Need advice

[buzz123]

Hi, just need some advice on taking t3, short history about me , have been taking t4 for fifteen years now, I did have a problem a year ago when my gp did prescribe me armour after I had requested but it did not agree and gave me extreme panic and anxiety attacks, so I went back to thyroxine. However I have struggled for over a year to get back to my original dose, I should be on 100mcg but am still struggling to take 50mcg as it seems to give me hyper symptoms. Anyway went to see a private Doctor who is very experienced and he has prescribed me t3, which is great but to start on 20mcg with my t4. I feel that is a far to high a dose,. he has said 20mcg t3 for two weeks and then double that to 40 mcg. Abit frightened I might get panic and anxiety again on that dose.

Can anyone help ?

[Clarebear]

Do you know how your adrenals and iron/ferritin are? I found that Armour gave me hyper feelings when these were too low. I seem to have sorted that now (iron tablets and CT3M) and don't get the anxiety/panic any more now that I have managed to raise my Armour high enough.

Also I would definitely start on a smaller dose of T3 than 20mcg and I would try splitting it and taking it in several doses through out the day. xx

[buzz123 in reply to Clarebear]

Hi,

thanks for you reply,you say you take iron and CT3M what is that ? I had some blood tests taken but not sure on ferritin, does that come under the liver tests, my kidney and liver tests were normal, my cortisol level was normal, that was taken in the morning, do you know I am now so confused everyday seems a struggle !! Thanks for advice on t3, yes I will go slowly, don't ever want to feel so much anxiety ever again. Why is it so complicated !

[Clarebear in reply to buzz123]

Ferritin is stored iron - your iron can be OK but ferritin still low, in which case you need to supplement with iron. Also ferritin needs to be quite high in the range - ideally 70-90 for women.

CT3M is a method of taking T3 which helps your adrenals produce more adrenal hormones such as cortisol, by taking a dose during the main cortisol "production window", which tends to be in the last few hours of sleep. Here is a link to more info:

recoveringwitht3.com/blog/w...

My understanding is that a blood cortisol test can show "normal" cortisol, even if there is a problem, and that the saliva test is better.

I had really bad problems with anxiety and raising my dose last year on NDT and the major break through for me was adopting the CT3M.

Clare xx

[buzz123 in reply to Clarebear]

Did you do the saliva test yourself , or was it done by a doctor, Dr Skinner didn't think I had adrenal problems because my blood pressure was slightly raised, I never realised this was so involved and complicated , I am even more confused. If I see an NHS endo would they do these tests ? If so I will see if i could see them also.

[Clarebear in reply to buzz123]

It was Dr Peatfield who recommended the saliva test. I used Genova - there is a link on the main site here:

thyroiduk.org.uk/tuk/testin...

My endo wasn't interested in the results though so it was a case of trying to sort it out myself. I was stuck on 1.25 grains of Armour - blood tests showed still very hypo, but trying to increase caused hideous symptoms. I found CT3M worked very quickly. I have written some blogs about my experiences with doing it if you are interested?

[Clarebear in reply to Clarebear]

Meant to say post CT3M I increased to 1.5 grains and then 1.75 grains with very few problems. I am now on 2.5 grains but have been up to 3 grains, all without horrible problems raising I take 1 grain at 5am, although I couldn't handle this much in one go to start with though. xx

[buzz123 in reply to Clarebear]

Yes I am interested in any help i can get , its awful that we have find all theses things out ourselves.Where can I find these blogs. Thanks for your help and interest, I must admit I feel very alone at the moment and really want to move on from this asap!

[Clarebear in reply to buzz123]

Here is one blog which has links to all my posts about my journey with Armour. The CT3M ones start last June I think.... happy reading....zzzzz

thyroiduk.healthunlocked.co...

[buzz123 in reply to Clarebear]

Thanks again, I will have a look today, gotta get better soon surely!

