Help with recent bloods please - increased dose... - Thyroid UK

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Help with recent bloods please - increased dose, feeling spaced out and teary

Sleepymouse profile image

Hi there,

I am in my late 30s, have Hashimotos, diagnosed 10 years ago, my TPO antibodies have reduced greatly after being on Armour Thyroid and small amount of Levo, my TG antibodies are now in range too, which makes me happy. My vitamin D is over 100, B12 finally 70% of range, ferritin is mid-range, folate top range, iron high in range, after many years of supplementation (I take 4000 units of vit D, Solgar methylcobalamin 1000, folate quatrefolic 400, Floravital 20 ml a day). I eat low GI food, full of wholefoods diet with plenty of protein and veggies.

My issue is lingering hypothyroid symptoms, mainly water retention and stiffness (they cause painful walking), dry hair that lost its curl recently, tiredness, trouble falling asleep, puffiness.

My recent thyroid results were on 157 mcg Armour and 19 mcg t4 were:

Tsh below 0.01

Ft4 = 66% of range

Ft3 = 81% of range

All tested 24 hrs after taking all my dose at once (I can't split my dose, I feel more underdosed if I do so). On this dose after a few weeks I had regular toilet trips, which is great, skin was not as dry, I wasn't stiff and was able to walk more.

Since I still had other new symptoms, including hypoglycemic episodes after meals and shaking, stipl trouble falling asleep and now waking up early, irritation, anger, feeling hot, so to experiment - I have increased Armour by a bit, a became even more angry, irritated, puffy, hot, waking up even more frequently at night. Decided that I need to swap synthetic Levo for Armour, that maybe synthetic Levo makes me feel sick.

It's been over 2 weeks on 165 mcg of Armour and 12.5 t4 and I feel strange, just not like myself. Teary, weak (but no hypoglycemic episodes after food), so so tired, falling asleep at night on and off, but waking up early and feeling weirdly rested, depressed and anxious and still feeling quite HOT (but not as bad hot as on higher Armour).

I am not sure what I am doing wrong. Is my FT3 too high after 24 hours from testing?

My ft4 can't be too low as it makes me feel cold, anxious etc. this is why my endo added T4 to Armour as just on 160 mcg Armour I had ft4 27%, ft3 80% and didn't feel good at all.

My endo is happy for me to fine tune this to my needs, but I am not sure how to do it.

Thank you for your help in advance!

79 Replies

At your stage it becomes a very personal thing. No one can tell you how you will feel. You have to go with your knowledge of your body and instinct.

Sleepymouse profile image
Sleepymouse in reply to Lalatoot

Thank you for your reply. You are right. It is so very confusing as I have learned a lot through this experimentation, but realised recently by joining the forum, that this ft3 might be too high for some people and I started to question it. As my husband says, you can go either way, reduce Armour and add a bit of Eltroxin or the opposite. I am not a fan of side effects that come with each dose change of course, but need to keep looking for my dose.

Lalatoot profile image
Lalatoot in reply to Sleepymouse

It has taken me 2 years of dose changes to finally get somewhere. It is a long process.

Sleepymouse profile image
Sleepymouse in reply to Lalatoot

It is indeed. I am glad to hear you made it, it certainly gives me hope that I will too, hopefully sooner than later. Been at this combination for 12 months, previously was on Eltroxin with the addition of Thybon, felt bad on that even though my results were excellent.Armour has improved my living so much, but I am not there yet.

Lalatoot profile image
Lalatoot in reply to Sleepymouse

I added lio to levo.

Sleepymouse profile image
Sleepymouse in reply to Lalatoot

I have just read your bio, are you still on 100 levo and 7.5 lio?

Lalatoot profile image
Lalatoot in reply to Sleepymouse

Yes. I have another issue which has become more apparent since my bloods and symptoms got better. I get pain in thyroid area and lose my voice. Throat gets constricted. It goes away briefly. I think it is goitre , nodule ,thyroiditis at worst cancer. Endos ignoring it so am waiting for ENT appt

Sleepymouse profile image
Sleepymouse in reply to Lalatoot

Oh dear I am so sorry to hear it. They are ignoring it?? Unbelievable. I used to get such pain and swelling, but for me it went away with a higher dose. I really sympathise and I hope you will find out very soon as to what is causing it.

Lalatoot profile image
Lalatoot in reply to Sleepymouse

Yes the endos say that it is not their dept but ENT. The last year and a half have been phone consultations with a new team of endos who have never seen me. I thought particularly when they heard my almost gone voice last time they would want to examine me or organise a scan. They are only concerned with hormones.

