I wrote post earlier.. Allie323 with Hashis, finally-diagnosed 2012, with 20 years of symptoms gradually worsening and always normal blood except high TSH 5.4 Dec. 2019. Have 1/2-Partial thyroid. Benign nodule removed when 15 yrs old.
5 days on T4. I did 50mcg 2 days, got racing in chest, short breaths, dry eyes. Then did 25mcg past 3 days. Sunday afternoon, felt very calm, good! Stayed in bed writing, mind kept busy. But ate very little, didn't go to store to get food. Just enjoyed it. I've been thin past few years.
Monday took walk to store in am. By mid afternoon I got very dizzy! The racing feeling, in my chest, its hot or just pressure. Burning in mouth, tingling in lips, nose, eyes, are dry, sore, a bit swollen left lid, watering. This concerns me--these hyper-symptomsfr Hadhis?I already had this- self-trying T4T3 20/4 combo, T3 only or Synthroid in Dec.
(Trying to stick to this T4 only. But slow release T3 bothered me too on a short trial. I talked to Paul Robbinson by email some time ago before now: Recovering with Reverse T3)
Grey Goose has been helping to encourage me.
Feel very overwhelmed. Depressed only from trying things, having no change, for this long!
Only getting worse physically. Can't do anything, but stay in bed at home, too fatigued to go out but can get up to go. Not- sleeping is so hard.
Woke at 2:30 am. Felt pain in chest left side. Could be, I stop breathing with mild apnea. Haven't taken T4 25mcg yet or- 50!- yet. Its 6:30am US time.
Thanks....
(New test added: reverse T3. Others were posted before a week or two ago)
Reverse T3 22.6 (9.2-24.1) 9a.m.
15.5 ng/dl. 1pm
TSH 3.30. April 7
Now. 3.24 but tested it 1pm
T4 1.09 t4ng/90-1.701April
Now .89 .59- (.58-1 5
T3 2.20 pg/ml. ( 2.0-4.4)
Now. 2.71 (2.03-3.06
B12 721,
January tests:
TPO 202,
TG 349
(My TP0 is 177 now)
folate 14.7 ng ml, (>4.5ng/ml)
Transferring 255 mg/dl
Iron 92 ug /dl
iron saturation was 28%.
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Allie323
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Hi Allie, I don't know anything about Cortisol I'm afraid and most on here say rt3 is irrelevant. Just looking at your continuing symptoms and your tsh and t4 and T3, you're on a minimal dose and you are therefore low in range on T3 and t4 and high in tsh. You won't feel well till that reverses. I'd try to stick to 50 every day for six weeks then retest then increase meds if still low in T3 and t4 ranges.
Maybe try taking your Levo whoever you wake in the middle of the night then try to sleep again? Or as soon as you wake then no food or drink for an hour. I also avoid caffeine and anything with calcium in it for four hours.
I found taking low doses very difficult but taking higher doses easier as I think my thyroid just stopped struggling and accepted the meds would do the trick.
Sorry did not see your reply yet on here.. or my cortisol levels, from what I tried to send you last night.
What you said, I have done all that. Also don't eat or take supplements to interfere. Ironically, the two days I did well I took it at 9:30 a.m. not eating before that. I can't take it at night because I take sleep medication Lunesta 2 mg and Gabapentin for feet neuropathy 100 mg.
I could try taking 50 at 3 p.m. I read that's when T 4 Peaks as it is at its low at 3 a.m. I know that doesn't matter with T4 but matters with T3 dosages. I've studied Hashi for years now and these last 15 months not sleeping really studied it and have watched online here. I've gotten information. This morning I'm feeling terrible from yesterday my worst day ever and taking 50 2 days in row 25 before that. 50 before that. One week now. Slept 4-5 hrs on lunesta. Wrote tattyboggle below along letter at 5am on here.
I've just had a quick look at your previous posts, it's a bit hard to decipher a time line for dose changes etc, but one thing stands out very clearly... you are doing a lot of 'trying something for a very short time , then changing it ' The body itself likes stability and consistency in thyroid hormone dose, so put simply ,i think it would be a better idea to start at a low dose and stay on the same dose everyday for at least 6 weeks, before even considering changing anything.
The body simply won't know what's happening if you keep changing what it's getting every few days, and then not giving it anything ... symptoms while you're doing this to it can probably be put down to the body's systems constantly being in a state of confusion, rather than interpreted as a sign that that dose can't be tolerated.
You need to stay on a dose consistently for several weeks.
This is awfully long tattyboggle. But I'd like to hear your thoughts. ...You are correct on things.
I had a lot of side effects self trying. thyroid meds. ( I do with any drugs. I've been drug-free and into nutrition health. That's maybe why I lasted so long with Hashimoto's for 20 years.) So with no doctor to ajust me, fill prescription or modify, or blood work. None here think I am hypo. When I checked my blood Jan 13, my TSH was a bit lower but my T4 and T3 same:
2.80 TSH. Summer Fall 2.99. 4.09 2.64
FT4 1.26. Summer Fall 1.15 or 1.31
FT3 2.40. Summer Fall 2.40 ..2.80
My new GP said I had high antibodies TPO 202. TG 349. But my function was perfectly normal. I did blood test again on April 7.
TSH. 3.30
FT3 1.09 ngdl
FT3. 2.20pgml
Still in range. I talked him into giving me the 25 mg/ then I asked for 50mcg. He chose Levoxyl for less fillers, didn't want to give me Armour. I took the 50 mg tablet at10 am and two hours later I felt chest racing, weakness, some dry eyes and a burning mouth. I was told here, that I couldn't be reacting to T4 that fast! and it was probably the fillers I was reacting to. My Pharmacist said I could still have reaction to just the meds hitting my body. I took 50 mg 5 a.m. Fri felt same racing symptoms, Sat. cut back to 25 mg. felt bad, but I felt better on Sunday afternoon. Clearer, calm, relaxed. I wasn't doing anything mostly lying in bed Monday am I took a walk, got grocery then later, felt awful again same symptoms. Tuesday I held off felt so bad. And took 50mg at 9:30 am- stayed quiet all day until 3. Had to get groceries and started feeling better. That night I felt the best ever. Alert, clear. Wednesday I took 50mcg at 7:30am. Got anxiety, eyes sore dry, terrible fatigue, noticed hair was even worse, had been shedding before terriy now more shedding, scalp showing. So its now one week. Slept 4-5 hrs. with
Lunesta 2mg. That's better than my usual 3 1/2. probably cuz I'm so-- exhausted. 15 months nit sleeping probably apnea have enlarged tongue hypo symptom. This am I took nothing. Ironically I feel better on days I take it later in the morning??
