As you can see these are my blood tests for a few days ago. My GP went berserk & demands to know what’s happening with such a blood test? Why is the FT4 so low & The FT3 so high. The simple answer is that I wasn’t taking any T4 but, of course, I also wasn’t telling my GP, or my endo. So, what hap-pened is this: I started on T3 when I returned from a trip to Europe. This was 2 years ago & I experi-enced a round of terrible headaches that made me stop taking .88 mcg’s of T4 only which I had been taking for 28 years with absolutely no changes ever: on the dose or the pills. I researched my problems, including sites like this one and demanded some T3. They sent me to an endo, who heard my story out and blanched visibly when I raised my voice & demanded some T3. He said he’d “start” me on 50 mcg’s of T4 & 30 MCG’S OF T3, even as I said I wouldn’t take anymore T4 and I stopped for about a week, taking only the T3 & feeling quite good but then started on, the50 mcgs of T4 & 30mcgs of T3 & quite surprisingly enough, it worked for almost 2 years. I took T4 50mcg’s & T3 30 mcg’s for about 6 months before he put me on 75 mcgs T4 & 20 mcgs of T3, which I fared quite well on for about 6 months, when he put me on 100 mcgs of T4 & 20 of T3, which lasted barely 90 days when it began giving me the worst headaches I’ve ever had; causing me to take only 30 mcgs of T3 for a week (again) before lower-ing the T4 from 100 mcgs of T4 and 20 of T3 back to 20 mcg of T3 & 75 of T4, which I actually added 5 mcg to the T3 and took 25mcg of T3 with 75 of T4.
So, the predicament was I was doing quite well again when I started getting the headaches again and went back to T3 only for a week, until, as I said I’m now taking the 50 T4 with 30 T3 ( my starting dose 2 years ago) but, now, believe it or not I have actually lowered the T3 to 22.5 from 30 (I cut three 5mcg pills in half) & take them every 8 hours. Now the predicament is that I believe the 50mcgs T4 actually must have converted (I thought the T4 wasn’t converting but how else could the T3 now give me as bad or worse headaches as the T4 had done. So that was when I started going back on 22.5 mcgs of T3 & will go back on 75 mcgs of T4 with that, praying that it (once again) becomes my closest dose yet that I feel well enough on to call it such for awhile. The only other thought I have had recently is trying NDT, the one thing I have yet to try.
Anyone ever have this strange a story; I know it’s hard to follow but I’m a writer and if there’s one thing about writing I know it’s that the truth always is (hard to follow) Fiction you can make up; they’ll usually believe it, the truth is another story, they very seldom believe any of it but credit you (the writer) more than they do with the real fiction (actually the truth.).
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GKeith
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GKeith I’ll be honest. I really can’t keep up with your posts 😬 The overall feeling I get when your post something is that you make too many changes too quickly and you don’t introduce either Levo or T3 slowly enough.
Just because you were ‘ok’ for 28yrs doesn’t mean that you aren’t sensitive now. I feel like you need more patience. I’m sending you calming vibes so that you can hopefully dial it back a bit 😬
I mean no offence, it’s just an opinion, you don’t know me, I don’t know you but those are my feelings of the several posts I’ve read over the last couple of months.
Lol yep Keith sorry that was super hard to follow! Why don't you forget the past years and just settle on trialling doses, each for 8 weeks, and only small changes at a time? I'd be interested to see how you go.
The problem is I know you're right but when I change the dose I eerily feel as if: "I've been here before," and I know you're right I change too quickly but I want to just: feel better so badly I can never seem to wait because I (had) have already taken this same dose before. That's why I feel as if NDT is my only (last) hope. It's just getting too hard to continue taking ANY DOSE while my headaches NEVER stop "KILLING ME," & I feel abandoned because, indeed, I had just come off of these doses, which I took the proper amount of time (4-6 months) and, like I've said they worked but then, when the last dose 100 mcg T4 & 20 of T3
failed after 45 days I went back to the 75 mcgs of T4 & 20 T3 whic failed me also.
I hear you GKeith ☹️ We are all so unique and individual that there can’t be a one size fits all and finding that sweet spot can be difficult. But on the other hand we do need to keep it simple. Sometimes we can’t see the wood for the trees. It would be sooo good if we could rely on practitioners who knew what they were talking about because often it is only then that objective and safe practises can move us forward.
Sounds like your thyroid needs have changed. Id abandon trying to chase back to what used to work......it doesnt now or you wouldnt have had to change it in the first place.
A hard lesson I learnt a few years back is to change one thing only at a time & then leave it for 6 weeks retest & if needed make another small change. Quick changes just confuse the issue as your body is slow to respond - if you change quickly or make more than one change its hard to know what your body is responding to. The other problem is that you can easily over do things and move beyond your sweet spot -the optimum dose. Incredibly frustrating!!
The other thing to check is the usual b12, vit D, ferritin etc. They can make a massive difference. B12 & iron is often low. B12 helps with uptake & when I corrected mine my temp went up from 36.4 to 36.8. I also had to slightly lower my thyroid meds -am on a NDT. What I found interesting about that was my b12 was technically in range at 235 (bottom end 194) but I had loads of neurological symptoms so treated with b12 jabs. The temp effect and lowering thyroid dose were unexpected but welcomed side effects.