Sleepymouse profile image
Sleepymouse in reply to Lalatoot

Shocking, I would think it's their responsibility to do a scan.

CDN_Lady profile image
CDN_Lady in reply to Lalatoot

@Lalatoot Do you cough a lot in the morning too but it passes? I have same symptoms as you. Often hoarse which I think still means I am hypo. On 2 grains ETFA and 5mcg lio all in split doses.

Lalatoot profile image
Lalatoot in reply to CDN_Lady

No I don't cough much - only occasionally have dry throat. Don't think I am undermedicated as my FT3 is just over range. My Ft4 is just under halfway through range - I have tried to get it higher but didn't like the result!

CDN_Lady profile image
CDN_Lady in reply to Lalatoot

Sorry didn't mean to imply that you were hypo. Just me. My T3 levels are in a good range. TSH is very low and T4 is low. But the hormone is just not getting to the cells and this is a mystery still to solve! Glad to hear you don't have a cough as well. Not sure what causes this for me yet.

Sleepymouse profile image
Sleepymouse in reply to CDN_Lady

Just to share my experience, I had a dry cough, especially at night and morning when my ft4 was low. I need ft4 ft3 balanced well it seems. I know some people don't feel good with ft4 higher than below midrange, so not the case for everyone.

Lalatoot profile image
Lalatoot in reply to CDN_Lady

I gave my blood results because i don't think the throat issue is directly linked to hormone levels. I think that something causes the thyroid or nodule or goitre to become inflamed independent of blood levels.

shaws profile image
shawsAdministrator in reply to Sleepymouse

Blood tests were introduced for levothyroxine only, Therefore if you take other than levothyroxine our blood tests may not be accurate and it should be on 'how we feel' that indicates that we're on an optimum dose or not.

Sleepymouse profile image
Sleepymouse in reply to shaws

Thank you for your reply shaws. I see, I would prefer to go by symptoms, but I find them so similar when take too little or too much. I guess feeling increasingly hot and irritated on increasing my dose is an indication that maybe this is the wrong way. I am in two minds if I should experiment with lowering Armour slightly and adding a bit of t4 or increasing Armour while removing t4. Is this normal to have to fine tune the dose so much? It feels like a little bit makes such a massive difference.

Lalatoot profile image
Lalatoot in reply to Sleepymouse

I was hyper and am now hypo. I can say that my hyper and my hypo symptoms were identical. Could only tell which I was from bloods

Sleepymouse profile image
Sleepymouse in reply to Lalatoot

I agree, I find the same, it is so much trickier dosing two hormones than one so blood tests are essential for me when I'm in doubt

Hello Sleepymouse,

I think all the replies are really helpful and don't disagree with a word. I'm a great advocate for Paul Robinson's book "The Thyroid Patient's Manual" which I have found terrifically helpful for my wife's Hashi's. Chapter 22 of PR's book covers less common issues. My hypo wife had 7 mercury amalgam fillings which our functional doctor recommended be replaced with a biologically-neutral substance. It took some time to find a dentist specalising in safe mercury amalgam fillings replacement and who had the appropriate vapour extraction equipment. In the two months following replacement of these mercury fillings, my wife's mornng underarm temperature increased by over 0.3 deg C. It's a costly business (£160-£180 per filling) and there was a six-month detox programme following the mercury fillings replacement, but it certainly helped my hypo wife.

The same lovely dentist is also a homeopath and gives his nervous dental patients Bach's Rescue Remedy. I used to be sceptical about homeopathic remedies, but my attitude is that they can't do any harm and they might just work. Bach's Rescue Remedy is not expensive and it's easy to source (Amazon) and you might find it helps with your anxiety and irritability.

It generally got the "thumbs up" from correspondents to this site when the subject comes up.

Your FT3 and FT4 look to me to be in the right ball park. Time to think about some less common issues?

Hi Jonathan , is your functional dentist in the North West by any chance?

Gloucestershire.

Hi please could you let me know how I can contact your wife’s dentist? thank you in advance! I’v been searching for ages to find a dentist like this

A great reference Manuel he also has a blog

You said you take all your meds in one go and that you tested 24hrs after the dose. That's way longer than we try to test T3 if we add that to Levo. We aim to split our T3 dose the day before tests and take the final part 10-12 hours before the test. So your 81% of range T3 reading was taken at a low point and not reflective of the days dosage. I think your T3 could well be too high. Now that you have tried adding even more Armour, increasing the T3, and feel hot, angry etc, I think that's telling you it's too high.

