I have been taking 2.75 grains of Armour with 6.25 mcg Levo and after 6 weeks my final results are:
Ft4 = 41%
Ft3 = 69%
Symptoms: tiredness, slow pulse with some palps, puffy face, cold and then going hot sometimes, but more cold in general, a bit anxious, trouble falling asleep asleep then fatigue late morning early afternoon.
My results have been higher previously, but I was taking more levo instead and it wasn't making me feel well.
Started to feel like myself when reduced Levo from 12.5 to 6.25 and upped Armour from 2.6 to 2.75 grains, was more energetic, had issues sleeping still, but after 4-5 week after dose change I feel I am getting worse.
The last few weeks I was very lucky to have bloods done weekly to see how the fluctuate after a dose change and my ft4 was going from 37% to 42% to 46% to now 41% (as per Friday 3 days ago) and ft3 was going from 77% to 69% to 75% to 69% now.
Would welcome any advice, but I feel like I'm due a dose increase.
Quick recap from the last post, vitamins optimal apart from slightly lower iron, which I'm working on. My cholesterol is still high at 270 (range up to 190).
Thank you!
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Thats a shame....lol. Doesnt work for everyone. The ndts, apart from Armour have become a bit inconsistent which is such a shame. Erfa is on the NHS list. Didnt suit me but it suits other. I like Acella NP but thats gone now..I think for you you are probably varying in your antibodies so that might be influencing your levels & how you feel. Its really not easy when this happens as you are in a constant balancing act...you could try decreasing Armour a tadge & increasing levo. I can see you've tried Armour on its own & that didn't work. Sorry not much help!
That's it, I know it works for some, unfortunately not for me 😔
I'm in Ireland, I get Armour on private prescription and Irish NHS refund some of it currently.
I have tried Armour on its own years ago and was doing well, then moved to Naturethroid. So when I moved back to Armour about 19 months ago, I have moved to 3 grains straight from synthetic levo/lio (dose I used to be on in the past), but maybe I still had synthetic t4 and t3 in my blood as I wasn't feeling well and after 2 weeks decreased Armour to 2.75 and then again to 2.5 after another 2 weeks. Maybe I didn't give it enough time.
Adding synthetic t4 to Armour doesn't make me feel good, worked up to 15.6 Levo and 2.5 (and also 2.375) Armour and had to stop, the fatigue was awful, was bloated and was feeling down and irritated labwork was the same as now strangely!
Sounds horrid. I think everyone responds differently to different ndts. I didnt do well on Armour after they changed their formula & went on a different one but ended back up on it as the ndt I was on was withdrawn from the NHS & there really wasn't much to choose from...lol. . It took my body a few months to adjust to it. I dont know why but am doing fine on it now. The only other thing to consider is the fillers - are any of them a problem for you?
Very interesting, may I ask what your dose of Armour is? That's great to hear you're doing well on it! I'm all good with fillers, experimented with different levo brands, same effect
Not sure you have tried Levo, but when I take more Armour than Levo I do feel more like myself. I don't think my labwork looks like I'm overmedicated either.
Im on 3 3/4 grains of Armour. Been on ndt for over 10yrs. My thyroid has totally failed so am very stable......need tadge more in cold sustaining weather and a tadge less when we have a long heatwave. I started off with levo and then eventually they added T3 in.....levo didnt help no matter how high and the T3 when added in gave me spikes of feeling hyper then drop low despite splitting it up. Armour made me feel normal, level. Never had to add levo or liothronine in.
I think if you only tried for a couple of weeks you may have given up too quickly.......but its hard especially when you feel rubbish!!! But might be worth trying again? I introduced ndt slowly as was under Peatfield at the time. His plan was actually too slow for me so sped it up more. As I recollect was off levo for a week then started on a starter dose and built up. I think I didnt need to start so low, just a lower dose.
I was like you with synthetic t4 and t3, didn't help with anything. Felt very uneven on them for 18 months.I think you're right, might try again. I am very close, taking 2.75 grains and 6.25 Levo. I need to try, and if it doesn't work, then at least I will know! Might try 3 grains and drop Levo altogether.
I know what you mean, sometimes slower doesn't mean better and your body needs hormones. Am I right reading that you were unwell for a long time, on NDT?
May I ask you one more question, if you don't mind, this has been really helpful. Where do you need yours ft3 ft4 on Armour to feel well, if you track it? Do you take it all in one go (I do, I can't split, feel unwell)?
No worries if it helps happy to share. I take my ndt first thing all together. Ndt made me better. I was left not diagnosed with hypothyroidism for several years, given ME label instead. I improved a bit on levo but felt poorly on the synthetics. When I went on Armour first time it was fab I just improved out of all recognition. It was brill. Then Armour changed their formula & I declined so switched to Erfa & again felt very well, then Erfa changed factories/country & I declined on their product so switched to Acella felt amazing for a couple of years then Acella had problems with consistency so I was all over the place so back to Armour....& took a while but am fine this time. I'm on b12 jabs & they seemed to have helped with uptake of my thyroid meds.
So its definately a journey but one worth persevering on!
Meant to add that my Ft4 & Ft3 needs to be near the top of the ranges to feel well. Everyones different though.
Wavelines, thank you for sharing! I was diagnosed as CFS at some point, but they quickly added is because of low t3. Oh right, pernicious anaemia? Sounds about right, my ft3 ft4 were high before and I was okay. Hopefully I can get there! Currently I'm going from cold to hot, get headaches and dizzy in the evening, also bloated right now, at 6 weeks+ now. I'm either going to wait until bloods at 8 weeks or remove Levo and add Armour.
Its a difficult one. As a general rule its best not to keep changing doses inbeteeen the 6-8weeks as the body needs time to adjust. So changing doses frequently just causes even more upset in the system which can take longer to settle as a result..... But if you feel terrible on your new regime & thats not changing then something is wrong. I know people do add levo into the mix with their ndt but I havent because I was ill on levo. Maybe I was just plain lucky that a ndt on its own was the best for me. Keep a careful daily diary of temp pulse rate 1st thing, all that you take including vits mins plus sign symptoms.plus add blood test results in ....in time a pattern does emerge. It helped me spot what dose was best fit as at one point I definately over egged it. B12 jabs & gluten free were the things that helped me to break through to feeling well. Its sooo frustrating though as its definately a slow process.
I might wait until 8 weeks and see, but something doesn't feel right. Adding Levo was doing something, but not enough and it felt too harsh. I think a lot of people are also good on NDT only (I also used to be), but some add t4 or t3.I am starting to see a pattern for sure! My temps have dipped to 36.3 in the evening and morning.
I will do my best to wait another 12 days. It's annoying, because it sometimes affects my job, but like you said, I don't want to upset the system and it seems I'm hitting bad symptoms always at around 6 weeks or thereabouts.
This could be the case, you might be right. Managed to get a blood test on Monday, I hope to see something substantial in results after almost 7 weeks!
When did you start feeling better on increased dose of Armour? I think you said you are feeling well the last 5 months?
It took me about three months to adjust.....I nearly gave up on Armoyr as felt under treated skin went dry....but when I went a tadge higher bloods showed over range. So had to be patient and lower. Stick with it. You will find that sweet point in the end. Xx
Thank you waveylines, I am persevering 💪 patience is the key and noticing patterns. I think I'll get there! Bloods on Monday 😀xxx grateful for the chat, thank you
Hey Waveylines, hope you're doing well. I had blood results at circa 7 weeks this Monday now and was surprised with results (both went up):
TSH = 0.01
Ft4 = 18.5 (12-22) 65%
Ft3 = 6.1 (3.1- 6.8) 81%
I was feeling energetic enough, feeling less hot, still sleeping issues, last night fell asleep okay, but woke up at 5 am, tossing turning. Started to feel quite tired this week and I'm wondering if this is either due to ft4 or ft3 running higher? My face is puffy again, I feel dry today and demotivated. I am at 7 weeks, so not sure I should wait another few weeks to stabilise. Also mid cycle now, normally feel more tired around this time.
I must admit your results look marvelous! Do you keep a track of them with signs symptoms temp puslse? Could be worth looking back over them? What you are looking for is a level where you felt good.....have you ever hit that? Ive not heard of high T3 causing puffiness but am no expert on it! Certainly isnt the case for me.....mine would be a higher temp, fast pulse, sweating, shaking, loose bowels.. Secondly the puffiness might be worth checking on re allegies.....just a thought. We blame everything on thyroid. The other thing is when we feel well we start doing a lot more and then crash afterwards.....this might not be you.....I certainly did it. As you become more stable this happens less but at the end of the day there is finite amount going in so if your body demands more it may not be always there. A certain renowned specialist (can't name) said he used to take a bit extra on busy days!! Made me smile!!
Thank you😀my pulse is fine (unless I had a coffee), temps normal, 36.5-36.6. Temp was higher when on more t4.
The time I felt good my doctor wasn't checking my bloods, that was years ago😐but, I was okay with slightly lower numbers recently and slept better.
I think that maybe the addition of 6.25 levo to 2.75 grains of NDT could be causing something? Also, I have definitely overdone it yesterday, worked from 8:30 til 6, and went to see neighbour, landed home at 9 pm exhausted, no food since late lunch . Woke up at 5 am this morning. I felt a real hypo fatigue this morning, was reading words on the screen and none of it was sinking in.
I am not sure if allergies, because when I get puffy face it's when my thyroid gets bigger and chokes me, it's pretty consistent.
I spoke very briefly with a thyroid advocate few weeks ago, she said that thyroid swelling and feeling hot is one of symptoms of overdose. I do feel a bit shaky and quite hungry today. Will need to keep an eye on it. It maybe worth to wait another week and see what happens. I can always remove the last bit of Levo from the dose, that would bring my ft4 down and ft3 a tiny bit.
If you had a connection with puffiness and being a bit over cooked then that will be it. Hypothyroidism is the great mimicker.......so your right its good to know your triggers. So your Ft3 is perhaps a bit high for you so you know maybe you need to lower the ndt just a tadge rather than the levothyroxine. Only a suggestion as Im not a medic! But if you lower the levo your ft4 will drop further but maybe not ft3 :the ratio of t3to t4will be higher if you reduce levo and you may still feel a bit over cooked. Dont know if that makes sense? You sound like you are close so if it were me Id tweak the ndt down....but only a little. Then see how you are. Ive never had to combine ndt with levo myself so only my thoughts. Only altered one thing though or it will be confusing.
Oh and I meant to say I made a few wrong turns in my travels to find the sweet spot for me. So if reducing the ndt doesnt have the desired effect you would go back to where you were before, wait, then consider reducing the levo instead. What you are looking for is the pathway where you feel a bit better on that one change which tells you to carry on down that pathway. At some point you will overshoot and go to far either up or down but then you step back again to previous step. Thats why small changes are best when you are close. This is also why its so time consuming because some of it really is trial and error.
You are right, I don't want labwork to be lopsided. At the same time I tried the option with less NDT and my ft4 nosedives with it too so weird. I might give it another week to be at 8 weeks and see what happens? I will alter only one thing, otherwise it will be impossible to know what's what. I feel like I'm getting closer, but then some days I feel I'm miles away, a bit like when you described when you almost ditched Armour and then it got better. Thank you 🤗
Changes are usually every 6-8 weeks so really if you feel you want to make a change then go for it.....you have waited long enough. So if you nose dive before lowering the ndt is it the amount you reduced (too much) or is it reduciing the ndt? Honestly this bit is trial and error so go with your guts on this one. We are guessing really so if your guts says hmmm its the levo try tweaking it down a tadge as you planned - worse case is you end up putting it back up. The blood nimbers are a guide but really when you are fine tuning they may not help beyond being at a reasonable level. To give you an example I ended up reducing my Armour by a quarter of a tablet....feel far better now. I was a bit over. Initially I tried alternating between half and quarter (gives me an eighth) that felt too much still so went down to quarter daily. So now on 3 3/4 grains. Perfect. This because Id had to switch to a different ndt.
