I have been put back onto levothyroxine as the endo I saw said my t3 was too high at 3.8.
I had previously been on nature thyroid and when I first saw this new endo my t3 had been 5.2 in April. 4.00 in May. He saw these results and kept me on the NDT.
Then in mid June after another round of blood tests ( was still on NDT) he phoned me and said I had to go onto levo 100mcgs as t3 was too high!!!!
I've been feeling increasingly bad over last 12 weeks.
Started when I stopped a beta blocker (just before I had to change to levo - I changed to levo two weeks after stopping the beta blocker)
Anyway. Long story short......... I now feel chills running all up and down my body when sitting still. I'll then sometimes get a hot flush (I'm at least 13 years post menopause)
When I stand to get up my legs feel like jelly, all weak and wobbly.
If I exert myself in the slightest I get the sweats. My legs and arms were going weak etc.
I now find my legs and arms feel weird all the time now. When I wake up in the night I can feel they are like they don't belong to me.... Weak but with a numb heavy feeling.
I go to bed and even snuggled under the duvet I get these cold chills running up and down me.
I am finding it really hard to get off to sleep now. I wake up in the mornings and all these physical things start all over again.
The 2 grains nature throid I was on was equivalent to 130mcgs levo and hes dropped to 100mcgs
My results are as follows
TSH 1.26(.035-4.57)
T4 17(9-19)
T3 3 (2.79-5.57)
Can someone please tell what the devil has happened to me since changing over????
I've been on other thyroid forums and getting told my t3 is too low.
I am desperate and can't stand this anymore.
I was very active. Had an active job which I love but have been off sick since mid June due to all this.
My morning temp is 36.4 and I've just done it again now and it's 36.8.
Oh I forgot to say..... My previous endo put me on combo first, then straight t3 and then nature throid. Her reason for this was because when u first saw her I had tsh 5.28 t4 was 24 over range (top being 19) and t3 was 2.9 so said nit converting.
Do you think this could be happening again?
Never felt symptoms like this in my life
Written by
130396
To view profiles and participate in discussions please or .
When we take T3 only or NDT our T3 will be higher than the blood tests which, I believe, were introduced for the use of levothyroxine alone which is T4 and no T3.
When our dose is altered due to the TSH alone, it can create problems for the patient. Your symptoms sound hypo now. It depends on what NDT you take as it can be between 75 and 100 equivalent to levo.
This is a link and the first question/answer may be helpful.
Thanks for your reply. I WAS on 2grains nature throid. Each grain = 65mcg so equivalent to 130mcgs levo.
I have now been put back onto 100mgs levo. As I said ... Endo said T3 was too high at 3.8.
Im not sure if my post was clear...endo was going by t3 level then of 3.8 ( although he was OK with the previous two higher levels of t3!!!!)
Now since being BACK on levo I've developed all these awful physical symptoms and my t3 is now down to 3.00.
Though tsh is under 2 and t4 17.
So maybe you can read my question again as I think I may have conversion issues cropping up again.( the reason I was taken off levo only by another endo as she said obvious conversion problem)
What would you do if you had these symptoms? Would you go on to combo again?
Is it the low end t3 giving me these symptoms as didn't have them when on NDT, t3 only or when on combo.
I desperately need to know what to do.
It's giving me extreme worry and can't get it off my mind cos I feel like this all the time.
Haven't been able to work since this started. ....
The t3 result was when I was on nature throid NDT not the combo result... Sorry if I confused you!!!
Could I still go back onto combo though. I felt quite confident in taking that.
I never was 100% happy about taking NDT.
From what I can remember when I was on combo t4/t3 my t3 was 3.2 so the private endo I was seeing then put me onto t3 only 40mcgs and it only raised t3 to 3.7.
Then she put me on NDT.
I must say that even on the combo, t3 only and NDT I did not have these symptoms. I've never had symptoms like this in my life.
Im wondering if my body liked getting direct t3 in some form and is now objecting to having to go back to levo.
I hope I've clarified that the 3.8 was when on NDT.
3.7 when on T3 only
3.2 on combo
2.9 when on levo only (100mcgs up until August 2013 - that's when I first saw private endo who said "not converting "
It's was NHS endo who has put me back onto levo.
Does this info help clarify and what would you now suggest?
Do these peculiar symptoms indicate due to the T3 level.
I getting myself in knots here not knowing which way to turn!!!!
Nature-throid - although 65mcg it is the equivalent to levothyroxine of 100mcg so you in fact were taking around 200mcg of levo with Nature-throid. In effect he cut your dose by half straight away and you are suffering badly now. This is the conversion chart and read the para at the top of the chart. It explains why Nature-throid is equal to 100mcg levo.