I know you're right but when you change only one thing, like I changed ONLY the T4 because I had felt good on more T3 so I left the T3 at 30 mcgs at 75 mcgs of T4 instead of dropping to 20 & ended up feeling better on that but then when going to 100 mcgs I went to 20 mcgs of T3, so I was at the "right" dose (for me) or so I thought (& still think because I dropped the level of T3 only by 7.5 mcgs & raised it equally.) Maybe I was wrong but I am where I am and can't change it now. When I was on 50 mcgs of T4 & 30 T3 I felt really good because the 50 T4 pill was all white & had no additives or fillers & I was feeling so bad on 88mcgs of T4 Only, which never felt good. So, I was paranoid about the T4, & still am,, because I thought, it was not converting & I just didn't know if it was converting, & still don't know if it's converting because how can you check the T3 when you're taking FT3 pills that ARE ALREADY "CONVERTED." Or the T4, which. if converted, shows up as T3 or Reverse T3 if it doesn't fully convert? These are questions no doctors are able to answer & don't but just issue you an order to stay on this dose (which gives you Horrendous headaches) for 3, 4 or sometimes even 6 months straight & I personally know of people on T4 only, because I was one of them, for many years (28 for me) still with ice-cold hands & feet & 94, 95 degree temperatures, totally ignored because their TSH is "in range." So, who the hell do I trust? Myself, who feels these headaches & suffers or the doctors, who feel nothing & write perscriptions they sometmes don't understand themselves? And, then, they get "upset" but only because the blood tests show a low TSH, low T4 & high T3?
And, there is a deoidnaise enzyme mutation, I think it's D-101 or 102 that, if you have it, your susyem won't convert T4 to T3 and when your body is under stress your thyroid is said to make RT3 in order to consume energy & some scientists believe that, when still encountering stress the thyroid continues making RT3 instead of active T3, which creates a problem at the cellular level & needs to be checked via blood tests. When it's high it causes migraine headaches. I still have a thyroid; not that any doctors give me any "credit" but why don't they? What if it could be "fixed" with vitamins, etc, until you no longer need any T4 or T3 or even anymore thyroid hormone? Who knows? There are Naturalists who claim there is because they do it, apparently. Peace be upon us all in these times.
Right near the beginning you talk about feeling good on 75mcg of levo and 30mcg of T3. Did you then leave that dose at that level for 6 weeks? And if so why then did you make two changes, increasing the levo and lowering the T3. Did you check your bloods before making the decision to alter the two thyroid hormones? You do need the blood test results as well.
I found it was really important to keep a log. I kept a daily log of my pulse and temperature first thing before rising, the thyroid meds dose, any vit/ minerals talen, my symptoms and signs, how I feel. Added to this I would put copies of blood test results. This forms a neat record and over time trends show up. Great to refer back to.
To get this right you need to be methodical, making slow changes as I wrote before. I know its tedious but its necessary . It the tortoise who wins the race to optimum medication, not the hare.
I started on 50 mcgs of T4 & 30 mcg T3, which I did well on for about 4, 5 months, went to 75 mcg T4 & 30 of T3 for about 6 months and did just as well then went to 100 mcg of T4 and 20 of T3 (which I sometimes slipped up to 22.5 or 25 mcg of T3, to feel better) which I stayed on for 45 days and then crashed, getting headaches beyond migrane, I called them "thyroid headaches," sometimes getting dizzy, brainfog, upset stomachs, etc. I, then, stopped and started over the next six months, usually up to no more than 30 days because that had been plenty time before, even though I stayed on them (to satisfy my endo, even as I was doing great on them) but nothing "stuck," & the heardaches, which were & are unbearable, came back. I went (back)on T3 only for a week with much lower headaches but them switched back to "start all over" & went back to 50 mcg T4 & 30mcg of T3, but it was no good, just more headaches and sickness, for 2 or 3 weeks, praying for the correct dose to return I went bsack to 75 mcgs of T4, & 30 mcgs T3, then 100 mcg T4, 20mcg T3, but it never did come back, not through the 75 & 30, and 22.5 & 25 and also not the 100 mcg of T4 & 20 mcgs of T3. I changed the T3 up & down, the same T3 that had worked so good with the same amounts of T3 just a short time ago.
I'm well aware about sticking to the "same dose" for long periods of time but when the same "dose: worked so well once and then refused, it's time to stop taking what you were taking, which I do & did. I only pray that I can, somehow, get an endo with a heart and an ability to help me find the "problem."
Of course it could be other mitigating factors, as I had 4 infected teeth pulled during these trials, a problem with my cataracts, when my optician refused, for the 5th straight year told me they weren't yet "ripe," even as I can barely see during the night and things are blurred in the daytime, as well. I realize I have a "problem" but also that it could be my cortisol, my T4 not converting to T3 or anything that has previously been refused (by the doctor(s) for no ethical reason, to even test. It's always money, these doctors all work under a system whereby they make more money for the insurance compannies who they work for, in reality, under a "capitation" system that pays them. Peace ne upon you and all in this pandemic and hard times .
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