Sorry for the delay in replying, had my booster the other day and I was not feeling well, had a good few side effects.For some reason my ft4 was lower on more Levo and less NDT, ft3 was a tad higher than now.
It's hard to know, but I will try one thing at a time.
That's interesting, I go up and down by 1/8 of NDT.
Thus is true re numbers. They are just numbers and sometimes completely don't correlate with symptoms.
I have noticed that my skin got a bit oily and spotty, my hair as well, could be a sign of being a bit over.
Sorry to hear that. If you go up a lot or down the same by adjusting just an eighth of one grain.....you could try spacing out the tiny part of the dose even further -you have plenty of T3.
Id also check that you are doing eveything optimally.....simple things like taking your thyroid meds on an empty tummy and eating nothing for an hour only drinking water in that period. Check that you are not taking any contrary indicated meds.....surprising how often this is the culpret. ive had that happened to me twice by well meaning consultants who insist its not the meds they are prescribing but later on it turns out it is that med! Makes me soooo angry! Check your vits and minerals not just the levels but whats in the tablets, check your adrenals, female hormones.....they are all affected by low thyroid and vice versus...... check your food is there any hidden soya, extra iodine etc check how you are storing your thyroid meds/expiry date. Have you tried crushing the Armour in your mouth.....so,e swaer a bit of sugar helps them with uptake etc.... Log it all down.
So do your tweaks but go back to basics and just make sure you have ALL your ducks in a row...... Theres always a good reason why when we are struggling to balance our thyroid meds it justs finding it!! Lol....
Thank you waveylines, you're right, I'll be checking my female hormones and adrenals in a few weeks time.I don't take any other meds, but I take vits spaced away from thyroid meds and from each other, not eating anything after taking hormones for about an hour, coffee only in the afternoon.
I have done one more set of bloods yesterday, which is exactly at 8 weeks of changed dose and was so surprised!
Tsh as usual, less than 0.01
Ft4 20.6 (12-22) 86%
Ft3 6.9 (3.1-6.8) 103%
I'm feeling...fine I started to sleep okay about a week ago, have energy, can tolerate a cup of coffee, relatively good mood, no stomach issues. I do feel my hair and face are a bit oily at times, I feel a tad too warm at night sometimes, but it's not as bad as it used to be, and sometimes my neck feels a bit swollen and my face swells up with it too, started to get slight tingling, which could mean slight overdose for me as well.
Hi there....glad you are feeling better. Yes your ft3 test result shows you're slightly over cooked. And your ft4 is very good. Dont think you need an increase. I wonder - do you have hashi? Am wondering if you are experiencing swings hence the need to keep altering the dose....just a thought.
Thanks so much x definitely no increase needed, only a slight decrease maybe? No palps so far, sleep on and off, my neck doesn't seem too swollen now, seems like a lot has improved. I have a few lingering symptoms - sleep could be better/consistent, sometimes I'm a bit too warm, but it's not too bad, better than before, I got back this hormonal pain in my breast before my period , had it before on and off. Maybe I'm still fluctuating a bit and you could be right. I also get the energy dip around 11-12 pm. Something tells me to wait, I'm 9 weeks on this dose, I can get tested in 3 weeks, that should give me a good idea at 12 weeks. I have to admit that I haven't been on one dose for 9 weeks+ in 4 years...it was unbearable, but now I see some hope
Its a difficult one. Ive not been in your position as my thyroid just slowly declined. I wonder if doing the antibody tests alongside the TSH, Ft3 & Ft4 would give you more of am idea that what you are experiencing are flare ups, hence the need to vary the dose as much. I know this would be an additional expense as the nhs wont do the antibody tests repeatedly. Others on here may comment on this. I know some of them report reducing temporarily or stopping thyroid hormones meds temporarily whilst the flare up settles. A flare up would result in extra thyroid hormones being released into your system, which may result in symptoms of feeling over cooked for a little while. Ultimately though these flare ups reduce the functionality of the thyroid causing it to decline but in that process a bumpy ride of up and down levels occur. Does this sound like you?
The thyroid, adrenals and female hormones are in a loop system so one being out of kilter may affect the others in the system. So if its your thyoid going out of whack with its burst of extra thyroid horonoes it mayaffect the others in the loop system.....l was told this once by a doctor specialising in female hormones. She did research into this. Sorry am not very scientific.
That's the strange part, antibodies stay more less the same each time, I have checked them over a month ago (I do all tests privately, based in Ireland). I think my hormones have finally built up maybe? I think it's wise to wait and see if anything changes and test antibody levels again in about 3 weeks time to assess.
I think my symptoms have mainly lessened.
I think you're right, also will be checking adrenals and female hormones in a few weeks, will buy a few packages. I have heard the same, they are in balance with each other. You are very helpful, thank you, it's very nice to chat with you!
Yes but what the researcher doc said is if you intervene at any point in the circuit it will balance the other parts.....not sure I completely agree with her on that one! In addition to the thyroid meds I did need a bit of adrenal support short term but reduced & stopped it after a year. (not steroids but glandular). I think that was mainly cos my adrenals were a bit stressed as they'd been picking the flack up from my failing thyroid for some years. Yes your thyroid hormones have built up but your body may not have caught up. The body is a funny old thing. Medics are encouraged to think you are 'a' (diagnosis) + 'b' ( levothyroxine)= 'c' ( back to good health) but its really not as simple as that as you know only too well!
Am sorry I dont have the knowledge as to why your antibodies are always at the same level but sometimes you feel fine & others you don't despite thyroid levels remaining at an optimal level.
This is true, I really need to check female hormones and adrenals to have a full view.
Heard of adrenal support, may I ask what you used? I take reishi cordyceps mushroom extract and ginseng 2000mg, I feel it helps me with energy and feeling calm.
That's it,I have heard that sometimes it take 6 months+ to feel full effects of the dose you take.
I think I was feeling bad because my ft3 remained below midrange for most of the time and only the last month it has jumped much higher and it feels I'm more stable now.
Will monitor the situation for now, if I start to get a lot of overdose symptoms and if they are more frequent, I will drop the dose slightly. I have never allowed the dose to build up, was always changing doses after 4-6 weeks, which was very exhausting and I believe now that my body didn't get a chance to get used to any of them.
I think it was Slow Dragon who replied on a post elsewhere recently that antibodies can shoot up and down very quickly even within an hour! people feel better on a supressed TSH and many on gluten free. healthunlocked.com/thyroidu...
Maybe they can, but we won't be able to measure it if it's so fast, my TSH has been suppressed for many years. Fingers crossed I just need little tweaking down if needed
I am posting again a I had my bloods done at 11 weeks of this dose and I start to see a pattern here.
Tsh= no longer below 0.01, now it's at 0.01 so it went up a little since ft4 dropped
Ft4= 58% (dropped from 85%!)
Ft3= 95% (dropped from 103%)
My symptoms are slowly creeping back in again - started with bloating around 10 days ago, then dry skin, now my mouth, skin an hair are dry, first time in 2 months I got irritated badly, joints are hurting and I have slow pulse with palps, fatigue is increasing slowly.
My labwork and observations tell me that my ft4 around 50% is too low for me.
It seems that it took about 10-11 weeks for numbers to decline again.
I'm doing the last test on this dose in 6 days, at 12 weeks exactly, to see if ft3 fell further following the decline of ft4. Without checking I am sensing this is what happening.
Hello Incognito. I sm fine thsnks. You haven't written what the actual results are but its most important that you look at them alongside your symptoms and signs. It sounds like you are learning to pick these up as indicators which is good. Based on percentages you could try a little tweak upwards of your ndt. This might pish yout ft3 too high. Alternatively you could try adding a little T4 in with some levothyroxine. Im not a medic though so these are only my thoughts.
Oh thats good! 😊 Your ft3 is near the top of the range. If it were me Id do a small tweak with the Levo. Looks like you are getting close to optimal dose for you. If you've optimised all the other vits minerals recommended on here hopefully you will feel well. It all takes sooooooo much time doesnt it. Fingers crossed for you.
Thank you so much, hopefully will get there soon 😀I was convinced that I was overdosed with feeling too hot, but it seems my temps are low normal, and it all improves when my level are higher. This illness is so strange!!!
It is indeed! A wise knowing doc told me dont ever go on whether you feel hot or cold - check with a thermometer. You can actually have a low temp when you feel boiling! Fingers crossed you're nearly there. You may still swing though as your antibodies carry on their damaging work....lol. really hard stage. Easier when its dead as a duck as mine is.....
100% correct! I have read something really interesting in Korean research study, that two female cases were experiencing cold extremities with hot head neck and insomnia and they were severely hypo.
I want my thyroid to be dead lol😀You are 100% right, many times I have been boiling and my temp was 36.1, then several times normal and temp 37.8, go figure...and the best part - add ovulation to it, that always raises my temps
Absolutely. So probable best to avoid the ovulation bit for temp guide and go on the other temps. Its why you take it daily so you can see an overall pattern. Mine kept hovering at around 36.2-4C. Once on my regular b12 injections shot up to 36.7C and was far more consistent & stayed there. It was the b12 that did this not any extra ndt. So the co factors are incredibly important.
That's it, I'm due to check b12, d, iron, folate etc, but end of December b12 was almost top range, D improved a lot too as I doubled my dose, folate was excellent (but I take quatrefolic), iron was a bit low. I start to think that the covid booster jab elevated my ft4 and ft3 for a few weeks, this is when I felt the best.
Now back to feeling cold, bloated, dry and sleepless with palps lol
I get all tests done on Sat, including estrogen progesterone etc. Fingers crossed, just need to survive 4 more days😀
Hang in there.....there will be a solution. My b12 was fine, then dropped 500s so took b12 supplements....seemed to improve then after a few years dropped further to 200s felt terrible. Was told by a doctor supplements won't resolve such a low score so B12 jabs........and wow after a few weeks I just kept improving. Just wish I resorted to jabs earlier. Hey ho! Thing is for someone else it will be something else. So you just have to pick them off one by one! Lol.... I found the temperature 1st thing & pulse rate a useful extra.
Oh wow, good you kept an eye on that b12! Yeah I normally have more issues with iron than b12 so need to check it again!I will check my temp tomorrow first thing, because I had 36.9 late afternoon, but also after ovulation my temp goes up quite a bit.
Thank you, this is encouraging x I have to keep going and hopefully will get there
On your chart of temps/ pulse mark on ovulation so you can see the temp difference. Id ignore those days if it were me. Low iron hasn't been a prob for me but I think low iron also has a knock on effect on thyroid hormones....might be wrong on this so hopefully one of the others will pop on and comment. I dont know eg if low iron affects body temperature.... Sorry not much use to you. Perhaps Slowdragon or Helvella or Seaside Suzie can give you more info on effects of low iron & hypothyroidism. Now I've mentioned their names they should be notified. 😊
Hello I have a new set of bloods, I'm probably about 14 weeks into this. I had so many different tests and I am overall delighted.Iron has gone from very low in range to 70% of range, ferritin went up a bit too, vit D is finally high in range, folate mid range, cholesterol a little bit down, but the most satysfying was to see estrogen, progesterone, testosterone, shbg in ranges and not low. Glucose is excellent, even though I had a couple of donuts late at night as I was travelling that night (I don't eat sweet in general).