I Can now ask a doctor to help me - but have to be careful what I say, he thinks I'm going hyper, instead of recognizing its adrenal fatigue problem, and may give me PTU. I was thinking of Armour. (I tried it once 2 years ago for 3 weeks)
Or T3? Too soon? Self trying stuff in Dec. I did react jittery to only 5mcg T3 during the day, but not evening- it was slow release. Maybe regular T3 can hit my body faster instead of staying in my gut all day and I could take it a different time than T4. I just wonder if I tolerate T4. I already tried T4T3 20/4 mcg slow release capsule from compounding pharm., and it caused jitters anxiety feeling. A functional doctor felt as I do, could be adrenal problems. Three years of stress.
I know I switched twice between 25 and 50 mcg but really felt bad and a member said stick with it a few more days before upping the dose if I felt bad on 25.
I was told here, I have symptoms and test results that look like this is Central Hypothyroidism which still is treated like hypothyroidism but doctors don't detect it. I have Hashimoto's antibodies anyway and my T4 is really low so I am, hypothyroid.
I also have only half a thyroid since age 15. No meds given my whole life in range TSH, but symptoms at age 34.
I don't mind 'long' lol... i do it all the time.. I'll have a look later.. or maybe in the morning .. i'm better at concentrating in the mornings keep getting interrupted by phone calls and 'places i need to be' this afternoon
I think you are perhaps making too close an association between how you feel on a particular day , and the dose /time / of Levo taken on that day. .......
You've not been functioning well for a long period , and prolonged poor sleep means all sorts of body systems can't work/recover efficiently .... this situation has taken a long time to get you to where you are now, so it's logical to expect an equally long time will be needed to improve when replacing thyroid hormones. You cells everywhere and your thyroid hormone control/response systems have had years like this and they are used to it this way.. they wont be able to just change back to doing things a different way in a week or so, even if you get the dose/time/type of thyroid hormone right for you . You might need to basically ignore what you're feeling on a day to day level for a few months and trust that improvement will come very slowly with up's and down's that are more to do with a system getting used to new imput, and trying to speed up, but managing to keep up better on some days than others.
So... if you have a bad day it doesn't mean that the dose you took that day (or the day before) was wrong , or you can't handle it and need to change it.
In fact, this approach is counterproductive , as every time you change it your body's systems have to recalibrate their response, just when they thought they knew what they were supposed to be getting used to.
Imagine a car that's been stood in a barn for years, then engine still starts and it still drives (miraculously ) but... put one kind of fuel in to one level in the tank and go fro a ride... it goes for a mile or so, and then it starts spluttering and backfiring... does that mean you put the wrong type or amount of fuel in, and need to put less in next time, or buy a different brand ? ... no .. the fuel type /amount is probably not the problem... it's more likely that the cobweb that was in the air intake has just got sucked into the carburettor.. which is only a temporary problem (unless you're the spider)
The way to get the car to work better is to keep putting enough fuel in and keep driving it every day..... the more it drives , the better it will get, the less sqweaks and clatters you'll get . the oil will get spread round where it need to be again, and as long as you keep putting enough fuel in it things will slowly improve as it drives further.
Which is a long way of saying .. my advice is still the same ... keep taking the 50 every day.
Make a note of each weeks symptoms, but tell yourself you'll review how you felt on this dose in 4 weeks , no sooner .
And unless anything is so bad you (really) need to go the Emergency Department, (ie. the car is on fire ) try to not put too much importance on it and carry on taking the tablets.
" he thinks I'm going hyper, instead of recognizing its adrenal fatigue problem, and may give me PTU. I was thinking of Armour. (I tried it once 2 years ago for 3 weeks)
PTU ?.. who is this bloke ? PTU is to reduce the thyroid's over-production of T4/3... none of your blood results on here show any indication that you are producing too much T4/3 .
If he suggests it again ..... RUN.
None of the bloods you've shown us say 'hyper' ,not even close.. and individual symptoms that 'feel like hyper' are simply not reliable . It is well known that the symptoms of overmedication can be very similar to under medication, it is notoriously difficult to tell the difference , even for people who have been settled on a dose for years and are used to it. Given that your body is newly trying to get used to having regular added thyroid hormone you can expect it to feel all sorts of weird things, but if you were actually hyperthyroid, your blood results would confirm it with raised T4 and /or T3, (and TSH would be lower)
Please do not even consider taking PTU without good evidence of actual hyperthyroidism in bloods, AND knowing the cause of the over production of hormone ie, finding a nodule that is producing to much T4/3, or having graves antibodies (TRab )making your thyroid produce too much T4/3.
( 'Over medication' is very different to 'hyper' ,it is too much T4/3 in the blood as a direct result of taking too much T4/3 medication, and the fix is NOT PTU , it is simply to reduce the dose
Or T3? Too soon? Self trying stuff in Dec. I did react jittery to only 5mcg T3 during the day, but not evening-"
Yep ... i think it's far too soon ... remember that little car ? .. now imagine how much trouble you'd have if you put rocket fuel in it before you'd driven if far enough to get the wheels turning smoothly again
Hope that helps think of things in a different way ......sorry it's so Looong !.. but you did ask.
I think you are right about giving it time. And I know about PTU being the wrong thing. I'm not sure what he said. But he won't be doing that.
Its this other thing, weighing on me. I am ok-- waiting. Its not knowing what my body needs. I don't want to use unleaded if a car needs premium and can't take the unleaded, sputtering and worsening. I have to take care of myself right- now. I am weakening terribly. I am by myself, others are elsewhere in another state, have to be my own support system right now. Been a lot alone, over 14 mo. with Covid, trying to handle this. Just to go to bed would be enough. But since I can't I need to expedite somewhat so I don't fall apart. I always note, observe. I realize there are bad days. But not like this.