[Moggie]

I know exactly how you feel regarding to much levo giveing you hypo symptoms and have only just managed to get myself up to 125mcg's without my heart skipping and racing away. I used to be on a T3/T4 combo but this is what caused my heart issues so GP stopped the T3 and sent me to an endo.

Just need to know if you have had all your vitamins checked properly and if so do you have any results you can post.

I was convinced that my remaining symptoms were all down to my thyroid but my endo was not so sure and he has now brought my VitD and iron levels up to an "optimum" range and it has made a vast difference in how I feel (especially the iron) and I have started to feel almost normal again.

If I were you I would take what you feel comfortable with, if you feel 10mcg's is a more manageable starter dose then start with that for a couple of weeks and see how you feel. The beauty of T3 is that it is almost instant so you will now very quickly if your body is going to except it. Has he told you to reduce your T4 at all?. If you do start panicking again or feel unwell then post on here for help and guidance. You are the one that knows your body better than anyone so its going to have to be you that calls the shots and manages your condition and the right level of medication.

Also you have got to bare in mind that some people really do not get on with T4 for whatever reasons and T3 is a far better option for them.

Moggie x

[buzz123 in reply to Moggie]

Hi Moggie,

thanks for your reply, no I have not had my vitamins checked, having said that last year, I was told my iron was abit low and to buy something from a chemist, always wondered about vit d. Actually I am meant to be taking 75 mcg and then starting the t3, but have found it so difficult to raise it. I really don't understand why my body is being so sensitive. I was originally on 150mcg, but was told to reduce it because of blood results, so really I am in such a dilemma I don't know what to do.My doctor has given up on me I think don't feel like going back to her. I actually saw Dr skinner who prescribed the t3 but now I am so worried about feeling even worse. Feel like crap now, with hyper symptoms on 50mcg. So confused !

[Clarebear in reply to buzz123]

What hyper symptoms are you experiencing? I only ask because I get symptoms which I considered to be hyper when in fact I am really hypo. I would class anxiety/panic, headaches, dizziness/vertigo, fast pulse/palpitations as being hyper, but for me they were definitely associated with being hypO not hypER. xx

[buzz123 in reply to Clarebear]

Yep, all of what you have said I experience also shakiness, yes obviously i am hypo, because my blood results say this, but it is very difficult to live with the symptoms everyday without any improvement when raising your t4 dose. Even when I was on 150mcg I wasn't right although I wasn't experiencing so many symptoms as now, I still had weight issues and generally not feeling right. I will have to persevere i suppose maybe t3 will sort me out. Thanks .

[Moggie in reply to buzz123]

If I were you I would get your iron checked again - if your iron is not right it can cause all sorts of symptoms. You also must get your VitD, B12 and folates checked as you could be confusing thyroid symptoms with low vitamin symptoms. Any of the above, if low, will cause aches and pains, extreme tiredness and brain fog, to name but a few.

Sorry just re- read my first answer to you and it should have read "giving you hyper symptoms" not hypo - can't really blame it on the brain fog either as that has cleared up an awful lot since taking iron.

I found that once I had taken to much thyroid medication my body took ages to re-balance itself. Like you I was even having trouble increasing my T4 by the smallest amount, even 25mcg's would start my heart playing up again. It can still play up at times but is a lot better than it was. I think the key thing is to do what you feel is right and starting with 10mcg's T3 (possibly split into two doses). As Clarebear has said your symptoms are all HYPO symptoms as well as HYPER symptoms and it can e very confusing working out what is what.

Moggie x

[buzz123 in reply to Moggie]

Thanks again for all your help and information don't feel so alone about it now, and also you feel like you are going mad ! I think my doctor definitely thinks that ! I didn't take any thyroxine last night and I do feel better, will take some today but it is a relief to feel sightly normal. I will embark on the t3 road tomorrow and see how it goes !

[Moggie in reply to buzz123]

Why are you going to wait until tomorrow? Why don't you start today? and please be kind to yourself and get your vitamins checked as no matter how much thyroid medication you are on without your vitamins being right you are fighting a losing battle.

