Reactions to starting T3: I have been told to... - Thyroid UK

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Reactions to starting T3

I have been told to introduce T3 slowly which I am, but only one person has said exactly how they felt. I was wondering if any of you could tell me what if any, your reaction was like. I upped it 1/4 yesterday and today I feel agitated and funny in my head. Kind of spacey I guess. Hard to describe. This happened the last time too so I’m putting it down to it.

Thanks.

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I thought you were taking an NDT. Have you swapped to T3 now?

I’m confused. I meant the T3 in the NDT. I thought that was what makes you feel bad if you aren’t used to it.

Thanks for replying.

So you need to get into the habit of referring to what you take in the form you are taking it, otherwise confusion ensues and you can get incorrect responses. :-)

You might comment for instance, that the ratio of the T4 to T3 in the NDT doesn't work for you, but when you are talking about the med you are taking, you refer to it as NDT. When people take synthetic T3 alone, they refer to it as T3, or some might say mono-T3 to identify it's not being taken with anything else; and when taking both synthetic T4 and synthetic T3 together they might say T4/T3 combo or just T3 and T4, to identify it isn't an NDT.

I recall when you started 7 days ago, that you were prescribed 30 mg, which was then increased to 45 mg. So when you say that you have increased by a quarter, what is the exact increase/what are you now taking? For you, it may be that you are increasing too quickly.

When I first added T3 to my T4, I took 20 mcg in addition to my 125 mcg T4 - that's what I was prescribed, and the PIL said "always take this drug as prescribed by your Dr" - so I did. I didn't expect a problem to ensue taking 20 mcg and it didn't. I felt/experienced nothing discernible, just a realisation over time, of feeling better. When I swapped from my T4/T3 combo, to Naturethroid, again I felt nothing discernibly different; nor when I swapped back again. So not everyone when adding T3, or changing how it is taken, will experience negative or noticeable effects.

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Thanks for replying. Why do some people only get T4? I didn’t realize this. I just did and took what I was told until I rebelled two weeks ago when my GP wouldn’t increase the Synthroid to see if I felt better at a lower TSH number. I only knew of NDT. Why did you swap back and forth?

I’m now up to 60 mg. Probably too fast an increase. I can’t keep running to the naturopath to ask questions because at 1 pound 78 Pense a minute it gets expensive. Plus tests like the adrenals cost 130.70 pounds. I also go to acupuncture every week and they want to increase it to twice a week. I’m willing to spend the money but need to be wise doing it.

In a positive note, I do feel a bit less fatigued I think. Placebo effect? Who knows.

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Oh my! You have me thoroughly confused! ... As MaisieGray says, you really need to get your terminology straight! ... You've thrown in terms for several different medications, which is totally confusing. ... Example: ... You're up to 60 mg of WHAT?

NDT. Mikki’s in Canada. They don’t use the term ‘grains’. One grain is 60 mg.

Thanks for answering. I am totally new to this and all the terminology. I am trying to learn it all. Confusing to me too. Remember, we all were learning at one time. NDT

You are right of course. I apologize if I sounded impatient. It's just that different medications affect us differently, so it's important to be clear on which medication you are asking a question about. ... The best to you. :~)

Thank you for that. I will admit that you did upset me. I’m trying so hard to take in and understand all the info coming my way and having a lot of confusion as a result of the thyroid doesn’t help. I am seriously brain dead at times lol.

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Most of us have been there mikki. ... It is a struggle to get things sorted out and find the best treatment for "us". ... Just as an example: ... I was first started on Synthyroid. It was like taking nothing. .... Next I was put on Armour. That worked well for me and I was doing great until 2009 when the manufacturer changed the formula of the product. Once again, it was like taking nothing. ... I finally found a good OLD Doc. He said: "Since the body can only use T3, why don't we just put you on T3? He prescribed Cytomel. Again, I was doing fine, when all of a sudden Cytomel was not available. (The only explanation I ever heard on that, was that it was manufactured in Puerto Rico and that the hurricane which hit there, wiped out their manufacturing facility.) ... Anyway, I was put on a Generic T3 and it did NOT work like Cytomel did. (The Pharmacist told me that Generics can use as little as 80% of the active ingredients in a name brand medication.) ... Just a couple weeks ago I finally found Cytomel. It cost me $600.00 US. but for the first time in months, I finally feel like a real human being again! ... Thankfully, my Insurance will kick in for the next script. and my copay will be just $200.00 for a three month supply. ... All this is probably "too much information" but I wanted to let you know that sometime it is a long journey to get where we need to be.

Glad that you have once again joined the human race. I’m still waiting.

Google where are most generic drugs made. CHINA which scares me silly! We all have heard how well they keep tabs on the manufacturer. That kills me that most GOs won’t prescribe NDTs because they aren’t regulated. According to them that is.

"Why do some people only get T4? I didn’t realize this.... I only knew of NDT"

But surely you did know about T4, because that's what you have been taking until recently, in your case, Synthroid.

I happily took mono-T4 for 30 yrs until the menopause and new health conditions messed things up, at which point I added T3 - I have subsequently tested heterozygous positive for a DIO2 SNP so that might explain why adding T3 improved things. I decided to try NDT simply because there is a somewhat bullying faction (including STTM but some patients too) who insist that NDT and only NDT is the thing to take, which of course is bunkum, because there is no single treatment that is right and best for everyone. So I thought I would try it and see what was my experience, but as I felt no different apart from the effect on my pocket, I returned to my NHS-prescribed T4 and T3.

Right now you really don't need to keep seeing your naturopath frequently if all you are doing is gradually and slowly titrating your NDT dose upwards from what was a very low start point. Many patients self-medicate with NDT without any medical input, not least because NDT is unlicensed in the UK. As someone experienced in taking an exogenous thyroid hormone for a number of years already, you should be used to how your body feels.

I bet the acupuncturist does want you to double your visits because it doubles their income. It is for you to decide if you need/want more, only you can decide that. I am not a fan of accupuncture myself, having had a bad experience with it; but last year I visited a chiropractic and she never tried to have me visit her more than I chose to.