If I were you (and God knows I'm no expert!) I would try a reduction in the Armour to bring the T3 down a bit and increase the T4 you take.

I hope others on combo treatment at least come along and join in for you. But I think you have gone the wrong way on this experiment for now.

Thank you FancyPants54, my husband said the same thing to me, ft3 is always high and maybe it is too high for me, thinking that it must be over range at night if it's at 81% early in the morning.

It could well be. It's worth trying a small reduction and seeing how it goes.

Yeah good idea, I will do it next week as I have a blood test next Wednesday and would really like to see where my results are and then remove a bit of Armour. Isn't it crazy that such small amounts make difference?

Yes it is. I keep thinking 5mcg T3 isn't much to add or remove, but it seems that it is. Same with Levo, I tried increasing by 25mcg a day, nope! I might have to try increasing that by 25mcg twice a week or something daft.

We are definitely on the same team. Levo I was only able to increase by 6.25 mcg a day, Armour by half of my quarter grain. My endo told me he has a patient, who needs 5 mcg of t3 to feel fabulous, but you take the 5 mcg t3 away and it's near to death experience for her. Heard this many times.

My goodness 5mcg makes all the difference. That's incredible. I think I rushed in too fast at the start - thanks to an odd dosing strategy by my endo - and might have missed the sweet spot. This really isn't the sweet spot. I am feeling really depressed now on top of not being able to walk etc. I'm just not sure how to back-track without causing my body major stress and anxiety.

Oh dear, I really sympathise, especially the walking bit. Where are you now with your doses and results? I find I need my ft4 higher than 30% of range, but not too high, ft3 lower than 80%, but not lower than 70%....now, how to do it, its another thing altogether. By the way, I missed my sweet spot so many times by changing my dose too often and expecting miraculous results in 4 weeks :(

I'm on 125 Levo (for a long time now - have tried 100 and my hair shed like a moulting cat, have tried 150 a day and felt like I do now really) and 25 T3. The 25 T3 is a recent increase about 4 weeks ago, too soon to have tested yesterday really, but I'm seeing endo next week so I wanted to see what difference it had made. And T3 does act faster. I would expect something better than this if it were going to work. I feel as though it has lowered my T4 further. My hair is still falling out, my skin is as dry as old parchment and so itchy. I'm suffering digestive issues and water retention and I'm low in mood and have no interest in anything. I can barely walk for the pain in my feet and legs and when I do walk (hard as no shoes fit due to swollen feet) my legs are really slow.

On 125 Levo and 20 T3 my last full test came in at 37% (T4) and 45.8% (T3) through the ranges. I've never had T4 so low. It's always been over the halfway mark. This is the highest I've ever had my T3 though. I have the Dio2 issue and even with a T4 result of 75% my T3 was just 15.15% this time last year. That was an unusually low T3 result for me though.

My results have been all over the place over the years, despite strict adherence to taking medications and always testing exactly as recommended here. It's exhausting, expensive and so terribly frustrating.

I am very sorry that you are suffering like this, your story is very similar to mine. With these results I would feel very poorly, had similar result in February. Now results are better, but I'm not waiting long enough. My ft3 is always high, but like you, I suffer with low ft4. Dry itchy skin all over, brittle hair, nails, stiff hands, legs, arms, horrible painful water retention. It will get better, I promise you, you need a good balance of ft3 and ft4. I have tracked my bloods with tests for 8 weeks after changing a dose in February this year. My ft3 ft4 rise dramatically after even 6.25 t4 after 2 weeks, then ft3 is same week 3 to 8, while ft4 fluctuated up to 49% and dropped down to 30%. Personally waiting 8 weeks was bad for me, of course unless you feel well. Now my doses are building up more.

I'm not sure I understand what you were doing. Do you mean you retested every week for 8 weeks after a dose change to see what was happening?

Sorry, must be my brain fog when I expect people to read my mind lol :) yes, testing every 2 weeks or so to understand how frees change

Thanks. That's quite a good idea. Did it help you to learn when to make changes going forward?

It was definitely an expensive idea, but I was quite anxious so it helped my anxiety. I felt I understood more what actually was happening and that have to go slow, but 4-6 weeks slow, not 8 weeks, unless I feel good. Like you said, if I get dry itchy skin and anxiety I know my ft4 fell, I get too hot when my ft3 is high, also my ft4, but also, when my ft4 is low and ft3 high, I get hot in the morning and cold during the day, always happens. Also, my thoughts are scattered when my ft3 is too high, I get erratic and irritated when ft4 ft3 are both high. Not easy but it's something!

