T3 being reduced, I'm very upset about it.

[SurdoQueen]

I had my three month follow up appointment after being prescribed T3 for the first time. Having had a profoundly positive experience since starting a 20mcg daily dose, I've been told that I must halve it to 10mcg a day, I drove home in a blur of tears. I'm so upset, as is my husband as he has noticed the marked improvement in my health, energy and mood. Here are my latest bloods:

Free T3 8.7

Free T4 12.5

TSH 1.39

My levothyroxine prescription pre T3 was 125mcg, reduced to 100mcg once I was put on T3. Endo has now upped T4 back to 125mcg and reduced T3 to 10mcg.

The reason I started on T3 is that I tested positive for the faulty D102 gene. I know I'm not an endo, but reducing the T3 and increasing the T4 doesn't make any sense to me. I would expect once on replacement T3, you'd need to keep T4 in range but T3 levels would increase. My assumption being that this is ok because my own T3 is faulty and inaccessible for use so my body is using the good stuff I'm taking in pill form. Hope this makes some sort of sense to those reading.

I'm very upset right now, because all though I still don't feel and operate as efficiently as a healthy person I feel drastically improved and I'm dreading sliding back into a barely functioning mode. I'm going to see how I go over the next month and if I do go rapidly down hill will take myself off to a different endocrinologist and book a private appointment. Has anyone else had a similar reduction in T3 prescription and what was the effect, and can anyone in Surrey recommend an endocrinologist that has given them time and understanding. The one I've seen, I barely get 2 minutes of his time and don't get the opportunity to fully discuss my various symptoms and what's improved and what hasn't etc. Many thanks

[SeasideSusie Remembering]

SurdoQueen

When did you take your last dose of T3 and Levo before this test?

Can you add the reference ranges please (they vary from lab to lab) so we can see how much over range your FT3 is and where in range your FT4 is, unfortunately results without ranges can't be interpreted.

[SurdoQueen in reply to SeasideSusie]

I took my T4 at bedtime and my quarter dose 5mcg of T3 at 7am, blood test was at 10.30am.

Free T3 8.7 pmol/L 3.70 - 6.70

Free T4 12.5 pmol/L 12.3 - 20.2

TSH 1.39 pmol/L 0.3 - 3.94

Thank you!

[SeasideSusie Remembering in reply to SurdoQueen]

Diogenes has explained about the fact that your FT3 is high due to taking your so close to the blood draw. Same thing happened to me a couple of weeks ago when an unplanned thyroid test was done at the doctors.

When having future tests, last dose of Levo should be 24 hours before the test and last dose of T3 should be 8-12 hours before the test, that way your results will reflect the normal amount of circulating hormone.

[SurdoQueen in reply to SeasideSusie]

Oh bugger, I wish I'd known this before. Will definitely act on this next time. Thank you for your help. x

[Hidden in reply to SeasideSusie]

Does this mean that it does not matter if FT3 levels rise above normal for a few hours after taking T3 (or NDT)? I am asking because the same thing happened to me, blood was drawn when no thyroid test was scheduled but doctor added it anyway, this happened about three hours after taking NDT and the results showed above range FT3 levels (after which I was told to go back on levo only which I didn't). But I thought the idea was to make sure FT3 levels never go above range; they can be at upper normal limit but should not go above it...?

[SeasideSusie Remembering in reply to Hidden]

Exogenous thyroid hormone peaks in the blood 2-4 hours after taking it. So testing 3 hours after taking your T3 or NDT will give a result where your levels are at their peak in the blood, then after 4 hours it would start to taper off as the thyroid hormone starts to move out of the blood into the cells.

If you tested every hour after taking your T3 or NDT you would have a bell curve where your level will rise then fall.

It's said that to get a measure of your normal circulating hormone then last dose of T3 or NDT should be 8-12 hours before the blood draw.

Of course, the test can only measure what is in the blood, it doesn't measure what has been taken up by the cells, which is why a blood test is not necessarily a good indicator, it's how we feel that is.

[Hidden in reply to SeasideSusie]

True...if only more doctors knew!

[Angel_of_the_North in reply to Hidden]

Probably not. The tests and ranges were developed for people on levo only

[Hidden in reply to SeasideSusie]

Totally agree, had two tests on the same day over the summer to examine peaks and troughs I was having on T3. Before taking my morning dose of T3 i was just into the upper quarter of the range. Five hours after my morning dose my T3 was just over range. Same picture for T4. It's made me really sceptical of reading too much into a single test. I reduced my T3 and increased levo over the summer and although blood levels of T4 and T3 reflect this my TSH is lagging way behind and is still suppressed. I've learned not to fully rely on numbers but go by symptoms. If there is going to be any changes of my meds I'm cautious and check it's based on knowing if any test result reflects peak or trough blood levels. I've also learned I need enough time for test results to catch up with dose changes and TSH lags way behind T4 and T3 results.

