ok it's me again but my brain is so confused and foggy right now I just can't think straight in the best way to tweak my doses in light of my recent July test results shown in the linked post.
I know I know I know a lot of you have been telling me for a long time now to up my T3 from the 10mcg I have been on for a very long time now but there is an irrational fear there which stems from my first Endo whom I saw privately back in 2016, not long after I found this forum. A German Professor who did lots of tests on me via the NHS (as he moonlights privately). I chose him because he's a Professor, had written papers and alike so I assumed at the time I might actually get somewhere with him.
He could see from tests that I didn't convert well and I mentioned going on T3 (as suggested by this group)...in fact in a letter he wrote to my GP he said I was fixated on the idea!"). He said that even though I didn't convert well he didn't want to put me on T3 because he he was worried that it would worsen my already severe anxiety at that time and advised I go home and get my stress levels down and that was basically it from him!
Despite his so-called expert advice I ignored it and listened to what others had to say about it on here and started my T3 journey but there is a very irrational fear and reason why I never really tried to increase it and that is due to what my Endo said to me (I am relucant to try you on T3 because of your current severe anxiety, it may worsen it"....and that has kind of embedded itself into my brain
Also around that time I discovered I had Hashi's and had a lot to learn about not only my thyroid but the Hashi's as well and everything that goes along with it. I worked with an FD who discovered I had SIBO, Candida overgrowth, exposure to mold, gut dysbiosis, neurotransmitters out of sync so I was more of a mess then mentally and physically than I am now and totally fixated on trying to get better because of how severe the anxiety was when it suddenly came back out of the blue after a few years of being totally and utterly free of it thanks to the AD I was put on, it was a life saver for me after over 20yrs of suffering with it every single day and it felt very frightening when it returned and has stayed ever since.
I actually did try for an increase back in 2016 when I was test test testing too much and more obsessed and even though it was only two weeks on that small increase the results in my being over range put me off and I went back to 10mcg which is where I have stayed, I suppose being fearful that it would happen again if I tried to increase again, and if it did where would I go from there. Albeit back then I wasn't aware of stopping my B complex a few days before nor did I know at the time that I needed to take a small dose of T3 8-10 hours before testing but seeing those results was enough to put me off, but I know more now than I did back then.
***15th August**** - after being on 15mcg t3 and 75 Levo for just over 2 weeks dropping from 100 Levo.
TSH 0.97 0.27 - 4.20 IU/L
Free T4 13.77 12 - 22 pmol/L
Free T3 H 9.34 3.1 - 6.8 pmol/L
Anyway, hopefully that explains to those that have consistently told me I need to up my T3 and the fear of trying again. Being alone and isolated along with all the irrational thought processes it's so very easy to talk yourself out of trying anything with the fear of "what if" happens.
Now.....it's time to put my Bridget Jones big girl pants on and bite the bullet and go for that T3 increase.
I feel my FT4 is still a little high in the range for ME at 20.5 (after tweaking 9 weeks ago from 125 to 100mcg due to the 125mcg taking my FT4 over range at 22.7). Not that much you would say but I obviously know my own body and too high in the range for me feels crippling and oh boy crippling it was going over and currently at 20.5 I am still feeling it's a little too high for me.
Plan of action...input welcomed please. Am taking the low and slow approach as advised
1. Stay on 100mcg T4 and add 2.5mcg T3 and hope that the small increase helps drop my still high FT4 a bit more as I have been advised it could do?
2. Alternate between 100mcg and 75mcg T4 and add 2.5mcg T3?
3. One of the above but add 5mcg T3?
4. Any other recommendations?
Because of my obvious sensitivities, especially to brands, I am leaning towards No. 2 but my brain is too mushy at the moment to work anything out tbh. I am scared to make the change but I know I have to try
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Jefner
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I’m so sorry you suffer with anxiety too. I just made a post today about my struggle with it and T3. For me, T3 is a - can’t live with it yet can’t live without it. When my FT3 level is above mid range, my anxiety vanishes. But I think my adrenals and now low cortisol make it all very unstable and I crash. This brings back the anxiety because I can’t tolerate T3 when I’m in this state. It’s a never ending merry go round.