I would start taking Nature-throid again as you are too ill. If he wont prescribe you will have to buy it yourself. Or phone and leave a message for him. Take your pulse and temp first thing (before you get out of bed). Your T3 which is the active hormone we need but T4 being a prohormone which should convert but maybe doesn't sufficiently. If T3 too low our body/brain cannot work effectively.
I was awful on levo and would not like others to have the same experience. If your other Endo said you have a conversion problem you have. Also the Endo you consulted cannot use the 'normal' ranges which are for levothyroxine alone and because NDT contains T3 it will be higher than the levo 'normal'.
I cannot believe that!!!! So is that REALLY why I feel so I'll?
Can you pass this chart on to Clutter please.
To be honest, I wasn't keen on being on "pig thyroid " so I'd rather add T3 again.
Clutter suggested I do this.
Even on 2 grains my t3 still wasn't that good at 3.8 so I think that confirms I'm not a good converter as it would seem the t4 in nature throid wasn't being converted very well either.
THANK YOU FOR SHOWING ME THIS.
I've been getting so worried about these awful symptoms that have developed since stopping NDT.
If you go onto T4/T3 your doctor must use the up-to-date Research. Go to page 80 on the following and read the first para which says it should be 3:2 (or the nearest combination which makes you well) i.e 60mcg levo plus 20mcg T3 (it will have to be 50mcg in this case as we cannot split T4 to 60). If the T3 you got was 25mcg then T4 would be 75mcg or slightly lower/higher - again whichever makes you feel normal again.
Your head must be spinning and hope you settle down tonight and see your GP soon or do a telephone call to him.
Clutter told me to take my usual 100mcgs t4 and add 10mcgs t3 in the mornings this week. Then next week add another 10mcgs t3 about 8 hrs after morning dose.
So what would that work out to be? Too much/too little?
All this thinking is making me feel worse!
Thank you so much.
Are you in UK???
You've read my symptoms....
What do you think is my problem?
Really been messed around over the last year.
Stopping the beta blocker then almost immediately changing back to levo has got me like this.
Though gp has put me back on 40mgs fast release one now. 10mg 4 times day but made no difference to symptoms except stopped heart banging.
Levothyroxine is a pro-hormone and also called T4 which should convert to T3. It may not do efficiently and some people cannot convert and some people have a gene defect which cannot convert at all.
T3 is direct and straight into cells, you're not taking T4 but you may have a tiny amount coming from your gland.
130396, FT3 3.8 is low, less than halfway through range 2.79-5.57. I suspect your endo has been 'got at' by his superiors or the CCG and told to stop prescribing NDT. Not much point in staying with an endo who thinks FT3 3.8 is high. Email louise.warvill@thyroiduk.og.uk for a list of member recommended endos.
You are experiencing hypo symptoms now because your FT3 3.0 is almost bottom of the range which is to be expected on Levothyroxine monotherapy when you have been identified as having a conversion issue. If you have T3 left from previous prescriptions add 10mcg to your Levothyroxine 100mcg for a couple of weeks, and increase to 20mcg if necessary. Most people feel well with FT3 in, or towards, the top third of range ie >4.5 in your range.
I did email Louise and sent her a private message.
The list is gp's only with interest in thyroid. Unless I'm reading it wrong??
So do you honestly think these symptoms are all due because my t3 us barely in range????
My whole body feels awful. Feels like I'm terrified of something. You know the fear bodily feelings when really scared?? That's what my legs and arms feel like
I don't understand why even when it's warm and I've been sitting in the sun, my skin has been hot but the chills are running right through me. Then I sweat like mad at the slightest exertion. Even having long conversation makes me go all hot and sweaty.
Every time I get up from sitting down legs are like jelly.
Would you mind just confirming the weird symptoms are the low t3.
Im on my own and got no one to talk to and re assure me.
Yes, absolutely the symptoms you describe correlate with low free t3. And possibly low adrenal function.
2 tablets (grains) of ndt at 65 mg per tablet is not equal to 130 of levothyroxine... Its nearer to 200 of levothyroxine, because each tablet contains about 7 mg of t3.....
All irrelevant really, if you cannot convert the t4 into t3 it doesnt matter how much you take, you will remain ill.
9 mg of t3 is reckoned to be equivalent to 45 mg of t4. The endo's used to drop 50 mg of t4 and replace it with 10 of t3. (Mg or mcg.... I never get them right ).
So a grain of ndt is. 45 plus 38. = 93 of t4.
There are claims that t3 is 3 times as effective, not 5 times..... But i am just going on how it used to be calculated by the endos.
Either way, 100 mg of levothyroxine, after being on two grains of ndt simply isnt going to do it for you....
Some say Lio is 3 x stronger, some say 4 x and some say 5 x
I think it depends on how liothyronine suits you, not how it suits your doctor.
