]

We need to see reference ranges, it's impossible to interpret results without them as ranges vary from lab to lab. If your surgery offers online access to results then register for that, if not then ask the receptionist for a print out of your results as this will include the reference ranges. Come back with full information so that we may help you.

Also, please confirm if your last dose of Levo was 24 hours before the test as that's important when interpreting results as well.

[Decant]

If you have an endo who's saying he will prescribe T3 if your labs show poor conversion then you are lucky!

For what it's worth, my advice would be to do what the endo asks this time and not add the T3 or change the T4 until your next tests.

I know that will be frustrating to wait for 8 weeks, possibly feeling rubbish. If the next tests show poor conversion and he won't prescribe T3 then doing your own thing makes sense.

As others have said, please post your results including the ranges. You might like to use my thyroid calculator to format them: thyroid.chingkerrs.online/

Good luck.

[Zannadoo in reply to Decant]

Yes but he's not got the results so gp is keeping me ill .I'm just going to add t3 and hope for the best

[SeasideSusie Remembering in reply to Zannadoo]

I'm just going to add t3 and hope for the best

Then let us help you to do it correctly. Get the reference ranges for your results, post them here, answer the questions about when you took last dose of Levo before the test and whether your key nutrients are optimal (they need to be before adding T3) then you will get guidance from those of us who have gone down this route and you will avoid any pitfalls and achieve your goal more quickly and without problems.

[Zannadoo in reply to SeasideSusie]

I take all the vitamins u are ment to and do everything regarding time of blood's and not taking my levo 24 hours before. I know that my t4 is to high and my t3 is to low I know I don't convert properly. I just wasn't sure how much levo I should take because I've done what the endo asked and bloody gp is making me do another 8 weeks and I can't do another 8 weeks feeling like this so I'm just adding my own t3. They arnt going to give it to me .I asked reception for my results but they are not giving me them .yes I know they are ment to they did this last time making me wait weeks. So I'm just going to wing it for the nxt 6 weeks I'm already 2 in .I've added t3 last couple of days and feeling better so they can do one. I've had 30 years of this crap under over take this amount no take that amount I'm done in

[SeasideSusie Remembering in reply to Zannadoo]

We're trying to help you, as Decant says if you don't do it correctly it could backfire and you'll end up feeling worse and be back to square one.

Post results and we can help.

[Zannadoo in reply to SeasideSusie]

I can't post the results they won't give them to me

[FancyPants54 in reply to Zannadoo]

I can feel and understand your frustration.

T3 is very different to NDT. I have just gone the other way, from combo to NDT, well, a while ago, but I'm just finding my feet a bit better now. I found T3 very immediate and very quick to fade. So that's an extra variable.

I am no expert. But I have tried it. If you want to oblige the GP reduction in Levo, I would suggest you add no more than 10mcg T3 a day and to split whatever dose you do take into 2 as it won't last you all day long if you take it all at once. That should be enough to hold you more comfortably until you next see the endo. You could even try just 5mcg split in half. I think less is more with synthetic T3. I pushed my dose ever higher searching for energy. Never found it. I just kicked off the enzymatic process to quickly convert my T3 into T2 and through to expulsion as my body didn't like the high levels. Explain what the GP did to you when you see the endo and what you had to do to get through it. I hope they will then prescribe it for you. I'm no expert and I could not get combo treatment to work for me. But I can't bring myself to tell you to stay feeling terrible for 8 weeks.

Meanwhile, write to the practice manager at the surgery and ask for a copy of your results with the reference ranges as soon as possible. You might get a better response that way.

[Zannadoo in reply to FancyPants54]

I was on 12.5 t3 and endo said it was a very low dose I've been told I would get my results in weeks but I'm not waiting weeks I have a disabled son to look after and I'm to tired to when just on levo .I haven't got another endo appointment. I don't think he's got any intention of giving me t3

[FancyPants54 in reply to Zannadoo]

Sorry, I thought you said you had to wait the 8 weeks for a follow-up. In that case, no, he has no intention.

Given your circumstances, go back to doing your own thing. You have been doing it for quite some time, you know what you need. It's having to pay that galls me. We should be given appropriate medications for our individual needs. And they should damn well listed to us when we tell them what those needs are!