Glad that you don't feel so isolated anymore - its a great comfort, isn't it, to be able to communicate with people who know exactly how you are feeling and what you are going through.

Moggie x

[buzz123 in reply to Moggie]

I am looking after my grandson today, that is why I am going to start with t3, I don't want to have any unwanted side effects as I haven't taken it before ! Wish me luck, oh and yes I will get my bloods done, I did have a whole lists of bloods done a few weeks ago ie blood count, cortisol plasmas, liver, kidneys etc. Surely my iron levels would have shown something up with those ? Anyway thanks for advice.

[Moggie in reply to buzz123]

Grandchildren and energy levels don't go together very well do they.lol.

I have my FOUR granddaughters every other weekend ALL weekend and it wipes me out. Having to run around after a nine year old, two five year olds and an eight month old is hell at any time let alone when you have thyroid problems.

Good luck and let us know how you get on. My blood count was showing a slight increased red blood count, which was an indicator for low iron but my GP chose to ignore this.

Moggie x

[buzz123 in reply to Moggie]

My red cell count is normal but my haemoglobin estimation is very slightly raised and also some other corpusc haemoglobin results are slightly raised also.My doctor hasn't contacted me at all about this having said this it says no action on these results, very confusing !

God you are busy I only have just the one at the moment , but need to be better than I am to enjoy him ! Take care will let you know how I get on.

[Moggie in reply to buzz123]

Just come across this link that might interest you. Its states that if you get anxiety or heart palps when taking thyroid meds you need to look at your adrenal function.

sensible-alternative.com.au...

Maybe ask the GP for adrenal test. Just thought it might be useful.

Moggie x

[buzz123 in reply to Moggie]

Yes I did know this, I had a cortisol blood test but it was normal so thats all they do on the NHS. You can do a saliva test but no one seems to take any notice of the results. I did say to Dr Skinner about this but he said you should have low blood pressure if you had adrenal problems and my blood pressure was slightly raised, so not sure if I have a problem with them or not. I am quite confused actually, just willing for someone to say to me yes thats whats wrong do this, if only !

[Moggie in reply to buzz123]

How strange - my endo said exactly the opposite, you would have HIGH blood pressure if you had adrenal problems.

As you say, very confusing.

Moggie x

[buzz123 in reply to Moggie]

Hi again,

well I have taken my first tablet t3 I split it so I suppose I've taken about 5mcg, so far so good. Was abit apprehensive but hopefully it will work !! Thanks again for al your help, its nice to talk to someone who understands all these complicated problems with this disease. Juliex

[Moggie in reply to buzz123]

Your stretching it a bit to say that I understand ALL these complicated problems.lol.

You learn through experience and I have been through the same experience as you regarding the body being sensitive to thyroid meds so was able and willing to help. What reaction would you have noticed first if your body wasn't going to tolerate it - mine was always my heart, it would go into overdrive and end up all over the place. Come to think of it that is the ONLY bad reaction I have every had from thyroid meds, in all other aspects I felt great - especially when on T3.

Keep us updated on how you get on wont you.

Moggie x

[buzz123 in reply to Moggie]

Yes I will , you are definitely more knowledgeable than I am, anyway i am hoping for some good results soon, I was looking at some other questions on here and came across a lady who was taking t3 and t4, she was on the same t4 dose as me 100mcg, now she is taking 30 mcg t3 spit thru the day and 37.5 mcg t4, so I am going to see how that suits me. You never know might be the winning numbers !! Ha Ha ! Speak soon. regards Juliex

[Moggie in reply to buzz123]

Please don't even think of taking 30mcg's of T3 until you have eased yourself in and gentle raised the level.

Taking 30mcg's of T3 could have a HUGE effect on you, so take it easy.

Do, at least, a week on 10mcg's first to see how you are, then raise it to 20mcg's for another week and if you are still o.k. then take the 30mcg's.