That's probably all obvious but I'm a bit slow to catch on .

Michael

[cazmania7]

Sorry this has happened to you. It makes no sense at all. Worst comes to the worst you can buy T3 online I guess. Shocking how patients are being treated. I wish you good health.

[SurdoQueen in reply to cazmania7]

Thank you. x

[diogenes Remembering]

With only 3 hours between taking T3 and measuring FT3, it's likely you hit a "spike" in the 3 level which is not typical of your average levels over the day. I would have taken both hormones at bedtime to minimize any spike of this kind. T4 dosing doesn't produce the spiking that T3 does, largely because your T4 reservoirs are large compared with what you take daily. I would mention this possibility to your doctor when you next present.

[SurdoQueen in reply to diogenes]

Thank you, will do.

[greygoose]

My assumption being that this is ok because my own T3 is faulty and inaccessible for use so my body is using the good stuff I'm taking in pill form.

Just one little point. That's not the way it works. Having the DOI2 (three letters, one number) does not mean that there's something wrong with your T3. There isn't. It's just that you can't make enough of it to keep you well so need to take replacement hormone.

Your endo was totally wrong to reduce your dose by 10 mcg, even if it did need reducing - and he thought it did because of that FT3 result. T3 should only be reduced - or increased, come to that - by 5 mcg maximum every two weeks.

[SurdoQueen in reply to greygoose]

I've always had good levels of T3 in my blood from taking T4 for Hashimotos, but just not the accessible to the brain kind of T3 because of the DIO2 genetic fault that impairs conversion of T4 to T3. So my levels have since taking T4 been fine. Below is taken from the Thyroid UK website.

"To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

The study concluded,

“Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels.” "

[greygoose in reply to SurdoQueen]

Yes, I understand all that. But, it still doesn't mean that there's anything wrong with the T3 itself, there's just not enough of it. All T3 is is accessible to the brain, but the fault in the gene means that it's not getting there. The fault is in the pathway to the brain, not the T3 itself.

[SurdoQueen in reply to greygoose]

If it's not as the Doctor told me a problem with the enzyme converting T4 into T3 and effectively giving me normal T3 levels but T3 that is comparable to a badly cut key and therefore not accessible to the brain, how is taking more T3 going to reach my brain if the issue is with pathways to the brain? Now I'm really confused.

[greygoose in reply to SurdoQueen]

In that paper, it says that the body gets enough T3, but because of the gene fault, the brain doesn't. How can anyone interpret that to mean that your T3 is a badly cut key? T3 receptors are the same throughout the body and the brain, you don't have different types of T3 for this bit and another type for that bit. T3 is T3. Otherwise, how would taking a T3 pill work for anybody?

I'm not an expert on this, in fact, I know very little about it, but I have never ever heard that badly cut key theory. As far as I know what you have is a form of thyroid hormone resistance, where you need high levels of T3 in the blood to swamp the receptors, in order to get enough into the cells. I think your doctor is getting confused with rT3.

[SurdoQueen]

Oh Ok, I thought it was faulty and not accessible. The Doctor that I spoke to after my gene testing said it's like having a badly cut key, that is the transformation by the enzyme in the blood of T4 to T3 produces faulty/badly cut T3 that's not easily used by the various organs etc in the body.

[Angel_of_the_North in reply to SurdoQueen]

I think he probably doesn't know as much as he makes out. esp not if he reduced your T3 without asking when you took your last dose

[SlowDragon Administrator]

Your FT4 has dropped very low, so increasing Levothyroxine may help (and may increase FT3 a little too)

How to do you normally split dose?

i have Heterozygous DIO2 gene variation and find taking 3 doses per day at 8 hour intervals gives best results

Can you only reduce by 5mcg - to 3 x 5mcg doses

Last dose of T3 should be 8-12 hours prior to blood test

[SurdoQueen]

I had been splitting the 20mcg dose of T3 into four and taking at roughly 7am, 11am, 3pm and 9pm. I'm not being prescribed enough to be able to take 15mcg a day unfortunately. I'm not sure how I'm going to manage to cut my half a 20mcg into 8 pieces for two days supply. I'm feeling pretty fed up right now. But perhaps I will still feel as good as I do now. I will give it a month and if I go down hill I will start kicking up a fuss.

I'm not someone who's influenced by the placebo effect. I've spent thousands of pounds trying to find something that makes me feel better, including medical grade cannabis. As well as the thyroid issue I have had a debilitating chronic cough for over four years. It's not a polite tickle, it does on occasion cause me to vomit, which I have done whilst driving! I've had endless scans, x-rays and tests and nothing I have been given has worked. I'm not suggestible, even tried hypnosis but couldn't be hypnotised. What I'm getting at here is I know without a shadow of a doubt that T3 has massively improved my mental state and had some impact on my physical state which is why the reduction in dose has caused me significant distress. It completely blindsided me too, I wasn't expecting the endo to say that.