If your body's been hammered by hypothyroidism for a while, it's likely it won't use the liothyronine (or Levothyroxine for that matter) very efficiently.
In my book, your Endonob has effectively halved your dose. That's why you feel like poo. Plus if your body can't convert T4 into T3 particularly well the effect of being denied T3 would be even more significant.
The reason I was put on t3 originally was because the endo I first saw said I was obviously not converting very well now after being on levo only for 28 years. She said this sometimes happens after years of t4 only.
At that time my tsh had gone up to 5.28 t4 was 22 (above range) and t3 was 2.7.
That's why she introduced t3. Then I was put on combo and t3 went up to 3.2. So she put me on t3 only and it Went up to 3.7.
Then she put me on NDT. At first I got t3 of 5.2.
Then it dropped to 4. Then it dropped to 3.8.
I then had a new NHS endo who said 3.8 too high and put me back on levo only...100mcgs
Rose, isn't it surprising that we practically have to take a medical degree in the Thyroid Gland in order to get well. I agree with Clutter the head of your Endos Dept told him not to prescribe Naturethroid as per the guidelines of the BTA which are untrue about NDT. Would you also believe that from 1892 to about the 1950's that's all that could be prescribed and the first woman survive. Others died before NDT.
Hi, Here is a chart which shows the conversion rates.... There is disagreement about whether t3 is. 3, 4 or 5 times stronger..... But either way, you are now most likely, undermedicated.
Rose, when switching from Levothyroxine to NDT the manufacturers claim the 38mcg T4 + 9mcg T3 is bioactively equivalent to 100mcg Levothyroxine. This is a 'safe' estimate for transition guidance and most think it is overstated and the bioactive equivalence is nearer to 75mcg.
The manufacturers also base their estimates on T3 being 4.12 stronger than T4 so 9mcg T3 = 37mcg T4.
The argument about whether T3 is 3x 4x or 5x stronger than T4 only becomes important if an endonob slashes 100mcg Levothyroxine to 50mcg to add in 10mcg T3.
Rose, you'll be getting 20mcg T3 instead of 18mcg in NDT so FT3 should be >3.8. If you feel well there, no need to target 4.5. If not, you may need a little more T3.
So as taking 20mcgs t3 it is likely to give me t3 >3.8 which is what it was on NDT.... Am I reading that right? And 3.8 is definitely too low? And my weird symptoms are due to low t3??
See, these ladt few weeks have really messed with my head.
Im usually very level headed but seems I need so much re assurance.
Rose, The list includes endos, unless you specifically requested private GPs. Louise is on a few days holiday and will, I think, be back in the office sometime this week.
Low T3 doesn't just manifest physically, the brain needs T3 too. Feeling fearful and apprehensive is probably due to low T3, and feeling cold to the core, even though skin may be warm to the touch, and weak limbed, are typical low T3 hypothyroid symptoms.
Rose, you're not going mad, but it probably feels like you are. That's going to be the first thing which improves when you start taking some T3. The brain will grab the lion's share of what's available before the body get's a look in.
I just had a real shock as someone here said I had effectively been reduced from 200mcgs levo based on t3 being 5 times stronger, and gone down to half now I'm back on100mcgs levo!!!!
Rose, you've certainly been reduced by the equivalent of 30-50mcg T4 which is a considerable reduction but I think the real harm is the lack of 18mcg T3 which is in 2 grains.
Rose, I suggest 10-20mcg T3 added to 100mcg T4. No need to reduce T4 because your FT4 is only mid range.
Your ideal FT3 level will be that at which you feel well. How did you feel when it was 3.2 and 3.7? Most people feel well when FT3 is in the top third of range and that would be >4.5 for you.
Rose, You've been used to 18mcg T3 in NDT so start with 10mcg taken with Levothyroxine for a week and then add a 2nd 10mcg dose 8-16 hours after the first. You'll have to experiment to find the best timings. I take mine morning and bedtime.
You know you felt better, if not well, with FT3 around 3.7 rather than 2.9 so around 4.5-5.0 may feel good. Not everyone's comfortable with FT3 top of range though, it can make some feel anxious and hyper.
I had dreadful insomnia when FT3 was below range. I was hallucinating after 3 days/nights without sleep and GP prescribed sleeping tablets. I think taking T3 at bedtime helps me sleep because I don't remember the last time I took a sleeping tablet.
Rose, if you're trying to persuade your GP to prescribe T3 in addition to 100mcg T4, have a fasting test (water only) at the earliest time the phlebotomy dept opens. TSH is highest that way and your GP more likely to prescribe when it's high.
Endo said all these physical symptoms..... Numb feeling in arms and legs, weak wobbly feeling. Cold chills, hot flushes. Hot sweats. Cold clammy sweats were all anxiety. Sometimes I get a woozy drunk feeling in my head too.
