I finally saw the endo today. I am so relieved that she is willing to add some T3 to my schedule. She prescribed 5 mcg and told me to take it with my levothyroxine in the morning. Any advice on what to be aware of as I add this in?
Also, to follow up from an earlier post of mine, she said it actually wasn't that uncommon to have both the hyper/hypo antibodies - but that as I have now definitely gone hypo, it would be unusual to go into a hyper mode.
Thanks for all of your help - this website and community are a wonderful resource and seem to provide good, accurate knowledge.
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she said it actually wasn't that uncommon to have both the hyper/hypo antibodies - but that as I have now definitely gone hypo, it would be unusual to go into a hyper mode.
Well, just goes to show how much she knows about thyroid! lol Or, she's not very good at explaining things. What did she mean by 'hyper' antibodies? Grave's antibodies: TSI and TRAb? And, by hypo antibodies I suppose she means Hashi's antibodies. But, if you have Hashi's antibodies then it's more than likely that you are going to have a false 'hyper' swing - or swings - at some point. That's how it works. She should know that.
Or did she means you're unlikely to become Grave's dominant? Does she even know what she means?!?
Thanks, greygoose. Yes, I had tested positive for both the TSI and TRAb, along with being positive for the TPO/Tg antibodies. My regular doc said to ask the endo about that - as he didn't have anything to say... I have no idea what she meant - other than the fact that she brushed it off with that statement (I translated that as "don't worry, nothing to see here"). The good news from today's visit is that she was willing to add the T3 - and she said something to the effect of "let's work on getting your medication optimized based on your symptoms" - but then went on to advocate the TSH monitoring approach. (Sigh). I am somewhat aware of the potential of the Hashi's false hyper "swings" - mostly from reading here. As this was my first visit, I had a very limited agenda - cultivating a relationship that will help me get what I need to not be undermedicated (like how my regular doctor approaches this). She did say "it seems you have educated yourself somewhat" - and I said, well, I'm curious - but left it at that....
Yes, it is good that she prescribed the T3. Just a pity she doesn't know how that works, either! But then, none of them do. I would interpret her remarks as 'I know nothing about all this so I'm going to change the subject as quickly as possible, and hope you know less about it than I do!' Play your cards close to your chest.
further to my comments on your previous post.... based on the lack of detail about 'antibodies' in your endo's explanation ... i have decided not to eat my hat on this occasion.
I'm still really curious as to what prompted your original GP to order a TSI test.
And it makes me wonder how many more of us might have some stimulating antibodies without ever knowing about it .... and what interesting observations we might make if all hypos were routinely tested for ALL antibodies and we had access to this information.
The usual explanation medics are taught to look for on receipt of 'unexpected TFT results' is 'check patient compliance with taking Levothyroxine'.. but we all know 'compliance' is not the reason for most of the weird fluctuations some of us see in our results.
Some fluctuations will obviously be "hashi's hyper swings " ..... but how many might be influenced by Stimulating Blocking antibodies that we don't even know we have ?
Why is the endocrinology profession happy to ignore something so interesting as stimulating / blocking antibodies .. are they all brain dead ? (rhetorical question)
And for so many of us GP-diagnosed as 'hypothyroid' whose diagnosis transpires to an HU Thyroid UK's ' Hashimotos,' only suddenly for atrophy to then diagnose Ords! (atrophic thyroiditis with thyroid gland volume of 5.0ml or less, and without goitre) ... and I even had a (supposed TPOAb) goitre for a very short while.
No wonder GP's get confused ... I wonder just how many of us have (had) TSH receptor blocking antibodies? No, madam you are not hypothyroid 😬.
Yes, just take T3 with your Levo on an empty stomach. You are on a tiny dose but T3 is powerful & during initial introduction some members feel an inner heat and/or a headache, but this usually passes after about 3 days.
If you are sensitive to T3 you may feel a ‘bump,’ (racy heart, jittery,etc ) in which case just split the tablet into two and take morning & late pm. Long term split dosing is preferred by many members because avoiding peaks/troughs is kinder to compromised adrenals and prolongs T3’s action.