[vocalEK in reply to SurdoQueen]

This research ties breathing problems, including cough, to thyroid deficiencies. nahypothyroidism.org/how-th...

[SurdoQueen in reply to vocalEK]

Thank you, I'd really like to read that but unfortunately the link won't open for me.

[helvella in reply to SurdoQueen]

I have just checked - the link works fine for me.

Maybe try again? Could have been a temporary issue.

[SurdoQueen in reply to helvella]

Still not working for me, not sure what's going on. The error message says that there's no secure connection to the server.

[SurdoQueen in reply to vocalEK]

I've searched on line for other info relating to this and I'm not sure that it's applicable to my particular cough. My lung function is good but I have eosinophilic bronchitis with unknown causation and nothing eases it. I have had ultrasound scans on my thyroid and have no nodules and it's not enlarged. But thank you for taking the time to comment and link to information. It's valuable to be able to discount things in a search for answers.

[SurdoQueen]

I meant cut my 20mcg into 8

[McPammy]

I take my doses of T3 8hrs apart due to its short half life. Can you take more mcg 8hrs apart instead of 4 times in 14hrs. This way you won’t need to cut into 8ths.

I definitely think you will have had a spike just at the point you had your bloods done.

I’d email your Endocrinologist and inform him of your timings and the blood test. Make him rethink. I’d suggest to him that you wish to continue with your T3 original dose. And when the bloods are next done to make a decision at that point. Also you take x2 doses quite close together in the mornings so your morning half life will be higher than in the afternoons? And your morning blood test will be high for T3. Your TSH is fine so your not over medicated. We aim for a TSH of 1.00 mostly. But T3 for some can suppress TSH.

We are all different on how we feel compared to test results. I find I’m better when my TSH is at about 1.00 and my T4 and T3 are in range. T4 is always lower when T3 is introduced.

Hope this makes sense and can help in some way.

[SurdoQueen in reply to McPammy]

I was taking small doses four hours or so apart to even out the dose so that I didn't have high peaks and deep troughs in the amount in my system. It was working so well for me, and I started taking it that way as many others on this forum do the same so I thought I would try it.

On a smaller dose so I still want to spread it out, and as one tablet has to last two days that means cutting into 8, which I tried and is almost doable with the odd crumbled mishap which I can mop up on fingertip and take. I'm just going to go with the lower dose for now and if I feel ill effects will get straight onto him, however, I have been told he has no available appointments until February!

He doesn't actually give me enough time to talk other than responding with yes or no's so I'm thinking I need to go privately and find someone that actually gives enough time to fully understand what my issue are and involve me in the decision making, this guy after I told him T3 had a profoundly positive effect on my life told me he was lowering the dose and when I tried to question it was told it was being halved and we'd review it in four months. There was no discussion allowed as to whether I felt that was fair. Perhaps we could have just taken it down to 15mcg but there was absolutely no discussion and it was made very clear the consultation was over, and in about two minutes flat.

It's interesting to hearon this forum that people dose themselves in many different ways. I do understand what you're saying but I just want to carry on doing what has been working well for me for the past 3 months. I'm so grateful for all the input, advice, and information I have received on here though, it really is a mine of knowledge!

[McPammy in reply to SurdoQueen]

OK I fully understand. We are all different with different requirements. What ever works for you. At the beginning it can be trail and error. And live and learn. Recently I had a T3 increase of just 5mcg but it sent me over medicated within a week. I go all very weak, dizzy and confused when I’m over or under medicated. So I know when I’m on the wrong dose very quickly with T3.

Good luck and I hope it all works out.

My next NHS Endo appointment is next April!!! I do have a brilliant Private Endo that I can email at any point. If it wasn’t for him the NHS would still be refusing me T3. Now I have it on the NHS.

[SurdoQueen in reply to McPammy]

Wow! Just read your profile! What great news that you can get it on the NHS now! Which County are you in? I'm in Surrey.

[McPammy in reply to SurdoQueen]

I’m in Cheshire. It was a real surprise to me. Previously I was getting it privately but only for four months prior to NHS writing out a prescription for T3. Now I’m fine. After an horrendous 12 months.

Hope you are ok x

[SurdoQueen in reply to McPammy]

It's great to hear a success story! x

[serenfach]

If the GP argues that you taking T3 so close to the blood draw does not make a difference (and I have had that!), ask if he would trust a diabetic blood test if the patient had just had a huge load of sugar...

[SurdoQueen in reply to serenfach]

Good point!