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I Agree with you totally . Some of us do much better with NDT especially those of us that had TT . I tried at first T4 with synthetic T3 and I had thumping feelings especially when I felt the T3 run out . NDT is a much smoother way of having my T3 mix with my T4 . It's so very individual . We must respect what feels right for us and what does not . We have to be very mindful Not to but into what others are claiming . Journaling our symptoms comes into very good use .

Thanks for replying. I had written a lot but lost it Darn ! I have too many other posters to read and answer so will just give you the shortened version. I DID NOT. Know about T4. I just was told to take Synthroid and did until five years ago when I started questioning my dose.

I have only seen my naturopath once and one phone consult ( she lives an hour away) to get my history. I won’t see her again until my next blood panel which is the middle of July.

As to my acupuncturist, you have hit a nerve there. I go to what is called a community acupuncture. Their main goal is to provide affordable health care to everyone. They have a range of of 12 pounds to 24 pounds for up to an hour and you pay what you choose no questions ever asked. It is a growing movement across the country. It’s wonderful. The owner of my place is a young mom who just wants to help people. My “girl” who I just love told me yesterday when she SUGGESTED twice a week said if I couldn’t afford the $20 that she would arrange for me to pay $15 (9 pounds ). These are very cheap rates. I go for neuropathy in my feet caused by my chemo treatments that just finished a year ago. I totally agree with her that twice a week would be more beneficial. There has never been a single bit of pressure.

I think that others read my answers which I am grateful for, so I would like to tell you rather than repeating it over and over.

Here is a quick version of my story. Five years ago I went to my dr at the time because I was feeling awful. She just have suspected thyroid med problems because she upped the dose until it hit 125mcg. Before that my hair was falling out like crazy. I looked through some papers today and I saw that my TSH got to 1.5 on that dose. Fast forward to six months later. I had written that I felt good on that dose but then that dr had moved and I went to a totally useless one. I had anxiety by this time over personal problems so the DD ( dumb dr) reduced my Synthroid until it got to the 75mcg where it was until last week when I switched to NDT. I knew I felt awful but what with the cancer and the anxiety the drs all had something else to blame besides the dose of Synthroid. After I recovered from the chemo I still felt terrible and decided to take measures into my own hands. You know the rest of the story.

My naturopath told me today in an email that I should stay ion the NDT for awhile and give it a chance. I agree with her. I plan on increasing my dose every week IF I feel ok.

Whew! That’s it. Now to read all the other posts and I have a ton of them. Not complaining. I actually enjoy them. The more the merrier. I get bits and pieces of great advise for my situation and appreciate everyone who takes time out of their life to help a total stranger.

I have read you back posts and they are very, very, confusing. Where are you living.

You will have to be extremely accurate in your posting to receive the help you require. I am not trying to put you down, only trying to help. Good Luck.

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Thanks for replying. I live in Vancouver Canada. Maybe it’s living in a different country and having a couple of differences that makes it confusing. Also I have only been in here less than two weeks and haven’t learned all the “lingo” yet. We don’t use grains for instance. I got heck, to put it mildly , from a poster because I hadn’t heard of mcg. I asked several people here and none had either. In fact when I told my naturopath about all the flak I got (in a pm) even she said that no, we didn’t actually SAY that term here. We just SAY the number.

Mikki. Some of this confusion is about the use of genetic and brand names for drugs.

There are only 3 you can have.

First is Thyroxine (Generic name: Levothyroxine. Brand name: Synthroid). Some folks just refer to it as T4.)

Second is T3 (Generic name: Liothyronine. Several brand names: Cytomel is one of several. )

Third is NDT (Natural Dessicated Thyroid). Unlike above two, not synthetic. Made from Porcine extract (occasionally Bovine). They all have brand names - eg Armour, Erfa. Popular ones here are the Thai ones. eg Thyroid S.

NDT contains both T3 and T4 as a natural part of their formulation.

To confuse things even more, we use the term grains for NDT. One grain is 60 mg. That’s what your Naturopath meant by we SAY the number.

Hope this helps.

Thanks for replying. I think that I just have to stop trying to figure it all out and just listen to my naturopath. By the way she meant we don’t say we are on for example, mg or mcg We just say we are on X number. Yes this does help though. Some one here don’t seem to appreciate the fact that I am trying to understand so much at once while feeling like hell and really suffering the side effect of confusion, lack of concentration and poor memory. I’m afraid my memory is really bad at the moment and I get told something but don’t always remember it later. I can’t help it.

I understand that. That’s why you must just focus on one thing at a time.

Mcg is a much smaller unit of measurement than mg. Mcg is microgram; mg is milligram.

Don’t worry about it too much. There have been many cases here of doctors - particularly in hospitals - have got it wrong, with unfortunate consequences.

Some on T4 only do very well . They most probably convert well their T4 to T3 . Many don't convert their T4 well to T3 and they have to add some T3/NDT. Lowering the T4 prior to adding any T3 /NDT is very important . If adding T3/NDT to a high FT4 can make a situation worse and cause someone to experience many hyper symptoms .

Thanks for replying. By T4 do you mean something like Synthroid? If this is the case, mine wasn’t lowered from 75mcg.

So are you saying that you are now taking 75 mcg T4 AND your NDT?

No, I didn’t. I don’t know how you got that idea. The poster said “adding to a high T4” I asked if by that they meant something like Synthroid. If that is what they meant, then no, mine wasn’t lowered.