I'm always too hot. Sweat for England if it were an Olympic sport. I feel ready to throw in the towel today. I'm so miserable feeling and this year everything has just got so hard at work. If it's not red tape exporting to EU it's the hopeless way the courier services have fallen over this year. I relied on DPD for years. This year they have rendered themselves unusable. I had to risk it yesterday for an order that needed to be delivered tomorrow. But no, they have failed to pick it up. I'm tearing my hair out. I have a UPS account too, much better but they charge a surcharge for domestic addresses so that makes it too expensive to use for those customers. Brexit has broken everything, including me.

Yeah I felt too hot all the time on synthetics. On NDT is different. Have you ever tried taking your dose in one go? Oh dear I am so sorry to hear, must be very frustrating :( I am based in Ireland, but I have read about Brexit having huge implications on businesses :( please don't throw the towel in, hypo makes everything worse, the swings are awful too (if you have Hashis).

No to Hashies in that I don't get swings, I just aways feel horrible. No antibodies to speak of. Yes it has made everything ridiculously hard. I can't even ship to my Irish customers properly anymore. We have to break parcels down to use the post!

I used to take all my Levo in one go. I've never tried taking all Levo and all Lio at the same time. I have atrial fibrillation all the time too, so that really doesn't help. I'm sure that's linked to years of crap thyroid.

Blimey! Just got my test results back (fast, only did it yesterday morning).

TSH 2.91

FT4 - 13.8 (12-22) 18%

FT3 - 4.4 (3.1-6.8) 35.14%

How can I be swallowing 125mcg Levo a day and get a result like that? TSH is up. Free T3 is down by taking more. I just don't understand what the hell is going on. But it's little wonder I feel so dreadful.

Monitor My Health comment is "Good news, your thyroid hormone levels are all normal (known as euthyroid). There is no indication of thyroid gland disorder. This interpretation is based on the assumption you do not have a pre-existing thyroid condition and/or receiving thyroid treatment."

Well that was a rubbish review from them wasn't it! I did say I was on thyroxine.

This would explaining why you feel so rubbish! Is this 4 weeks after adding 5 mcg t3? I often wondered the same, years ago I went up to 4 grains of Armour, which was 152 mcg t4 and 38 mcg t3...then that became too much, even 3 grains made me overdosed. But my body needed it at the time, maybe it got absorbed and became too much, who knows.

I can’t understand why taking more is pushing everything down! The previous increase reduced my T4 yet T3 barely moved.

I am not sure if it's pushing down, or if it's getting absorbed, but your symptoms seem to be confirming that you feel like they are low.

Hi FancyPants54 just got my results on higher Armour and lower T4, ft4 is 53%, ft3 is 97% after 24 hrs....explains a lot why I was feeling bad.

Wow, your FT3 is high. What are you going to do?

Not sure, here is a thing, when my t4 went up over 60%, I started to feel irritated and had sugar crashes, even though my ft3 was 80%, when I decreased t4 to have it at 50%, I was calmer and not irritated, but my ft3 went high as 97% and was overheating, waking up at night. So I either need mid range ft4 and ft3 around 75%, or I need lower ft4 and higher ft3 and maybe on Armour only. It's a difficult balance, but these are my two options I think. I welcome any advice or ideas 😊 I really dislike this irritation on higher t4.

You have already experimented and proved to yourself that your FT4 doesn't want to be much more than it currently is. I can't remember, but I think you are taking a mix of Armour and a small amount of Levo? Is that right?

You need to find a way to reduce your T3 a bit and keep your FT4 more or less where it is. So that would mean reducing your Armour a bit and probably needing to increase your Levo a little to counter the fall in T4 of a reduction in Armour.

As silly as this sounds, I haven't tried to be on Armour only😳I have no idea if I'd feel better with different results on it. At some point I started adding synthetic t4. But you are right, maybe first step is to lower Armour a bit and increase t4 maybe every second day or so, so my ft4 can go below 66%, ft3 can be around 75%.

Hey FancyPants54 how are you? I have decreased Armour by a small bit and added Levo every second day. On days I take less Levo I am comatose, days I take more it's a bit better. I wonder if this builds up, then it might feel more natural. I have also seen posts of people taking Armour only with midrange ft4 (or a bit lower) , with t3 high in range. So it's either t3 needs to compensate for the slightly lower t4 or t4 needs to be higher and t3 not top of range as it becomes too much. I know I am getting closer and closer, but it's so daunting.

Try and hold what you are doing for a couple of weeks and then see if you can take the increased the Levo each day. It will build up, but only as the T4 from Armour drops.