The only issue is with my thyroid labwork again:
Ft3 dropped to 79% from 100%
Ft4 dropped to 50% from 85%
My antibodies are a bit up and I feel mainly hypo, with hot sweats, puffiness, tiredness etc.
I think this week I will be finally increasing my dose .
I know I still have a bit to go, but I'm happy my other numbers are improving
Been following your journey and I'm wondering if you could share what med tweaks you made to get to the above results? Also since you're planning on increasing your meds can you share by how much?
Well it's been a long journey, but I only ever tweak by 1/8 of Armour. My last change was almost 4 months ago, while I reduced Levo to 6.25 from 12.5 and increased Armour from 2.625 to 2.75. I am thinking of going up by another 1/8, see how it goes, drop Levo if too much, possibly try to get back to 3 grains of Armour if it's not too much. Hard to say really, it all depends
Thanks for responding. Do you take your levo with your armour at the same time or do you space the two out? As for armour, do you do multiple dosing? Can you share your dosing cycle along with when you eat and take vitamins/minerals?
Same time first thing, all at once.I take liquid omega3 and vit C 1 hour after thyroid meds, then Floravital iron + vits and Solgar B12 at lunch, in the evening I take my vitamin D and sometimes folate.
Its amazing how uniquely wired our bodies are because I couldn't tolerate it in one go. Hopefully its temporary and day I will be able to God willingly since it's more convenient. Thank you for sharing your regimen, it's much appreciated.
That's it, I was splitting it and was feeling so awful and for 18 months I didn't know what was going wrong me. It turned out splitting was causing many fluctuations. I'm still not where I should be, but it's better.I hope you will get there soon, hang in there!!!
Sounds like you are ready for an increase. The body takes time to wake up fully so you can seem fine for a while but then as you do more the demand increases..This might be another factor. So I'd put it up a little bit if it were me.
I think I am yes. I ran one more set of bloods, as my doctor wanted me to check estrogen and progesterone etc on the 3rd day of my cycle as well and all is fine on that front thankfully. Ft3 went up to 87%, ft4 is down to 39%. So weird. Seems like my ft4 is definitely trajecting down, while ft3 is just unpredictable. Have big issues falling asleep again will I ever get it right
Yes Ft3 fluctuates a lot so isn't as reliable - it can vary according to time of day, how well your are, how much activity, stress levels etc. This is because the body converts what it needs & this changes a lot during the course of the day; so if you have a higher need then it will convert more. Your ft4 dropping though is a clear sign you do need more.
This is really encouraging, thank you waveylines. I went to the blood test after only 5 hours of sleep (as I can't sleep again).
It does makes sense that the ft3 went up then.
I have increase Armour a bit today.
Unfortunately I don't feel well when I increase synthetic t4 for some reason so first trying that and if all fails then will need to see what I can do with additional levo.
It's interesting, my friend had a similar situation many years ago, her ft4 was low, her ft3 high and she was so hypo, couldn't sleep etc. Then she added more (levo in her case) and it all levelled (her ft3 didn't go over range) and she feels much better and lost weight. So weird
Its difficult to know for sure, thats why at the stage your at its best to make little tweaks. For me B12 was the culprit & once I gave up on b12 tablets (even very high dose ones!) & went onto jabs....it was a game changer. So I've had to reduce my ndt dose twice since then! So there will be something like that 4 u too. Maybe for you its iron or ferritin or folate. The question you have to ask your self is do you put the levo up or Armour? I think that IS trial & error. This is where your daily records help out....keep logging it all down. Try a little increase of one of them, keep daily logs. After a while if that isn't right then you reduce back and try the other option. Tests help but its how you feel & symptoms that give the big clue at this stage. Thats been my approach. So yes keep testing but use the results to compare with your log of signs symptoms, temp pulse & meds/vits taken & their levels. Eg your Ft3 was high AND you say you are struggling to sleep.....so maybe you don't need more T3 as per in ndt. And you've said before that when your puffy for you its a sign of being overcooked.
It sounds a bit like that you are caught in a never ending circle of going up & down in thyroid meds. Now that could be the Hashi causing this variation as each attack on the thyroid causes a temporary surge of extra thyroid hormonesto be released.....this then settles back down but your thyroid copes less well after each attack. Does this sound like you?
If so you have to factor that in. Recognise that you do need the meds before that rush but there might be times when you need to temporary reduce whilst this surge lasts then back to the dose you were on. So it not linear but more 3D as different factors kick in and out throwing you out.
My iron is high in range now (miracle), ferritin is much better, but still needs to go up a bit. That's it, for some reason l feel that synthetic levo doesn't suit me when I add it to Armour, I feel irritated, depressed, bloated. I take the same amount of t4 in modlre Armour + less Levo and previous less Armour + more Levo dose and lots of my hypo symptoms have resolved, but the issue sleeping and feeling hot at night is persisting🤷♀️
However, if I can't get Armour right with low ft4 and synthetic t4 is unsuitable, then I don't have any other choice bit tough to accept, but this could be the truth.
Maybe I do believe tests too much, in the end, it's the wellbeing that needs to be restored, regardless of results.
I haven't changed my dose since end of November, so thankfully no frequent changes were made
I don't think it's Hashis flares, the symptoms are very consistent and labwork is back to where it was in Dec and Jan. If I drop Armour and add Levo, I can sleep for a couple of weeks and then I get more hypo.
For sure I can say one thing to be completely honest. I have upped Armour today by a tiny amount and all day I'm warm, got a headache etc.
I used to take 3 or even 4 grains of Armour before and I was fine. So not sure sometimes what is going on.
Hmm I did wonder if that would happen to you. Its a real shame that adding the levo in doesn't work. Having said that its one day so too early to say......you need to trial it for while tbh. Feeling warm is unreliable. Take your temp & pulse first thing in the morning before you get out of bed & log it. Far more reliable.
I do understand. I used to get so frustrated by it all. Thing is blood tests measure whats in the blood, not the cells so of course you don't know it there's a problem at that point.
Great news about the iron. You must be doing something right! 🤗🤗 Keep going. Trial it for a while. Your body needs time to adjust.
Thank you 🤗A little update, day 5 after increase, feeling agitated and much hotter, temp this morning was 36.7-36.8, now 37 (however, when I check my ear temp, it's 37.5), pulse 72. Still can't sleep. I added 1/8 grain of Armour, but left Levo where it was. My neck starts to swell and is sore few days in.
Thank you 😀 was very happy to see iron increasing nicely!
Its the temperature first thing before rising you count. Both are fine at the mo. Intriguing your sense of agitation....though you can have that when undertteated as well as over. Do you have any other symptoms that might indicate over treating....eg sweating when resting, loose stools, shaking?
I am sweating at rest a bit (my feet, hands), nervoussness, short temper, first two days had headaches. These only appeared after a dose increase, along with more tiredness, but still inability to sleep (my sleep has been steadily getting worse the last few weeks, but yesterday felt pretty bad). The ear thermoter was showing 37.2-3 first thing in the morning (while forehead temp was 36.7-8).
No loose stools, the opposite.
Edit: actually I have just read that in-ear temp is normally higher by 0.6 degrees in comparison to forehead, so all good.
Hey waveylines, hope you're having a lovely weekend!I am adding an update to my long post! Yesterday I started to feel really unwell ( heavy, dizzy, energy crashes etc.), went for bloods today and got my results this evening and it's what I think it was
Ft4 = 42%
Ft3 = 113%.....
This after tweaking Armour up by 1/8 grain.
Reduced already by tiny bit after testing and I feel slightly better.
I was on a previous dose for 3.5 months and was getting worse towards the end.
Now my options are: get rid off last bit of Levo and see what happens or add Levo, reduce Armour (but I have been there, done that and never felt well on synthetics).
I really hope this is not the end and thats how it's going to be, but lost a bit of hope tonight.
Can you actually post the results with ranges? Percentages are useful but you need the actual results too. If you've overshot you do need to reduce your right but need to see results. x
I'm on a course today so won't be able to answer till this evening.
I have reduced Armour a bit and I shake less, can see better, have less palps etc. Need to figure it out, but for now it's manageable :)Oh no worries, no rush, I just want to keep all info in one thread
Edit: this afternoon I'm really dizzy again, had to lay down. I am definitely still over range, I take a bit less Armour, but haven't gone back to my previous dose where ft3 was 87%, I'd imagine my ft3 is now around 100%...
Oh dear yes you are over range. On the occasion I've gone over I stopped taking thyroid meds for a little while. With it being your ft3 overcooked, that will lower more quickly than ft4 so if it were me I'd do a days gap, maybe two. You need less. Not everyone suits ndt on its own. Some people do need levo added in. Have you ever had ndt on its own?
The other thing is to focus less on percentages. The goal is to find your sweet spot where you feel well. And that is individual. Some people like me need my ft3 near the top but for others its lower and they feel best when their ft4 is just over two-thirds through range. Going over is not terrible as it teaches you those symptoms for you that you get when too high. Keep a note of them.
As far as options are concerned. You could try no levo and see how Ndt on its own works but you don't need more ndt as any more gives you too much T3. So change one thing & that would be lowering your levo. I think for you on ndt keeping your ft3 in range inevitable will mean a lower ft4 but if you feel fine like that then thats your individual need. But give your body a couple of days to settle down before restarting. Hope you're keeping a record of all of this?
Thank you waveylines🤗 I see improvements everyday now, on a reduced dose (today I took the previous dose I was on for 3.5 months). You're right, I will settle for a few days and then try removing levo. I used to take NDT on its own for about 3 years, between 2-4 grains. But then something went wrong at 3 grains. Now I see with my results that I wouldn't be able to take 3 grains, I would go really overrange like before.
Adding Levo is problematic, I don't feel well adding it, ways have so many issues with it, which is a real shame!
I am jotting down all symptoms, I already had a feeling I was over as I get the same symptoms each time (dry skin, feeling "drunk", dizzy, tired, irritated, sore right calf - so weird).
So demotivated with this, but have to keep going 😊 thank you so much as always!
Awww I feel for you. But too much of a good thing does make you ill....lol. If you were OK on ndt before then its worth trying again. But yes let your body settle first. How much levo are you on? Xx
Aw thanks🤗 it certainly does, quite the opposite effect! Lol
I was, I will first settle back on this dose and see when to try next step. Will know within 2 weeks if reducing levo while on Armour only is not right and again, too much and overmedicates me.
I'm only on 6.25 mcg...I know, miniscule, but makes a huge difference. My body is so weird!
Hmmm and you've only gone down by an 1/8th of a 1 grain tablet? You clearly were over range.....I would've stopped my meds for a day or too first tbh. What's your temp pulse first thing doing?
My results went by 26% up after adding it. Crazy, but it always has been this way.Pulse is fine, between 68-74, temps hard to say after ovulation, but not high, 36.8.
Now back on the previous dose I was on for 3.5 months and it doesn't feel good, back to symptoms I had before increase pretty much. Feeling quite cold this evening, but my hands are warm and neck. Ah this disease!