You were taking T4. jgelliss wrote that some on T4-only, which is what you were, don't convert very well and have to add some T3/NDT. She then said that lowering the T4 prior to adding T3/NDT is very important (well actually no, not always, it depends on hormone levels but that's another story). You replied "By T4 do you mean something like Synthroid? If this is the case, mine wasn’t lowered from 75mcg." So that reads that you were still taking the T4 at 75mcg. Had you wished to clarify that you did something other than that, surely the answer was "no I didn't lower my T4 dose, I stopped it completely in order to swap to NDT." There is absolutely no need to get shirty with me. Like others, I have put in effort to try and help inform and make things clearer for you, and I, and others, have done so repeatedly, repeating the same facts a number of times but it seems you would rather construe our help as showing off and insult out national identity. You have been urged by many that you should slow down, pay more attention, be more focused, actually listen to what people are saying, and importantly don't bite the hands that feed you. And now, because I needed to clarify, from something you said, that you were doing the right or a different thing, in order to help you, you've snapped at me. So I'll leave you to it from here on in.

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I’m sorry Maisie Grey that I came across as shirty. I didn’t mean to at all. Like my kids say in regard to texting. They hate it because you don’t know exactly what they are saying. They could be smiling and you take it that they are being sarcastic for example. I do appreciate your help and I don’t want you to stop.

As to construing your help as showing off, and insulting your national identity , that has left me very puzzled. I can only guess that you are referring to something from a post when I first started out. That was water under the bridge. I pm the person and apologized but she refused to accept it. If by national identity you mean something negative towards the English, you couldn’t be any more wrong. I am first generation Canadian with my parents and grandparents being English born. I was raised in a very English type home. I LOVE England and lived there in Devon for six months. I LOVE my English family over there and visit every years. Well, until I got so sick with my cancer and the thyroid issues.

Mikky. For goodness sake. Calm down. Just deal with the increase in your NDT and wait to see how it goes. You’re reading and writing too much and not coming over clearly.

Keep calm. Turn off your pc and watch some mindless TV. There’s enough of it 😊

Take care

If you are referring to my answer to Maisie Grey, I guess I should have on it.

Stay away from pm. Better to have everything in open forum so we’re all in the picture.

I can understand you frustration Maisie. But she’s confused and unwell - and perhaps a little sensitive to what she perceives as criticism.

I guess we all do that at sometime ......😊

Your Dr would have to run FT4 FT3 TSH and see where your levels are before starting you with any T3/NDT .

Actually, she didn’t. She started me on the NDT first and when I got the results I gave them to her.

I can understand not understanding my Canadian accent but there seems to be a problem with my Canadian writing too LOL.

It can. Don’t increase too fast.

Everyone says don’t lower it too fast but only a couple have said what too fast is. I am planning on raising it every week like my naturopath suggested IF I feel ok. Do you consider this too fast ?

YES. We have repeatedly said that’s too fast. Mikky. Listen to the advice you’re given.

I’m not criticising your naturopath. Far from it. However if she leaves you with so many doubts that you have to consult this forum do you really have confidence in her?

To be fair to my naturopath, I have only seen her once for 15 minutes and one phone call to get all my info. Yes I have faith so far in her. I had been to her a few years ago and liked her then.

I do listen to the advise. Like I said I will do it IF I feel ok. We are all differ like everyone points out.

mm

After introducing T3 to my T4, I initially felt a headache & inner heat which lasted about three days before dissipating.

Sequential dose raise's were then easily tolerated, as was NDT which I switched to about a year later after optimising known helpful cofactors.

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Thanks for answering. Like I said to Maisie, I just don’t understand it all. I was so used to just taking my Synthroid. Do you mean some people just take T3 and T4?

Hi mikkymouse

I take armour thyroid which has a combination of T4 and T3 mixed into one pill and I take 2 grains which is 2 pills and each pill has a certain amount of T4 and T3 and YES I must take my 2 pills at different times in the day or I have issues with aniexty.

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Hi Batty1 can you tell me what time of day you take your dosage? I've switched to Armour and take 1 pill 130mg in morning and been feeling jittery. Doing bloodwork today for level's to post here to also get some help...only been on for 2 months was on Naturesthroid for 15yrs before nationwide (US) shortage.

Hi dbrowning02

It depends what time schedule works for you. I take my first Armour Thyroid pill at 4:15am go back to sleep for 2-3 hours and then I take my second pill around 10:00am or within the hour. I set my watch alarm so I dont forget. If Im going out before my 2nd pill is due I just take it with me and my watch alarm will remind me to take it.

Some people suggest taking your AT later in the day or it's been suggested to me to take before bed because my 1st pill makes me sleep,and don't know why that is. Anyway I toyed with the before bed dose but I hate change so I'm just going to sleep little longer in the AM until it drives me bananas and I try it at night.

Not sure if taking that early would work for me since I would have a hard time going back to sleep. At one time I was taking Natures in morning at right before bed and once menopause hit and was having trouble sleeping my naturopathic Doc said do not take at night and wondered who ever told me to dos that way(another doc in another state) anyways was thinking it makes since to split up dosage instead of flooding the body with such a high dosage all at once. I'm trying to learn I guess I've been naive about this but reading books and learning from this forum I will hopefully educate myself. Thanks for your help!

Hi,

Just split your dose at a schedule that works for your life style. I'm menopausal and have no thyroid oh the joys of being a female it's like being hit by a truck and then backed up over for good measure...lol.

Hi Batty? Are you, by the way lol? So you are taking roughly 120 mg of it? What times do you take them at. Any help is appreciated here. I have been sitting them to morning before I get up actually and around five so that I have the hour wait before dinner. Anxiety seems to be the one thing I am getting when I take it , especially the first two days after the increase. (I’ve only had two so far) I’m up to one grain now.

Thanks for the help.

Hi mikkymouse

No I'm not taking 120mg of Armour Thyroid (60mg =1 grain of armour thyroid which = 1 pill) Each pill contains only 38mcg (T4) and 9mcg (T3) So, I'm taking 2 grains or 120mg "BUT" Each pill only contains 38mcg(T4) and 9mcg (T3) my actual prescription dosage is 76mg of (T4) and 18mcg Of (T3) and I take one pill in Am and the other later on.

I think your getting confused by the mcg amount on bottle instead of what is actual amount of T4 and T3 in each pill you take. What is the amount of your actual prescription is it 30mg or 60mg ?

