Help with test results and what to do next - Thyroid UK

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Help with test results and what to do next

TiredMummy profile image
57 Replies

Hi there,

I was on Novothyral daily (75mcg T4 & 15mcg T3) for approximately 3 months or more. I was feeling unwell and had a Genova Thyroid blood test with these results:

Total T4 - 89 (58-161)

TSH - <0.08 (0.40 - 4.00)

Free T4 - 18.1 (11.5-22.7)

Free T3 - 4.2 (2.8-6.5)

FT4:FT3 ratio - 4.3

Reverse T3 - 0.48 (0.14-0.54)

TG <32 (<=40IU/mL)

TPO - 134 (<=34IU/mL)

The doctor advised my reverse T3 was too high & so asked me to take Novothyral one day and then 20mg T3 only the next and keep alternating. I’ve been feeling very unwell (literally unable to stand up after taking my thyroid meds) & deduced it was the HRT I was on that was causing the hormone crashing. I’m now on much reduced HRT and totally phasing this out and although the hormone crashing is better, I’m left feeling extremely hypothyroid. I am better now I’m almost off HRT.

I know HRT confuses the picture but I’d be keen to know what people think of my test results in relation to the suggested thyroid medication of alternating with Novothyral one day & 20mcg T3 the next? Taking the HRT away has helped but I think it may have been masking hypothyroid symptoms which I’m now feeling full on. My eye sight has deteriorated quite rapidly since being on the thyroid alternating regime and my weight and fatigue have gone up. I remember seeing an endo a few years ago who recommended I took 100mcg Levo daily with 15mcg T3 so wondering if I should try that instead.

I’m just not sure which way to turn. I want to get on a dose that I can at least be operational so I can stick with it for 6 weeks & then get another thyroid blood test.

Any advice greatly appreciated, I just feel so hypo it’s awful - I think for the first time in my life I will need to finally give in & get signed off work by my GP. I feel a failure but I can hardly function/stay awake!

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greygoose profile image
greygoose

Your poor body must be so confused! You cannot dose T3 alternately like that. It has to be the same dose every day if you want to see results.

Are you sure that Novothyral is 75mcg T4 & 15mcg T3? I took it for a few years and I thought it was 100 mcg T4 and 20 mcg T3.

TiredMummy profile image
TiredMummy in reply to greygoose

Yes, my body has certainly felt confused, chronically I’d say! My health has deteriorated as a result of this regime. I emailed the pharmacy that dispatched the Novothyral 75 asking them if it contained 75mcg T4 & 15mcg T3 & they confirmed this was correct……I’ve been under a specialist GP who specialises in womens health & she’s been great at helping me get my HRT down but I shouldn’t have perhaps let her mess with my thyroid.

Now I don’t know which way to turn as the blood test results are from when I’d been on Novothyral 75 for a few months (before doing the alternating routine with T3 only 20mcg on the other days). I did have a confirmed T3 conversion issue prior to this regime & I was on 125mcg T4 only every day.

I’ve taken 75mcg T4 today with 15mcg T3 and it feels like no where near enough. I know it takes a while but I have to at least be able to stay awake. The endo I saw suggested 100mcg T4 daily with 15mcg T3 so I might try that if people think that makes any sense?! The only reason I didn’t perhaps get on with this regime in the first place was because of the HRT & I was on a much higher dose at the time. The HRT & thyroid hormones would literally fight & I was the very sorry looking casualty.

I’ve been having chronic insomnia (improved slightly now I’m almost off the HRT) but being awake from 1am through to the morning sometimes is no joke. I wonder now if this is low T3 as the endo did suggest taking my last 5mcg T3 dose at bedtime so I might try that tonight. The other issue I have is the specialist I’ve been seeing gets me to take all the T4 & T3 in one go in the morning……this may work for me I guess but all the T3 in one go might not sustain me & it doesn’t feel like 75mcg T4 every other day has sustained me either….

greygoose profile image
greygoose in reply to TiredMummy

Perhaps there are two different strengths of Novothyral, I don't know.

Total T4 - 89 (58-161)

Not a helpful test for our purposes. I'm surpresed the lab did it.

TSH - <0.08 (0.40 - 4.00)

TSH what you would expect when taking 15 mcg T3.

Free T3 - 4.2 (2.8-6.5)

Now, this is low for someone on 15 mcg T3. How do you take your thyroid hormone? On an empty stomach leaving at least an hour before eating or drinking anything other than water?

And, how do you do your tests? Early morning before breakfast, leaving a gap of 8 to 12 hours between your last dose of Novothyral and the blood draw?

Free T4 - 18.1 (11.5-22.7)

This is strangely high for someone taking 15 mcg T3.

FT4:FT3 ratio - 4.3

Useless calculation: ratios are for healthy people, hypos need what they need regardless of the ratio.

Reverse T3 - 0.48 (0.14-0.54)

Another pretty useless test - such a waste of money!!! - it will tell you if your rT3 is high but it won't tell you why. And there are many, many causes, and only one of them has anything to do with thyroid. So, this result could be telling you your FT4 is a bit on the high side, or it could be saying there are other things going on that are not quite right.