Feeling cold - isn't accurate guide. Take your temperature. You can feel cold & have a higher temp & vice versus. You were over range- as Ive said before you needed to miss a dose or two. Then restart. Dropping an 1/8th of a tablet isn't going to lower your level much if at all. But really you need to also keep careful records as Ive described before. Be less hung up on percentages but the actual blood test results/ranges, temp, pulse rate & symptoms/ signs. Not down vits mineral taken & their results too I know this is laborious but you need to log it all down so overtime you can unpick it & a pattern will evolve. Otherwise you will carry on going round in circles....lol
Aww honestly I think you need to focus more on how you are feeling/symptoms, less on percentages. Your temp is at a good level. Mine varies a little between 36.8 -37C & Im post menopause! So its not significant. It is very hard when you feel so up and down. Glad you feel a bit better this eve thats good. Keep logging. Thing is you have established that going up on your ndt dose even a little tiny bit is too much. So that IS good to know & a fact so no neec to revisit that one -all is not lost! After youve settle you can decide whether to drop the tiny bit of levo and see if you fare better on ndt on its own like you were before. I do feel for you honest! Just keep a check on the vits & minerals & ensure they stay at a good level. I also eat bananas for their potassium! If I recollect correctly it helps out with vit bs or is it if your low in vit bs your potassium level can be lower too.....I forget! I think you are very close to your sweet spot as you have times when you feel well. keep going!
Just been looking back on you messages. Can I ask why you dont take a lowB Complex with folate as well as your B12? I have my b12 injections but I also take Thornes Basic bs with folate daily. The folate is important. The bs work together so its a good idea to take folate with your bs. So Id take them consistantly including the folate......they need each other.
I take B9 - folate Quatrefolic 400 and B12. I used to take B complex for a few years, but I had side effects. When I stopped it, they went away, so I never got back to it.
Totally, my electrolytes are very good, I check all my vits every 3 months.It is very hard with no sleep, as I have a very demanding job at the moment.
Last night I fell asleep around 3 am and was waking up every hour. This is a sign of undermedication for me. Also, my skin is extremely itchy at night the last couple of nights.
Am really surprised your symptoms are swinging so rapidly. Ive never gone from over to under so rapidly, adjustments in meds have a slow effect & take time so there has to be another underlying cause. Stress is a really bad factor in this for you & am sure is adding to all these variables you are getting. High stress causes high cortisol which will cause problems with sleeping. I dont think its your thyroid meds causing these very rapid big swings. Can you look at ways of managing the stress levels in your job?....at least at the end of the working day? My brother swears by no screens and hour before bed & exercise after work to de stress. Not trying to be glib. I do a stressful job & I'm very strict with my self these days - workstuff in a separate room, not working late in evening etc.... not easy I know but ure health is worth more.
I know it seems it's a common enough situation, I have read and commented on this recent post on HU :
healthunlocked.com/thyroidu...
So I'm happy I'm not alone!
I have cortisol test on Friday, will see how it goes, will be checking progress of my ft4 ft3 as well. A good while ago my cortisol has been low between 10-12 and late afternoon/early evening, but supposedly within range.
You're right about screens, I have been glued to my phone a few lately! Need to be mindful of that, big time
Health is my priority, job is not high on my list for sure😊
Sorry if I sounded a bit abrupt....lol. You are in a difficult situation. In addition to all that you are doing I would look at your stress levels & try to reduce them. (Easier said than done i know) Also great programme last night on sleep which offer some great tips. You can only do what you can. However I would still stick to slow changes so your body doesn't get confused. x
You're fine 😊My overdose have passed gradually and I'm back to my usual symptoms I guess and labwork is still same, ft4 39%, ft3 78%, so it is very consistent on this dose since December. I have slept better as well. Will take it slow.
Thank u.....I did sound a bit grumpy! Oh bless you. So frustrating for you. I guess as you say at least your consistent & there is a pattern. Not much comfort though. Sigh. Ft3 percentage sounds good though & ure not over range which is important. Ft4 is a storage form so, so long as u have some I wouldn't worry too much. Think of Paul Robinsons gang on T3 only - they all do fab but their ft4 levels suck. I guess (& this is a guess!) You could always try an increase one dose per week if you feel your dipping with under active symptoms? You clearly only need a tiny amount or it tips you over. Everyone is so different. Wish doctors would wake up to that. Hugs!
Were you ever on t4 meds alone before switching over to ndt? If so, how much were you on? I'm always fascinated/curious to know how much t4 ppl were on before switching over.
Aww thanks Incoguto. Good job you didnt alter. Looks a good result. If you stop taking the levo than I would expect your ft4 level to drop lower. I cant remember when you take your thyroid meds but have you ever tried taking your levo away from the Armour? Eg take the levo at night and the ndt in the morning.
Sorry my son interrupted me. & I posted this without finishng. The reason why I wondered is that if you take them both together maybe (no science behind this!) maybe one interacts with the other.......this is pure speculation and I may well be laughed out of town!!
But otherwise if you were fine before on ndt on its own then it does make sense to think why wouldn't you be again! I do know of someone else whose ft4 is around midway through the range and her ft3 is top of the range on ndt only and she feels fine. Shes been like this for several years. She doesnt have to put up with all the fluctuations you do though, you poor thing.
Thanks waveylines 🥰I have tried taking levo at night and it impacted my sleep even more. For some strange reason I don't do well with splitting the dose 😔
I am sure they can interact with each other in some way, like one might cancel the other maybe?
It's reassuring to know that some people feel good with midrange ft4 and high ft3.
I am worried about dropping my Levo as I typically don't do well at less than 110 mcg Levo (this would bring me down to about 104 mcg, I have struggled with that in the past).
It is really annoying that I can't figure it out. I have not been sleeping since October last year, it is really impacting my mood and energy. Now I am also awfully irritated an angry.
Awww poor you. Thats tough. Have you tried it with just ndt since you started back on jt? My concern for you though is that you are worried about the level of the t4 component being lower. Its the T3 part that is the active form....and yours is at a good level....I dont know if that reassures or not. I think its probably one of those things that you can only find out by trying. Its such a small drop in your T4. When I was on levothyroxine and took it with liothyrone. I need far more than I did of ndt on its own. You have lined up all the co-factors....you have tried varying the two doses & that didn't help. So I can understand your nervousness and on paper it looking your lowering the T4 further when its not high....but its a very small drop so I dont think you will crash.
I haven't tried NDT only since I got back on it, maybe only 2 weeks, when I moved from Levo and Lio to 3 grains of NDT straight. It was a big move and was experiencing a lot of symptoms.You are right, I need to be brave and do something. Lowering Levo would be the first step. It's such a miniscule amount and I am so stressed about it.
You are right, so for some reason t4 component in levo vs NDT does different things, NDT seem to elevate my ft4 a little bit more than Levo.
May I ask you a question? I might have asked this before at some point, not sure, do you have both ft4 ft3 high in range?
Last night was so horrible. I fell asleep after 3 pm and I'm awake since 7 pm, woke up almost feeling like drink and really hot. Aw, just want this to go away! Sorry for the rant, but no one gets it in my household.
Sorry wrote a reply & didnt press send! Lol. Yes my ft4 & ft3 are high in the ranges. But a friend of mine is different - her ft4 is mid range and her ft3 is high. I think quite a few people are like her. She feels fine like that. Thats why I keep asking how you feel. As we are all different & its finding the right level for you where you feel optimum. Not easy when it fluctuates. I wouldn't get so hooked up on the ft4 level as its ft3 thats the active form. If you've never tried ndt before then you may have complicated things by adding levo in. Its true some people do need levo on top, most dont. Maybe you just need to give ndt a chance?
Am cursing my high range needs. My GP got me to drop my ndt by a quarter of a grain before xmas...Ive now put on nearly a stone. Now they've tested me again and for some reason the labs have lowered the ft4 range so I've come out still above the range and they want me to lower my dose again. This is all bonkers Ive been on the same dose for 11years.....& theyre meddling with it. Not happy. So got a phone app on Friday. Fed up. I think where hypothyroidism is concerned the medical fraternity always seem to under treat but do not realise the consequences. The trouble is I cant argue being over range....though looking at it I didnt get the full 24hrs clear before test so will tell him that. Though am not sure how much influence that has on ft4 levels. No ft3 done of course.
Now I thought I replied and I didn't. My brain!I will buckle up and change, I need to give it a go, I'm just scared, but you're right, can't be caught up just on results and ranges.
Oh dear.
Quarter of NDT can do it, it's crazy that such a small amount would do that, but very true sorry to hear it.
Were you much over range? I also always test 24 hours after. It is hard to say about ft4 if tested earlier, how many hours have you waited between the dose and test then?
Well it was 20hrs. But I had dropped a quarter of grain 6 months before! So it doesn't make sense. Last time I was 0.03 over range on my ft4. This time they'd lowered the upper range limit & on LESS ndt I'm now 1.75 over ft4 range. If it had been left I would be 1.7 in range. Its daft. They're forcing me to lower because they've lowered the upper limit of the range. 🙉 So I fear a battle on Friday with GP. Onc has just taken me off the estrogen blocker after 7yrs of treatment so am going to argue that lowering the ndt at the same time is not sensible as wont know whats doing what. You know the circuit of three.....adrenals, thyroid, ovaries. Best to retest in a few months & then review. Hope he agrees. Hate being at the behest of people who don't know anything about hypothyroidism. Ive put on nearly a stone in the last 6months due to lower dose. So the thought of lowering to a dose that I've tried before & is too low is scarey. There are some advantages to going off piste! Lol....
What they are doing doesn't make sense, they chance range, drop your medication because of that. Did you have overmedication symptoms?Ok I agree, do only one thing at a time as you won't know what's what. And surely unblocking it will have some impact on other hormones like you said...
Yeah absolutely, I wouldn't go lower if you are putting on weight. Could you still take higher dose regardless?
I will lower levo to zero and increase Armour and see what happens, need to try it finally.
Awww bless u....fingers & toes crossed for you. I wouldn't alter the Armour dose as your ft3 will go over range. Really hope it works. Can understand your nervousness but just remind yourself its tiny drop.
Yeah it annoys me. Am only over because they lowered the upper range!! So no not lowering. I cant really just carry on without them knowing or I will have to lower for a month before the next test just to please them! No overactive symptoms! Temp fine. Cant rely on pulse as am on meds for p-afib caused by chemo.. The trouble is doctors just go on what the labs say.....infact they seem to go on what other say or their screens say full stop. We patients don't come into it!
Aw thank you so much ❤️ oh I actually have dropped Armour so the results I posted are on a higher Armour, thats why I need to get back up to where I was and then take away levo. Planning to do it either Friday work depending or Saturday/Sunday!I am so so sorry, ridiculous! Stand your ground, is your app this Friday?
I'm sorry to hear you had to go through chemo is your afib being managed? X hugs
Yes am well managed these days. 🤣 Was very lucky had a brill onc so 7yrs in remission! Yay! Also have a gr8 specialist cardiologist who is lovely so all under control. Just the daft GP over thyroid levels to contend with.
I'd definately do it Friday to give ureself the weekend. You'renot being daft you know. Your nervousness is completely understandable. You've had a rough ride. And its always nerve racking when you go off piste!
Hope it goes well. I really do! you deserve a break through. Hugs x
No GP app 20th. Shouldve got Onc letter by then so will add weight to my argument. Ive got a stroppy male GP though....so will have to be suitably demur! 🤣
Thank you so much waveylines, I have been so scared to do anything, I only moved to Armour alone this morning. It's been a strange day, I can definitely feel nervousness, tighter throat, etc. I am really worried this will not work out. I guess these fluctuations will be happening for a while now.I am very happy to hear that you have been in remission and you are under care of someone good and nice makes all the difference!