Dr did give me 15 mg diazepam for few days but all that did was totally wipe me out.
I still had the symptoms!!!!!
Things do feel worse when I'm getting stressed over the symptoms.
So do you still think it's because of the t3 now being 3.00???
Sorry..... You can tell this is all getting to Mr.
I've woken up with the numb arms and legs there straight away.
Rose, I meant I wouldn't trust anything told to me by an endo who said FT3 3.8 is high.
You said you didn't have the symptoms at FT3 3.8 so I think your symptoms are due to low T3. Anxiety is also a symptom of low T3. It becomes a vicious circle. The obvious thing is to raise FT3 and see whether symptoms improve.
Rose, Disclaimer: I'm not a doctor and I have expressed opinions borne of personal experience and research.
It was your endo who told you your physical symptoms are due to anxiety.
I have said that low T3 causes hypothyroid symptoms, including increased anxiety. In my opinion FT3 3.8 being less than half way through range is low, but if you felt well with FT3 3.8 it is not too low for you.
If you didn't feel well at 3.8 you may feel better with higher FT3 and the butterflies may resolve. I don't know at which level, but many people are comfortable with FT3 in the top third of range which will be >4.5 in your range.
FT3 3.8 is certainly too low for me and I feel well when it is >4.5. I also felt well with FT3 >8.4 but my hair started falling out so I reduced dose and FT3 now hovers around 5.0.
Some people do not feel well until FT3 is over range and may have to accept elevated FT3 increases risks of adverse future health outcomes in order to feel well today.
Yes it was the NHS endo who said my symptoms were anxiety BUT it was him who also said t3 of 3.8 was too high.
The symptoms I have had since reducing to 100mcgs are completely NEW ONE'S.
The endo I saw in Warwickshire, the first one I ever saw, said the butterfly feeling was due to not converting properly and my t3 was too low.
Maybe I haven't yet reached a t3 level that is good for me yet and possibly why the butterfly thing persisted???
But the new symptoms have definitely only been experienced since the reduction.
So far today I took 5mcgs T3 at 2pm and another 5 mgs at 6pm.
So many people have said low t3 causes anxiety type symptoms so maybe that is what has been wrong fir the two years prior to these recent symptoms.
When I started getting the butterflies I have NO IDEA AT ALL what my t4 or t3 levels were.
All I know is a year later I asked to be referred to the endo who said I wasn't converting.
At that time I got all 3 lots of tests done.
I was on 100mcgs levothyroxine.
Results when I went to her were
Tsh 5.28 ((.35-4.75)
T4 22(9-19)
T3 2.9 (2.79-5.57)
So I am thinking maybe my levels had been wrong for a long time and I've not reached the proper level.
I do know when the results came through at 5.28 my gp said to me if he'd gone by tsh alone he would have given me a dose increase, but, as my t4 was already above range it would have been the wrong thing to do.
It was at that point I asked for the referral.
I hope this all makes sense to you and you can follow it all.
Oh and I think the NHS endo who said my recent symptoms were anxiety is because it was him who took me off NDT and I got these symptoms start up. Think he's used it as an excuse to cop out of it.
Rose, I've been following what you've said. The thing to do now is to take T3 so that your FT3 improves and you'll hopefully see resolution of most, if not all, of your symptoms in the next few months.
I've just had this message sent through to me from a friend of a friend on my fb she sent it by private message and its really upset me. Other messages say I'll never get well as all the while I'm taking T4 it'll start pooling.
Here's what she said.....
Sorry can't copy it!!!!
Basically unless I get off t4 I'll never get well and it'll start pooling and t3 won't be able to get into receptors and cells.
She's apparently a big fan of Paul Robinson.
She says the only way to get well is t3 only and in order to get that right you have to do vitals every hour so you know how to dose
Rose, Tell your friend your thyroid results don't indicate T4 is pooling but do indicate poor conversion and you are adding T3 to T4 to improve FT3.
Beware friends enthusing about new thyroid treatments, new fangled diets and exercise regimes T3 only may be the right treatment for your friend but it isn't the right treatment for everyone, any more than T4 or NDT is.
Paul Robinson was unable to tolerate T4 and recovered on T3. He's written a couple of books "Recovering with T3" and "The Circadian T3 Method" (CT3M), has a website and FB page.
I did belong to that group but found it too domineering if that the right word?
I've been taking my temp since Sunday. On waking it's 35.9-36.4 and steadil y rises through to mid afternoon when it's 37c.
Also just done my pulse sitting on sofa and it's 92!!
Usually it's about 80.
Sometimes it's a bit lower. But not usually above 84....
Someone mentioned about being hot. Well although I get the chills and clammy sweats I can feel overly hot too so is this OK to feel overly hot sometimes.?