So I commend you for being able to tolerate 10 mcgs of t3 despite your anxiety.
wow just read your post and I somehow feel that I may be in the same boat as you although I haven't yet reached optimal levels with T3 to see if it makes any difference but I am so hopeful it will, because if it doesn't then it's the end of the road for me, I can't live with this level of anxiety for the rest of my days. I have always had a feeling that it doesn't suit me but have had anxiety on and off for most of my life unfortunately so it's so difficult to tell whether it suits me or not but when I get my levels in a better place then I will know.
I had a spit 4 point cortisol test done a couple of times a few years ago, the first one back in 2016 showed my waking cortisol completely OFF THE RAILS. I had another one done later and it came back with better readings. I obsess too much tbh and went through a period of testing so much because I wanted to know the root cause of why my severe anxiety came back but I never found out why and it could be multiple things with me so I won't do another cortisol test now because it will just send my mind spiralling again, more than it is now. I just rely on the morning cortisol that is included within my test and the levels are within range in the morning but STILL I awake every damn day with this debilitating anxiety.
How come you feel you can't tolerate it and yet you say when your levels are optimal your anxiety disappears?
taking t3 has always been a struggle for me, both NDT and cytomel. But when I do get through the awful symptoms of increasing and get my levels above 50%, I’m a perfectly sane person 🤪. It just isn’t very stable for me. It’s like after awhile my body just says - nope! And I crash. Rinse and repeat. But this last crash is the scariest I’ve ever had. The anxiety has been worse than ever and I’m having some other symptoms that I’ve not had before. My doses affect me emotionally now. Have you ever experienced that?
I agree, the cortisol thing confuses me too. My spit test says I’m low but my blood test says I’m high normal 🤷🏼♀️.
the 4 point spit test is more accurate I believe. When I went slightly over range on my T4 back in April my anxiety symptoms were beyond frightening so it was clear to me that, even with the anxiety always present, it wasn't quite so severe being more mid range, but I just want rid of the anxiety. The drop I made in T4 didn't make as much difference in my FT4 as it did when I dropped this time last year which astounded me but that's Hashi's for you I suppose and my biggest fear is that I will never be able to stabilise on any dose. Since this started I have been more of an emotional and physical wreck than I have been since my 20's
Same, I’ve been unstable since I started adding t3. Even with a thyroidectomy. And still low hashis antibodies. But T4 only is also not my path because then I’m anxious and depressed.
it's difficult to say whether I "feel" my doses. I sometimes think I get a few palps about an hour after taking it but with the existing anxiety anyway I can't pinpoint anything tbh. Maybe you are intolerant of both Levo and T3 and maybe need to move onto NDT which I believe a lot of people do much better. Could that be an option for you?
Also wanted to add, I tried the reduce t4 to make room for t3 approach and it was an utter failure. I actually think it’s taken me a year to get out of that mess and maybe why I’m still struggling. My ft4 looks big in labs but I think it’s a red herring. If I take enough t3 my t4 gets pushed down nicely to a comfortable level. It’s still in there doing something tho because without it, I get horribly hypo quickly.
Excuse me, @Jefner, if I hi-jack your thread a minute. I just have to say this:
It’s like after awhile my body just says - nope! And I crash.
@Knittergirl3, has it never occurred to you that these crash's might just be your body saying to you 'yes, that's great, but it's not enough yet', trying to tell you that it's time for your next increase. It sometimes works like that.
My spit test says I’m low but my blood test says I’m high normal 🤷🏼♀️.
Thank you greygoose for your input. And you know, I’ve never considered that. I always assume it’s too much and reduce or stop t3 until things settle down a little. But this time they aren’t settling down.,I feel ick without t3 too. And of course I do because I’m on a lower t4 dose to make room for t3… and round and round it goes! So thank you for your insight. I assume then that you think I should push through the symptoms- anxiety, emotional train wreck, dizziness and increase instead of decreasing?
I posted my cortisol saliva results in my post. I still have a slope but it’s low throughout the day. But again, my blood cortisol was upper normal. I don’t have fatigue or want to nap but I do have some weird symptoms this time with my doses.