Functional doctors, I saw one, feel it's best to first start off trying on an NDT. Then- switch to something else if not working. Sure, some people get sick on NDT. Some get sick on levo. What's the cutoff point -waiting for weeks and deteriorating and then trying to change with all that T4 in your system? Or noting it from the start.
Waking at early hours is now just too straining with- possibly wrong medication on top of it. My body is going whoa, I can't be in bad shape and take on this too.
I know my body needs hormone I assume. Tests are normal. Ok, they are not, really. The doctors don't get it right. All these years you're right. But I at least want to theorize I'd give it all it needs.
And so many are saying T4 only is a more conservative old approach and for average hypothyroid patients. Which I'm not, I'm a harder case.
Example, aching all- over when I had not been. Feeling ill. Anxious. Burning eyes, mouth. Is that normal, a good sign,? then great.
I feel scared taking just T4. Its a synthetic and not really replacing, it's just giving more of one thing that ciuld not be getting me the others t3 t2 calcitonin, etc. I know all thyroid hormones are basically synthetic I understand all that. But if I'm going to do this and feel bad I would rather be doing it in a more complete way. Something must have stressed me to throw my sleeping off and I miss it terribly. Even if I had the right doctor to test everything, I would just need adrenal help support eating better taking supplements etc.
I just wanted view on switching to an NDT and use that for the remaining 4 weeks, after hearing my symptoms?
Back to Levoxyl for a moment since I'm here at 6 a.m., and have to do something...is splitting the 50mcg helpful? You took at 7am and 2pm.
I know they say it doesn't matter with T4. But its maybe easier on body..
Another Q and A
(It is probably not good to take estrogen and progesterone right now also? Bioidentical. I mean. My guess, to just do one thing at a time. I was on hormones first to ready my body for taking thyroid that's what that functional Doctor who was into balancing all hormones thought for me. But I stopped them to do just thyroid. He said that wasn't necessarry but I stopped)
You've just reminded me .. i was going to suggest splitting Levo AM/PM .. but forgot cos i got sidetracked waffling about cars Yes definitely try it... ignore them when they say 'it shouldn't make any difference' ... what do they know , they don' t even understand how any of it really works in conjunction with the complexities of the 'HPT axis' anyway ,or why we are all so very different in out response .
personally, when i started treatment ...if i'd been aware of an option of regular NDT over Levo i'd have done it in preference to T4 only ... just seems more logical to replace with a bit of ALL thyroid hormones etc .. even if the proportions are a bit 'off' from natural.... T4 only is a lot more 'off'
Also...I just re-read my response to you and I sound, so desperate. Typing is so funny it's not like talking to one another with intonation.
I'm just stuck I know I barely shower and eat every day and having trouble doing all the normal things. I want to at least have patience with the right thing. Sorry I sound desperate. All my hair is falling out, I want to stop it....lol
It' OK ...you don't sound desperate .. I was just checking how much you understood about the need for consistency and waiting long enough for it to work .. some people really don't get it.. but it sounds like you do understand that part. I'n not sure what to suggest , because i've never had the sort of symptoms you have to meal with
Example, aching all- over when I had not been. Feeling ill. Anxious. Burning eyes, mouth. Is that normal, a good sign,? then great.
Anxious, aching all over , feeling ill ... these are what happens to me when for some reason my dose of Levo is not high enough.. they are also what happens if for some reason it's too high... it's just a subtly different 'sort' of anxious.
And the 'ache all over' is a bit different too , under = lower arms and hands ache.. over =pain in all sorts of odd places .
My eyes also feel 'wrong' on both too much and too little, but never 'burning' and .. burning mouth is not something i've ever experienced. so i don't know if maybe those are more likely to indicate more an intolerence to the thing itself rather than just 'not long enough on the right dose'.
I know nothing about bioidentical hormones , but i think you're right .. 'one thing at once' makes sense to me.
Sorry you're having such a difficult time.. this stuff is a frustrating puzzle to solve even if you're feeling OK ish and having some sleep.. so i'm not surprised it's worrying you.
If it helps ... even if T4 in the form of Levo is not helping and causing all these symptoms ,T4 doesn't last that long in the body , it would all be gone within a couple of weeks of not taking any more... so i f you do decide to change to NDT , the effects of Levo / T4 will not last forever.
Ok....thank you. I took 25 hour ago ago and may do 25 now soon instead of waiting til 2.
This trying to decide which medication for me, was not easy because help or any testing is scarce it's all,- up in the air. Like you said, I need stick to one. But I could fo Armour now. Its the only brand really.
Have you done T3 with your T4?
How are, you doing--on your T4? how has it been for you? You dont have Hashis...
I've read things on Doctor John Lowe his studies. Also, Paul Robinson how he recovered his hashimotos, using T3 only, his books. Was going to check out the Patient Manuel.
I now take 62.5mcg at 6/7am and then take 50mcg just before bed .. i find it helps deter me from snacking later in the evening as i eat dinner about 6/7pm then don't eat after that. It' possible splitting this way has had a beneficial effect on my TSH , but the jury is still out on that one , but anyway i think i prefer it , it's easy to do, and it more closely resembles how the thyroid would produce T4 naturally , rather than doing it all in one lump.. so i'm going to carry on splitting dose. Doctor no doubt think's i'm nuts ,but that's OK .
I had a thought about your 'burning mouth/eyes' thing ... as well as splitting T4 dose some people here take an antihistamine with it , and say its the only way they can take it .. have you considered that ? Maybe ask on a new post if interested , then those who do that will see it.
Adding T3 ? ....I was about to add a little T3 a few months ago , but then got a surprising change in TSH levels , which is V unusual for me.. so decided to hang on for a few months more to see what happens to how i feel with slightly higher TSH, and to blood results before i change anything else. My thinking is ,previous TSH was nearly supressed for many years , now it's gone up to a bit over 1 for no apparent reason, it will theoretically give me a bit more of my own conversion from T4 to T3, so .. watching and waiting for now. Also want to see what happens to it next and see if that sheds any light on why my fT4 was going up and up on the same dose of Levo.