Oh and when T3 is lowish as mine indicates us it normal to not be good at handling stressful things.
Im usually very good at handling stress. No physical symptoms, but recently a tiny bit of stress makes me feel awful.
Rose, Isn't 37 a normal temperature? If you felt hot all the time it could be a sign of overmedication. It's unlikely you are overmedicated on 3 x 10mcg.
Check pulse in another hour or 2 and it will probably have dropped. Pulse does rise 1-2 hours after taking T3 and then subsides.
Low FT3 can make it more difficult to handle stress. Unfortunately, even though my FT3 is now good, I no longer cope well with stress and my heart races and thumps uncomfortably and I become breathless.
Rose, some people find improvement in symptoms within days but it can take longer, weeks, for some. After a week, when you know you're okay on 10mcg, you can increase to 2 x 10mcg and should then start noticing improvement if you haven't earlier.
I had considerable improvement in brain fog and mental clarity within a week but none whatsoever in physical symptoms after 6-8 weeks. I had to clear a build up of T4 with T3 only before I was able to recover on T4+T3.
Rose, your body will have been converting T4 in NDT as well as getting direct T3. It probably didn't like not getting direct T3, but its getting it now, although it hasn't had enough time to realise it yet
I suspected I had a build up of T4 when I felt better after being taken off it for 4 weeks and worse when it was resumed. 8 weeks off T4 didn't improve symptoms so I stopped T3 for 4 weeks too. It sped up clearance and symptoms began improving in the second week and resolved by the end of the third week. A week later TSH was 107.5 and I thought it time to resume T4. Had adverse effects within 8 hours, worse next day, took 20mcg T3 which calmed it all down and I've been on T4+T3 since.
Rose, unfortunately no help from endo who said Levothyroxine couldn't cause issues which is when I decided to sort things out.
I was 90% bedbound with fibro pain so bad I couldn't lift my arms to comb my hair, muscle wasting and weakness, COPD symptoms, severe unremitting palpitations, dizziness, weakness, internal and external tremors, cold, insomnia, brain fog etc. ECGs, chest X-rays, and spirometry ruled out heart and lung problems so I was back to my suspicions about Levothyroxine which proved true.
GP tests showed severe vitD deficiency, folate deficiency, low B12 and high ferritin. Endo wouldn't test because FBC was good "so they had to be fine". I didn't start supplementing until I'd sorted out the Levothyroxine thing, and hip and knee joint pain which had been bothering me improved after vitD3 loading doses.
Rose, Support was freely offered but I'm afraid I pushed it away, I tend to withdraw into myself when I'm ill and prefer being left to myself. There was no point in discussing it with anyone who wasn't experiencing similar difficulties.
Because I was mostly bedbound I spent a lot of time researching thyroid online. I couldn't tolerate continuing as I was, and didn't feel I would make things much worse, so I made the changes. I know now that it was premature to stop T3 after only 8 weeks off T4 but it sped up the clearance and eventual recovery so I don't regret it.
I've just been to Dr's to see what the results were from the blood tests I had done Monday morning ( before I'd added the t3 so this was based on 100mxgs levo)
TSH 1.85(0.35-4.75)
T4 17.1(9-19)
T3 2.9(2.69-5.57)
As you can see, my t3 is even lower now than from my original post.
Also TSH has gone up.
So would you say I'm definitely right to be adding the t3???
Rose, TSH has gone up because FT3 has dropped. Definitely right to add T3 and to increase dose to 12.5mcg next week, and, if you aren't having symptoms of overmedication, to 18.75mcg the week after.
Rose, consistency is always recommended but I've never been that regular with mine and would sometimes take it at sparrows fart and other times mid-day. Some people feel the T3 wear off and for them regular dosing will be better. When you're optimally medicated you're less susceptible to the peaks and troughs when taking T3. Good luck with the GP tomorrow.
I said well mine.... I said as you can see my t3 is clearly dropping since being back on levo. I said it's now 2.9. He said t4 is good in range and tsh doesn't look too bad.
I said, if you remember, when I was on 100mcgs levo just over year ago ny tsh was 5.28 and you said based on that only, you would have given me an increase, but because I'd asked for ft4 and ft3 to be done you said you couldn't give me increase because t4 was over range and t3 was just about in range. I said that's when it was decided I needed to see an endo(the first one I ever saw, who said as soon as she saw results said I was obviously not converting)
I said based on a good t4 now and a dropping t3 surely that means I'm running into sane problem
He said possibly.
I said bear in mind I have inflammation and inflammation inhibits conversion of t4 to t3 the active hormone.
I think he could see what I was saying. So he agreed to a trial.