You will need to retest after six weeks to see where thyroid hormones levels lie. Post results complete with ranges (numbers in brackets) for members to comment. Good luck 😀
I’m just titrating up to to 50mcg and weaning off NDT at same time. Years ago when I was prescribed it after TT, I was told to take the 60 mcg dose (which was then the standard Post TT dose was standard) 3 x a day. It was easy. 7 am, 3 pm and 11 pm before bed. 8 hour intervals and no problems with sleep even with 20 mcg.
The only thing that upset the apple cart was the CCG’s edict. This took me on to NDT and I haven’t used T3 since.
I’ve got to 30 mcg with a target of 40 mcg and have been cutting up tablets into all shapes and sizes. I’ve tried all ways when it comes to splitting and dividing, using my old T3 methods. Ive not yet tried dosing with the day’s meds all together in the morning. It worked well with NDT and was simple.
A few weeks I decided to go back to T3 and the palava has been very trying. I haven’t known whether to take the 40 mcg altogether in the morning, or divide doses. I’ve tried a few variations. When I actually get on to the 40mcg, I’ll take 20 mcg when I get up, 10 mcg 8 hours after and 5 mcg before I go to bed.
There are so many myths about what’s best and not best, it takes a long time to work out that it’s what best for you that matters.
Hi SlowDragon,I am on a strict gluten free diet, but was never tested for coeliac. I have found that this has helped my gut a lot. What it is doing for my vitamin absorption, I don't know, as I had held off privately testing the vitamins - thinking (what was I thinking!) that the endo would order them (her reply to checking levels of vitamins - "one thing at a time, let's change your medication first and then see what is needed". I am going to bite the bullet and get them all tested, along with the FT3 as she wouldn't do that. Of the vitamins above, I only take the D, and have added the K vitamin a month or two ago. Currently I also take a form of niacin for cholesterol support, magnesium, C, and omega-3s/fish oil. I have followed the suggested patient to patient protocols when testing, and will add the T3 regiment into my planning.
My current plan will be to get things tested and then "suggest" in a way that makes her think that whatever I suggest is her "good idea" (that worked with my regular doc, so I am hoping that this psychology works for her, too).
Taking T3 just once a day doesn’t always suit everyone. T3 lasts about 8hrs with a half life of 1/2 days. I was advised to take my T3 5mcg twice a day leaving 8hrs apart. This then covers most of your waking day. I have to increase to 3 times a day if I’m regularly exercising. I felt absolutely dreadful when on Levothyroxine alone. Combined medications has been my success. I now feel full of energy and raring to go from being unable to walk it got that bad. I’m a poor converter which was confirmed by blood tests and my DIO2 gene test was positive. When on T3 medication you must always have TSH, T4 and T3 checked at the same time. Never take your medication prior to a blood test as it’ll cause the result to spike.
As soon as I took my T3 within 2/3 days I felt an immediate positive response. I hope you get the same response but if not keep going with it as some people need to build it up. Over medication can lead to dizziness, agitated feelings and poor sleep so keep your eye on your T3 levels.
We are in danger of chasing a number of hours without illuminating anything.
T3 levels in the blood are usually quoted as between eight and 24 hours. Many reasons for this variation, including whether the person is hypothyroid or otherwise affected by thyroid issues. (Healthy volunteers are often used in medical experiments. Hence, we have more detailed information about them than those with thyroid issues in many areas.) If you are low in T3, it will probably reduce in blood levels faster than if you have sufficient.
Imagine you are very low in T3, then you take a dose which is insufficient, it really will appear only to last a few hours. A higher dose and/or a higher base level of T3, would appear to last somewhat longer.
Further, the blood level of T3 might drop after a number of hours, but there is research demonstrating that the impact of taking T3 can persist for at least two days after taking it. We do not have the technology to measure the T3 levels inside cells, so we have to reply on inference, but it is clear that it is not a case of the impact stopping after a few hours.
It does not matter what T3 looks like in the blood vs what T3 is doing in the cells. Can we stop talking about how thyroid meds look like in blood levels and start educating ourselves better about how to get it best within our cells of the organs? This is where healing starts and the madness stops already.