Huh! Am I going nuts here. You started by saying “no, I’m not taking 120 mcg of Armour. Then you said” So, I am taking 120 mg. Let’s just forget it though. I have gotten frustrated enough today with a few posts.

Lol. 120mg doesn't really matter what matters is the amount of T4 and T3 that is in each pill you take and that should be on the bottle or paperwork. I think you need to split your dose and take them at least few hours apart (for me) taking my pills 6 hours apart got rid of my aniexty. Good luck

Do you remember how often you upped your dose and by how much? Maybe I just am going too fast. I’m honestly a mess both physically and emotionally and I just can’t grasp everyone’s wonderful advise. I try so hard. I really do.

my doctor has me on 1 -5MCG tabs 5 times a day (total 25MCG a day. I usually take all at once at night when I go to bed! T3 only. Marin5

I feel better on T3 alone. when Instarted, right away inflamation subsided and I lost weight!

I still have chronic pain and other autoimmune diseases, but with my Hashimoto's feel better

on T3 only without the levothyroxine!

Marin5

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mm,

Yes. Some people take T4 whilst adding a little T3 to make it work better.

I previously suggested this T4/T3 combo to you because you were already medicating Synthroid (T4) and it is more user friendly, as each med dose can be easily tailored, as opposed to the fixed T4/T3 ratio offered by NDT.

Everybody has their own individualised T4/T3 ratio unique to their body’s requirements. Some may find the T3 levels in NDT exceed that of their needs, meaning they will never be able to dose enough NDT to optimise T4 levels for well being.

I raised by 5mcg T3 every week but only if no ill effects were felt. When I switched to NDT, I did a straight swop because I had medicated T3 for a whole year before.

Feeling spacey, funny in your head and agitated with shakey legs could mean adrenal issues or low iron levels that are being exposed by the NDT. As previously explained, for some people adequate cortisol (adrenal hormone), optimal iron levels and managed thyroid antibodies are non-negotiable for good NDT acceptance.

You sound as if you are struggling. Are you having flu-like symptoms ?

Have you taken pulse and temps ?

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Thanks for replying again. Struggling is a huge understatement!!!! I get so upset and confused. I never knew about a T3 T4 combo. I thought there was just a Levo or the NDT. I like your answer. It explains a few things a bit more.

Why did you switch to NDT?

I haven’t taken my temp. Not sure why you do it or what it means. As to pulse , ha! My 24 hour holter monitor last week showed my HR was consistently around 160 BPM! I was to start a heart med but I don’t want to start two new meds at once because I won’t know which side effects were caused by what.

I go to pick up the saliva test for adrenals and cortisol on Tuesday. I’m trying hard to try everything. Will get Vit blood tests next week. I will be surprised if they are out of range though. I do already take supplements of D and Magnesium and my iron levels are actually out of range being too high. Have been for several years. I will ask for a a TPO test. Haven’t Had one in a few years. It was high last time.

I will ask my naturopath when I see her next if she thinks a combo might be better for me.

mm,

T3 has a short half life meaning it’s effects can be felt almost immediately. It has a direct effect on the heart and body temperature so people take pulse & temps just before thyroid meds and 2 hours after (or at other set times), giving opportunity to gauge suitable T3 levels and how well it is being tolerated.

Excess T3 can be dangerous. You will not have excess T3 because are not medicating enough NDT but recording temps & pulse could be helpful in realising your bodies tolerance levels and any subsequent improvements.

When we feel ill & disorientated it can be hard to see any progress, even when some is felt. I also used to record symptoms felt with any dose adjustments.

I switched to WPThyroid NDT because my T3 that the English National Health Service was providing got withdrawn. This has been the experience of many members and it is simply awful to be given a taste and feel of real recovery, only to have it snatched away again.

It enforced determination & I knew I had to self-medicate. Health wise I was in an excellent place to start NDT so I bought some ... and here I am today. 😬

I am lucky that my understanding endocrinologist oversees & local doctor does all bloods. Not everyone on the forum has additional help. When considering do I feel any different on NDT than on T4/T3 combo ? No. I have seen great recovery progress on each, so would happily switch back if T3 ever becames available on our NHS again.

In fact the T4/T3 combo could be viewed as favourable because of the availability given for titivatation. Useful if our variable seasonal temps influence ones thyroid hormone level requirements.

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I forgot to reply I think so thank you. I’m pooped. I had around 40 replies today and I want to answer eco so I’ve been in my phone here for hours. Not complaining but I am getting tired and it’s close to dinner time.

mm,

You are very welcome.

Recognition is nice but if you feel very ill, do not feel obliged to spend hours on your phone answering each and every reply.

If members wish to see your progress they can always click on your name to see any recent activity.

No, it actually gives me something to do because I’m not up to doing much.

Aren’t you in England? Don’t you ever sleep

Lol.

mm

I am on the south coast of England and there is a huge storm raging over the sea atm. Spectacular lightening.

I think you may be the person that lives in Cornwall. ?? I love watching storms. I’m looking at the beautiful blue sky here right now. (Vancouver)

You must be like most women I know who can’t sleep. If you do then you are awake at 5:00. Last night for me it was from 3:30 on. I hate it!!

By the way, I like to respond to everyone because I read where one regular poster told off a woman because she hadn’t even acknowledged her post. Don’t want that to be me lol.

Haha .... don’t take any notice. We all get irritable sometimes when we don’t feel well.

I live outside of Brighton, much further east up the coast than Cornwall. I love the sea and could never live away from it.

I am always awake at 5am which doesn’t bother me if I have slept well during the night, as it is good to watch the sunrise. What is annoying is waking in the middle of the night !

I have never once in my almost 71 years (next month) seen a sunrise!!!! Im more if a night owl and think mornings should be banned lol. You must go to bed early. I go around eleven. Later if my hubby goes in the hot tub. I average about five hours a night if I’m lucky. Lots of night sweats and pain in various places keeps me awake.

I remember the first time we were in Brighton and we asked directions to somewhere ( probably the palace) and he said “ go to the PEAR and bla bla bla. We didn’t have a clue what he was talking about until the penny dropped and realized he meant PIER. Lol. We like Brighton. I love England. My favourite country after Canada. I’m first fen I Canadian. English parents etc.