He said "if your symptoms were due to anxiety, the diazepam I gave you a couple if weeks ago would have eliminated all the symptoms "
He said thyroid has a lot of symptoms, so basically, I think he thinks the low t3 could be responsible for my symptoms since changing to levo but couldn't commit as it would make endo look stupid.
I said to him you know these things have happened since going back in levo.
Crikey. Concentrating on this has made my head feel really woozy!!!
Hope I've explained things so you can understand what I've said.
You will either get 20 microgram tablets of the usual Mercury Pharma liothyronine and be expected to split them. Or the pharmacy will put in a special order for 10 microgram product, probably capsules, at an even more incredible price. Further, they will likely have a 28-day expiry date from when they were made. That has been reported more than once here! (I suppose there is an outside possibility of them dispensing special import 5 microgram tablets from the USA.)
Rose, early days yet, levels will increase gradually. Brain will grab the lion's share of T3 at first which should help with the anxiety, and after that the rest of the body gets a look in and physical symptoms will improve.
Is it OK to stay on as much levo as I am taking and adding the t3 to it.?
I think I've been OK taking the 10mcgs that I added last Monday.
The reason I ask for is because Paul Robinson has just sent message to people in his group saying that all the while people are taking T4 then t3 won't work.
He is saying that you need to transfer to t3 only and until vitals are stable t4 or NDT cannot be used.alongside t3.
He is saying the inky time a LITTLE bit if t4 can be used is 8-12 weeks after clearing had taken pkace.
Im just concerned as I do seem to have a conversion problem and concerned that the t4 will build up and block t3 doing its job.
He says it can look like t3 is at a good level on blood results but still getting hypo symptoms as t4 has blocked the t3 getting to the cells.
I just wondered what you thought?
He keeps going on about vitals but mine seem pretty stable throughout the day anyway.
Am I worrying un necessarily.
I hope so.
Would YOYR advice still stand to stay on same levo dose and do it as you suggested and add another 10mcgs t3 on Tuesday making total of 20mcgs t3.
Rose, I think you're worrying prematurely. Adding T3 should improve FT3 and symptoms. If you aren't feeling better 6 weeks after being on T4 + 20mcg T3 with decent FT3 level, you might have a build up of T4, and that is when you should try T3 only for a few months.
Paul's advice is specically for people who have a build up of T4, or high rT3. I did have to clear T4 for 3 months on T3 only before I recovered on T4+T3 as I previously explained.
Is it very likely that the 100mcg levo I'm on at the moment will build up?
Or does adding the t3 help t4 to convert?
I ask because in.July of 2014 I was on 100mcgs levo only but my t4 went over range and my t3 was only 2.7.
That's when I then went to see private endo in Warwickshire. She straight away said I wasn't converting properly and put me on combo. She did however reduce levo to 50mcgs and added 20mcgs t3. But even that combo only took my t3 up to 3.2.
And 40mcgs t3 only took it up to 3.7.
I didn't feel particularly well then, but definitely not as bad as I feel now.
Can't exert myself at all without sweating. And it dripping down my face.
So, I go ahead and do what you planned for me.
Add another 10mcgs t3 in the afternoons or should this dose be split?
Rose, adding T3 will boost your FT3 and stimulate better T4 to T3 conversion. If the sweating has increased since adding T3 reduce T4 to 75mcg, and wait another week before increasing T3 to 20mcg. I prefer split dosing T3 morning and bedtime. 8+ hours after the first dose suits most people, you'll have to experiment to see what best suits you.
Rose, Your FT4 wasn't top of range so I think reducing T4 to 75mcg is enough. I think 50mcg your Worcs Endo reduced to was too much and was why your FT3 didn't rise much.
Why not raise T3 Tues and if sweating is worse go back to 10mcg while the T4 higher dose washes out.
I've been prescribed 300mg iron gluconate 2 x day 1 hr before food.
How long after taking my levo and t3 is it before I can take the iron.
Complicated as levo and t3 on waking so can't have breakfast for at least an hour but then have to take iron an hour before breakfast so would make it about 12 before I can have breakfast.
Then I've now added another 10mcgs t3 to take sometime in afternoon!!!
Rose, basal temp is usually low on waking and starts to rise as soon as you get out of bed. It will fluctuate during the day and 37 is normal, nothing to be concerned about.
I'm sorry your father is so ill. It's very hard having to settle him into a hospice and it's harder coping with stressful events when you aren't well yourself.
Rose, my understanding of adrenals is pretty much as you've stated but I don't know enough about adrenals and supplements to advise, which is why I suggested you post a question so those who do can help you.
Listen to your body and slow down until your thyroid levels and symptoms improve.
130396, FT3 3.8 is low, less than halfway through range 2.79-5.57.