TG <32 (<=40IU/mL)

TPO - 134 (<=34IU/mL)

You have Autoimmune Thyroiditis - aka Hashi's. So, thyroid hormone levels are likely to fluctuate whatever you take.

The endo I saw suggested 100mcg T4 daily with 15mcg T3 so I might try that if people think that makes any sense?!

I think that would be more sensible than what you're doing at the moment. Try it for six weeks and retest, and see what happens.

The HRT & thyroid hormones would literally fight & I was the very sorry looking casualty.

What form does your HRT take?

I wonder now if this is low T3 as the endo did suggest taking my last 5mcg T3 dose at bedtime so I might try that tonight. The other issue I have is the specialist I’ve been seeing gets me to take all the T4 & T3 in one go in the morning……

You'll only know if this is right for you by trying it. We're all different, and the best time to take thyroid hormone, and the number of times varie from person to person. It's trial and error to find what is right for you.

all the T3 in one go might not sustain me & it doesn’t feel like 75mcg T4 every other day has sustained me either….

I don't think you've quite understood how T3 works. It's not like aspirin that gets used up or wears off, or whatever. The half-life of T3 in the blood is about 24 hours. But, what gets into the cells, stays there for about three days. Lots of people do take their T3 all in one go and it's perfectly fine for them. But, others would find that it peaks and then dips and that doesn't suit them. But, rest assured, there will always be some in the blood and cells. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Hi Greygoose,

Thank you so much for the replies, you’ve helped me out of a hole on a different occasion I seem to remember. I’m extremely grateful.

I always took my Novothyral or T4 at least one hour before breakfast on an empty stomach. It’s often closer to 2 hours pre breakfast to be honest, after I’ve done the school run, walked the dog before work. I only have water before eating, nothing else.

The test results I’ve shared would not have been pre breakfast and would have been after taking Novothyral unfortunately. I can’t remember the time of the test but I think from memory it was either late morning or afternoon so somewhere between 5 - 8 hours after taking Novothyral.

I’ve no idea why my T4 would be high, perhaps this is why the doctor suggested T4 75mcg only on alternate days following these test results. I also have a strange relationship with T3 & often frightened of taking it. It can have a totally adverse affect of making me extremely cold, hypothyroid and bad pain pressure in my head, acute nausea. It’s always been a bit of a bad running joke that I go from consultant to consultant who get very pleased with themselves when they declare I need T3. I don’t doubt that but my body isn’t always very happy about it.

I stopped progesterone 2 weeks ago, it was really upsetting my thyroid medication. I could barely stand up when I took Novothyral or T3 only when I’d been on this for a while. I was on Utrogestan 200mg for 14 -21 days which I took vaginally. I’ve tried other regimes with Utrogestan and pretty much every other type of progesterone from creams to lozenges and they all result in a living hell for me. I’m also on Oestrogel but weaning off half a pump a week. I’ll be down to one pump from Monday.

I guess it would be sensible to try 100mcg T4 and the T3 in divided doses to start with to see how I get on. I might fair better on T3 now I’m off the progesterone & might even do better with the T3 all in one go.

As an aside, the best I’ve ever felt since diagnosis was 3 years ago when I was on 125mcg T4 only BUT, that was only at certain times of the month I.e. when I’d finished the progesterone and had gone through the withdrawal. I guess it’s another consideration but I think upping to 125mcg T4 right now will be too much of a jump in T4 right now.

greygoose profile image
greygoose in reply to TiredMummy

The test results I’ve shared would not have been pre breakfast and would have been after taking Novothyral unfortunately. I can’t remember the time of the test but I think from memory it was either late morning or afternoon so somewhere between 5 - 8 hours after taking Novothyral.

I’ve no idea why my T4 would be high,

Because you took your Novothyral too close to the blood draw, I would imagine.

And, your TSH would be low because of a) the time of day b) taking T3. But, we're not interested in that - neither is your doctor, I hope! :)

So, what your doctor has done is halve your T4, which is a bad move because it's too much of a reduction in one go.

I also have a strange relationship with T3 & often frightened of taking it. It can have a totally adverse affect of making me extremely cold, hypothyroid and bad pain pressure in my head, acute nausea.

Highly unlikely that is due to the T3 itself, more likely to be due to the fillers in the tablet. Does this happen both with the T3 you're taking now, and with the Novothyral?

Taking oestrogen usually mean that you need more thyroid hormone. But, if you're not taking your HRT orally, it won't be messing with the absorption of your thyroid hormone.

I think upping to 125mcg T4 right now will be too much of a jump in T4 right now.

Yes, you should only increase T4 by 25 mcg every six weeks.

TiredMummy profile image
TiredMummy in reply to greygoose

Yes, halving my T4 hasn’t been great. The T3 I take is Thybon 20 Henning (Liothyronine hydrochloride). I’d have to trial if it’s a different reaction than Novothyral. If I find split dosing T3 suits me better, do I need to space T3 from food like I do with T4?

I presume no merit in getting a blood test done now as would just show low T4 and may as well wait until I’ve been on 100mcg T4 & 15mcg T3 for 6 weeks?