Moggie x

[buzz123 in reply to Moggie]

Yes that dose is my aim, I am only trying 5mcg at the moment and see how it goes and next week increase to 10mcg. I will be very cautious I can assure you. Dr S wanted me to take 20 mcg for two weeks and then increase to 40mcg, which to me sounds far too much and that is taking with 75mcg t4. I have been struggling to take 50mcg t4 alone, so all of that would put me into overdrive I think !

The thing is when you go and see Dr S in Birmingham, I live in Hampshire, you have to be very prepared to take everything in and I am afraid I wasn't having a good day that day and hadn't slept the night before so I came away in abit of a daze.He's a lovely man but could be abit vague at times, so was a little bit disappointed.

He's quite difficult to get hold of as you can't email him, only phone or letter which seems abit antiquated in this day and age. Anyway I shall take it slowly at my own pace !.

[Moggie in reply to buzz123]

Glad you are being very sensible about it all, I know how my body reacted to T3 and I am still paying the price, but saying that lots on here got on with it fine. I suppose what I'm trying to say is, like everything in this thyroid world we live in, what suits one does not suit all.

I have often read posts on here where people are desperately trying to contact Dr.S for advise but are unable and have often found this very strange.

Moggie x

[buzz123 in reply to Moggie]

Hi,

Yes unfortunately after taking my 5mcg of t3 this morning I am having symptoms of anxiety which is abit diappointing, its just like a feeling of your stomach churnng as if you are about to go to the dentist, very strange, so abit stumped now how to get round it I am only taking a small amount of t4 so thought I would get away with it. Maybe try t3 every other day, I don't know why can't it be easier!

Julie x

[Moggie in reply to buzz123]

I think you have got to remember that anxiety is also a symptom of being under medicated.

Moggie x

[buzz123 in reply to Moggie]

Yes I understand that, but don't like the sensation of feeling like this and am trying to ignore it and carry on, is there a better time to take T3, maybe later on would be better? To be honest I am fed up with thinking about it and trying to work things out ! Julie x

[Moggie in reply to buzz123]

It can certainly get you like that - you end up so sick of thinking this and changing that and that in itself can cause anxiety.

What time are you taking it and what time are you taking your T4?

Moggie x

[buzz123 in reply to Moggie]

Hi again,

today I took the T3 at about 8.00am, and I suppose about 20 minutes later I started to feel the anxiety, it has passed now as i believe it has a shorter time in the body.

I take T4 at night always have done seems to suit me better.

It is definitely to do with all the tablets because when I haven't taken them I feel much better, in fact seriously thinking not taking anything because I have less symptoms without !! I have never suffered with anxiety and I am not anxious now about taking these tablets, so it is most definitely the medication.

Regards Julie.

[Moggie in reply to buzz123]

Why don't you try taking your T3 with your T4 last thing at night - just before you go to sleep, that way you wont feel the anxiety but you must take it just before you go to sleep otherwise it might keep you awake (although it made me sleep better)

I used to take my 20mcg's T3 and my 100mcg's T4 all at once, at bedtime, and apart from my heart palps it seemed to suit me. Others on here take it of an evening as well, apparently its supposed to help the adrenals taking it of a night.

Give it a go for a couple of days and see how you get on.

I really wouldn't stop your thyroid meds if I were you - it can lead to all sorts of problems.

Moggie x

[buzz123 in reply to Moggie]

Thanks I will try that, good idea, sorry to be a nuisance, you have been very patient.

Hopefully I will get there in the end !

Julie

[Moggie in reply to buzz123]

Sorry for delay in replying - don't have internet access over the weekend.

Your welcome to any help I can offer - that's what this site is all about and yes most of us do get there in the end but need a little help throughout the journey.

Moggie x

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You may find that your T3 can only be increased every two or three weeks. Perhaps try 3 or even 4 doses daily? I don't know about taking with thyroxine though.