I will do, thanks, the only issue is if I take 6.25 every day, I will end up with ft4 at 66% and ft3 81% again when I felt unwell. Have you increased your meds as of yet? How re you?

I'm not increasing yet. I see the endo Tuesday, and will make a choice of what steps to take next after that.

I'm just flippin' angry today because I can't be arsed to do anything! I'm fed up of wasting my life.

Don't take the increase every day then, you can take Levo unevenly, as you are doing now with just every other day. But you could take it for 4 days a week at the higher level or even 2 or 3 days a week to get the adjustment right. I tried increasing Levo by 25mcg a week at one point and my FT4 increased a lot on that. We forget that it's 100mcg a month. It soon adds up.

I know the feeling of anger too well, 4 years I have been at it too with 3 different med changes. I hope then you can change your dose in a few days and get some relief. The dose will eventually start building up, like in my case now. That is a great advice, thanks, I take higher dose every second day, but in a week or so can see if I can add one more day maybe. Oh dear 25 is a lot for me too, I know some people say it isn't, but 25 would be enough to bring my ft4 from 0 to 80% for sure, as you say it does build up over time!

Yes, I have fallen into the trap of thinking 25mcg is tiny and so is fine to increase it every day. But it's too much to do that for me now. I think I probably need to increase Levo next. But by less than 25mcg a day. I will see what he thinks. My T3 is still too low, but the T4 has tanked so that needs addressing.

You could always just go by 6.25 for the first 2 weeks and see how you feel?

How did your appointment go Fancy?

Hi. Good. He looked at all I had prepared and said "all this is because you are still very hypothyroid" and then agreed to give me a prescription for 6 months of T3 at 40mcg a day. So I have plenty of spare to experiment with. At the moment he wants me to increase from 25 to 30 and to take it 3 times a day. To leave the Levo alone and to get more reliable with my vitamins (I'm so bored of them, I've taken them for a decade or more to no benefit!). Then he wants me to experiment with my HRT and a water tablet to see if we can get the fluid out of my feet. He said the pain in my feet is because the fluid has forced the joints apart. So first I'm to reduce my HRT a bit and see if the fluid subsides. Then either at the same time, or if I get meno symptoms back I'm to come back up and try the water tablet for a month and see what happens.

But basically he said I'm just not on enough hormone replacement and I'm not absorbing things well. He's asking my GP to arrange a celiac test! God I hope that comes back negative.

I have a six point plan to work through before I see him in December. I have already moved to 3 doses a day. It's not too bad but as I'm still on the same dose, just want to get settled before raising it, I'm still as tired as before. Once I think my body is used to 3 times a day T3, I will increase the dose a bit. Thanks for asking.

Ok it's good you got plenty of t3 to work with. Which water pill are you taking? I have been prescribed furosemide, but haven't yet been taking it regularly. Yeah celiac test is good to have, but 50% of them can come back negative, if you get bloods done for it, the rest if get a biopsy. At least this is what my gp said when mine came back negative. Another problem with absorption could be low stomach acid, which I had. Fingers crossed you are not celiac!Have you increased?

I'm 13 days into alternating t4 (12.5/18 mcg), but it's not great. My mood is again down, I feel hungry again, insomnia every second day and puffiness. Will keep an eye on it, still not sure if this is the synthetic t4 for me or Armour, so annoying.

HiWell I've had a rough week! I don't know where I am. It was suggested I take my T3 split into 3 doses. It was OK at first but I soon started to feel exhausted just after the 1pm dose and then 2 hours later I was feeling anxious, almost tearful and very uncomfortable. The evening dose wasn't too bad but overall I am more tired, more anxious and unable to concentrate on things. I can barely walk and sleep is restless and anxious.

For some bizarre reason I then tried the increase. 2.5mcg T3 extra, on top of my 25mcg T3. Yesterday was horrible. I felt in the pit of despair and by evening I was sitting and my head pressure changed and swooshed and I thought I was going to faint. That happened 3 times during the evening and I felt too hot and poorly.

Today I had to take Mum to a hospital appointment and then do jobs for her. I felt so awful yesterday that I reverted back to 2 doses today and dropped to 20mcg total to see how it felt. I've got through the day and have popped into work on the way home to pack orders. So much better than yesterday from that point of view. But tired and my legs and feet hurt like hell and I can't walk properly at all.

I don't know what to do now. I might stick at 25mcg twice a day for a while. I rushed the last blood test. I could do with holding for a proper 8 weeks and doing it again. My numbers were so low though, I have no idea why I reacted like that to the dose changes and the slight increase. Too fast I think. I need to go really slowly and increasing again after only being on a dose for 1 month is too fast for me.