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Meant to say 1st generation.

"I will ask my naturopath when I see her next if she thinks a combo might be better for me."

Well you are currently taking a combination of T3 and T4 within your NDT, so the choice is between synthetic drugs, and that extracted from a pig or cow. Unless she has a crystal ball, your naturopath cannot know whether or not it would be better for you; but in any case, at only 7 or so days after switching to an NDT and not yet optimally medicated on that, now isn't the time to be thinking about switching again.

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You’re going too fast Mikki. You remember that we talked the fact that NDT contains both T3 and T4 (natural forms). We also talked about some people taking synthetic T3 with Levo - another option. You were taking Synthroid (synthetic T4 on its own which we call Levothyroxine) and not feeling well.

The acupuncturist should not be giving advice.

You sound very stressed and anxious Mikki. Go back to your previous dose and stay on it for 2 to 3 weeks.

Try not to worry.

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Thanks for replying. You started off saying “you remember”. That is the problem. I don’t remember. My memory has suddenly got so bad that it’s scary. I’m not worried that it’s senility or anything and am blaming the med dose. It’s more a concentration thing I guess you would call it. Also, I’ve been given a heck of a lot of info in a very short period of time.

I replied to Maisie regarding my wonderful acupuncturist. Maybe you can see it?

Hi there are various treatments for Thyroid Problems.

1) Levo which is just T4 and Synthetic.

2) NDT which is Natural Pig's Thyroid and contains T4 , T3, T2 etc.

3) T3 Liothyronine which just contains T3 and is Synthetic.

4) Some people do well on a mixture of Levo and T3 together

I hope that this is clearer for you, it's a bit of a minefield to start with especially when you do not feel well..

Whenever you start to add any T3 either by itself or T3 that's in NDT you have to increase very slowly. Increasing every two weeks minimum.

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This helps clarify it. Thanks. My naturopath said an increase every week is fine. I will only do that if I feel ok. I am very anxious or impatient to get at least to the 75 where I was before on Synthroid before I started. the NDT.

Mikkymouse

With regards taking your NDT, I replied to you on a previous thread you started.

I gave you step by step instructions and how to take it slowly and how I introduced NDT after stopping Levothyroxine (T4) others also offered you advice on the same subject.

NDT has a mixture of T4 & T3 in. T3 is a lot stronger than T4, so you need to take it slowly otherwise it will cause all sorts of symptoms.

You keep referring to following your naturopath advice though, but then asking for advice again, it maybe your increasing too fast with your naturopath.

Remember we have all been in a similar situation to you, we have all suffered this awful thyroid journey and with the help and support of this thyroid forum, I’m getting my life back finally. Brain fog and anxiety is the worse, I know, sometimes I couldn’t add 1+1, and nothing seemed to register with me, but, try and read back on the advice, make notes even on a post it note.

It’s up to you if you chose to take the advice or not, but try and relax and don’t rush your increases, it’s will back fire.

Good luck on your journey.

Peanut31

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Thank you. I feel I am being pulled in two directions. My naturopath and people on here. I do listen to people but in the end it’s up to me what I choose to do right or wrong.

Brain fog and anxiety and my shaky legs are my biggest things. The memory bathing is bad but lots of people my age 71 soon have it too so I’m not booking a place in the home yet lol.

Hi

At the end of the day your posting on here and asking for advice on here. Members are replying with advice due to there own journey and only want to help myself included.

Some are still experiencing symptoms, others, resolved at long last.

Yes, agree, it’s ultimately up to you what advice you take, but, please remember that it can get frustrating when asking questions and members giving advice, only to ask again and ignore the advice.

if you feel your being pulled by advice on here and your naturopath, then perhaps it would be best to chose which advice to take, as in your naturopath advice or advice on here

stick to one or the other, otherwise your going to drive yourself crazy. I remember when I started my thyroid journey self medicating on NDT, I very rarely posted as I didn’t want to start doubting myself with the treatment method I picked.

I agree it can get confusing with different advice especially when your experiencing symptoms and not one method suits all, but give one method a good go first.

I stuck to one way for a good while, taking notes of my symptoms, and how I felt. After a while and referring back to my notes I could see patterns emerging, along with my blood results I could see what my body needed. For example people say that 2 grains of NDT is a small amount, (not on here) but that’s what I’m on, and sticking to it, who cares if people say it’s not much, it’s working for me.

When you feel so ill your desperate for an improvement and that’s when you start to think perhaps I should try route, A, B, C, D all in one go, then you get in a mess and become overmedicated and it can back fire.

My memory was terrible I couldn’t remember names of friends, I was shaky and my anxiety was through the roof, too much T3 can cause this as well as a thyroid related symptom, that’s why you need to increase your NDT slowly as your original medication only contained T4.

Good luck & best wishes

Peanut31

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I think you mean NDT Mikki - not T3. Think you may need to go slower.

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Thanks for answering. Like I told the other posters , I honestly don’t know what I mean anymore. All I know is that I was taken off Synthroid and put on Thyroid by Erfa.

It has a book on Amazon “ Stop thyroid madness “ my advice is to buy this book and read slowly with attention. It’s really for people who doesn’t have a clue regarding medical field. You will be as a pro after reading this book. It explains everything why you need to check your temperature at 3 pm, why you need T3 an additional to NDT , or Synthroid ... this book is my second bible .

Good luck with your road for recovery!

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Thanks. I actually have a copy of the book beside me right now. You’re right. It is very helpful. Well, most chapters are. A few are really for drs only. Too complicated. I’ve almost finished it and I just got it. You need to read it slowly to absorb it and reread it actually.

what did you start with? and 1/4 of what?

Thanks for replying. I quit 75 Synthroid about ten days ago and started taking Thyroid by Erfa. I started with 30 mg. I upped to 45 after a couple of days on the advise of my naturopath. I then upped it last night another 15 to make it 60. Maybe too fast an increase. It made me anxious and very funny feeling in my head but I feel not too bad now. This is ten hours after taking it.