The first endo I saw who put me on the combo then straight t3 and the NDT said that she would think the butterflies were a symptom of being too low on the t3 so now I'm getting really confused!!!!
Rose, I would start the T3 now and hope to report some improvement in symptoms at the appointment and If I was refused a T3 prescription (some GPs now need an NHS endo recommendation) I would buy T3 on the internet and self medicate.
Rose, Palpitations are common when undermedicated and T3 is low.
You were taking 18mcg T3 in 2 grains so I don't think you have to be so cautious. Try 10mcg. If it feels too much reduce the next dose to 5mcg. You may notice a slight raise in pulse and heart rate within an hour or so of taking it. It should subside within an hour to 90 minutes.
130396, FT3 3.8 is low, less than halfway through range 2.79-5.57.
The first endo I saw who put me on the combo then straight t3 and the NDT said that she would think the butterflies were a symptom of being too low on the t3 so now I'm getting really confused!!!!
Levothyroxine is useless for many people and is a pro-hormone. It's job is to convert to sufficient T3 to saturate our billions of receptor cells. It drives our metabolism and without sufficient we suffer.
Clutter has hit the nail on the head when she suggests the Endo has been 'got at'. The guidelines state no NDT.
This is an excerpt of a doctor who knew how best to treat painful conditions like hypo:
Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you."
The financial inducements refer to the money Big Pharma in the USA give to doctors to prescribe only their products.
It's such a pity you can't find your old endo, who seemed to know their stuff. Has he/she moved, retired, gone private? This new one seems like a waste of space.
The old private endo refused to correspond with my haematologist. Endo wanted me to take iron as saturation % was bit low. Haematologist asked her to give him the science behind this. She refused three times to communicate with him so I had to find another one.
Plus she was very expensive. The hospital where she works from is 263 miles away from me.
If she had co-operate I might have been in a better place now.
If the ranges were the same, T3 of 3.8 is LOW, esp if taking meds with T3 in them. Get an endo with a clue. It does look as though you have a conversion problem - a good level with those ranges would be about 4.8.
I always get my bloods done at the same hospital so ranges are the same.
Even when I was on straight t3 only my t3 only went up to 3.7 so the endo I saw in Warwickshire (263 miles away) said NDT would work better for me. Even though it was her who said when I first saw her and was on levo only, that I had an obvious conversion problem. So I didn't quite understand why she put me on NDT anyway as I would still need to have converted the t4 in it.
I became hypothyroid when I was 30. I wasn't aware I had a thyroid problem. Found in routine blood test.
I didn't have any symptoms of it at all. Very slim size 10. Loads of energy. Lovely thick long hair. Etc etc.
I am now 62 and it's only been in the last two years I've had problems. Started off two years ago with butterflies in my tummy.
Levo was reduced to 100mcgs(was 125mcgs) I then started to get hot flushes.
Dose reduced again to 75mcg. After this reduction I started to sweat profusely. Really really bad sweats.
Another blood test and I was increased up to 100mcgs. Sweats eased off quite a lot but didn't completely go. Still hot flushes and butterflies. I stayed on this 100mcgd levo. Then July 2014 blood tests came back tsh 5.28 t4 22(9-19) t3 2.9(2.69-5.57)
The private endo I saw then said obvious conversion problem. Put me on combo 50mcgs levo + 20mcgs t3.
Results of blood after this was t3 had increased to 3.2!!! So she put me on straight t3. After 3 months on this dose t3 increased to 3.7. Hence she put me on NDT.
At first blood test t3 was 5.2 next blood test t3 4.00 then last blood test on NDT t3 3.8.
I was by the time the 5.2 result was done, I had transferred to an NHS endo. He said nothing about the 5.2 or 4.00 result.
Kept me on NDT. Then I had another blood test and t3 was 3.8...... Got a phone call from endo panicking saying t3 too high!!!!
Start on 100mcgs levo the next day.
Since then physically I've been getting steadily worse. All the symptoms I listed in my original post started creeping in.
I then had blood test after being on 100mcgs levo for 6-7 weeks and t3 was down to 3.00.
Tsh was 1.26 t4 17.
Long story but I feel dreadful physically and it's now impacting me mentally as endo has discharged me and said all this is due to anxiety.
My endo says T3 blood levels are totally irrelevant and useless as they are not indicative of T3 at cellular level which is what is important and which they can't actually measure! (Why test FT3 then.) She is 'allowing' me another six months trial of T3. I asked for an increase in T3 as I felt better but not as well as I believed I could be, and she told me that her registrar had already prescribed me too much T3 (ie 10 mcg T3 after dropping Levo by 25 mcg). My T3 level was then just in range.
No doubt when I see her in December she will cease the trial as she believes my feeling better is only a placebo effect anyway! I have put forward all the arguments but all she harps on about is my slightly suppressed TSH which needs to be raised. I will definitely be self medicating if she pulls the T3.