Sounds like you might have similar reactions to me when splitting dose. Have you tried taking one dose? I can't split, I get dizzy, anxious, can't sleep. Much better when I take it all in one go, or even stick with two doses if that's better.I was wondering if you maybe it is worth trying increasing levo at first if it's worse increasing t3? What do you think?

Also, I feel bad increasing t3 by more than 2.5 mcg, could you split the pill into smaller amounts? I know sometimes it's impossible...

I agree that is good to hold, but with these results holding longer might not do you any good in my opinion. I also had similar bad reactions when my results were low and it was bad increasing doses, once I built up to a more solid dose then increases and decreases seem a bit easier. But I am not there yet😕 I hope you feel better soon

Hi. I can't cut the pill beyond 2.5mcg and even then it's very rough and inaccurate.

I tried increasing Levo. That made me feel unwell. Although we talked about it having been too much of an increase possibly as I had increased from 125 to 150 a day.

I was trying to reach the point of taking it all in one go in the morning. I had got to 20mcg in the morning and 5 at 3pm, but that's when the Endo said I should space it out more. I just wish I was brave enough to just take 25mcg in the morning and be done with it. See what happens. But living with atrial fibrillation makes me very nervous of doing that. I don't like the 3 times a day that's for sure. But I only did it for 4 or 5 days! Not sure what the heck I'll do tomorrow!

You pointed out something really important. Being brave. I think we are so fed up with experimenting on ourselves and so tired of it that we are afraid, well, I am for sure. I spent 1.5 years splitting dose firstly into 3, because of my GP, then into 2 and eventually went to 1 a day. The difference was amazing. It's not for everyone, but I am glad that tried, because it was the right thing for me.I feel for you with AF, I had a "temporary AF" when quite undermedicated and overmedicated, this has gone completely for me now.

Would you try 25 mcg t3 split twice daily? 20 mcg is not going to be enough based on your symptoms and results..and I do think you increased t4 too much, I'd be very very sick on this..

Hi, I've been on 25mcg T3 for 5 weeks now. I tested it a bit too quickly so that I could have a result for my endo last week. But it pushed my blood results for T4 and T3 down even further! I was feeling even more tired and listless and nodding off inappropriately. (So this wonder T3 is making me worse at the moment. Seriously wondering if I should be taking less of it. So far each increase has lowered my results, which is bonkers.)

Then I've had the past week of messing about with it, going from twice a day to three times a day for 4 or 5 days and not liking it, it made me feel a bit wired in the afternoon, then adding in another 1/8th of a tablet for 1 day only and ending up feeling all over the place. Yesterday I took 20mcg in 2 doses to try to calm things down (I felt so depressed on Sunday and had to spend the day helping Mum yesterday so needed to be more balanced) and today I'm back to 25mcg split twice. I'm hoping I can calm back down again soon on this. I'm anxious again today. I wasn't before I messed about with dose timings. Before I saw the endo I was trying to get to once a day dosing. I had worked my way down to 20mcg T3 first thing and 5mcg at 3pm. I hadn't noticed any difference though. I'd still like to try it I think, but there are just too many changes going on at once. I need to work up to 30mcg too. Why is this so hard? Why have I never felt any better on T3 apart from the first week when I was on 10mcg and felt so happy and energised for a bit.

Testing at 5 weeks is not the worst, there is not much difference if any between week 5 and 6 for ft3, even for ft4 in my case.So t3 makes you tired and demotivated? It's possible. It did that for me back when I took levo and thybon, for me NDT was the answer. Then of course, we can argue that your results are still low so that would do it too. So the question is, is adding t3 lowering your numbers or is it helping with your hormones getting absorbed from bloodstream? It's not easy, I know. I have been at it so long, sometimes I just want to just throw something against a wall...

How are you splitting 25 now, the same way as before - 20 morning and 5 afternoon? Wait a few days, anxiety and all will level out, your numbers are probably going up and down causing all this.

Do you have any results back when you were taking 10mcg t3?

All I know is that since taking T3 things seem to have gone South. I don't have results on 10mcg T3 sadly. My Endo rushed the dose increases and I was so sick of trying to be my own doctor that I made the mistake of doing as he said. So that one got missed out and the good effects were lost in the ridiculous instruction not to take any T3 at the weekends. That broke me. So then I went slower.

I assume I feel more done in and demotivated because my numbers are going down. I have taken 15mcg at 8am and 10 at 4pm today and will stick with it a while. It was what I was doing for the previous weeks before I tested it. I need that roller-coaster effect to calm down before I do something else. I feel as if my BP is unstable. It will settle again. It was higher when I raised to 25mcg for a couple of weeks and then back to normal for the 2 weeks before the test. It was declared perfect in the Endo's office.