When I started my NDT I also did it slowly as : 1/5 then 1/2 etc....I built up to 150mg and it caused hyper readings although still Hypo - Lowered in the end (after 3 tests) to 1/2 a grain of NP (30mg) that I buy from US and introducing T3 Liothyronine slowly started on 2.5mcg twice a day Now 7.5mcg in total (5+2.5mcg) again twice a day with 1/2 grain NP after 2pm....taking temperatures & BP but difficult to keep to same times due to activities during day ....(9am 12 & 3 pm)

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Thanks for replying.

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ERFA Thyroid tablets are available in the following strengths:

30mg tablets of thyroid extract contain levothyroxine (T4) 18mcg and liothyronine (T3) 4mcg

60mg tablets of thyroid extract contain levothyroxine (T4) 35mcg and liothyronine (T3) 8mcg

125mg tablets of thyroid extract contain levothyroxine (T4) 73mcg and and (T3) 17mcg

In case anyone was curious about how much T4/T3 was in each tablet.

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Thanks. My husband actually asked me last night how much T3 was in my NDT. I didn’t know.

Before my thyroid was removed in Oct 2015 I was not on medication and it was working well. The reason for removal was the lump on the thyroid moving my trachea so I found it hard to breathe. I was then started on Levo which I thought would sort it out, how wrong I was, anyway I had gone from very fit to very ill in a matter of only 8 months. I then joined this site and the good people on here helped me to become well again. I take NDT and although it has taken me some time to sort out my medication I am now on 2.1/4 grains of 65 mcg. and feel great. I am 72 years old too. I was on 125 mcg of Levo and switched to one half of NDT for two weeks and so on increasing my another half each time.

Thanks bunnyjean

You said “ I am 72 years old too. “ Hey, don’t age me. LOL. I’m a young 70 year old until July.

Are you the one whose idiot dr said that maybe you suddenly got asthma?

I feel undermedicated being so far on 1 grain. I am still increasing of course and hope to reach something like what you are on. I was only on 75 Synthroid before I switched. I’m so looking forward to feeling well again. Five years with breast cancer thrown in is way too long.

Hi I never meant ( you too ) only referring to myself feeling well at 72 year old. Birthday in July too though.

I do hope you know I’m teasing. My bd is July 24th and France has a big celebration for me every year but I’ve never made it lol

Mine is the fourth of July a Yankee Doodle Dandy. Guess what? we are both have famous birthday's that must count for something?

I meant to say July 14th, not the 24th. I’m sure it does count. Are you English or American? Nice to know that they recognize us lol. They really didn’t need to go to so much trouble but hey, we’re worth it, right!

You need to get back to 45 mg and stay there for a while.

Sorry but no. I would rather suffer a few days of discomfort than go really low and get worse ( more hypo). My body has been used to 75 mcg of Synthroid so this was a big drop for it.

I only take T3, half a tablet of 20mcg but after a few days i don’t sleep well and gets really hot. Am i taking too much? I don’t want to take too little and gain weight, can someone help please?

Poppie, you need to start your own thread, ask your own question. Otherwise it gets confusing. At the top of the page, you should find a blue window marked 'Write'. Click on that and compose your own post, giving as much detail as possible: blood test results with ranges; how long you've been on your present dose; what you were taking before T3; etc. I'm sure lots of people will answer and give you as much help as they can. :)

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Initial increases after you have stopped the Levo is to take half a grain so half a tablet and stay on that for two weeks then increase again and leave to a grain-one tablet for another two weeks. Don't panic that it doesn't sound much-remember you still have medication from your previous regime so that decreases as the new medication increases. Do this till you get to 2 grains and if you feel ok leave it at that and retest in 6 weeks or if you are still getting under treated symptoms then increase but from then only in quarters or you may miss your sweet spot. I missed mine as my dose I need turns out to be 1.75 grains so one tablet 3/4 on another. So I would drop you dose down and may be even miss a day to use up some of the surplus. I would be tempted to get things tested frequently so it doesn't upset you again so may be stop at 2 grains for 6 weeks then retest and let us know your readings so we can comment on them. If at any time you feel panic or palpitations then stop and go back to a previous dose then if ok on that test in 6 weeks orcif that drop doesn't rid you if palpitations then drop back again.

I went with NDT because I had been on it before but mostly working out how much T3 to add to T4 sounded too complicated at my time of life!

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Thank you SF. I know I went too fast but I will only increase again if I feel ok. I am planning on only 1/4 increases each time. Glad you mentioned about the sweet spot. Good point. My naturopath is the one who said she generally increases her patients dose every week. I’m lucky that a mistake was made at the lab resulting in my TSH and T3 and T4 will be tested every four weeks. Bonus! I don’t mean a medical mistake. The girl there thought all the boxes were ticked for a standing order for a year.

I found an old test result today where I had written I felt good at TSH 1.5 At my current 3.65 I feel the pits.

when I was diagnosed twenty years ago I simply believed the doctor for years, but then read some informative books on the subject. Stop the Thyroid madness was one of them. This gave me the direction for ways forward and helped me understand the disease.

Thanks for replying. I’m reading that book right now actually. Very informative. I never questioned what I was putting into my mouth until I started feeling awful and figured the med dose was the cause.

I found I had to increase by 1/4 grain, so 15 in your money lol, 1/2 or 30 increase at a time was too much for me and 2weeks on each dose drop back to previous if adverse effects. I check heart rate and blood pressure daily to. The biggest effect when I started NDT was feeling happy, quite euphoric, wore off though...sigh.... My throat hurt more for several days then faded to much better, could actually swallow with ease. I'll try to think what else.

Linda x

Thanks Linda

I’m scared to increase by more than 15 at a time. I haven’t had the happy feeling......sigh, lol..... Just lots of tears but I do feel more energetic. Also my head seems so much better. Knock on wood. ( my head)

Just curious if you have changed your diet. I’m planning on trying gluten free for one month to see if it makes a difference My daughter has been in Keto for six months and feels worlds better. I’m not that desperate yet lol.