Also have just got to a good position where my NHS blood results now seem to show GP was wrong to insist on reducing dose.... and i was correct on insisting it was put back up... and since he's just starting to trust that i'm not some nutter desperate to overmedicate myself i don't want the next set of bloods he sees to have a supressed TSH again because i'v'e added T3.
Once he's had another set of 'OK bloods' ( from his perspective) to calm his nerves, then i'll probably 'forget ' to get my blood done on NHS for a couple of years and have a Levo +T3 adventure without having them poking their nose in until i've had time to find if it's an improvement for me.
T4 (Levo ) for me ?.... about 60% effective in fixing me for 15 yrs (believed them when they said it was 'fixed' with Levo and anything else was just me being crap!).... then me and my blood results started to go wonky after menopause, and new GP's kept giving different brand every couple of months and reducing dose ... and not been so well since then .. hence ending up here and contemplating alternatives.
Hashis...? technically NO as i never had a goitre .. so probably Ord's , but it's the same thing really , Autoimmune cause ( i had >3000 TPOab ),slow destruction of thyroid . (presumably ..... no one's ever even felt it , let alone scan it .. poor little thing it feels very ignored )
Having a TSH over 1 is ok.. as you get older, you"re post menapause? Having higher TSH is all right- as long as you feel good. It will flux anyway. You are only on T4 so it's a smoother transition to get the T3 as long as you're getting it and you must be. I wish you would have better than 60% doing this for as long as you have. Did you say your TPO antibodies are greater than 3000? Mine were 202 last time I checked my Tg or thyroglobulin antibodies are 349. At 15 years half my thyroid was removed for a benign nodule; they could have left it alone had they done or had ultrasound but my mom didn't know. I've had hashi's without knowing it before 2012 diagnosis and I've had years and years of normal TSH checks so the symptoms just slowly increased till now and the sleep thing. I can't do antihistamines. The eyes drying and burning in mouth now are coming and going a bit oh, but it could be sleep medication covering that.So u do have has Hashi....
I would think if you have an easy ride and don't need to do T3, I would be curious what would happen to you if you did take it but I only tried it a short time and part of me wishes I had done T3 only longer but started to her bad headaches I guess your body was adjusting.
But then that could be a problem being able to get the added T3 prescribed or finding it. All these things to consider was why I started on T4 but what I hate is this big Pharma scare that they're pushing T4. for money, instead of correct medications.
Grey Goose told me a lot of people do well on T4 only and not to be afraid of it
My TPOab were 2499 then >3000 when diagnosed .. 17yrs later they were 194 ..don't know what they are now. My TSH was about 0.05 for over a decade and never moved much at all , despite fT4 going all over the place for no reason.. hence my interest in seeing what it does next. yes i'm past menopause now , and i suspect that is what's messed me up more than before.. but don't have a proper explanation for 'how'...
I think many many people must be absolutely fine on T4 only.(my aunty was , or at least she was until she was well over 70). and that is why it's so hard for the rest of us who don't get such good results to be taken seriously .. Doctors genuinely think , "well, all my other patients on it are fine".. (but of course , given that we know how bad Doctors are at hearing what we say....you do have to question how many of those patients are not actually 'fine' and are just being told their remaining issues are 'something else'... i'm sure my GP if asked would still say i my hypothyroidism was 'fine' on t4 only and i just happened to develop something like cfs/me at the same time as i started complaining i still wasn't properly back to normal on Levo )
Getting a continuous supply of thyroid replacement that doesn't keep being withdrawn / reformulated is a serious consideration for me . as i think even a slight change in anything thyroid hormone related has a very significant effect on me, and it's very hard to get back to where you were before, after a few months on the sofa etc.
So partly that is why i'd probably try adding a little T3 to Levo first .. NDT sourcing seems a bit more hit and miss... but in an ideal world i'd much prefer to just have a steady source of decent consistent NDT to play with. I do expect T3 to be a bit 'harsh'
By the way have you seen diogenes post a hour or so ago ,about a study evidencing the Slow release/gentle type of effects of NDT ?
levo under tongue...or crush. I was watching a. DR. Chills video on it, had pros and cons- I realize it's not a liquid like tirosint-sol. I searched on here, and Shaws here, wrote: Dr.s say molecules too big. So to chew and dissolve is not- ok? A few others on healthunlocked said they chewed it and dissolve it in water and their levels were fine. Was thinking to try under tongue to avoid gut or issues. might-- make me feel better, more absorption, more medication.
youtu.be/tlZEUnk7I-4 if interested. Probably best not to if its not liquid...hmm.
Yesterday I divided dose. Took 25mcg at 11:30am. Was not feeling good, but took other 25 at 2:40... felt extreme exhaustion, aching, in my knees and back, aching everywhere...I had gone out. I was just driving and walking a bit in stores. Ate a little before, not hungry. Very depressed. Felt so terrible physically.. Turkey sandwich, bean soup at home. To bed, took sleep meds. Lot of weird dreams..can't move now. Took 50mcg 8am...
Doesn't matter what you do with it in your mouth ... it's still going down your throat into your stomach.. it's (apparently, i don't know, i'm not a scientist lol! ) too big a molecule to be absorbed via the gums , or so i've read.The people who say their levels are fine and they 'do it sublingually' are in fact just dissolving it the tablet in their mouth and swallowing the saliva with Levo tablet dissolved in it ... so no difference to swallowing the tablet really.
So what do you think should I try taking it that way could it make a difference have you tried?
Any thoughts about all this aching and feeling awful. I'm feeling ill, not able to do anything. and does this happen for people with T4 only?
just don't understand it. If it's getting worse that's not a good sign- people don't get better, it takes awhile, but they don't get a lot worse trying to take a medication so it makes me feel it's causing harm. I got the wrong medication.