My results are on my profile if you want to see them. The combo treatment started late 2020. My first results were on 15mcg T3 by then. None of my dose increases have made me feel any better.

This Endo won't use NDT. And the current supply issues would put me off it. Feeling very fed up. I've done nothing today and I'm really struggling to walk. My feet and legs feel horrible. So much fluid retention. Half of me is panicking and thinking I should reduce my HRT and see if that helps. But that's just another cog in the wheel of confusion.

Have you made a decision on what to do to overcome your sleepy afternoons?

Seen your results, it seems the ones you have now are the lowest for ft4, and ft3 is higher, but still low. This is all way too low to feel good. Also your TSH is going up again to 2.9. Your dose is too low, like you're absorbing it all.What HRT are you taking and since when? This will have impact if it's estrogen as estrogen uses same carriers as thyroid hormones do, big time.

Ah it was complicated, I was almost bedbound of levo and t3, even though my results were amazing. Before that for many years I was taking Armour or Nature Throid and was fine until reformulation and of course, my GP told me to start splitting my dose. Oh how sick was I for so long.

It's really unreal how this all makes us feel. I have been 2 weeks on lower Armour and a bit more T4 every second day and start to feel apathy again and just not great. It was like that for a month on higher levo every day and such bad breathlessness at rest I had to stop. So now another decision to make.

I use oestrogen spray, through the skin. They say it doesn't affect thyroid medication, but I suspect it does in some of us, and as usual I have to be special! My levels had got quite high and so I reduced the number of sprays a day a number of weeks back. I could do with finding out what it is now in case it's still too high. But home test kits for oestrogen are very unreliable. So I have to either convince my GP to test it again (last done in June) or I have to pay the HRT clinic to do it. The clinic push high doses of oestrogen. It's not working for me. But I need some as Mum has really bad osteoporosis and I don't want that!

What do you mean by saying "Your dose is too low, like you're absorbing it all"? Should we not be absorbing it all? I was told to expect taking T3 would lower my T4, but I had no idea it would lower it this much.

It doesn't look like the change in your meds is quite right for you. This is the point I'd panic and go backwards!

This chat has been so helpful for me. Talking to others who have been in a similar place gives me hope.

I'm pretty sure estrogen has an effect...did they not prescribed you some progesterone with estrogen? Last thing you want is to have estrogen dominance, would be a good idea to check bloods for estrogen prog etc, I know it's a pain, but I'd say necessary :(Sorry I meant, your cells absorb all these hormones, so you definitely need them and then you need more as your results go low and TSH goes up. T3 doesn't always lower FT4, everyone is different in this case. Yes, technically speaking your body flushes t4 out if your FT3 builds up to a good dose as it doesn't need much or like in my case, FT4 just rises in blood with more Armour, because it's doesn't need so much and maybe my body is too slow to get rid off it, some.say adding T3 helps with conversion, but I don't know why it would scientifically.

All I know that such low ft4 would make me sick.

Yeah I am still hanging onto this dose, but last time I had to quit after a month as I was having really bad hypoglycemia shakiness and low mood etc because I persisted 4 weeks. It's not as severe as back then, but I can still feel it, which makes me think it's the Levo. So I either need to lower Armour slightly to make space for this amount of Levo or lower Levo and possibly add Armour or remove Levo completely. What a mess

I am happy to hear it, also enjoyed speaking with you, it's great to chat and feel like you're not the only one out there.

Once again you give me pause for thought. I have a Mirena coil for progesterone to protect the womb. I had continuous bleeding with the Utrogestan body identical progesterone. But the coil is low dose and not systemic. The clinic I go to advocate higher doses of oestrogen than is often prescribed to combat symptoms.

I know I will be low in progesterone. Just how that is affecting things I don't know. I need to know how high my oestrogen is. I will have to arrange a test. As I said it was higher than I wanted it in June so I reduced. But it could still be high. I'm torn tonight between keep applying the same amount until I have a test or just reducing the level and see what happens. I dread the drop in mood and anxiety. But if thyroid came up as a result that would counter it.

More damn decisions.

If you can check your female hormones, I'd say it will be helpful to see the full picture. I was in shock when last year I checked estrogen and prog, estrogen was fine, prog was high over range...but again, the levo and t3 didn't suit me so who knows.I will keep doing what you doing and get tested, if you start changing now then you won't know what's what. It's your decision though.