I would add, be prepared to be patient, T3 is not usually a quick fix treatment (think headache/paracetamol)
I have a type of thyroid hormone resistance and now need high dose T3-only. My cellular T3 levels had become very low so it took a very long time to saturate the cells....others may improve relatively quickly with just a few mcgs. We are all different.
T3 must be added low ( by a quarter tablet per increase) and slow ( every 6/8 weeks) this is essential to allow the body to adapt to what is a powerful hormone.
Adding more can also cause you to miss your therapeutic dose/sweet spot.
Timing of the dose depends on your body's reaction to it....some people split the dose, some take it all at once, some in morning and some at bedtime. BUT always take replacement thyroid hormones away from food and drinks....- 1 hour before eating or 2-3 hours after eating - for maximum absorption.
I take mine in a single dose at bedtime...that works for me.
Trial and error is the only way to find out what best suits your body....listen to your body it will tell you when something is out of kilter
It sounds as if you already know more than your GP...don't be persuaded to do something you know isn't right for you!
5mcg is such a small dose most are optimal around 60-100mcg taken a few hours apart. Biggest dose up to 25mcg in the morning.
She sounds uneducated if she thinks you cannot be bother hypo or hyper. You can have hashi and TSI antibodies. Usually, if you feel hyper on a small dose it’s because you need to increase.
T3 should be taken in the morning if saliva cortisol is low. Order online for saliva cortisol before making changes. If low, treat with T3. Get her on board with this info.
Yes, you have read my profile correctly. I have been on 200mcg T3....a dose that would most likely kill someone who does not have a form of Thyroid Hormone Resistance. I trust you also read about my T3 journey with RTH and why I need a supraphysiological dose of that replacement hormone.
You are comparing apples with pears!
Your suggestion to Recon , who is just starting to add T3 to her T4 dose, that most are optimal on 60 to 100mcg T3 is not only confusing but very concerning.
T3 is a very powerful hormone and must be treated with both respect and caution.
For those of us who need high dose T3-only, it is the last resort because nothing else worked. I cannot imagine where you read that, "most (on T3 - you confirm you were referring to T3) are optimal around 60-100mcg"- that was what led me to ask if you were confusing Liothyronine with Levothyroxine because 60 to 100mcg more closely resembles dosage of the latter.
I'm not confused just concerned that people are given accurate information.
To quote radd , "If I took your suggested 60-100mcg T3 I think I would die!!"...she understands T3!!
I hope that you keep well....farewell and good luck on your own thyroid journey!
'5mcg is such a small dose most are optimal around 60-100mcg taken a few hours apart. Biggest dose up to 25mcg in the morning'. .. 😳😳 You are discussing this on the O/P's thread who is medicating Levo in addition to T3.
Firstly the hypothyroidism appears and -
‘In the most common cause of hypothyroidism, Hashimoto’s thyroiditis, the failing thyroid’s T3 secretion rises higher than T4 secretion when a poorly-functioning thyroid fragment is overstimulated by high TSH levels.’ (Abdalla & Bianco, 2014).
.... and then T3 plummets upon T4 med replacement because high doses may suppress TSH required to aid in cellular T4- T3 conversion, and also risk up-regulating D3 enzymes which convert more T4 to RT3 and (in Tania’s own words) also ‘blocks T3 from entering the cell’s nucleus’.
For many with common genetic impairments the smallest amount of added T3 is just enough to up -regulate conversion of T4, resulting in higher levels of T3 than the amount medicated … magic 😁.
In his book Dr Peatfield claims some patients may be able to reduce their overall total thyroid hormone replacement dose after adding a tiny dose of T3, and often used Nutri thyroid glandulars as a means of getting that tiny bit of T3.
If I took your suggested 60-100mcg T3 I think I would die!! 5mcg T3 dose has its place in some peoples medications, and your suggestions of 60-100mcg would be more appropriate on a T3-only regime post.
Thank you all for your replies. I am encouraged that we have a variety of views and I am confident I will continue to listen to my body, ask questions, get many possible perspectives, follow up with more research and make informed decisions for myself. Please be kind to all - I do come here to hear the wide experience of our journeys. We are all unique individuals with our own unique gifts to share - and again, thanks for everyone sharing your knowledge.
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