I had chest pain, pressure...very Depressed. Not sleeping more, but even less. I hate not sleeping for so long. I don't know what I'm doing, my hair long, so- thin, barely- covers my scalp, makes one tiny pigtail and is falling out again? with this T4. ..and my fingers are tingling? Sensitive to cold things? I had that tingling doing a compound t3t4. Don't want to take the T4 grrr,..and don't know what I can add or subtract to this scenario. I Will re-read your answers.
Yesterday I ate only a little. Thats not good. I'm sorry, I am so very messed up. Trying things too long, to sleep like I did, and now for Hashis, so I can, sleep. Feel something's wrong with me, everyone here including you is taking medication because they recognized it from tests, etc and how they feel. Mine isn't like that. I've always been normal and have symptoms but vague responses to any diet or now, medication. I just make myself worse. If you say keep doing the T4 I visualize getting worse, not like others, just feel bad have bad days. I can feel the signs...
To be honest . i think this is the problem here , not the thyroid hormone.
The only way you will ever find out if you can feel better on any type of thyroid hormone is to take the same dose for 6 weeks at least, then evaluate how you feel , then retest ft4/3 /TSH to help understand the effect that dose had ,before deciding how much to increase dose by.
As far as i can see you've never done this approach with any thyroid hormone whether it's Levo or T3/ T4 combo or NDT.
You keep looking everyday for how you feel and deciding whether you want to take it for another day, and frightening yourself that it's making you worse . and is going to keep getting worse the longer you take it.
Your current dose is 50mcg Levo...you need to
Do it for a week . Write down how you felt that week .
Do it for anther week .. write down how you felt that week.. etc
Do this for 6 weeks ..... get a blood test.... then decide if dose increase is suggested by your fT4/fT3 blood results or not... if it is, increase the dose slightly and do the same process again for the next 6 weeks.
Only when you are on a dose that gives you decent fT4 and Ft3 levels .. and you've been on THAT dose for at least a couple of months can you really know whether that type of thyroid hormone will improve how you feel.
If it hasn't improved how you feel at this point ... then maybe it's time to ask about trying an alternative form of hormone.
I DO understand how frightening the idea of 'getting worse' is, when you are already feeling like you are at the edge of a cliff.. but honestly you are your own worst enemy at the moment , because the one thing that is guaranteed to keep making you worse is constantly changing what thyroid hormone dose /type you take every few days... and more to the point telling yourself 'it's poisoning you' ....
Instead ...tell yourself "I expect to feel crap for weeks but i'm doing what's required to get to the right dose," and you will get there eventually as long you just keep on walking through the crap till you come out the other side.
Keep trying to eat a bit every day .
Keep trying to have a little fresh air /gentle exercise everyday,
Stop worrying about what time you take the Levo , or how you take the levo .. just make sure you take it every day.. ... (if it help's , split the dose in half AM and PM, doesn't matter what time as long as your stomach is empty when you take it, and you take it well away from any other medication you need to take, if that isn't easy to acheive, just take it all in one dose)
It's better to keep on taking the 50mcg at the moment, going back to 25mcg intermittently will probably feel worse in the long run... note .. 'in the long run' ... i'm not talking about what you feel like on the day or the next day....... i think that 's your main problem at the moment.. to much analysing what to do every day based on how you feel.. You need to accept that whatever form of thyroid hormone you take it will take many many weeks before you can tell how much it's helping.
Pleas forgive me for turning into a 'preaching old woman' ... i mean it kindly, even if it sounds 'shouty'
You don't sound preachy at all.:).. you sound fine. I'm listening.. . I did keep tabs on symptoms by week in past and now. When I say visualize it's hard to say what I mean by typing . I just know myself without the worry part, I have seen where I do go all full and positive- on many decisions, but when I get certain symptomslater I found out, I had needed to pay attention because things get worse -this is one- a worsening not just not doing well, listen--feeling. Im not like you, I can't just stop things anymore, or switch later. It goes further the other way. I'm older, and is one reason. don't bounce back. but I can handle it just have to be "careful."
The scary thing is my hair is almost gone..lol but not- funny. I can't fall asleep anymore and here I am seeing- my hair because it's becoming so noticeable...and need it( the other I have a sleep pill to help til I hopefully get better)
(So...you dont think ndt...before I get hooked -on Levoxyl? Like u said, you wish u had known to try it starting. I'm soory...I dont like big pharma drugs and Levoxyl is. My original intent was doing Armour and I did, try it nov 19' several weeks. It wasn't great feeling but not having as many-problems at beginning like now, I maybe already said this...)
And I did the t4 under tongue just for curiosity. Levoxyal melts. Feels funny now. Very fast. Eye burn etc. Jitters..
Well, I had a functional medicine doctor here I saw a few times who was not insurance so expensive, and all he did was sit behind this computer the three times I went laand ask me questions -he gave me no directions for what we could do so I asked him for a prescription of armor back then, I had never done thyroid medication and only did it because I had been diagnosed with suddenly getting mild neuropathy in my feet in May 2019 so I broke down and wanted to try and took it. 15mg. it made me jittery and dull and achy so then the last week or two I took one half. I was doing this celery juice diet eating for Hashimotos. Medical Medium, Anthony William? So, I felt really good one morning finally, and thought it was the diet and couldn't get refills without going to the doctor so I stopped figuring I would continue when I found another doctor.
then I had all this stuff happen January 2020 and after that broke my hip so it was covid in March. I didn't get back to handling the thyroid had to handle sleeping and a hip. Sorry for the long story but trying to come in the back door now. maybe handle the thyroid which will help my trying to sleep breathing better, as I was. Neuropathy I'm not worried about that will take care of itself I bet-- but also having molars removed last Oct. And needing replacement. (stupid dentist, gave me lock jaw extracting them so my mouth doesn't open real wide yet.)
Sheezz. . I just have a lot going on, beside taking a pill effects and Hashimoto's. Its too-- overwhelming with all 4 things and painful. yet, I'm here trying.. just less now. I just needed, one break, with something...
i have 2 thought's (then i have to go eat my dinner )
1) if feeling jittery and achy and deciding to half the dose was what happened last time you tried NDT why would it be any better now ? so surely you might as well stay on Levo .