X

Sheila

Gluten free did nothing for me, I gave it six months but no difference when I stopped either. Tried dairy free, hell for me 😊, but no difference. I just eat mainly healthy, no processed food.

Linda x

I’m sceptical that it will help me but I’m willing to give it a month. Can’t hurt. Except I love beer sob sob. I only have a couple a week though so I will survive. Lol

I only take T3 so can only comment on my experience with that, but I find it takes my body 4-5 weeks to adjust with each dose increase. I know everyone is different and some people can increase more frequently but off the advice of several people on this forum after asking if I might be increasing too quickly due to side effects, I have only ever increased by 5 mcg at a time every 4-6 weeks. My experience is that I almost always get some sort of side effects as my body balances out and it has changed with each increase. At first I would have a few days of feeling good after I increased, then 2 weeks of roller coaster symptoms and then 2 weeks of my body balancing out. Once I got to that stage where my symptoms had been stable for a couple of weeks, I would increase again. Riding out the symptoms over those couple of weeks could be very uncomfortable at times, but I got to know my body and could recognise that they were balancing symptoms. They were the same as my normal hypo / being under treated symptoms but would rotate or be more exaggerated. These could include sore throat, sinus pain and teeth pain, pins and needles in my skin or even an electrified feeling g in my skin, pronounced heartbeat (not fast - just very strong), what felt like a pressure on my chest / air hunger, gastric reflux, pains in certain joints, fluid retention, some hot flushes, extra tiredness / fatigue, depression, and sometimes I would flip occasionally into anxiety, higher metabolism where I was hungry all the time and what felt like blood sugar issues. Through it all I take my temp several times a day and also check my BP at least morning and night. These were the biggest indicators to let me know I was ok. Riding out the symptoms can really suck and I have found that even though I’m still only increasing by 5 mcg each increase, my last 2 increases had the most dramatic and uncomfortable side effects as my body adjusted, but then the result was that overall my hypo symptoms got better. It seems to me that those who are posting here using either NDT or T4 in combo with T3 seem to adjust easier to the T3 increases. Or perhaps I am just super sensitive. My main point is that it is important to be careful and go slowly. And I just also wanted to weigh in as you had asked about specific symptoms and also about time frames for increase. My experience is that I needed more time to adjust not less. Early when I started increasing too fast my heart rate would really increase and I felt anxious and really overheating and shaky. It was too much too fast for me. We are all different, but better a bit slower and safer even though you might want to get there faster. I felt like you when I started. It is worth reading some books like Stop the Thyroid Madness or others that people might recommend to you just to get your head around things. I found it very helpful. And this forum is great for learning. Just know that everyone is different so really tune into your body, breathe deep and listen to what your body tells you as it has its own intelligence. I also recommend some meditation or simple box breathing exercises if you’re not already doing them just to help you calm your body and mind. Your central nervous system is taking a beating right now and it has really helped me. But you may already be into that. You will get there! We are all with you.

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Thanks so much. Wow, you certainly got more than your share of side effects!! Mine after an increase ( I’ve only had two is anxiety and funny legs which make walking difficult.

I’m currently reading the Stop the Thyroid Madness Book. Pretty good.

I still don’t know what I’m looking for if I take my temp. I did today for first time and it was 36.5. Dies t mean a thing to me. Can you explain what we are looking for. Same with BP. I do take mine but it’s because of my tachycardia.

Thanks again.

I can’t explain the temps very well but Check out this website for an easy overview of temps.

drrind.com/therapies/metabo...

It is also in the Stop The thyroid madness book if you look in the index for temperature. There is even a chart you can print if you want to to plot temps. With the BP, it is just about monitoring if you are in a safe range. And when it might be higher or lower and if that correlated to particular times of day, circumstances, etc. I actually check mine a few times a day and just make notes in my phones note app of the date, times, temps, BPs and very brief descriptions of how I am feeling that day or if anything flares at particular times and then just from doing that you start to notice patterns in your BP and temps. My advice is not to get too fixated on any one thing (which can be tricky to do with thyroid issues as fixation and neurotic thinking can be one of the symptoms) but rather really listen to your instincts and then just take on board what resonates with you from the books you read, the forums, doctors etc. that has been my biggest lesson - your body has innate intelligence and if something someone says to you really doesn’t sit well with you, listen to that and get other opinions. It can be really hard with so much varying info out there. I started with STTM book too and it is a good base of info, then you get led to other info and things will fall into place. Ask lots of questions and bit by bit more and more will make sense. It really will. You will get there!

Thanks so much for answering. I’ll check out the temp thing in the book. I’ve read it all but just skimmed over the technical stuff that I think was more for drs. Good info though.

I havent felt anything

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That’s good. What are you on?

Levoxyl 50 mg and cytom 5mg twice a day. It will probably be going up next round of blood work though

Im not sure if anyone has mentioned, you may be feeling agitated due to weak adrenals, any t3 will highlight any adrenal weakness. Adrenal problems are often felt like an internal tremor, like a tuning fork. I needed adrenal cortex extra (ACEX) when i started NDT. Dr Peatfield always said treat adrenals before thyroid. Mine crash every 4-5 months, we are all different.

Personally I am thyroid resistant and have never felt the rush of energy people describe with t3, after careful monitoring i found my 75-100mcg (t3 only) takes 9 hours to have an effect, so i take it all at once at bedtime. The best tool for me was detailed journal so i could find triggers (stress, food, vitamins, exercise etc) Mine was not a quick fix, it took 2 years to get reasonably stable and anything can throw the careful balance out xx

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Thanks for answering. Wow! Two years! How discouraging. I’ll have to look for a bridge to jump off if I take that long. lol

I’m keeping a journal too. You think you will remember but of course you don’t.

I am pretty sure that I will feel better when my TSH is around 1.5. I found an old blood report and I had written several months later that I felt good on that dose. We’ll see

Xx

Hi there, was just about to post the message below but see that you are on NDT not T3 and levo. I'll post it anyway in case it's of use.