Awwww bless you. So you've braved it. 😊 Try not to worry- treat it like the other changes you have done.....which have been far bigger. Lots of distractions & meditation to calm ureself down. Sending you hugs. 💕
Today is pretty bad. Woke up jittery and anxious. I am having violent hot flushes when I even stand up, can barely move my neck because of stiffness and swelling, my face, hands and body feels really puffy and very hot, sitting here with cold packs. It doesn't feel right, didn't have such violent symptoms last time I changed in December ❤️
Wow! You do have flair ups & this sounds like one. Bare in mind you've reduced your meds a tiny amount. I suspect your flare ups are a separate thing. Eg when stable you need a baseline level of meds but when you have a flare up then because of the damage to the thyroid an excess of thyroid hormones are released- you get these dramatic sudden changes. I know others stop their meds till the flair up settles then resumes dose as before. Horrible for you. Hope it settles. Hugs x
I know 😔I react to changes like that each time, it happens on the day when I add anything more with t3. With levo is not that violent, unless high in range.I could make the smallest change, but it shifts my hormones up and down, it is mad that there are people who react to 1/8 the grain. Some alternate by a 1/4 of a grain within a week.
Turned out I added too much Armour yesterday by a mistake, which I have just realised.
My neck swells always when I'm overdosed, but it did once when quite a lot underdosed. Also, frequent bathroom trips.
Hope to survive today and see what happens tomorrow. Chicken, I am😂 I am still hoping this will work out, but if not, I can always go back to what I know and see. Thank you for listening to my rants❤️
Actually, would you know if changes in skin like hair being greasy, face as well, plus skin feeling hot would correlate with overmedication? I definitely get that a good bit. The only time it settled it was when my Armour was lower and Levo higher, with ft4 under midrange and ft3 around 70%.
Well there no set signs just some that are more common than others. My signs of over cooked are sweating, loose stools fast heart rate & feeling hypher. Best to keep logging to see if a pattern occurs.Have u increased ure Armour then? I thought u were keeping it the same. Just dropping the levo to see if Armour on its own balances u out.
Thank you ❤️ checked and it seems my greasy hair always happens when overdosed. The results of ft4 = 62%, ft3 = 84% were on 2.75 Armour + 6.25 Levo. I was feeling overmedicated, lowered Armour by 1/8 and some overdosed symptoms went away, but was still irritated, couldn't sleep etc.
So now I removed 6.25 Levo completely and went back to 2.75 of Armour from 2.6.
And in addition if uve taken extra Armour today by mistake....balance it out by lowering the equivalent amount tomorrow then start at ure intended dose day after & hopefully ure back to where u were. At least u know u don't need more Armour. 🤣😂
I thought you weren't changing your Armour just dropping the levo as your Ft3 was top of the range? You've made two changes. I only make one change at a time so I know what effect it has. Two changes & you won't know which ones done what. Does that make sense. I know its laborious & slow but honestly you will win through quicker that way.Be careful.....dont confuse the storms of thyroid being released with changing needs.....its a storm comes on quick and then goes again. Id try not taking meds when you hit a storm you might find you settle more quickly, then resume your usual dose. Just a thought..... x
The results were done on a different dose of Armour that I have been taking the last few weeks, so technically I haven't increased it. My ft3 was 84% with addition of Levo. I have now removed Levo so ft3 should reduce from 84%. If if reduce Armour now on top of reducing Levo, then it will fall most likely to 60% and will feel dreadful.
The only reasons why I went off 2.75 grains and 6.25 Levo in the last 2 weeks was being overmedicated to the point I was getting up 5 times per hour to pee, was waking up very hungry, had to eat at night, otherwise my sugar was dropping too much. That settled when I removed 1/8 of grain for 2 weeks.
I have been on that dose for 5 months. I think it's hard to explain this in writing 😀
In 2017 I was overdosed on 3 grains of Naturethroid. I am hoping that I can settle on 2.75 grains of Armour.
Little update as today is the day 5 of not taking any T4.I am very, very tired.
I had a check up today with my endocrinologist. He said to see I get on with Armour only, but prescribed also the tiny bit of Levo I was taking before, in case I need to go back.
It's 23 degrees and I am sitting under a fleece blanket all day. I was not able to work yesterday and today because of feeling like someone pulled the plug.
Meant to say. If you've had a flair up as you described my limited understanding is that after the rush of the extra thyroid hormones released the thyroid can't produce as much......maybe thats whats happening for you. Your getting big spikes then drops. Must feel awful. Hugs xx
My endo said she has a patient, who can take only 5 mcg of T3. Anything more is making her unable to leave bed and taking less is the same. He said it is hard to believe, but he thinks that I'm similar in a way when I tweak, even small amount makes such a difference, which is true when we looked at my results. I need to be careful and tweak by little amounts, which is the most difficult part :(I even did draw a graph, where with an increase, my numbers initially go up and then go down, it seems pretty normal. But whenever I increase first, there is a sharp increase that I'm also feeling (I did bloods week on week to understand the trend).
I don't think it was a flare up, I reduced Levo and increased Armour back up to where it was for 5 months the same day. Endo thinks it was that overlap when ft4 was still in the system plus its converted t3 plus new t4 and t3 from Armour. All these hyper feelings went away as the dose tapered off. When I tried to raised Armour even by half of 1/8 of grain, the jitters were starting. Had a look at my notes, they last 3-5 days.
Now, the questions is, will this stabilise and is the drop in t4 going to be difficult, I can only wait a few days to see if this is actually going to improve a bit or not as I am missing a lot for work right now so not easy xx
Won my case..... doctor said your TSH is always suppressed thats normal for you so we are keeping an eye on the T thingys! (Had to laugh at his technical language). I pointed out I'd already dropped my dose last November first time in 10yrs! So another drop just didn't seem at all right, as dropping had already cause a big increase in weight. He agreed it wasn't sensible to mess now I'm off hormone suppressant. Tbh he was more interested in statins but floundered on that one too. I think I have a reputation at my GPs so they prob dread having to ring me! 🤣😄 Either that or he didn't recognise my voice so didn't get annoyed. Not sure which tbh. Xx
This is great to read. I am happy that they are getting it and understand, even if they call it the T thingies lol😂Are you putting your dose back up to where it was last year?
No Ive left it for the moment. He's put an order up for another thyroid test to do when I want. My thinking was to take advantage of this & see what happens by Sept when my estrogen level shouldve risen hopefully.
It was funny what he said.....especially since he was very annoyed the first time I introduced him to the actual thyroid hormones....he seemed affronted. His lingo quite endeared me to him! You are right maybe its getting through. Hope so as it might help others.
I'd like to think that doctors can change, at least some of them, we need that to happen. Mine is definitely more open-minded that at the beginning. Fingers crossed for you x
I'm day 6 of change and it's getting worse, I am now unable to fall asleep until 5 am, I feel incredibly anxious, teary, unfortunately have to be in bed all day. I go to the toilet every 20 minutes, it's exhausting. This is not looking good. I might have to go back and lower Armour. I must be going the wrong direction here. So frustrating.
Awww so sorry to hear this. I think the double change of meds was too much. So yes go back to the dose of Armour you were on. If you remember you lowered the Armour because you were over range on your ft3. So that's probably whats happened here. You could try missing a days dose to let your system calm down and then restart. Hope you feel better soon
Thank you waveylines ❤️ today is day 9 and I am pretty sure that my t4 from Levo has evaporated. I have put on 3 pounds in the last 9 days (water weight, skin is tight and puffy), I look and feel hypo. My partner told me I look exhausted. It does feel like pulling a plug out.I will either go back to additional levo and lower Armour or will increase Armour by 1/8, which would bump up my ft4 a little.
Oh nooo poor you. Who would've though such a tiny drop in levo would do this. If it were me I'd be inclined to increase a little of the Armour but of course you haven't tested bloods so it would be a judgement call. Whats ure temp & pulse up to first thing in morning? By the way it won't be weight gain but fluid retention. I remember being very puffy, rings not fitting, face looking puffed up. I developed the classic moon face when I was under treated. I keep a pic to remind myself! Lol....
It might also be that you have been swinging a lot lately so maybe the autoimmune side of it has caused further damage to the thyroid & its struggling even more, producing less hormones. All guess work am afraid. Sending you hugs xx
Thank you🤗I am thinking the same, add just 1/8 of Armour and see. Worst case scenario I will go back to adding Levo.
My pulse has dropped to 60, temps not sure, because on my period, not so reliable 🙃
It feels like fluid retention, you're right. Skin feels really tight, when I bend my arms, legs and the face looks like full moon. Took pictures, couldn't believe it.
Let's try it, worst case scenario, it won't work and will go back to what I know xxx
If it doesn't I' d ring your endo & get another blood test done. The eighth (how do you cut an eighth? Best I do is quarters!) will nearly replace the T4 you dropped. And you will get some T3 in to boot. I am so so sorry you are having such a rough time. If its any consolation I remember moving to ndt from the synthetics. Dr P had me stop all meds for 2 weeks then started me on 1/2 grain that I was meant to increase every two weeks till I got to 3. I couldn't wait that long as felt dreadful so fast tracked it to 3grains then slowed down for the rest as he recommended. At the time I needed 4.
So to some degree you have to do what feels right for you. Big hugs & everything crossed. X
Yeah, I can get a blood test whenever, so that's no worries, thankfully.
I have 1/4 grains from pharmacy, it is very easy to cut them in half!
That's true, and that could be potentially a bit too much, because of that extra t3, but maybe I'll react differently to higher ft3 on just Armour?
Thank you so much for your support, it means a lot 🤗
Thanks for telling me that story of moving from synthetics to NDT. It's encouraging and you're right, sometimes need to go with the gut instinct. I have added 1/8 of Armour today, let's see how it goes🤞
You can but try..... On your side is your determination & persistence....you will win through in the end.
Also without the synthetic interfering you may get a different response. Any decent endo will admit its all trial and error. Just remember that.
I will say your swings are extreme whether its a sign of the last frantic efforts of your body trying to keep your thyroid going I dont know but its a good question to ask your endo next time around!
Thank you 🤗 He did say on Friday that I need to keep trying and eventually will find my dose. I told him that I dropped Levo and was feeling off, he said to persevere and see, worst case scenario to go back on it. He said he has a lot of difficult cases, people can be very sensitive to hormones, which definitely is the case with me too.
I think we see these swings only because I tested every week or two, but no one does that 😂 I am a bit crazy when it comes to that, I want to see the pattern etc. Very stubborn as well, which can play to my advantage when it comes to persevering.
Today is day 3 of the increase by 1/8 grain and 11th day of dropping Levo.
I feel kind of flat (demotivated), irritated, tired and I'm retaining water more, I can feel my legs and arms being quite uncomfortable again and heavy on top of it.
Temps normal, pulse over 70. Skin is quite warm all over. Left eye twitching for a good few days. Happened with dose increases recently.
Weirdly, I feel more even, I know NDT is somehow smoother than synthetics for me.
Awww poor you. The feeling even is a very good sign though. Thats exactly how I felt when I switched.....more even. I think sadly you have to give it more time. The more regular testing I get as you have had big swings. I didnt get them.....my thyroid just gave up! Allow the 1/8th time for impact.....its only a few days. Hang on to the positive " I feel more even." A good sign that your going in the right direction.