I’m having more and more flushing and insomnia last few days and unsure if it’s my thyroid or weaning off Oestrogel. Taking 5mcg T3 last night didn’t help me sleep but perhaps an unfair test. I think I should pause weaning off Oestrogel for now whilst my body tries to stabilise on higher thyroid hormone replacement or I won’t be able to see the woods for the trees. It’s a while before I’m due my next progesterone dose so hopefully I’ll be in a better place by then.

I’ll probably be in & out of bed today and trying to make sure I eat well as my appetite is so low. I’m stressing about being well enough to work tomorrow or coming clean with how bad I feel! They will sympathise with one breath and then ask when they can expect that report or that presentation with the next. I have to read emails several times and then they don’t always sink in! Perhaps I need to speak with my GP tomorrow. If I’m off work then I’m hopeful it will only be for a week or so. It’s difficult not to feel a failure in this situation!

greygoose profile image
greygoose in reply to TiredMummy

If I find split dosing T3 suits me better, do I need to space T3 from food like I do with T4?

To assure maximum absorption, it's best to take it away from food and other supplements/medication, yes.

I don't think there is much point in testing now, no. You know that dose doesn't suit you. Best to wait until you've been on you've been on your new dose for six weeks.

I think if you could get a week or so off work it would be greatly to your advantage. Get some proper, stress-free rest while your body adjusts and heals. There's no reason for you to feel a faillure. You have an illness, like any other - only more complicated than most - that is not your fault. You wouldn't go into work if you had raging flu, would you, so why think you have to soldier on with raging hypothyroidism? You are ill. You need rest. Try eating small, tempting meals. Eggs are great, if you like them, full of nourishment. And you can do so many different dishes with them, quick and easy. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Thank you so much for your advice Greygoose. Having a better understanding of what has happened and how I might be able to move forwards is a huge help. The thought of just resting for one week whilst I adjust to the new dose makes me want to cry to be honest as I know my body is crying out for it. Says it all really. I’ll call my local surgery in the morning & see when I can get an appointment with my GP.

greygoose profile image
greygoose in reply to TiredMummy

You're welcome. :) Good luck.

TiredMummy profile image
TiredMummy in reply to greygoose

Having a bit of a set back. I’m on day 5 of 100mcg T4 & 15mcg T3. I was on 75mcg T4 with T3 several days before this. I’ve been feeling more and more hyped and jittery and last night I hardly slept one wink (not an exaggeration)…….Feeling quite desperate so haven’t taken T3 today (so actually did 4 days 100mcg T4 + 15mcg T3 thinking about it). Thinking to stop T3 for 3 days to let it run down and either stay on that dose or try adding in just 5mcg T3. I’ve just looked back on one of my previous posts and I’ve been the best I’ve been since diagnosis on 125mcg T4 only & my bloods look decent. Sorry I don’t know how to post the link to previous posts my brain isn’t up to it. It wasn’t perfect then but I was either over stimulated on oestrogen at the time, needed to add in a small amount of T3 or increase the Levo to 150mcg T4. Just need to find a dose I can survive on, I’m not looking to feel well at this stage.

greygoose profile image
greygoose in reply to TiredMummy

OK, so if you can tell me how long ago it was that you posted about being on 125 mcg T4, I can find it, and have a look at your results. :)

I think if you're feeling that bad it would be a good idea to stop everything for a couple of days. But not a good idea to go down to 5 mcg from 15 in one go. Go back onto 10 mcg, then decrease by another 5 mcg in a coupld of weeks if you're still not feeling good. :)

TiredMummy profile image
TiredMummy in reply to greygoose

It was 2 years ago…..hope this link works: healthunlocked.com/thyroidu...

After this post I then heavily invested in tackling my issues from a HRT perspective and that’s how I ended up on the Novothyral 75 daily as the menopause specialist also wanted to change my thyroid medication (I should have no better but in desperate times you’ll try anything!).

I think you are saying stop T3 for a couple of days (before re-starting at 10mcg) but keep the T4 at 100mcg is that right? Sorry about this! Thank you for being there.

greygoose profile image
greygoose in reply to TiredMummy

Free T4 - 17 (9-19) 80%Free T3 - 4.9 (2.60 - 5.70) 74.19%

OK, so those results show pretty good conversion, actually. It's possible that you could need your FT3 a bit higher than that, but you don't want your FT4 much higher, because that would reduce conversion. So, maybe the right dose for you could be 125 mcg T4 and 5 mcg T3. Your needs might have changed since then, but that might be a good starting point, and see how you go from there.

TiredMummy profile image
TiredMummy in reply to greygoose

Thank you! I have taken 125mcg T4 this morning but will stay off the T3 today & either add 5mcg T3 tomorrow or the day after. I took my last dose of T3 on Weds & I think you said it stays in the body for 3 days so not sure which you think would be best to add in the T3? (Either tomorrow or Sunday)

greygoose profile image
greygoose in reply to TiredMummy

What gets into the cells stays there for three days. The half-life of T3 in the blood is about 24 hours. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Thank you Greygoose, I will try adding the 5mcg T3 from tomorrow/Sunday

greygoose profile image
greygoose in reply to TiredMummy

Just give it a try and see how things go. :)

TiredMummy profile image
TiredMummy in reply to greygoose

I’ve just realised both that post 2 years ago and my latest one….I’d reduced my oestrogen. I think the T3 is playing in for the insomnia making it more chronic but I’ve had insomnia for a long time now…..since I’ve been under this HRT specialist. They all have different schools of thought but she’s definitely in the “as low as you can go” camp. She also uses saliva testing rather than bloods for sex hormone testing (uses blood for thyroid though). I had my bloods done for oestrogen recently and it was 105 (should be at least 500 apparently to feel well). Just a thought.