Always have symptoms but never sure if it through lack of sleep due to increasing severity of RLS (although sleeping better now since taking T3!). Well, blood test on Friday and I will get those results and will then up my dose a bit if needed.
I have been keeping an eye on this post and still cannot make sense of things.
Is there ANY POSSIBILITY that there is confusion between Total T3 and Free T3?
For example, a value of 3.8 might look high as a Total T3 result but not as a Free T3 result. (Numerically, Free T3 is about three times the value of Total T3 using usual UK units.)
Doesn't look as if you, 130396, are confused but could the endo have got it wrong?
Make sure you are looking at the values for nmol or pmol. For Total T3, the top of range is shown as 2.5 or 2.7. That would make sense of your endo's comments. Perhaps he is used to a lab that does TT3 rather than FT3?
I was initially on 100 mg Levo then it was reduced to 75 mg and then 10 mg T3 qwas added by the endo. However, I have been self medicating with T3 and am taking 12.5 split morning and night. I feel better than I did, I even sleep better for the first time in fifteen years and have finally been able to lose weight more easily. I just feel that the T4 is a bit low and maybe if this were higher my FT3 would increase a bit too.
6.25 each dose. Last one before bed. All bloods taken first thing in am and before food or meds.
I might give what you suggest a go but a bit worried it might make me a bit hyper. I have been over medicated before with Levo and it took two weeks to get back to normal and it was awful.
Also been told to leave 12 hours before having blood tests. So your could be falsely high on t3 result as taken before bed.
At the moment I take 75mcgs levo and 10mcgs t3 on waking. About 6-7.30am.
I've only just started yesterday on taking 2nd dose t3 of 10mcgs.... I've taken it about 3pm.
Im a bit worried about taking it just before bed as might keep me awake.
Don't know if you saw my original post. But I have peculiar symptoms although I'm told they do match hypothyroid.
Im never tired but got several physical symptoms. I have read that when thyroid has been struggling for a while the adrenals try to help sustain energy by pushing out adrenaline. Seems to match my symptoms.
What I read said all this extra heightened energy goes once thyroid is properly dosed.
The ranges in brackets are those of the hospital lab where my endo is. Not sure of the ranges of the lab where my GP sends my bloods but I know it is different and I do remember T3 range via GP is 4-8. However, I mistakenly put brackets around my T4 result which is now 13.7 and it has been steadily going down since taking T3!
I have been told that T3 only last a few hours in the blood and it can vary at any time of the day, so I don't feel there is a problem about it being too high when blood is taken. In fact, it was once as high as 5.2 but has gone down since. I have not had a problem with taking it at bed time, in fact, I have slept better since I have which I initially thought was just a coincidence.
I have read right back through this thread and does seem as if you have been going through it. It seems to me that Clutter's advice is very, very sound and I know I would take it if I were you. Have you been taking the T3 as she suggested and, if so, do you feel better now?
Seeing my endo in December who is trialling me on T3 and I just know she is going to stop it as she kept banging on about it causing Osteporosis and that it has not been proved to make any real difference, which is why she would not increase it last time when I asked her to! So I got my own T3 and have been taking that as it is a 25 mg tablet so am taking 12.5 and not the 10 she prescribed.
The reason I asked whether I should increase T4 or T3 is because my T4 has got a lot lower since taking T3. I initially saw the endo as my GP believed I was not converting as T4 was as it was as high as 28 at one time with T3 at 3.9.
I've just started taking my second dose of t3 since Tuesday.
So far feel no difference. But I can only assume that's because my t3 at ladt blood result was only 2.9 so it has a way to go to get up to a decent level and I don't know how long that takes to build up.
I know t3 has a short life but it builds up in your system so maybe you should check with Clutter to see if you should miss the bedtime dose before blood tests.
I know I've been.told should be 12 hours before having a blood test.
Let me know what Clutter says.
Im taking my t3 mid afternoon as I already have trouble getting off to sleep.
But I never feel tired. I think these weird symptoms I get when I try to do anything other than sit. Is my bodies way of saying STOP!!!
Apparently it takes a while for T3 to have an impact. So I hope you will feel better soon. Does sound as if you symptoms might be your body telling you to stop.
I do know that T3 does not build up in the blood system and blood levels drop very quickly. This is why my endo says measuring blood levels of T3 does not indicate how much is acutally at cellular level which is what she says is important!
Hey ho, I think it's all trial and error and we are all individual.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
T3 only may be the right treatment for your friend but it isn't the right treatment for everyone, any more than T4 or NDT is. 
Low TSH with normal T3, T4. 
normal TSH and T3 but Low T4
Low TSH, normal T4 and T3
'normal' TSH and T4, low T3