Your endo sounds lovely. Would you mind private messaging me his contact details. Mines retired & you never know when some bright spark will insist I see an endo again! Lol..... Big hugs !!!
Thank you ❤️ my pulse is dropping to 63-64, I'd say I'm fluctuating now quite a bit. I really hope that I will be improving the next few days. I don't think the dose had a chance to do much yet.
Of course, no problem, will send you his details via private message
I take Solgar sublingual methylated b12, in March B12 was top of range, but I haven't reduced my dose. I keep taking it for sure.
Are you sure? I still have about about 280 pills left, I buy in bulk 😊🤗
I am. I have some STOP. Theyre a lovely pink very vivid and dissolve instantly under the tongue. Found them better than solgar. They have helped me with my neuro symptoms even though my b12 will be off the scale as I inject everyday. Ive not had any symptoms for a while now....will look at the dates to make sure they've not expired. One of my b12 symptoms was an eye twitch. Its unpleasant! Xx
Sounds great, thank you! I find that Solgar doesn't get dissolved so easily. That eye twitch is very annoying. Spent another evening in bed unfortunately, now fluctuating the other way now, palpitations, anxiety and teariness...I hope it gets better tomorrow x what a journey
A little update today. Took my vitals this morning before getting out of bed, pulse 68, temps 36.4, glucose 99 (it was 88-91 with 2.75 grains Armour and 6.25 Levo). Symptoms-wise: neck swelling, feeling warm, twitches muscles everywhere, hungry this morning. Will see how the day goes day 4 of more Armour - 2.88 grains and 12 days since phasing out the last bit of Levo 6.25 mcg.
Oh & I meant to add if you have some methylated sublingual B12 it might be worth adding that for good measure even though your level is good Your body is going through big changes at the mo so we can use b12 up more quickly. I can post u some I bought but not using if u want.
Hey waveylines👋a little update: day 16 of removing Levo, day 8 increasing Armour. Went to check vitamins and did a quick thyroid test, because I'm not feeling well. Some symptoms point to an overdose (feeling very tired, puffy, anxious, a lot of bad flatulence, glucose has gone up higher, sleep is bad). I was more less okay, very hungry this morning, but once I took pills things started to get a bit worse and then at 5 pm I crashed). I hope to have my results tomorrow to see what is actually going on! ❤️ xxx
Oooh nooo u poor thing! What a nightmare for you. I know u say puffy is when ure overdosed. For me puffy was always when I was under treated.....& its usually a hyPO sign not a hypER sign. Anyway you will see whats what with ure next blood test. The only thing I'd say is its only a few days since you changed the thyroid dose. All this changing is very confusing for your body. Its something I'd definately raise with your endo. Will he charge for a phone call? He says he's very good at dealing with tricky cases I think he needs to be aware of the massive swings you are experiencing & at least give you guidance on what to do when you experience a dramatic swing. Thinking about you. X
I told him about it last week, he said to go back if it's unbearable. He said that some people have more violent fluctuations than others, not much you can do with it, especially that all other results are very good. He said he doesn't know why I swing so much, but has another patient, she has the same issue and is on synthetic t3 and then my GP told me the same about someone he had on Armour.
Last time my ft3 was 113% I was very puffy, had horrible flatulence as well I wonder if my ft4 is just dipping a lot and causing all these weird issues.
Hopefully will get results tomorrow, fingers crossed xxx
He said that there isn't much I can do. I can take meds for hot flushes or xanax for anxiety, and then either stay the course or change if unbearable. Realistically there isn't anything really I can do. Since my other stupid GP taken me off 4 grains of NDT to zero overnight, and after a month reinstated my full dose, my body doesn't do well with med changes. I was very ill at the time, 2 months in bed as I was on zero medication and with tsh 0, so my thyroid wasn't producing anything for a month. That was the worst time of my life. Whatever is happening now is nowhere near as bad as back then, still frustrating and difficult x
Your GP needs shooting.....did you so much harm!! 🙈
I really hope things settle for you. At least your endo is honest with you. Even though that leaves you struggling through he sounds like a rock that truly gets it. Must be frustrating for him as a professional too.
Good news re your thyroid results. 😊 Maybe adding levo in was the wrong thing for you. Difficult as you vary a lot. How do you feel? Room for an increase but bare in mind you haven't had the full benefit of your increase yet so may increase. If it were me I would stop the vit D. Thats a high result you can have too much. Re start in winter on a maintenance dose.
I think you're right, maybe Levo wasn't getting absorbed properly or didn't work as expected.I'm feeling okay, a bit tired, sometimes a bit cold, bloated, a bit of a flat mood (because of being tired).
Pulse drops at night to 59, then goes up to 65-68. Temps 36.5.
Will see, I might wait or increase by 1/8. Will wait a few days to see how everything is.
My maitenance dose is 4,000 units, I will reduce to that, otherwise I will drop below range again (same thing happened last year). Having the dose should fix it, will test in 3 months again
We don't have a Bank Hol here unfortunately but having a good day hope you're having a lovely Bank Hol xx
Awww thats so kind of you......havent done much. But thank you. Thinking back on to my move across to ndt I didnt follow the protocol that my doctor recommended but sped it up a little especially if my hypo symptoms were relentless. So be guided by your guts.......
Thank you waveylines, I hope I'm getting closer! I am now staying on what I am and see how it goes. Stomach is still bad, I'm observing it for the moment. Pulse still good, less fluctuations now.
Yes you will have as your results show you have room to move now and your thyroid levels are more balanced . Whereas before your ft3 was very high but your ft4 was low. This is tedious I know but hopefully you will be able to increase steadily without big swings. 🤞🤞🤞
I used to be on 3 grains and then even on 4 grains at some point (unfortunately he was increasing by 1 grains😳never fine tuned anything). Yeah surprised with temps and pulse, it seems quite low for morning to me. Might explain why i feel a tad worse the last couple of days.
Indeed. It might also be that after your recent extremes (autoimmune attacks?) that your thyroid has now a further reduction in ability to produce thyroid hormones? I found the temp/ pulse checks first thing a helpful check in between blood tests. Ouch re whole grain increases! 🙉
This is strange. After taking my dose this morning it's been worse. I have now overdose symptoms like jitters all over body, pulse up to 80+, legs are restless, vision all blurry, feeling panicky, also exhausted, a bit like when I was overdosed years ago...hands strangely warm and becoming hungry.
It sounds like another autoimmune attack to me: releasing extra thyroid hormones hence the symptoms? You probably have to wait out the full 6 weeks before upping as you are dealing with these as well. I dont know what others have done in this situation as it wasn't my experience....my thyroid just started to fail and went downhill. Might be why your temp went back up.....though as a caveat taking your temp the temp when ure up & moving about will usually be a bit higher than when you take it as you wake. So if your comparing it with that its not comparable.
I was feeling the same way for about 1 year on Armour only in 2017-2018. This is why I had to start tweaking with Levo. Symptoms up and down, either too much or too little.
I think maybe there is a chance I'm undermedicated and get confusing symptoms. Right now my pulse is 63-67, I'm tired, feet are cold. I wonder if my body can react this way when dose too low?
Thing is because you vary due to fluctuations probably due to attacks on thyroid, you do need to take increases or decreases steadily otherwise you just don't know whether its a raise or decrease in dose or a thyroid fluctuation causing the symptoms. Personally I would keep it as simple as you can. All these changes of meds are confusing to work out where the symptoms are coming from - New dose or thyroid fluctuation and also lots of changes disturbs the metabolism....making it doubly hard. Its not easy I know....and there definately are no easy fixes. But I dont see how else you can get some sort of base line. So if you've kept to the same dose and after a few weeks you get a big fluctuation you will know its caused by your thyroid being attacked but if you change the doses up/down you won't know if its the dose increase or a flare up. x
I have another blood test this Thursday, which would be at 4 weeks of phasing out Levo. I am starting a new job on Monday so I really need to know what is happening. I have reviewed all my notes from the last 12 months and based on these specific symptoms I am overdosed, I had twitch spefically in my left eye with that last year and several times this year when ft3 reached 90-100% and ft4 was 60-70%. At ft3 113% I was weak and had blurry vision. It all checks out. Pulse has been high all day 75-85, was 57 during sleep (I wear a Garmin watch to track that and stress levels, they seem to be up too). I just need survive tomorrow and Wednesday, then test. Really curious at to what it would show xxx
I normally do every 6 weeks, but when I feel unwell it depends. This one will be 9 days apart from the other one. Judging by how my pulse changed and that I'm in bed a lot, I bet ft3 is near 80-90% again, which would make sense. It always builds up slowly for me. Just need to get through couple of days xxx
Oh dear you are having much tougher time than I ever had it. Cant think who said it but one of the clever people on here said the trouble is that you can swing so quickly with Hashi up and down so the blood test only shows a snap shot for that moment wherever you are in the swing.....clearly this is you. Extremely difficuly to deal with. This may sound awful but it would be understandable if you wished your thyoid to die off so you can then settle to a consistant dose of NDT. I really hope you feel better soon. Its horrible that you are having to rest up in bed. I dont know if Hashi comes under the Equality Act.......but it might be worth checking. x
Thanks waveylines x I am sure it's not Hashi swings, I'm familiar with them (when I get them I feel fluish), wouldn't be happening every week or two and I test my antibodies often, they tend to stay the same. My symptoms are very consistent with changes, I take notes on these all the time and there is a pattern I, have been overdosed on these doses before and it is happening again. I don't see others testing as often as I do, people seem to have similar issues when raising doses of NDT, also everyone's bloods change every week after change of a dose, this is why it's unreliable to test often and better wait 3 months to settle (I only do it as I want to see a pattern).I really want to go to work and do my best to perform this job x I was able to work the last 18 months okay, even with little sleep, so I'll keep going x
I have noticed that when I got tested when my ft3 was lower than 70%, I was not overdosed. I don't seem to do well with ft3 being at 80%+. Tried so many times that I need to aim at something lower than that. Loads of work to do 😊 and I think you were right that maybe increasing Armour even more wasn't the correct thing to do, I might do better on 2.75 as opposed to 2.88/3 grains.
Hey waveylines 👋 a little update on my front, had a blood test yesterday, which brings me to almost week 4 and a suspected, dose has built up more, with no Levo in the system. Interesting results:
Tsh < 0.01
Ft4 18.2 (12-22) 62%
Ft3 5.9 (3.1-6.8) 76%
First time in a long time my labwork looks like that, balanced in a way.
Results before that were (over 2 weeks on this dose, Levo leaving the system):
Tsh 0.02
Ft4 45%
Ft3 67%
The difference in the last couple of weeks is that I feel a bit too hot (temps up, skin hot to touch), my bloating is better, I think I have a little more energy, my pulse is sometimes a tad too high (80s) noticed I have a little hand tremor when I stretch my arms, my eye twitch is back, which only appeared when dose was higher (when recently my ft4 was 62% and ft3 was 84%), trouble sleeping on and off. Weight is the same more less. Mood more stable.
I might wait another 2-3 weeks to see if anything improves/gets worse. I am really annoyed at this hot feeling that also causes some palpitations. My three options are: stay for now and see, reduce by 1/8 or increase by 1/8. Worth noting, I am 4-5 days before period, probably not a good time to change anything around this time 😂
Hello waveylines, posting another update here, tested at 5 weeks.