I assume then that you think I should push through the symptoms- anxiety, emotional train wreck, dizziness and increase instead of decreasing?
I think it's worth a try, yes. How long after and increase do you crash? Because you don't have to 'push through' for very long. You can, in theory, increase T3 every two weeks. I wouldn't advise increasing that fast for very long, but if your crash is about two weeks after your increase, just give yourself another increase, and see what happens.
This is the point I reach too. I am extremely interested in greygoose view. I don’t know what level others get to at this point and be able to “push through”. I would think that perhaps this is on a scale. Some people it’s quite low anxiety and symptoms and others much higher. I have been looking for other reasons why this happens since I have not been brave enough to “push through”.
I have found a ‘something else’, other than adrenal issues which are talked about a lot on the Forum and I know this will be an issue for some. I found it difficult to use anything offered as adrenal support as it created low grade background symptoms I was already having and I was trying to alleviate those! I did finally add Vit C and E, which I found I could happily tolerate, to support my adrenals.
However the biggie for me has been heart racing and following on anxiety. Note the order. Anxiety follows. I have reason to believe there is a physiological answer.
That ‘heady’ feeling of improvement whilst on T3 (for me) is an echo of the kind of addictive behaviour I experienced with Hashi flares. OK why should this be a problem?
Well (for me) it’s a sense at some point (perhaps) of throwing everything I had experienced/learned into the wind. I almost felt indestructible, such was the improvement and my circumstances.
I think.
However my body could not just quite deal with the changes T3 brought because I, even momentarily, let go of my ‘new order’ for the old ‘heady’ behaviour. I just did not understand feeling better, also now included all the careful changes to diet etc.
I had a big reminder just two days ago how awry this can go.
For me (and I have said it umpteen times and persistently go back on it, when I am ‘heady’) the necessary uptick in metabolism by taking T3 must be matched by close attention to food (fuel) intake. I must ensure I am eating enough. Don’t imagine T3 will work well if your food intake is not quality and the correct quantity. No short cuts. My body really can’t deal with them and it’s a really difficult thing for me to fully adhere to. I wish I had a Mother or a Chef dealing with all that for me, at least temporarily.
Shortcuts are for example, thinking I can eat like other people around me. Well if other people eat properly that would be good. It’s my experience though that there are lots of people who don’t eat well. It’s annoying that they get away with it and I don’t. In saying that, I mostly do ‘eat well’. It’s my forays outside my eating well, that seem to be doing an enormous amount of damage. I notice it now even when not on T3.
For me this ‘poison’ is white sugar. I am fine on natural sugar in even high sugar fruits/dried fruit etc but added sugar to anything has proven to be very dangerous for me. Far worse than gluten.
It’s ‘heady’ behaviour, thinking I am now ‘normal’ is my danger point.
So many answers are available in the literature. Obesity, T2D, insulin resistance, pre diabetes, syndrome X, hypoglycaemia. All trumped as causes associated with thyroid issues.
If you even vaguely suspect this could be you, pay attention to your diet. By the time this stuff has damaged you (late diagnosis etc) it’s a problem in its own right.
The one thing I have not come across in my reading as yet is a proper acknowledgement of this as a hypo issue. Papers seem to think these issues cause hypo and not the other way round. I dispute this from a purely personal view. Explanations say thyroid treatment is limited in its effectiveness if you have the previously mentioned conditions. To me that’s only putting the cart before the horse. I honestly think that hypothyroidism is the underlying condition that brings all this about. (Professor Leilani B Mercados endocrinologist). If you tend to only those dietary issues you will still hit problems when you are hypo. Both issues have to be dealt with at the same time. The issues needing dietary attention will not deal with the hypothyroidism and dealing with the hypothyroidism will not (after they are fully established) deal with those other conditions mentioned. Dealing with both together I am hoping makes the difference.
I must make clear here that this remains hypothetical as I have not overcome the white sugar issue, just having had yet another night in A&E with symptoms I now realise (again) are related to my ‘poisoning’ myself!
With this realisation (again) I hope this is now an end to those particular symptoms. I must see how I go.