FancyPants54 profile image
FancyPants54 in reply to TiredMummy

If you are flushing and not sleeping I'd say that's your reducing oestrogen. I would not advise weaning off it altogether. It is bone protective. And brain food.

I'd say stick with 2 pumps of gel a day. Have you tried a Mirena coil for the progestogen? I love those. Also, you might do better if you took the Utrogestan every day at 100mg. Or even at 100mg every other night if your GP is willing to provide you with a scan now and then to check the lining isn't too thick. 2 pumps of gel is a medium dose. HRT in balance can help thyroid hormone to work. We should not be starved of any hormone.

TiredMummy profile image
TiredMummy in reply to FancyPants54

Yes, thank you for your reply - I think it’s the oestrogel reduction and I’ve put it back to the previous dose of 2.5 pumps daily from today. I don’t get on with 100mg Utro at all, I’d be suicidal again. Don’t ask me why I get on a bit better with the 200mg pessary it’s always been a mystery- I can only guess I don’t absorb it as well but don’t think I’ll ever know. Mirena might be an option but I’ve tried a different coil (Kyleena) which was a lower amount of progestin and it had to come out as it made me too unwell. I’ll re-try 200mg Utro on sequi as I haven’t tried that whilst on this dose of oestrogel. I was on 5 pumps when I last tried sequi like this (the HRT clinic diagnosed me as progesterone intolerant) that was 18 months to 2 years ago. I may consider the Mirena down the path but it’s a progestin rather than progesterone which worries me…..I could never tolerate the contraceptive pill for example and when I was younger, they tried me on the POP (progesterone only pill) & I seriously wanted to end my life…..so you can understand my hesitance! Hysterectomy may be a stark reality I will have to seriously consider but I really don’t want to go there.

FancyPants54 profile image
FancyPants54 in reply to TiredMummy

Then the Mirena may not be for you. But did you know that you could use the 100mg Utrogestan capsule vaginally? If you want to take it every day to avoid a bleed. You do not need the 200mg pessary. Those are used in fertility treatment and if you use one of those every night all month long rather than only part of a month, you will be getting more than you need. If you want to take it every night just get a prescription from your GP for the 100mg capsules and use your finger to insert it when you get into bed or after sex if applicable. Many of us have been doing this for years. The menopause specialists advise it for anyone who gets side effects taking it orally. I did it a long time until I decided to have the Mirena because I was suffering bleeding. Turned out to be polyps that have since been removed so all is fine now. But I was fine on progesterone only mini-pill and on Mirena for birth control so I'm different to you. If the 200mg pessary proves too much for you, go back to taking it every night at the reduced dose and try that.

TiredMummy profile image
TiredMummy in reply to FancyPants54

Thank you FancyPants54, very sadly and for reasons I’ve never understood……I can tolerate the 200mg pessary vaginally better than I can the 100mg Utro when used vaginally. I’ve know idea why this is but I’d have to have a gun to my head to use 100mg Utro vaginally again at this juncture. I can only assume it’s something very weird like the composition of the two are slightly different (aside from dose) which causes them to disperse differently in the body. I have absolutely no idea of course and dearly wish I could tolerate the 100mg Utro. I’ve tried progesterone cream, progesterone lozenges, a coil, Utro 200, Utro 100 and Utro 200 is the best of a bad bunch for whatever reason. I’ve tried taking Utro 200 for 7 days a month, 14 days a month, 21 days a month, every other day, every 3 days you name it. I’ve been trying to solve this misery now for 10 years. I was on 5 pumps oestrogel under a certain clinic and now I’m on 2.5 pumps. I can only hope that things will be more bearable with the Utro 200 once my thyroid hormones are at a better level. I’m also praying that when I stop the Utro for a bleed that the rollercoaster I then go through won’t be as bad. If it is…….I think hysterectomy might have to be an option so I can be on oestrogen only. Both my mother and older sister had to have hysterectomies so unfortunately hormone troubles run in the family. I really don’t want to have one particularly as my sisters went ‘wrong’ & now she’s registered disabled.

FancyPants54 profile image
FancyPants54 in reply to TiredMummy

Oh dear I'm sorry to hear that about your sister. Is an ablation a possibility? They do those to fix heavy periods. Not sure if they can be used to stop lining thickening with HRT but think that's what they do them for. Worth finding out more.

How odd that you can tolerate the 200 better than the 100! It's the same stuff. Could it be the way the capsule is made? No idea.