I feel like a human experiment, one night I sleep, next I don't. Making decisions every now and then and trying to hold even when feeling like it's not going well, like I'm testing my limits. But it's worth it, really is, I can the light in the tunnel, we just need to keep at it and take breaks when we need to

Cross fingers for us both. I do get my oestrogen checked quite regularly as both the HRT clinic and Endocrinologist get it tested so last check was June, that was higher than I wanted so I reduced the amount.

After our messages yesterday I thought about things more, going over the same ground, but I thought "what if she's right? and oestrogen does bind to the thyroid hormone even though the experts tell us that's not an issue for transdermal oestrogen?" What if it can be? I'm giving it the maximum opportunity to do so because I get up at 8am and take my thyroid meds and apply my oestrogen and testosterone. Then I often hop back into bed for a bit as I see no point in being up and not able to have a hot drink. By the time I get up I feel exhausted.

So I decided to try moving my oestrogen and testosterone applications to evening. And, because I have some handy, I decided to try taking some body identical progesterone at bedtime. I've experimented with this before but can't remember why I stopped. So last night I took a progesterone capsule and went to bed and this morning just my thyroid meds and I was like a different person! I'm taking my second dose at 4pm at the moment and I ran out of steam a bit before that so probably need to move it forward a bit. But it's kicked in now and I'm feeling good again. My legs are sore but not hurting as they were yesterday and I can walk easier and I feel happy in my head!

I just hope this isn't going to be one of those "change something and have a good day and then back to how it was before" exercises and that I may (with your help) have stumbled onto something really important. I'm going to be very upset with some people if it is the case though. They should have known.

I don't suffer insomnia, the only time I did was a week when I tried to take my Levo at bedtime. Awake all night long. It's horrible. I really feel for you if that's happening. Stick with it as long as you can because these periods of suffering can result in us discovering new things that are useful even if we can't stick to the programme.

You really are at the fine tuning stage. It sounds like that's as hard as everything else with this condition. My grandmother was hypothyroid and had to take her "Thyroid pills". Mum used to go and get them from the doctor's house when she was a child. They would have been NDT of some sort. Evidently Nan hated them. I guess she couldn't get the dose right either. At some point when Mum was small the doctor said she should have some but Nan said no! Never. So Mum hasn't been formally diagnosed or medicated. Now she's in her 80's she can keep going quite well but if she eats something and then sits down and we are talking she will just nod off for a while. She only has short half eyebrows. I think this runs though the female side of my family.

I am really glad to hear it, I would also take them at night or evening. From what I have read, estrogen binds to what thyroid hormones bind to get carried into cells, so not sure why transdermal might be different as it's it's amount of estrogen counts as you test blood serum, so same thing? But as you know, I'm not a doctor lol so there is a chance I'm wrong!Hope this change will be positive and you will feel a sense of relief each day now.

Yeah, I haven't sleep properly in 4 years, sometimes because of being overdosed, sometimes underdosed, it's definitely the worst symptom for me, especially with going to work in the morning, but will get there, I have slept soundly before that for 33 years so I am sure it's possible.

I am indeed, day 16 today, but as I alternate I am more low day I take less less more upbeat day I take more.. but I am also too hot. Need to see where this is going. Water is coming off me, but feel to overestimated at times.

Ah I see, the NDTs back then were not as regulated as now, maybe pills were not consistent or doses too low, we will never know. I inherited Hashis from my mum.

We shall get there! 😀

There is a debate whether or not Armour is truly working. Most NDTs now are subpar. Most have been recalled. I believe Armour had a recall too of lots that the T 3 was low in the medication.

helvella profile image
helvellaAdministrator in reply to Dottie44

I have not seen any recent recalls of Armour Thyroid - at least in the past three years.

Do you have any references?

Sleepymouse profile image
Sleepymouse in reply to helvella

I also don't think it was recalled, in fact, my ft3 is high and I feel a big improvement from moving from synthetics t4 and t3 to Armour so not sure if I'm missing something?

Hi Sleepymouse,

My wife experienced withdrawal of first NP and then WP NDTs. Recalibration each time was time-consuming. Armour is more expensive but at least it seems to have been consistently available. My wife didn't get on with bio-syntetics either. Everyone is different, but I think that NDTs have benefits over and above their T3 and T4 contents - at least for some patients. I share your outlook.

Hi Jonathan, thank you for your reply! I had to wean off Nature Throid few years when it was reformulated, it was not great going to synthetic Levo and then after with added t3. Didn't do well on it. Armour, as you say, is so expensive, but it works, some people need it over synthetics for sure.

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