Interesting. Myself I can't tolerate any of the so-called adaptogens that are touted for adrenal 'support'. They all make me feel bad. Along with several other supplements. Selenium, for example, or turmeric with black pepper - although I'm fine with both of them on their own.
With food it's either 'like it' or 'don't like it'. I haven't noticed anything that has had any particular effect on my well-being. Not even white sugar. But perhaps I'm just particularly insensitive. I don't know.
Agree on the adaptogens. Great you had no problems with sugar. I don’t think it’s necessarily insensitivity. It (luckily) just does not apply to you. Maybe you grew up with better organised eating or maybe your hypo just simply does not effect you in this way.
Around the time I had my MI back in 2002, metabolic syndrome X was a ‘thing’. It had so many of my ‘symptoms’. I discussed it with a kindly GP. No dice. But interesting it’s come around again, especially since making ‘improvements’ with thyroid medication and noticeably better eating.
Contrarily I feel my ‘re-sensitivity’ is a result of feeling a bit better. Like peeling away the layers of ill health.
This is interesting to me because I can relate. First, yes, same in regard to treatments for adrenal support. They just didn’t agree with me. But also that you mention supporting yourself after you do begin to feel better with T3. I seem to throw caution to the wind when I start feeling improvements also. I get lazy about the exact regimen that got me there. And I think it’s my strong desire to just be normal since my thyroidectomy. I so just want to be normal and feel like my old self. So, once I get a little taste of that and start having a life, I’m not as laser focused on my routine or strict regimen. And maybe I need to examine that. I’ve never really considered it until you shared your experience and theory.
I am glad someone else gets similar. I am great on T3 until I am not! It’s sudden for me and I now have made a connection. I love your description “laser focused”. It’s pretty annoying when other people seem to be able to do what they like without a care.
I was sitting watching the birds in the garden this morning, sunning themselves. However it’s only a pause from their industrious lives. What are they doing? Mostly it seems looking for food. I have always felt thinking, planning, shopping, preparing, cooking, clearing is a pain. But someone has to do it. This is my theory about (until relatively recently) there have been few mega female artists. Our daily chores prevent us being as productive as our male counterparts.
I should probably play the lottery and hire myself a chef!
That is exactly me! T3 is good, until it isn’t. But like I said, I’ve learned that I need it without a gland. What are you doing now? T4 only? I’m slowly increasing after a delusional time of thinking once again that I could make t4 only work. I’m at 5 mcgs and need to increase but I’m scared to push it and wreck myself. According to past labs and careful consideration my goal is 10 mcgs. And I agree with grey goose that i probably just need to push through the symptoms and do it.
I felt much better when I bumped up my T3 by quite a lot over a couple of months and split it out over three doses in the day. I dropped T4 completely.
Hi there - have you tried taking your T3 over 3 doses in the day ? I've started doing that - its much better for me and I don't get the peaks and troughs
so would you recommend I just deal with this slightly high FT4 then and try and get that slightly lower before I attempt to try and add a little more T3?
you won't be confusing me any more than I feel right now with all this brainfog. I did re-read and the couple of suggestions was regarding my FT4 to get it down a little more by dropping slightly on my Levo eg. probs taking 100 and 75 on alternate days, or dropping it to around 87.5mcg although not sure how I could do that with the 100 and 25 tabs I have. Nothing about adding more T3 instead, which I just assumed I would be advised on again because of how low it has continually been
What was the something you were going to suggest, I am all ears because everything I do I just feel I am doing wrong or it turns out wrong continually
I feel my FT4 is still a little high in the range for ME at 20.5 (after tweaking 9 weeks ago from 125 to 100mcg due to the 125mcg taking my FT4 over range at 22.7). Not that much you would say but I obviously know my own body and too high in the range for me feels crippling and oh boy crippling it was going over and currently at 20.5 I am still feeling it's a little too high for me.