(but before you answer that.... i don't know about dosing and 'grains' etc for NDT , so write a new post on here to find out if '15mg' is the right sort of amount to start on , or whether it was too much )
2) uncomfortable question time ......are you sure you really needed thyroid hormone in the first place.... if it was only neuropathy that decided it , are there other causes for that rather than thyroid ? i think i see regular references on here to low B ? vitamins being associated with neuropathy .( more than hypothyroidism) so ... would it be a good idea to post your original unmedicated thyroid blood tests (before you took anything) and symptoms, and any thyroid antibody results, for other people to see what they think about your need to be taking thyroid hormone at all, or whether they have advice about other causes of neuropathy .....sorry if you've already done all that , but this post is to long to navigate.
3) really bad luck about breaking your hip.. you have my sympathy. i imagine that is is real nasty problem to recover from , and bad sleep is akin to torture , so i can imagine how much of a struggle everything is for you right now.
4) .. yes i know i only said 2 thoughts , but i do 'go on a bit '....
Re. Mr Celery Juice ... he's been discussed a few times on here.. general opinion seems to be the only one doing well on it is his bank balance from selling celery juicers and possibly having shares in celery farms.. so i'm glad you felt well for a bit on it ,, but .... take his claims of thyroid cure's with a pinch of salt ... ( a bit like celery )
Off for dinner now , 6pm here... hope you have an OK afternoon..
In am all over place too- many years. Got Neuropathy after stress to feet in 2019. Had a lot of hypo or hashi symptoms by then....started with sinus inflammation at 35 3 day inflamed just hurt, slept them off.
lots of hair loss over years, chronic fatigue, constipation,
cold intolerance, but also heat intolerance, normal weight, later, loosing weight. Partial thyroidectomy at 15. I get hyper, hypo. Just know I lost my energy for years. had to drink coffee ole' with milk every morning since 2000.
DEC 2019
TSH 5.4
T4 2.31 (.82-1.77)
T3 1.59 (1.81-4.06) I suddenly, felt weak breathing, air hunger, and found it hard to fall asleep. Maybe apnea was there but came on sudden. Enlarged scalloped tongue is a symptom, I have that. Google:
Hypothyroidism: Can it cause peripheral neuropathy? - Mayo Clinic...
"Peripheral neuropathy may be caused by severe, long-term, untreated hypothyroidism. Although the association between hypothyroidism and peripheral neuropathy isn't fully understood, it's known that hypothyroidism can cause fluid retention resulting in swollen tissues that exert pressure on peripheral nerves."
Ok , i agree ... you probably do need to be on thyroid hormone ( i think this because ....half a thyroid and TPOab and a TSH over 5 , with some pretty low looking fT4 and under range fT3 , and once an over range fT4 ,in your history).. I just had to check .. so hope i haven't cause d you to worry about it.
Because of you habit of only taking something for a very short time and then stopping /upping /changing / stopping .. it is impossible for anyone to say anymore at the moment about what any of your thyroid blood test tell us.
Blood test's are only useful if the person was taking the same dose daily for 6 weeks previously, or was taking no thyroid hormone for art least 6 weeks previously,, and i'm not sure you have any blood tests done like that .. so most of your results are probably rather meaningless , but since you only have half a thyroid and you do have TPOab i think it is safe to assume you do need to take thyroid hormone.
So that just leaves us with what everyone has said to you in all your posts ..... you need to take same dose everyday for 6 weeks and then get blood tested.
Them we will have some useful information to go on that shows how your fT4 /fT3 levels are.
i just had a read back over your other posts.. you do seem to have a a lot of anxiety about doing yourself harm by using thyroid hormones.... some of your concerns are unfounded .. so, to correct the wrong ideas.....taking them will not give you TED, taking them will not cause you to develop hyperthyroidism, taking them will not damage any organs .
But what will harm you.... is taking a dose every few days then stopping then changing to a different form of hormone. then doubling the dose, then doing a couple of weeks on something , then changing to something else . then only having a really small dose for a few days , then doubling it , then halving it again . then having a couple of day's off.. etc etc. ( sorry if i exaggerate a bit , but this really does seem to be kind of what you're doing here , and as a consequence we don't have any reliable blood test results to begin to try to help you with)
The body is not just a passive recipient of thyroid hormones .. it is actively regulating and balancing it' response them all the time.. at a cellular level.. It needs consistency to do this.. your body can't possibly know what to expect at the moment , and hasn't been able to for a year or so by the looks of it.
Sleep problems and anxiety problems and digestive problems , and healing processes, and all other processes will all be made worse by changing thyroid hormone dose /type so frequently
The reason the HPT axis and the deiodinases exist in the first place is to constantly maintain as stable a level of T3 in the cells as possible... this is a finely balanced, extremely complex system and you will be messing it up by altering doses / type of hormone as unpredictably as you have been doing over the last year or so.
Obviously if we take too high a dose for a prolonged time we might become slightly overmedicated , but we solve this by starting on a reasonable dose ( which you have .. 50mcg Levo is perfectly safe) and testing the blood after 6 weeks.
You can't expect anything to improve until you've tried 50 for 6 weeks and then tested to see if dose need increasing.
You have to accept that it might feel worse for 6 weeks, but you still have to do it anyway.
We are not trying to make you feel better this week, or next week ..... we are trying to help you body function better so it can start to improve how you feel gradually over the next 6 months . and keep improving gradually over the next few years.
( and we can't help very effectively without blood test results that tell us the effect of a dose for 6 weeks)
Try and find a bit of faith that you are doing the right thing by giving your body a steady daily replacement of thyroid hormone that is consistent ,and it can start to get used to functioning on it, and it can expect the same again tomorrow ....and you must keep doing it to improve , even though it's really tough .
Try and ignore the thoughts that you are harming yourself by taking thyroid meds ... if you are really overmedicating yourself we'll see after 6 weeks , but that is highly unlikely, (verging on impossible) on just 50mcg .