They say transdermal oestrogen doesn't affect thyroid meds. But I beg to differ from tough experience. However I think the issue comes with the higher levels of oestrogen the specialist clinics use. My thyroid isn't optimal at all. And the way I'm going it looks like I might end up T3 only. I'm down to 50mcg Levo now and up to 60 T3. Still really fatigued but a bit better than I was and have just had a really tough physical working weekend and survived, so I think I'm going in the right direction. But when I increase my oestrogen I feel much worse. I don't notice it, because it's a gradual change, but suddenly I realise I can barely walk for the pain in my legs and how swollen they and my feet are and I get breathless easily. If I then reduce my oestrogen those things reduce a lot. I still have very painful feet and issues with my legs but not the same amount of swelling and not the barely able to walk feeling. What I'm left with is the hypothyroid leg and feet issues I'm pretty sure of that now.

So I've had my oestrogen blood readings over 4000 and been barely able to walk at all. And recently I've had them over 3000 and suffering again. Now I've decided enough is enough. Perhaps I can't tolerate high oestrogen because of my thyroid, but I'm better on less. I love the Lenzetto spray oestrogen. It's better for me than the gel or patch, and so I'm using just 2 sprays a day now and feeling better than I have for a while. Provided my blood levels are over 250, I should have bone protection. That's what I'm now aiming for. I love the HRT clinic, but they think every problem is low oestrogen and it's not. They ignore thyroid really. Give it a passing lip service. I think it's more vital than that and they are missing a trick.

TiredMummy profile image
TiredMummy in reply to FancyPants54

I haven’t considered ablation but I’ve added it to my list of things to look into so thank you HUGELY for that. Really sorry to hear you are struggling with getting your thyroid medication right along with your HRT dosing, I TOTALLY sympathise and sending virtual hugs. Its blinkin DREADFUL! I remember when I was diagnosed with Hashimotos (I was 40 and had just had a baby) and someone said to me “hold onto your hat for the menopause” I now know why. How I feel, and how many of us feel right now is totally unworkable and totally unacceptable. Quality of life shouldn’t be this low really.

My oestrogen level was tested about 2 weeks ago and it was 105. I’ve been on 2.5 pumps oestrogel but think I need to increase it. One annoying issue is I’ve seen a different specialist who uses saliva testing and she says my oestrogen levels are ‘fine’ if anything a little high. Hmmm…so the insomnia, dry down below and flushing aren’t low oestrogen….? I never know who to believe. It sounds like conversely your levels may be too high so whether transdermal or not…..your levels are perhaps currently high enough in your body to cause utilisation issues with your thyroid medication. Getting the balance right is the key but it’s the most difficult thing in the world to get right! I would keep on the reduced amount for a while and go by your symptoms rather than anything else. No-one knows what medication or dosing feels in your body other than you. That’s why I’m glad I posted again on this forum and Greygoose was kind enough to help sort the woods from the trees for me. I’ve hardly been able to stand up after taking my thyroid medication which I don’t think the specialist was quite grasping. I’m not feeling good by any stretch of the imagination but I’m still coming down from far too much progesterone (again, the specialists advice) and adjusting the having much more T4. I’ll tell you what though, just coming off progesterone and adding in more T4 has made me feel like I’m going in the right direction far more than all the adrenal supplementation she asked me take to help with the ‘adrenal’ crashing……I’m not convinced my adrenals are the issue….they are probably suffering a bit but will continue to do so until the root cause is addressed which I’m hoping right now is too low T4 & oestrogen and too high progesterone.

TiredMummy profile image
TiredMummy in reply to greygoose

Hi Greygoose, excuse my hypo brain but I just wanted to check something for my understanding.

I only wanted to check for 2 reasons….

1) you mentioned my free T4 looked high so wonder if that’s why the doctor recommended 75mcg T4 + 15mcg T3 day one and then 20mcg T3 the next (with no T4) and to kept alternating like that (which I did for 8 months). I felt very hypothyroid on this alternating dose but just wanted to check this aspect with you if you don’t mind.

2) you mentioned ideally we should be increasing T4 by 25mcg increments and I’m now on 100mcg T4 + 15mcg every day. This is an increase of 25mcg for the days I was taking T4 previously but I guess a 100mcg increase on the days I wasn’t taking any T4 at all. I presume this doesn’t matter & I don’t think I’m feeling any adverse effects at the moment. It felt like I was very under medicated on the alternating routine, even more so than when I was on 75mcg T4 +15mcg daily so increasing the T4 to 100mcg makes sense to me. I re-tried 75mcg T4 +15mcg T3 for a few days after trying to come off the alternating routine and felt extremely hypothyroid and totally desperate for more thyroid hormone. I’m not looking for anywhere close to feeling normal at the moment btw, just wanted to check for my understanding.

Thank you!

greygoose profile image
greygoose in reply to TiredMummy

1) you mentioned my free T4 looked high so wonder if that’s why the doctor recommended 75mcg T4 + 15mcg T3 day one and then 20mcg T3 the next (with no T4) and to kept alternating like that

I have no idea why he recommended that. But I suspect because he was out of his depth and didn't know what else to do. But there's no solid logic behind that recommendation.