20.5 may well still be too high for you but a drop from 22.7 is a significant amount. Looking at it in percentage terms may help you see that a 22% decline is a fall of almost a quarter
It’s impossible to predict how much FT4 will fall by decreasing levo but let’s just assume for the purposes of illustration that if you lower your dose by a further 25mcg you’ll get another 22% drop in FT4. Your FT4 will then fall from (20.5) 85 % through the range to 18..3 (63%) through the range. Think about what sort of level you’re aiming for
All the previous advice to make small changes slowly is sound and sensible and even you say 20.5 is a little too high. It might feel counterintuitive to go at what feels a tortoise's pace but by doing so you have nothing to lose and everything to gain because ultimately you’ll arrive at your optimal/sweet spot more quickly and not make a hare’s mess of it by running right past it at speed. Going backwards and trying to retrace steps in order to find it is usually a lot harder than moving forward slowly, as many here, including me, will attest to
Hello Jefner
It could be me who wrote that post as I was in 2016. In fact, that was the year when I saw an endo who gave me the same advice - and who, from the description you give, is probably the same one that you saw.
I too was obsessed with testing . Even after this very wise Endo corrected my conversion issues (which he immediately recognised) I couldn’t stop tinkering. I really believed that the nearer I was to the top,of the FT3 range, the better I’d feel.
It took me quite a while (too long) to realise that levels of FT3 as high as that were not right for me. They caused intense anxiety which, in turn, exhausted my already struggling adrenal function. Then I thought I’d feel better if I added more T3. Even a small increase made me feel worse.
I now understand what was happening to me when I made all those mistakes. I’ve learned the hard way and am now settled on a dose which gives me an FT3 of about 70% through range.
Sometimes ‘enough is enough’ is true in every sense amd more isn’t necessarily better.
Good luck as you wade your way through the thyroid mire and don’t make your journey any harder than it needs to be by carrying a bag of angst as you go 😉
If I were you I would totally forget about 2016 and look to today. Changing only one thing at a time. I make a note of everything and write it down. Day, Date, Levo, T3, etc making up 7 days one week. Then onto the second week etc.etc. for about 6 weeks then take a look and repost maybe. You sound so confused which must add to your anxiety. Good Luck.
I'm dashing out, but if I get a jolt of anxiety (usually at night or first thing) and take 2.5mcg T3 the anxiety has gone in 20 minutes and I'm back to sleep or able to get on with the morning.
Too little T3 causes anxiety as well as possibly too much.
I can’t advise you on any medication recommendations but your post interested me for being so very opposite to the way I think. The main thing I picked up from your concerns was that you are in an anxious state over whether an increase in a medication will increase your anxiety. It seems like an endless circle. I also have hypothyroidism, only recently diagnosed, and at the time experienced increased anxiety. But I never attributed the anxiety to the thyroid disorder or to levels of medication. I am not saying it’s wrong to do so, it’s just not the way I operate. True my anxiety became more apparent after being officially diagnosed with hypothyroidism but I had also been going though a period of intensely stressful events in life. It was clear to me that was the cause of anxiety symptoms and if there was less pressure from external events I would not feel that way. We can’t always control the world around us however so I was prescribed a course of talking therapy, The techniques for tackling feelings of anxiety were practical, logical, easy to do and effective. To play devil’s advocate, what your Gp said would be of benefit to you- (though perhaps they didn’t put it in a tactful manner) Address the anxiety as a separate and treatable condition. How do you know for sure that medication is responsible for the anxiety? One of the things I decided upon to control anxiety was to limit speculation on my health. The more I used to read about things the more my mind would linger in dark places. If I look at test results I get freaked so I don’t. Others here have referred to diet. I was also diagnosed with kidney disease which was potentially more threatening than the thyroid disorder, but I decided to implement changes to my diet to help my kidneys. Nothing radical, just trying to eat more wholesome and fresh products, taking a little time to think ahead and plan meals. I feel better for it. I usually pay no regard to numbers, blood levels etc, ultimately it’s how I feel that guides me. I know for some, scientific analysis helps them cope, and if it does help you feel better that’s good. But there are other approaches that might also be beneficial?
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Help with results after taking T3 for 2 weeks
Back again for help with recent blood results. Am i still a poor converter?
Big girl pants 
NDT dosage replacing Thyroxine