(even if it was 'too much'.. 6 weeks won't 'hurt' you, and then you'd just reduce slightly after blood test)
I understand. I know. My body was not balanced beginning this. I'm not sleeping without a sleep pill. Too thin. Have the neuropathy going, You can't see me. I can't stand long to cook eat shower. I'm a senior, very youthful-came undone last year and doing this, now. Barely! Doing. Taking other-- medication too..Very sad, if Im not- careful?not set up to do this alone- I really, need caretaker to just cook some! lol. Can lie down but standing inside is painful.
I was told here levo causes testosterone to turn into dht for hair loss.I'm already high in dht.so my hair is gone..I need this little bit of hair to just feel-ok right now, can't do balding.
Just talking out loud...
(Very-jittery and hurting knees, tingling- ever like this.
We dont know what this is. I'm not the norm you are talking about what people normally hypo, should do here. Stick with it. What if I react very differently from normal hypos?)
I'm too in range, with any- medication I've been given this year. Puzzles doctors. Blood tests. I know people are into that here a lot.. But if I have, central hypo CH..as suggested here, my blood test don't reveal things. It's how I feel.
Ok, you say just stay on the 50: relax.
If I did, cut back, take 25. for a few days?
(That is what my doctor thinks -I am taking.) I thought 50 because of what said here.
Don't get upset. just-- taking..
If- I stop a bit.
And try an alternative. Contact a functional doctor for Armour,
But if I have, central hypo CH..as suggested here, my blood test don't reveal things.
If someone has central hypo they still need blood tests.. just means you have to ignore the TSH and use fT4 and fT3 instead .. and anyway , it's always the fT4 and fT3 that are most important to tell what's going on, regardless of central hypo being an issue or not.
If I did, cut back, take 25. for a few days?
If you prefer to do 25 as Doctor suggested that's fine , but do it for 6 weeks, don't change it around.
If- I stop a bit.
And try an alternative. Contact a functional doctor for Armour,
Wait and check out T3 seperate.
If you stop all T4 today ....you body will spend the next week or so going "WTF ?, why have i suddenly got less coming in , quick we must be in danger, raise the TSH, try and get more T4/3 out of my thyroid " .... and messing you up all over again, before you find something else to add T4 and/ or T3 to your system .. at which point your body will spend the next several weeks going "WFT ?, where's all this come from , i thought we had too little and now we seem to have loads more.. quick we must be in danger, drop the TSH really low and stop making any T4/3 at all from our own thyroid"
This is all perfectly normal, it's how it works , and left on a stable dose for several weeks it will balance itself out and stop going "WTF ? " and start to get on with other more important things instead.
Is Armour from Nov 2019 too old ?
I doubt it, but i don't know enough about NDT, or its doses.
Good . just keep on keeping on.. one day at a time, just one day at a time. "Journey of a thousand miles ....starts with one step "and all that.
Staying on 50 makes the process quicker if you can handle it...(if you only do 25 first, then you still have to do another 6 weeks on 50 ) .
You CAN Consider doing half (25)in Am and half (25)at bedtime if you don't like 50 all at once, but this is only a good idea if you can fit it in without forgetting the 2nd half , and can take it far enough away from any other medications /food etc. So probably much simpler to do 50 all in one go in either AM or PM whichever you find less of a pain to put up with.
No such thing as a 'normal thyroid patient' .. not on this forum anyway .... that's why we're all here..... they told all of us it's just one little pill and you'll all be fine .... some people are,(they're not on here lol) some have a lot more trouble and end up here... hence there being 117,000 members. Honest ....it's not just you being 'difficult'... lol (and people who've been hypo and untreated for a very long time often have the hardest time of all )
So you're doing well to keep going forwards, even though it might not feel like it for a long while yet.
I was reading this lying in bed here, at 9:20am....! Nuts. 14 months ago I was out the door. ( I hate....this)
Watch your daily stress levels. Too much stress leads to cortisol overload. Our hormones are delicately balanced...chronic stress can lead to a tipping point that throws everything out of whack, including your hair. If you are using thyroid medication but are chronically stressed, you might be doing yourself a disservice in the long run.... stress hormones play a big part in hair loss and overall hormonal imbalances. “Stress gets stuck in the body — creating an ‘always-on’ stress response. This can cause physical problems unless the trauma and stress are addressed....
Mayo recommends patients use a diurnal salivary cortisol test, “which can reveal high or low cortisol; both of which can cause hair loss....etcetc.
I did am pm ACTH, conventional tests.
I didn't do a saliva test. Or ACTH stim test with cortrsyn shot...yet. I know my stress is extremely high from what happened before...but does it matter? I dont want to take hydrocordisone then get off it.
...i'll check with pharmacist on old Armour.
I hear u
...What I didnt send you yet was:
I can do, your way lol, but, for my own peace, stay with this medication, at 50, If ok, then no problem. But if I keep deteriorating I know you said switching isn't good but it's better than getting off. So I could try Armor the remainder time before a blood test is that okay? Switch over. Armour: 15mg ,=25mcg +5mcg T3.
30Mcg is 50 plus 10mcg T3.
T3 =? How much of Levo
I could get the Armour 30mg. Pharmacist has it in stock.
I took compounded T4 with slow release T3 before. Have it here. 20/4mcg.
I also have 5mcg T3 here.
I could add, T3 SR.
But, slow release isnt really good? doesnt flood the receptors stays in gut to slow the release?
Just- talking.....k? lol trying to smile over here... I think, ahead because helps me get thru it.
You've really helped. Just talking to someone now.. people, mom, relatives can't understand this. Over years. they can't see it or hear in my voice. ("Human beings are foolish beings, they have to experience everything in order to understand it." from a movie I saw
if I keep deteriorating I know you said switching isn't good but it's better than getting off. So I could try Armor the remainder time before a blood test is that okay? Not OK. .because it would mean you'd have to do 6 weeks on Armour, or blood test would be useless.
(but yes, you're correct switching is better than getting off totally )
. Armour: 15mg ,=25mcg +5mcg T3.
30Mcg is 50 plus 10mcg T3.
T3 =? How much of Levo
Not OK . might be OK for a rough estimate ...., but just doesn't work out accurately that way when you swallow it....as before , body goes "WTF ? i thought i was making my own T3 ?, where's this come from ?, damnit, now i must lower my own T3 by much more that i did with the T4 i had last week " So results are very unpredictable when changing from just T4 to T4 + T3 in NDT or Levo plus T3.