Re starting T3 with Levo. I got lots of very good advice from seasidesusie, greygoose, slowdragon and others. Been on T3 six months now. At first I felt energised then began to feel high as a kite and have tachycardia. After a month as my levo dose reduction kicked in I felt exhausted and achy like being hypo again. I upped my T3 and felt a mix of good but a bit up and down. Then hit a wall and felt exhausted. My T4; had dropped below range. Seasidesusie, slowdragon and greygoose suggested aiming to get T3 and T4 well within range. So I've been working with less T3 and more levo and this seems to be working. I've much more energy, no brain fog and no tinitus. Still not quite there and need a few more adjustments. The things I really struggled with initially were feeling high (felt completely off my head in Lidl one morning), mood swings, tachycardia and episodes of crashing fatigue as I adjusted my levo dose. Good luck it can be a bit bumpy but I'm six months in now and please with where I'm getting to.

Michael

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Thanks Michael

What dose if Levo are you on now? What is your latest TSH? I’ve had lots of mood swings, brain fog, anxiety and tachycardia. I’m supposed to start a heart med for the tachycardia but wanted to wait a bit because I’m just starting this NDT and want to know which med is causing which symptoms if any.

Sheila

Hi Sheila, my last TSH test was about 2 months ago. My GP did two to get an average. On 100 levo and 10 T3 I had TSH 0.1 and 0.7. my endo asked me to stick at 0.1. On T4 only I feel best at about TSH 0.5 to 1. I learned I need T4 at mid range so have upped levo to 112.5 for past eight weeks as taking T3 will push down your TSH and reduce any residual T4 your thyroid is still chucking out. I tried dropping T3 to 5mcg but got tired do stuck with 10mcg T3 split in 2. due a test next week where I imagine my TSH will be lower but I'm feeling a lot better. Still bit up and down and not quite there but unrecognisable from a year ago.

Good luck, it is a bit of a learning curve and your body will slowly adapt. My GP gave me beta blockers for tachycardia and these were helpful for handling the 120 BPM heart during dose increases .

All the best, Michael

Thanks Michael

I’m glad to hear of success stories like yours. Hopefully you will be at optimum feelings soon. It’s such a long road isn’t it. I have quite a ways to go but I’m finally feeling that there is hope. I do feel a bit better getting off the Synthroid and going on Thyroid by Erfa.

Take care

Sheila

I’ll felt like pants! Enough said! Started very small and built up very slowly. Then had three wonderful months of health 👍🏻

Is felt like pants an expression? I thought that your referring maybe to another poster. Started what small? An NDT ? How slowly and what dose are you at? I assume you still feel wonderful. Great!

Unfortunately feeling wonderful only lasted three months. Back to the drawing board yet again so now on NDT - Natural Dessicated thyroid hormone - which seems to be a bit better. Years of trying this and that. It’s drainjng beyond belief. Feeling like pants in my neck of the woods is a polite way of saying you feel rubbish/like crap!

I actually started T3 on just 5mcg and took about four weeks to built up to 10. Then 10 am and 10 after lunch - so 20 in total. I think some people are better on it than others for side effects so I’d just see how you feel. You may be fine straight off the bat and have few side effects on full dose or you may feel terrible on a small dose. Everyone’s different.

Oh no. We don’t want to hear that you have regressed! I am feeling a bit better after ten days of being on the NDT. I feel dizzy and my legs are so wobbly when I increased it twice so far. It lasts about two to three days.

Where do you live that they use that expression. It sound American to me ???? I’m Canadian.

I’m in the UK near Bristol! I’m on holiday in cananda next week though lol. Nova Scotia! I had dizziness when started NDT so par for the course by the sounds like it.

Happy holidays !! You’re missing the best side though LOL Vancouver.

Thanks for letting me know about the dizziness.

Hi Mikkymouse,

My situation is a bit different than yours in that I have taken Cytomel (T3) only, as well as ThyroGold which is an over the counter NDT (T4 and T3). I can answer your question specifically about too much T3.

I first started on T3 only because I finally found a doc that looked at my full thyroid panel and saw I wasn't converting T4 to T3, so she put me on T3 only. She first prescribed the 25mcg per day but I knew it was too much because I had heart palpitations, was hot and pretty short tempered and agitated. Also had a low grade headache. Told my doc and we bumped back and started at 5mcg per day and got up to about 25mcg spread throughout the day.

My doc retired and I was left to find another that would treat my hypothyroid symptoms as she had for 3yrs. Have tried two and both only look at TSH. Desperate, I tried the Thyrogold that I could get without a prescription. I don't feel much relief, have been on it about a month. I suspect it doesn't get me enough T3, or perhaps I haven't gotten my dosage right, but will redo my labs in another week or so to get the data.

Hope this helps.

Am I understanding right? The new dr won’t prescribe T3? Are you in England or the States? I heard English posters talking about the Thyroigold. At least I think that’s what it’s called. What about Thailand if you want it? I’ve read people are happy with it and it sounds so cheap!!!!

Good luck.

Yes, ThyroGold is okay. It has given me enough T3 that I've gotten a bit of energy back, but not enough to get me symptom free like I was before. Thanks for the tip!

I’ve given my all Micky since you joined. Please just digest the fact that you need to slowly increase NDT then assess. That’s all.

Take care

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Sorry my experience was not good. Very small and o thought I was dying. Heart palpitations, rages and anxiety. Unfortunate as I lost loads of weight and was less tired. Hope it improves for you.

Sorry to hear that your experience wasn’t good. How long did you try for? I get funny in the head and kind of twitchy I guess you could call it. Like a kid when he needs to use the toilet but doesn’t want to stop playing lol. Do you understand? I’m determined to give this a good try. I’m still undermedicated at 60 mg so need to suck it up.

I had a reaction when I started T4 many years ago, didn't with T3.

I take 5mcg of cytomel along with my 75mg levothyroxine and it’s been the best combo for me.

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