[Zannadoo in reply to FancyPants54]

I know it's so bloody expensive but we have no options because they don't listen x

[SeasideSusie Remembering in reply to Zannadoo]

I can't post the results they won't give them to me

Then tell them they are breaking the law and put in an official Subject Access Request, they have to then give you the information and they have to do it within 30 days.

[Decant in reply to Zannadoo]

The endo hasn't got the blood results? Then he'd order his own for you. Surely?

As frustrating as it is I strongly recommend you follow the advice of the admins of this site (I'm not an admin) and don't just "hope for the best". It might work in the short term, but there are so many variables (thyroid meds, vitamins, exercise, diet, genetics, etc) that it's likely to backfire down the road and you'll be back at square one.

I understand the urge to go it alone because our lives are on hold, but it really is the best way to go.

[FancyPants54 in reply to Decant]

I don't think so in this case. The endo can't help her as he doesn't seem to have her results yet. The GP is tinkering without being asked to do so by the endo. So the GP is messing up the end's experiment. And this patient knows she needs T3 as she's been on NDT for years. Telling someone to feel ill for 8 weeks just to try to get some bloods that the endo might eventually see is a very big ask. Her surgery won't even give her the blood results with the ref ranges for weeks. That's unacceptable. But still, it's what they are doing.

[Zannadoo in reply to FancyPants54]

Your totally right this is excately the situation I'm in .so glad u understand I've had this battle for so long now. Its not doing me any good being in this viscous circle hence I'm just adding the t3 .the Last batch of ndt was under strength and I was underactive again that's why I'm trying t3 t4 combo.

[SlowDragon Administrator in reply to Zannadoo]

If you want endocrinologist to prescribe T3 on NHS you need to remain on JUST levothyroxine

GP should NOT be meddling

Recommend you stay on 175mcg Levo as Endocrinologist prescribed

then organise your own test including vitamins

Test early morning and last dose levothyroxine 24 hours before test

Send results to endocrinologist

If you add T3 yourself at this stage you’re very unlikely to get T3 prescribed via NHS

[Zannadoo in reply to SlowDragon]

The gp has cut it down to 150 well it was the nurse practitioner. I was under medication on 150 before so they put me on 175 which is what endo recommended now they are saying I'm over medication and to go on 150 again. Hence I'm not playing there stupid games.

[Lalatoot in reply to Zannadoo]

Zannadoo if you add t3 now your TSH will go lower and the GP is likely to cut your levo dose again . You will get into a never ending argument with them about levo dose and tsh below range.You can refuse to lower your dose until you have seen an endo. Your results assuming the end of range numbers you quoted do show poor conversion.

Adding t3 to levo is not a quick fix. It needs to be done slowly and it can take a year or two until you work out how much levo and t3 your body needs and how many doses to split that into during the day .

Can you post your results when you were undermedicated on 150 please so we can start to help. Start a new post.

[SlowDragon Administrator in reply to Zannadoo]

Do you want to get T3 on NHS?

simply refuse to reduce dose (at this stage)

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Which brand levothyroxine are you currently taking

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Definitely NEVER reduce dose until seen results and ranges

If Ft3 is not over range you’re not over medicated

The GP/nurse should NOT meddle

If you were slightly over medicated (which seems unlikely looking at Ft3) then dose might need SMALL adjustment…..eg 175mcg 5 days and 167.5mcg 2 days

Reducing dose by 25mcg per day is unwarranted

[tattybogle]

so.... you saw lab ranges for a previous set of GP bloods ? (the ones it took a few weeks for them to give you ?)

if it's same GP surgery that took the blood this time , then it's likely that the ranges for these latest results are the same if they got them tested at the same lab. But you do need to check that, don't just assume they are the same ...( sometimes labs get new machines and their ranges change as a result, and very occasionally they may use a different hospitals lab

I suggest you go in person to the GP receptionist and just ask over the counter for them to look on their computer to check the lab ranges for these latest fT4 and fT3 results .

the fact that they previously took several weeks to give you a printout doesn't mean it will take that long every time ... if that was the first time you had ever asked for permission to see results then that may explain the long delay ...but now they have already sorted out permission for you to see lab results, it may be a formality this time.

just ask confidently . The lab ranges for your fT4 / fT3 results will almost certainly be on the receptionists screen.

if for some reason the are unable to give you the lab ranges, then ask them which hospital lab the tests were done at ... you can then have a look online for that lab / hospital phlebotomy dept .... if you poke about a bit you will probably be able to find the lab ranges they use for fT4 and fT3 tests.