Ft4 16.2 (12-22) 42%
Ft3 6.1 (3.1-6.8) 81%
Strange symptoms: fatigue (more like overdose fatigue than hypo), overheating, tremors, a bit more hungry waking up and going to sleep, acne coming back and sleep even worse (falling asleep at 4-5 am).
Seems that the dose has been building up slowly the last 5 weeks and at some point I felt well.
I still feel better on taking Armour only than adding synthetic t4.
On a positive note had no period pain this time.
I need to see what's next, but symptoms are definitely heading for the worst and I would attribute this to higher ft3 than my previous few results (67%, 76% respectively), although I can't be sure it's not ft4 dropping, giving me these symptoms? As always, I can either up the dose to 3 grains from 2.88, stay the course or lower by 1/8 grain
Oh bless u! Its really the ft3 that matters the most as that is the active form. Its still well in range. Personally hard though it is Id stick with it a while longer. But Remember we've just had a very hot spell.....I noticed I need a tadge less for very hot days. I believe Dr P used to do the same. So it could be the reason why.....these are guesses!
Am poorly with a high temp at nearly 40C. Some horrible virus doing the rounds....not covid I have checked twice.
I have heard of the hot spell, but it didn't reach Ireland, the hottest day was 22 degrees, happy it was not more I would have melted!It's 1 am, I'm overheating, have palpitations, but my temp is 36.6 this moment and pulse 70. My TPO antibodies also came back, significantly lower, they halved! TG antibodies lowered so they are not over range anymore.
Oh no, I'm so sorry to hear it. I hope you feel better soon, that's a very high temp, are you ok? Xx
4:30 am update: Haven't slept for a second, 24 hours rested, can't sleep at all. It's been like this since Tuesday. How can I do 20 hour days and still not sleep. This is beyond me🤷♀️stupidly thought that maybe I need to take a crumb of Armour to put me to sleep in case I'm missing some t3 at night. Nope, now I'm rested even more🤷♀️took it 3 hours ago. This will be such a long day.
So sorry to hear this. Thing is your blood test results, heart rate & temp do not indicate being over medicated at all. Palpitations can occur when ure under or with adrenal issues. Its a strange one. Feeling hot is not a reliable measure and your temp doesn't reflect it. Are you near the menopause?
Still high temp & throat red raw. Day four cant believe it. 😪 nasty little virus!
Oh no, I'm so sorry to hear you have been feeling so u well, how are you now?
I'm 38 this year, had all sex hormones twice within a month done as recommended and were all excellent, still ovulating, my periods are regular on the dot. And this isn't like hot flushes any time of the day, more like hot hands and feet, I don't even sweat, it's like dry heat, my neck gets hot and swells sometimes too.
I have been taking a little crumb less the last few days, somehow better, but not so much🤷♀️
I am really mad that my ft4 keeps dropping and ft3 keeps going up and I feel unwell with it.
I have a test for SIBO in 2 weeks to see if it causes my Hashimotos and will have pituitary gland MRI in August too see if there is any growth.
Maybe my cortisol is adjusting to my dose? Have no clue🤷♀️
I also feel quite hungry now, a bit shaky, my face and chest are quite greasy again, same with hair...this change is at week 4 and 5 of this dose.
Sorry to hear this. Hope the tests clarify whats going on. Might be worth mentioing this to your endo and also not only blood test results, but your pulse and temperature chart taken first thing. I will say the hot weather may have influenced matters. Ive slightly reduce my thyroid meds today because its been so hot. Was reluctant to do this before due to being poorly but am recovering today......feeling on the mend. So that is something to consider.
That's great to hear you're on the mend! When we're sick our body lowers ft3 naturally a bit, since we're on meds and suppressed, our body might not do so effectively therefore people tend to feel a bit hyper when they're sick and then levels go back to normal.
It's not hot here like in the UK, we only had 20 degrees here today😊
I will see, I had exact same symptoms and lobsided results on Armour only in 2020🤷♀️meds not suiting me perhaps and might be better on a combination of Armour and Levo. No clue at the moment as it's been only 5.5 weeks and rollercoaster. When my ft4 was higher couple of weeks ago when tested, I felt better, now it's back to the usual 40%.
How do you do it that both you're ft3 ft4 are high in range? 😊 I am a lost case lol
Awww you are not a lost case! Its not about being high in range for either or both thyroid hormones. Its all about being optimal for you. Ie when you feel well. My personal opinion is that there is something else in the mix here that needs addressing. That's why I'm glad you are getting those tests. A friend of mine has 40% T4 level but high T3 in range. Feels fab. That would not work for me but it does for her. We are ALL different. Many endos and doctors fail to understand this....but it sounds like yours does. I'm so glad he's on the case. Ask him why does he think you are struggling so much even when the antibodies are low. I really feel for you but please dont give up......
I also want to apologise to you.....Ive just found your b12 package all wrapped ready to go! So so sorry. I thought I'd sent it off ages ago As! As soon as am allowed out again will send it off. Hang in there girl....... xx
Aw thanks 🤗 it is so hard to know and I feel like I'm doing everything I can (frequent testing, supplements, food, rest, walking my steps when I feel okay, new job is much less stressful etc.)
I need to somehow make it to the test on Monday, it will be 6 weeks and 1 day, so should be accurate. It's only 3.5 days, should be ok!
But I have to say I really don't like the feeling of being hungry, shaky, hot and big bags under my eyes, these are all overdose symptoms for me I also pee a lot!
Yeah I wonder what could this be, it's really great that my antibodies decreased again, by 200 down, which is a lot🤷♀️
I will send my endo later in the year so need to brace myself. He will tell me to keep trying...he said to go back to Armour and t4 if it gets to overdose. But I think I should give it a few more days until the test at least!
Please don't be apologising, I am grateful🤗and don't worry, not sure I said it, my b12 is over range a bit and my nurse told me to leave it there, there is no harm she said and if I reduce I might get some symptoms.
If you test b12 when on b12 supplements it often shows high or over range. This is nothing to worry about.....nurse is right. Any b12 not needed is excreted out. However if I remember correctly you stop b12 supplements for several weeks before testing.... They don't test mine anymore as am on jabs.So hot here!! Phew!
But if I stop b12 for testing it drops so not sure why I want to know the baseline, I mean I already know it and it's low midrange. My nurse's recommendation was to keep taking indefinitely and monitor levels.
It's so weird,the hot weather seems to once again missed Ireland😂we have 20 degrees, storm and rain!
Hope you're feeling much better x
I have received my test from letsgetchecked, sending it on Monday at over 6 weeks, fingers crossed I'll know something, my pulse is going up to mid 70s and 80s and my temperature to 36.8, my glucose is going up (I have a sensor on my arm that checks it throughout the day) I am also quite hungry and lost 3-4 pounds.
Thanks.....still positive so am sure I'm destined for the full isolation period. Biggest non birthday out yesterday!! Lol... Am much better though...
Am really not sure what to say. All I can say is consistency is your best friend in this situation so well done for sticking it out until next blood test. Xx
My parents were testing positive for quite a long time, past isolation time even, but apparently that is normal, some people were testing positive for 3 months! Glad you're better x
Ah nothing really to say, I just need to do the test tomorrow and see what it says, I am keeping this post updated as I know a few people follow it and maybe it will help someone with a similar case like me x
Thank you, waiting 6 weeks did feel like an achievement this time (I was able to wait over 5 months on the previous one).
Aww bless u. Yes am told after 10days u r not infectious even if testing positive. It comes up straight away so still very strong. I have 3 more days of self isolation. Means I cant go out on visits for work either. Think there's a lot of it about....lol.
I just got my results after 6 weeks and 1 day on the dose:
Tsh = 0.04
Ft4 = 15.8 (12-22) 38%
Ft3 = 6.5 (3.1-6.8) 92%
Honestly, I'm just so tired of feeling bad. These were really bad 6 weeks.
Note on symptoms: On this dose I am quite fatigued,brain foggy, dizzy (especially when bending down to reach something), feeling hot in the morning and night, very hungry.
I have internal shaking, have jolts at night that prevent me from sleeping. I am also cold in the afternoon.
I have increased the dose after the test yesterday as I was convinced I was hypo, so far more hungry, more swollen and feeling confused. My bones are hurting and my neck is swollen.
I just give up🤷♀️will take a day or so to think what's next.
My temps are normal, however, at night seem to be higher. My pulse is normal, sometimes goes up unexpectedly.
I wouldn't go by temps and pulse as I take half of xanax at night to help me sleep, which now I found out lowers temperature in the morning.
I hope I will find a way soon x
I know you said your friend needs her ft3 high in range while ft4 is lower, would this be similar to my results now?
Oh nooo I wouldn't increase the dose as your Ft3 is already close to the top of the range. So I dont think you need an increase. Remember t4 is a storage form so it the ft3 level that counts most. Id leave the dose as it was and wait for these other tests. Are they soon? Am so so sorry you are going through this. What a nightmare for you. Xx
Those tests only will tell me why I have Hashimotos, they don't balance anything, I still will have to take hormones. I wanted to know what the root cause is of my Hashis (could be because my mam has it and grandma had it too).
These were the worst 6 weeks and I need to be able to work and sleep.
I am not sure about ft4 being a storage hormone only as I feel better when its higher, maybe Armour is not in a good proportion for me was hoping it would be though.
Am so sad to hear this for you. You are right that some T4 is needed in the body.....am no expert on why. Others on here may be able to explain better. Remember there are also people on here who feel well on T3 only and dont take any T4. Products with T4 in made them poorly. They have negible levels of T4 in their system but feel great. You could try contacting Paul Robinson on Facebook. He runs a T3only group. I wonder if he might be able to talk things through with you.
What works well for your other family members?
I think you also need to go back to the endo to discuss your options now.
Thank you x I will eventually get there, just need to gather some strength.
I tried synthetic t3, was very poorly on it and I had talked to Paul before when he was still doing consults.
My mam takes Levo, but she isn't very well, hard to say why, my friend takes a combo of t4 and t3, also doesn't feel well and my second friend takes Levo only and is having issues too. Don't really know anyone doing well to be honest. Not sure what my grandma was on, my dad doesn't know. My aunt had Graves, takes 150 Levo and is very sick and housebound.
My endo said to go back on t4 and Armour...
I'm not sure if I'm one of those people doing well with over range ft3? Maybe? I still would like to try what I can with Armour only, but not sure yet what. Either lowering, but that made me feel extremely cold back in 2020, was on 2.6 grains, my ft4 was 24% and ft3 80%, was very hypo, cold and shaky, anxious.
Sorry about ranting. I think I only need support and encouragement to keep going x thank you for being here for me.
Awww bless you.....you are in a horrible situation.....so feel free to rant. Poor u. 😪
It does seem like you go up and down. Do you think you felt better on the combo of levo and armour than now?
Have you ever tried liquid levo? Some people have a reaction to the fillers....am not saying that's you but its another one to rule out. You can but try.....
Sorry Id forgotten you have already talked to Paul! You did say.
Sorry to hear others in your family haven't done well on treatment. Most of the people I know have done well on levo in its own....I seem to be the exception. My nextdoor neighbour is on levo - he's 80 & does very well. So we are out there honest.