This is an increase of 25mcg for the days I was taking T4 previously but I guess a 100mcg increase on the days I wasn’t taking any T4 at all. I presume this doesn’t matter

The alternating regime was such a mess that there is no logic way out of it, apart from stopping everything and starting again. But, if you feel ok on what you're doing now, then fine, continue. The important thing now is to stay on a steady dose, with no more changes, for at least six weeks, and see what your next blood tests say. And, how you feel, of course. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Thank you Greygoose! That makes sense. I’m off work this week & look forward to getting through the next 6 weeks so I can get a test. I’ll share the results when I get them. Would you recommend a finger prick test I can order via Blue Horizon or whoever or a proper blood draw? Finger prick test would obviously be more convenient.

greygoose profile image
greygoose in reply to TiredMummy

As far as I know, finger-prick tests are perfectly fine. I've never done one myself, but many, many people on here have. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Hello Greygoose, I hope you are well. I just thought I’d update you on my situation and get a little advice. I’ve been on 125mcg T4 now for 25 days and still feeling very hypo (sleeping in the day etc). I’ve been having a hard time as trying to settle down into a revised HRT regime as well. This has made me confused with what is causing symptoms (mid am crashing) and has led to me sometimes taking 5mcg T3 & sometimes not. So for example, could hardly get out of bed today, went back to sleep 9:30am etc. This feels most definitely like hypothyroidism to me and will be trying 5mcg T3 later today to see if that helps.

My main question is, can I still have my bloods done in a couple of weeks time (when I would have been on T4 125mcg for 6 weeks) or does the clock keep re-starting until I settle on a T3 daily dose or none at all for 6 weeks? I’m hoping i can still have my bloods done in 17 days, after 10th June (started T4 125mcg on 29th April) as it feels like a need a lot more of something right now but I just don’t know what it is……Thanks for your help!

greygoose profile image
greygoose in reply to TiredMummy

The clock keeps restarting, I'm afraid.

What's more, taking T3 from time to time is a really bad idea, and could be making things worse. It doesn't work instantly, it's not an aspirin. You take a tablet of T3 this morning and it could be a couple of days before it actually gets into any cells. Meanwhile, the body is confused: why does it sometimes have enough T3 and sometimes not? You have to be on a steady daily dose of T3 for it to have the desired effect. And, stay on that dose for six weeks before testing. :)

TiredMummy profile image
TiredMummy in reply to greygoose

I thought that was probably the case but hoping not! I’ll try 5mcg T3 daily for a few days at least to decide what I’m going to stick at for 6 weeks. I’ve been crashing really badly mid am (nausea, extreme fatigue) & historically this has been amplified if I take T3. It could be my adrenals are weaker than I thought or it could have been HRT interference. I’ve changed my HRT regime to minimise any interference now as much as possible so will see if the T3 makes things better or worse after 3-4 days and decide what I’ll stick with for the next 6 weeks. I’ve found I’ve gotten on better with T3 when I’ve taken it in the afternoons rather than the mornings so I’ll start taking it in the afternoons for now & see how I go. Blimey, I hope I get there one day…..feeling like I can live a normal life that is!

greygoose profile image
greygoose in reply to TiredMummy

3 or 4 days really isn't long enough to tell. Your body has to have time to get used to that daily income of T3 before it will loosen up and relax, so to speak, and open up those receptors that it closed down when there wasn't enough T3, and it had to priorities organs like the brain, and the heart. That's what causes symptoms, the switched-off receptors.

TiredMummy profile image
TiredMummy in reply to greygoose

“Switched off receptors”….I wonder if that’s what you think might cause the amplified crashing I get when I take T3. It certainly feels like it ‘doesn’t go in’ & leaves me feeling like a toxic waste dump…..Either that or my adrenals are shot?

greygoose profile image
greygoose in reply to TiredMummy

No, I don't think it's that because T3 doesn't do anything unless it attaches to a receptor. Could be low/high cortisol, or nutritional deficiencies.

TiredMummy profile image
TiredMummy in reply to greygoose

Looking at my adrenal stress profile, my cortisol is above range from mid morning and gradually comes back in range by 11pm. I’m fast asleep by 9pm if not earlier (due to fatigue) so no problems with going to sleep. I wonder if unstable blood sugar is causing my crashing in that case. I never eat sugary cereals for breakfast (pancakes made with brown rice flour, organic eggs & almond milk with a few berries as an example) but perhaps need to add in good stable mid am & mid pm snacks (hard boiled egg, nuts, seeds etc) to try and keep blood sugars more even. Stupid question but I presume it makes no difference what time I take T3 in relation to my cortisol pattern? Wondering if it will makes things worse if I take it mid am when my cortisol is highest…..Will stick to afternoons for now but keen to get on a stable dose so I can get tested! If I move the timings of my 5mcg T3 dose over the next few weeks from Mid afternoon say to mid morning…..will that re-set the clock for another 6 weeks or are time modifications like this not enough to upset the results?

greygoose profile image
greygoose in reply to TiredMummy

No, it won't reset the clock, but seems to me there have been far too many changes, recently. Which is not good. So, best to move your dose to where you want to take it, and keep it there.

I'm afraid I know nothing about blood sugars.