, slow release isnt really good? doesnt flood the receptors stays in gut to slow the release?
Honestly ... i don't think anyone really knows , and if they say they do they're probably just guessing.
I think, ahead because helps me get thru it.
OK,..... if you keep thinking , "good ,that's one day closer to 6 weeks "
Not OK .....if you keep thinking "what if i get worse"
people, mom, relatives can't understand this. Over years. they can't see it or hear in my voice. ("Human beings are foolish beings, they have to experience everything in order to understand it."
Very true .. we don't know anything until we've 'walked a mile in those shoes'
I used to think people who said they had CFS/ME were making a fuss about nothin and being self indulgent .... till it happened to me .... maybe it's Karma. serves me right. lol
Got to go out now and play chauffeur to daughter...
Ps...( my gp who I don't know well, was afraid really to give me any thyroid medication and figured I might go hyper which we already discussed is not what I got but, if I have cortisol, adrenal problems I didn't test them except those am pm, tests. It could be why I have these burning and tingling symptoms pushing a body with adrenal problems) just a side thought..
Hi T, I'm on NDT now. 8 days. Had to switch to something last Sat.. Had some older Ar mour.. Doing good on it from day one. Had an old perscription but got a new prescription, 5th day.
Getting Hot burning feeling again in mouth and sore eyes last night after 8 days. I'm on lowest dose. Do I need 30? don't know if these are signs of being under medicated or I'm overmedicated right now. Or intolerance.
Also feel stomach ache and a bit head achy but slept 4 1/2-5 hrs. (Thats a good thing for me. Using sleep medication.) Its 6am
I had this with Levoxyl T4 only and you replied.
Have been doing better on NDT the T4 I took 16 days.
Afraid i'm not very good on understanding the doses/measurements for NDT, so i don't even know if '30' is a lot or not. But my previous advice still stands... if you want to be able to make progression and understand 'where you were' on a dose ,and therefore 'where you are' on a different dose , a big part of that is having blood test results to look at as part of the picture.
And unless you take the same dose (of anything) for 6 weeks and then test the blood, you have no information to go off... which will just leave you floundering around trying to make sense of how you feel without any idea of whether you have loads of T4 or loads of T3 or very little of either or both.
Blood tests aren't everything , but without any at all (that are reliable ie taken after 6 weeks) it's very hard to know what's actually happening.
I'm pleased you feel a little better
.... my gut feeling is that NDT is quite likely to be better and 'softer ' for many people, and if they then get bloods done they can see if possibly they 'd like to try adding a little T4 or T3 to the NDT to get the proportions of T4:T3 to be different to hopefully suit them better.
My other observation is that if the burning mouth symptom keeps re-appearing no matter what form of thyroid replacement you try, then it can't possibly be anything to do with any particular brand or filler.
So i don't know what to suggest about that....edit* i've never seen anybody here refer to burning mouth as being a sign of either over or under-medication.
I wrote an update- post. Didn't include my blood numbers, did say I switched to Armour, lol, confusing-- I know. Just to see if anyone says something about the dry eyes and sore mouth.I didn't message you but after 16 days on levoxylT4, I was so bad I just couldn't stand it and had to stop Friday. I debated using some old Armour I had tried December 2019 but checked with the pharmacist and went ahead started that Sat. weekend before. I felt better, immediately, I feel more comfortable taking NDT now than I ever did on just-T4, it was my first choice back when I was sleeping in October 2019 and self-tried it for my Hashimoto's symptoms but wasn't quite sold yet on taking any- thyroid medication, being I was very in range, not knowing then what I know now. I was just using diet and eliminating foods.
This burning, dry eyes, mouth gets me. I chewed the tablet it made it start working faster. I noticed it took 9 hours to start feeling it with the new Ar mour prescription the older prescription tabs I had, worked faster? That's weird I wonder if this medication batch is not good. Sounds like it happened to others.
If you delete this post - all the responses disappear. All the effort that responders put in would be wasted, other than for you today, as they would be unavailable for anyone in the future to find.
it's usually unhelpful if people delete whole posts.. we loose their history... and all the responses that the next person along the same route might have found helpful. If you want it to 'go dormant' then just don't add any further comment to this one and it will go down the list and get ignored, but the information will still be available for other to read , or for you to come back to if you want to remember something that was said.
As for the "is the new armour a dodgy batch " question... i'm going to sound like a stuck record .. but you can't possibly tell if one batch is different from another until you had been on a stable dose of it for long enough to know how your blood results usually look on it , and how you usually feel on it when settled.... so ...same dose... 6 weeks... then test blood ... then decide what to do next.
'Rules' might be a bit different for NDT, but as i said i'm not very used to NDT doses so i don't know if whatever dose of NDT you are taking this week is the right one to stay on for 6 weeks... you should start a new post and the people who understand NDT better than i do will comment...
....but they will still all say basically the same thing a greygoose and i have said repeatedly ... you are chopping and changing far too often and not allowing enough time on any dose of anything to know where you are. And you haven't yet got any blood test result that are helpful in giving you advice about what to do next.
If you currently feel a bit better than you did on the Levo. i suggest you leave things alone for a while and wait to get a blood test once you've been on it for 6 weeks.
Yes ... it's awful having to wait etc .. but how long have you already spent not knowing what to do.. if you wait then you will have some blood results and people can help you much better with what to do next. It will hopefully feel like a road to somewhere instead of just going round in circles.
Yes, I was-changing. And I was trying to stick to the T4 which ended up making me god-awful w/o having sleep, too. I could not function, get food, do-anything necessary. The day I switched that changed pretty dramatically, and I feel more reassured being on a whole T4T3/ T2, T1?calcitonin, etc. form thats not the synthetic form. If this doesn't work I don't have choices left because even T3 only is the synthetic. So I'm handling for this one to work and want to stay on it. I just know the starting dose is 30 mg and I'm doing 15 which Grey Goose said is good to let my body come down. I just got these burning mouth/eye reactions again, and will see what happens.
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