Wish you could find out what it is thats messing up your efforts. Xx
It will settle but you need to follow his advice. When you keep changing doses your adding to all the variability that your body gets up to. You also need to drop your fixation on percentages and focus on how you feel far more. Blood test results are a guide only....
more is not necessarily better.....I know have been there done it. 🤣😜
Ive been reading Paul Robinson s book The Thyroid Patients Manual book. He has a chapter on ndt and so I read with interest. Again there is a tendancy to fall into certain assumptions. He states that people on NDT need to divide the dose into two, sometimes three. He is quite prescriptive about the ratio of the doses too which frankly I would find difficult to follow if I was to adopt his protocol.....how does one split a tablet into a third or two thirds???. I found this irritating and in my case not true. I used to split my dose but once I moved onto b12 injections I found this was unnecessary and take my whole daily ndt dose in the morning. Am not sure where he has got this from but his expertise as a patient lies with T3 only not NDT so it really annoyed me that he is stating this as a fact! I say this to you as an example of how being rigid in our thinking can actually restrict and prevent us finding the solution that works for us as individuals.
So follow what your lovely endo has advised. Maybe his thinking is that if you have a constant level of thyroid hormone being put into your body it will help to settle your cantankerous thyroid down. Youd have to ask him! 😜
Yes its a difficult one. More so because your thyroid hormone levels do fluctuate and its not all to do with the meds. I think a part of your thyroid that is functioning but is variable and that isnt helping as you go up and down, making it hard to find a dose that works long termly. Its not long ago that you thought the ndt on its own gave a better balance and you felt that adding the levo in put your thyroid levels out of balance. I think its one to discuss with the endo and ask how do you manage this with all the variabilty of levels/symptoms that is going on. Big hugs -its clearly not an easy one.....lol
Well done you - interesting results re your thyroid.
Re the SIBO H Oh noo......I hope you get sorted soon. Hopefully you will feel a lot better once youve had treatment. I dont know much about this condition apart from what Ive just read. What does your endo say?
I think you may have found the hidden factor thats been blocking you. Yes get the gastro app in ASAP. Tbh that is prob more important than your endo at this point in time. Whether he can help you to be fast tracked is worth asking his secretary though....My response to ndt has been miles better since I found mine....gluten. I'm strictly gluten free now....the tiniest bit makes me ill. You need to find out from gastro what is running this.....ie with treatment and being on optimum thyroid treatment if it will settle & not reoccur. 🤞🤞
Sorry to hear this.....sounds very scary. Poor you....lol. Am surprised they discharged you with a resting heart rate of 148 with no advice to GP at least. Lol...
To me it sounds like your thyroid has been attacked and it's caused a surge of thyroid hormones to be released. This would give you the sense of being overdosed. Looks like your levels are settling now.
You must be feeling exhausted!! Horrible for you.
Hope you feel better soon......if not Id definately let your endo know whats going on. He may have suggestions of what you're supposed to do when this happens Xx
Awww that is tough......keep a log for him though to give to him. It is very difficult because you do go up and down....on the same dose!! After the attack/ release of thyroid hormones once theyve gone the thyroid has usually lost a bit more of its function.....do you think this could be happening to you? You have a surge and then find your low after it?
And what about your temp pulse first thing are you still logging that. If so whats that doing. You would expect your pulse to be higher during the day as you are upright and moving. These days mines in the 80s but thats partly age!! Lol....
I think youve just had a big flare up and so its maybe wise to let things settle a bit before reviewing whether to increase. Now your settling I wouldnt lower. Keep an eye on it you may need an increase in the end though. I still think you have been having little flare ups and that is why your results have varied so much.....its the only thing that makes sense as you have all your other ducks in a row. Sadly you cant do any more than you are doing to stop the flare ups.....lol
It really isnt very easy to manage when this keeps happening to you ....lol.
For me as Ive said before my thyroid died so all Im managing is variation in weather temperature plus unusual big changes in level of activity.....my changes tend to be slow and far more even. I honestly think your changes are really to do with autoimmune attacks. I didnt used to find my female hormone cycle affected my thyroid med needs. Am post menopausal now.... i remember when mine kicked off though I put a stone on in one week, them lost it the next week and so on.....how could ones weight vary so much thought I.....I was a steady size 12 for years but when thyroid trouble kicked off then blossomed up to a size 20 at my worst. Ive never got back to a size 12 but hover around a size 16 to 14. I hate the extra weight but other health probs mean my activity level is low so I think thats the main reason for the extra weight carried these days.
Poor you.....youre having such a tough time. How are you coping with your new job? Sending you big hugs.....
Am glad the SIBO is mild so hopefully that means they can treat it more easily? A bit of good news. 😊
Yes I agree with the dietician. Id be very surprised that the fluctuation is due to Armour as you think. However you look at it your thyroid must be producing variable amounts of thyroid hormones....most likely due to autoimmune attacks. Its good the antibodies are going down overall but that doesn't mean you can't have flare ups. And these flares up may not show up on blood test as they maybe brief but the aftermath isn't. This is just my opinion.
Awww poor you. Its so tough. When you see endo in September he needs to look at how to manage this as you're on a constant roller coaster. I cant remember who it was but one of the clever boffins on here said the trouble with checking the antibodies (or whatever they called) is they can change very rapidly so they can be low but a tiny while later shoot up and the drop back down. The test is a snap shot and can mislead. I wonder if thats whats happening with you. Another thing to ask your endo! If it was overdosing on Armour you wouldn't keep going up and down on the same dose, you'd be consistently a bit high. So it has to be another factor adding to the mix. It sounds to me but am no expert that your thyroid is struggling but at time can give out more than other times, whether this is flare up or whether its just your thyroid trying desperately to work harder to produce more hormones - in a way doesn't matter....but its not cos you need to work harder to get the right dose but more about what to do when your thyroid is so variable and causing probs with managing your thyroid levels. I hope this makes sense. I think you will have this prob no matter what form of thyroid hormones you take....
So your endo said he is very good at managing difficult cases....he needs to help you so you can get onto more of an even keel. So what you are asking do I increase/drop, temporarily stop the thyroid meds is very pertinent & key to self management. I suspect it maybe the old fashioned ways of body temp, pulse rate signs/symptoms maybe the best way as they are immediate, when logged regularly more likely to show trends. Blood tests alone are snap shots again, helpful but again your hormones could change quickly if your thyroid has spurts of releasing more or struggling. It all depends on how quickly your thyroid output is varying.
Aww glad you spoke. Sounds sound advice. It is difficult and he is right consistency is key. Had he any suggestions of what to do when you swing like this? I still think you are relying on the numbers on the test results too much....its how you feel that really matters. Everyone has different optimum levels. Being high in range is not the goal but what feels right for you. I think you need to listen to how you feel more and rely less on what percentage in the range you are. It maybe for you that you feel better lower in the range. Go on how you feel and signs, symptoms more. Xx
Dont feel like an idiot. We've all done it at some point myself included. I had to stop my meds for 10days when I did it. I was terrified. Thought I'd collapse. So he said ring me in 3days, so I did and was fine so he said ring me after 7 days and then he said you can do the 10days. So I did & was fine. Felt much better. I very much doubt it will cause a flair up.....but you will feel better quicker if you do what he says. 😊
No I didn't think I was so overdosed I'd collapse.....I thought stopping treatment for 10 days would cause me to collapse. Lol 🙄 silly me.... xx
I did feel overdosed. Sweaty, faster heart rate, a bit shakey, loose bowels, tremors.....but nothing terrible. But yes blood test result showed I was over treated, fitted symptoms. He was a great doc, so patient. I now don't have any worries about stopping for a few days if I feel am getting a bit over dosed. These days if I even lower a bit for a day or two am constipated so know thats wrong for me.
So listen to your body, write it all down. If it helps write hyper, hypo symptoms separately and then another column for symptoms that could be either....eg palpitations. Most of all hang in there your lovely doc has said what to do and you will feel better in a few days. 💕
Thats a good spot! I do take a quarter as am on 3 3/4 Armour. Thats not easy so I always make sure I take the other quarter the next day....seems to work.
Interesting you thought the same re his book. I was hugely disappointed. So yes will give mine away too. You are right ndt is nothing like the synthetics there is no high low as you get on T3. Thats what I like about it.
I take my ndt all in one first thing. Works great. But it was important to get the usual vits etc optimal.
I also need my thyroid hormones near the top of the ranges.....for me this mid range idea doesn't work.
Thing is we are all very different.....what works for one doesnt for someone else. And he would be wise if he made that much clearer in his book. Medicine is as much an art as a science. Of recent years the 'art' seems to have gone out of medicine.
Awwww when you have been so ill and badly treated because you didn't get the thyroid hormones you needed its hardly surprising that you have a fear of stopping briefly. When you're over cooked the quickest way to get levels down is to stop for a bit. Reducing the dose (though you barely did so) is going to prolong the agony but if lowered enough would work in the end. It will pass once you get your levels down......youve over shot thats all.
Actually it has its own learning because you now know you went to high..... xx
I dont understand the dehydration or low sodium. Are you drinking lots? Here at least its been a very warm summer and Im certainly drinking far more.. You do seem obsessed with blood test results more than how you feel. I honestly do not think the constant testing is helping you.
I think your best bet is to log all these blood test results and email them across to him asking for advice. This way he can see for himself the changes.
To be honest Ive gone far more on how I feel. Ive no idea what my blood test results said after Id stopped treatment for my 10days and then restarted. I do remember by day 10 I felt sluggish and clear symptoms had kicked in telling me I was under treated. Eg, constipations, dry skin. We checked my bloods 8 weeks after restarting. .
palpitations, or fast heart rate like you are suffering with can incicate high or low thyroid. Where you feel your sweet spot is on the thyroid range hasnt been established either. So where is the sweet spot? You are in danger of assuming once again that its the highest percentage rate where you need to be which it clearly Isn't as you are over cooked at that level.
Go back over your log.. Look for your blood test results where you have felt either well, or better. Hopefully youve logged your symptons/signs along side the blood test results. Your are looking for a pattern/trends.
The other issue is changing doses. You have to give it time for every change. Your body needs time to setlle once you go back on treatment. In that time it may swing all over the place Am therefore how useful all the extra blood tests are......they seem to undermine and confuse you.
Lastly Im not suggesting you stay off treatment for 10 days.....thats what my specialist told me. what did your endo suggest? I think you said 3 days? Today must be the last day. So he needs to let you know what dose to start back with.
Lastly have you checked the other co factors recently. What were those results?
Its hard not to panic when you feel rubbish but try not too. Xxx
Sorry didnt mean to upset you. I thought you hadn't been on Armour. Well indeed clearly if the same thing has happened twice Armour is not for you. Lol...Am glad he has asked for all the results etc..... He will need to look at what the problem is around your sodium.......because as this was picked up by the hospital and it still is the same it needs to be investigated.
As Ive said before it does sound like something else is at play here too. Glad he is on the case and hope you hear back from him soon. I assume the palpitations could also be due to low sodium?
OMG you poor thing! No wonder you have no faith. I'm so so sorry.....I had no idea you'd been through all of that. What a nightmare for you. No wonder you are fed up with it all! And yes the hospital are awful leaving it like that. I had cardio toxicity & my heart would race at rest at 150. A&E would keep me in one of their bays over night till GP surgery opened then discharge me & tell me to see them. That happened 3xs so I refused to go in after that. Thats my little experience. It sounds like all these professionals have not managed to stabilise you.... xx It is weird because whatever dose you seem to go on at some point you end up going hyper....you need one of the whizz geeks on here. I wonder if they could help you? Am trying to think of the chap on here who is doing a lot of research.... he is very knowledgeable& highly qualified. I will try to remember who it is & pm you..
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