TiredMummy profile image
TiredMummy in reply to greygoose

Ok, I’ll see how it goes with the mid pm dose for 5mcg T3 and eating to stabilise my blood sugar levels better. Thank you again for being there, it makes a massive difference 🙂

greygoose profile image
greygoose in reply to TiredMummy

You're welcome. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Hi Greygoose, ok, I’m getting there with my understanding, the hard way. I’m starting to feel significantly better and that’s because I’m fully suspecting I can convert all the T3 I need on my own as long as I have enough T4. I had to stop the T3 as it made me feel significantly worse, it always dose. As soon as I past the 3 day mark with no T3 & increased my Levothyroxine I felt better. I’m now on day 6 of 150mcg Levothyroxine & starting to feel better already and able to get through the day without being in bed for most of it. I’m fact, I didn’t go to bed once yesterday and was able to get through the day without sleeping and feel much better this morning, sleeping better at night etc. I will see how it goes & what my bloods say in 5.5 weeks time & post them on here. Doesn’t T3 lower T4? If my body wants to convert all on its own, which I think it really does, then this would explain why T3 always makes me feel terrible. It lowers my T4 therefore hampering T3 conversion levels I need and my body will NOT accept the synthetic T3 (although it loves the synthetic T4). I’ve tried it so many times over the years (some times for over a year) and it always ends in disaster. The best I’ve ever felt is when I was on 125mcg Levo only but that wasn’t getting my T3 levels optimal so I’ve taken a gamble and increased it by 25mcg to 150mcg and to my delight….it seems to be working 🙂 It was over 3 years ago that I was on 125mcg T4 so I’m guessing my needs may have changed but I may well need to reduce it if it makes me feel hyper but my pulse is still reliably steady so far but will keep an eye on it & see how I go.

greygoose profile image
greygoose in reply to TiredMummy

Well, that's very good! Great that you've been able to experiment and find what suits you best. That is a problem with doctors, they don't usually allow the patient to experiment with doses, they like to keep a tight control. But, a lot of the time, the patient knows best! After all, the patient is living in that body, not the doctor. :)

TiredMummy profile image
TiredMummy in reply to greygoose

Yes, I’ve increased it on my own back and hoping the test results, backed with an improvement in symptoms and some research on why I need high T4 will convince my GP to up my dose. I’ve got enough to see me through to the Medichecks test until then. I’ll do a separate post about the research as someone sent me a link a long time ago & it convinced my GP to let me try 125mcg from 100mcg which gave me good improvement back then. I’ll try and find this again and see what my test results say but I’m so pleased my brain is starting to function again & im not sleeping all day!!!! 😀

TiredMummy profile image
TiredMummy in reply to greygoose

Hi Greygoose, just to update you, I saw my GP earlier this week armed with a Q&A paper by Professor Toft. This basically explains why some patients need out of range T4 in able to convert enough T3 naturally and that they shouldn’t be considered as over medicated unless their T3 is out of range. Anyway, he has agreed to up my Levothyroxine dose from 125mcg to 150mcg as a result which is good news! I’m having the Medichecks advanced thyroid test done when I’ve been on 150mcg for 6 weeks & will share the results with my GP for review. He did say that his only concern was it could make me ‘thyrotoxic’ which he said was the stage before becoming hyper. He said we need to keep an eye on your Levothyroxine not getting too high as it can lead to other health issues with osteoporosis being the number one concern. I will post my results on here in July but wondered what you thought about this response in the meantime?

greygoose profile image
greygoose in reply to TiredMummy

Oh dear. Glad you got the increase in dose, but your doctor does need educating! I wouldn't swear to this but I don't think thyroid toxicity is the stage before hyperthyrodism. I would have though that it was much more than hyper. And, in any case, it wouldn't be the T4 causing it. Nor does T4 cause osteroporosis. I wonder if he actually knows the difference between T4 and T3? A lot of them don't - surprising as that may seem!

Anyway, if you have conversion problems and are on T4 only, you're hardly likely to have an FT3 high enough to cause osteoporosis! They are so terrified of hormones!

TiredMummy profile image
TiredMummy in reply to greygoose

Hi Greygoose, I hope you are well & managing to stay reasonably cool. I hope you don’t mind but I thought I’d update on my latest test results after trying 150mcg Levo from 125mcg. I’ll post the link below but if you remember you helped me out of a horrible hole when I’d been alternating with Novothyral 75mcg one day and 20mcg T3 the next for a good while.

I switched back to 125mcg Levo only as my test results on that dose (albeit 3 years ago) were pretty good. My latest bloods show I’m probably now over medicated on the 150mcg.

I was a bit surprised on the response to my test results to be honest as I obviously wrongly assumed I would only be over medicated if my T3 went out of range. Anyway, I’ve followed the advice on the latest string and reduced my Levo to 137.5mcg daily for now.

Although I don’t feel brilliant, I feel a lot better than when I first emailed you! I’m so glad I took your advice as I’d much rather be where I am now than where I was then - I can’t thank you enough for that! I’d value your opinion on the results also if you have a moment at some point. Thank you hugely, as always. healthunlocked.com/thyroidu...

greygoose profile image
greygoose in reply to TiredMummy

You're welcome. I'll have a look. :)

JAmanda profile image
JAmanda

I’d just add in a bit more t3. Getting my T3 high in range helped me a lot. As to the hrt if it’s through the skin I don’t think it’s meant to affect thyroid meds absorption. I take hrt gel etc

TiredMummy profile image
TiredMummy in reply to JAmanda

Thanks JAmanda, I suppose you mean 100mcg T4 with 20mcg T3 daily (not 15mcg T3)? The reason I was weaning off the oestrogel was really because I can’t find a progesterone or routine that suits me. What progesterone do you use & have you had any issues with it? I decided to try 15mcg T3 this morning all pre breakfast & it went in no issues…..when I was progesterone….whole different story but then my T4 has also been too low at this time so could have been playing into the mess. I’ve just looked back actually to see how long I’ve been on the 75mcg T4 one day with T3 & no T4 the next (just T3)….it’s been eight months! No wonder I feel so bad! I went to see my opticians on Friday as I’ve felt my sight has deteriorated & she was horrified. Apparently my sight has deteriorated by what she would expect to see over years….not 6 months. My dexterity has also gone, can hardly pick anything up remotely small. Of course I’ve flagged these issues but the response I had was it’s my adrenals & reverse T3.

JAmanda profile image
JAmanda in reply to TiredMummy

I read on here about people having issues with progesterone but I don’t know what or why. I take utrogestan and oestradiol and have never thought it caused me any issues. That said, what would I look out for?

TiredMummy profile image
TiredMummy in reply to JAmanda

If you don’t think it causes you issues then I wouldn’t worry about it & feel very grateful tbh. For me, it builds up in my system and stops my thyroid hormone from working if I let the levels get too high I.e. I cannot tolerate any amount of T3 without feeling extremely ill. It also causes me issues following the withdrawal bleed in that I also crash severely after taking my thyroid medication (2-4 hrs after taking, as in I can hardly stand up). I’m hoping now I’m on a lower Oestrogel dose, I will cope better with the withdrawal phase. I’ve tried conti - doesn’t work for me as progesterone builds up too much.

JAmanda profile image
JAmanda in reply to TiredMummy

Ah I don’t do the withdrawal bleeding. I take progesterone every day. I’m not saying you’re wrong but I find it hard to know what causes a symptom. So I think it’s one thing then think it’s another. For me I found it hard to take small amounts of T3 split across the day and only when I took it all first thing with my Levo could I tolerate it. I take 100/25 of Levo/lio. I then take the hrt at night. I’m pretty happy with all my levels except my folate is awful so gets loads of symptoms because of that (which in the past I put down to my thyroid levels not be perfect).

TiredMummy profile image
TiredMummy in reply to JAmanda

That’s interesting. What type of progesterone are you taking?

TiredMummy profile image
TiredMummy in reply to JAmanda

Also, I hope you don’t mind me asking but why do you take your HRT at night? It this just because you take the progesterone at night? Ladies on here have confirmed there are no interactions with oestrogel and thyroid medication so I’ve gone back to taking my oestrogel in the mornings shortly after I’ve taken my thyroid meds. What type of oestrogen do you take? I get your point totally about not knowing what’s causing the issues but I’ve tried almost every type of progesterone now and had major issues. It could be when I’ve been on more optimal thyroid hormone replacement that I tolerate it better and I am praying for that but the menopause forums are brimming with women having dreadful struggles with progesterone like me and the vast majority have no thyroid issues. Im hoping one day I’ll get there because having issues with progesterone and a thyroid problem makes you wonder what the point of being alive is on many days unfortunately.

JAmanda profile image
JAmanda in reply to TiredMummy

I’ll have a look at the menopause forums but i find hrt all fine. I just have a night time routine there that’s all - maybe thinking you should take them together. Plus I do like to leave a long gap after taking thyroid meds before eating and a bigger gap before any vitamins etc or anything that could affect absorption. I’m sorry you’re feeling rotten. We’ll get there!

FancyPants54 profile image
FancyPants54 in reply to JAmanda

You would know if it were causing you problems JAmanda

It can give people terrible depression or suicidal thoughts or really low mood etc.

JAmanda profile image
JAmanda in reply to FancyPants54

Ah I’ll do some research. I am pretty moody but have put that down to low folate or multiple other things!

Roadrunnergreg profile image
Roadrunnergreg

Usually when I see high RT3 I think of adrenal fatigue and high cortisol, and I'd say get your cortisol tested plus nutrients like Zinc for cortisol balance that also needs to be in balance with iron and copper and Usually recommend all 3 to be tested in your case plus the Cortisol levels, I might be wrong but in my experience it's where I'd start. High cortisol can suppress thyroid hormones hence the low FT3 and high RT3

One of the first signs of iron deficiency is chronic fatigue/exhaustion, so there can be a few things out and why your body is struggling

TiredMummy profile image
TiredMummy in reply to Roadrunnergreg

Hi, my cortisol test wasn’t too bad at all from memory but I will dig out the results. I take zinc and iron daily along with a good multi which I think has copper but will check. Thanks for the feedback, it’s worth considering all options.

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