What's happening to me

Hello Everyone,

Can anyone shed any light on this please? I am having trouble taking T3, I have been building it up very slowly and have reached 5mcg every four days and I feel dreadful, So I have stopped it now and am scared to take it, I get these bursts four/five times a day where parts of me start to burn, my heart starts pounding and my heart rate goes to around 108bpm. I am exhausted and so muddled & Confused. I lost my sense of taste & smell and I am very tearful because I just can't cope anymore, I have done everything I can to help the T3 go in but I guess by these symptoms it's not. It does seem to do alot of good but I can't seem to tolerate it, Has anyone experienced this, I have got no one to turn to for help, My doctor is no help with this problem, he refuses to acknowledge my Adrenal Fatique. Please can someone suggest something.............

59 Replies

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  • I'm so sorry to hear you're so unwell. I don't know if I can shed any light on what's going on but may I ask if you have the support of a helpful doctor or some kind of practitioner? You may need one to get beyond this. Also may I ask if you're on any other kind of medication aside from the t3?

  • I have no support from a doctor - they do a blood test and that comes back fine just a slighlty underactive thyroid. I had the ASI test that shows I have adrenal fatique, I also have a multinodular goitre and leaky gut. I also taking all the normal Vitamins and have just started taking medicine for healing the Gut Lininng and am avoiding Diary, gluten, Tea & Wheat but no other thyroid medication. I did try Levo put that was dreadful and the same for Nutri thyroid

  • Do you have a copy of your latest blood test, with reference ranges, so we can see what is going on? Are you iron deficient by any chance as T3 is hard to take if you are?

  • Hello Hennerton,

    My last blood tests were taken in November, so must have changed by now and everything was in range apart from the TSH - that was alittle high

  • For many nutrients, being in range isn't really sufficient if you have a dodgy thyroid or adrenals - you need to get things to an optimal level.

    It would be worth posting your last results even if they are a little out of date.

  • Hello Humanbean

    these are my results from November

    Serum Free T4 Level was 11.8 pmol/L - Range 12.00 - 22.00pmol/L

    Serum TSH level was 6.27 miul - Range 0.20 - 4.20miu/L

    Iron Saturation was 67% when 40% was stated as the highest - Range 20 - 40 %

    Serium Iron Level was 33 umoi/L - 27.oo umoI/L was the highest - 8.80 - 27.00 umoI/L

    Serum B12 was 901 pg/mL - 866 being highest level - Range 197.00 - 8.66pg/mL

    The adrenaline levels - Unknown, Was told it was above range but had to do the test again

    It also said something about Peri Menopausal

  • Have you been checked out for haemochromatosis i.e. iron overload?

  • My doc keeps saying i am fine, so know need for more tests, I will ask him about that - thank you

  • Hi human bean they mean pre menopausal not peri xx

  • Is T3 the only thyroid gland medication you are taking?

    5mcg is an extremely small dose and sometimes too small a dose of any thyroid gland hormone can have an adverse effect. Another cause may be a sensitivity to the binder/fillers in the synthetic T3. The hormone itself wouldn't cause any problems.

  • Hello Shaws,

    I am only taking T3, I have tried taking larger doses but It has a terrible effect on me, If I am sensitive to the fillers, then what can I have in place of it? When I had my last blood test in November the doc said going by that I would only need a quarter of a tablet a week, when I tried that, it never done any good, but increasing it to a quarter every fourth day is making things unbearable, my mood has changed completely - I am grumpy, tearful and miserable. I am taking all the supplements I should be but their is no improvement on how the T3 is going in - I am presuming it is the T3 causing these nasty symptoms,

  • You could try purified levo and see if you have the same reaction without the fillers.

  • Can the Doctor prescribe it?

  • Yes, I'm pretty sure some people here have it prescribed. If you wanted to find out more you could post a question about it.

  • Thank you, I will ring and speak to the doc tomorrow, It will be like getting blood of a stone but worth a try

  • Good luck to you. If they say no you can always see if there is an alternative way of going about it. They are the first port of call but are often not the only option. :-)

  • Unfortunately It went badly, he wouldn't give me a smaller dose of T3, he said my Thyroid had properly recovered and that I didn't need any medication at all. I just can't believe it, I don't know how ill or miserable I have to become before they do anything.My friends, Family & work colleagues can see just by looking at me, how ill I am but not the doctors. I am so unhappy & don't know what to do

  • It sounds strange to be taking T3 every few days as it's so short acting - if you took T4 every few days it would even out but I'm not sure it would with T3. Sorry I can't be of any help.

  • Hello Aurealis,

    I agree, the whole situation is a nightmare, I can't take levo it doesn't agree with me. I have just had enough now, I need it to end

  • This is a list of thyroid hormone medications:-

    thyroiduk.org.uk/tuk/treatm...

    In case he would prescribe on a trial basis NDT, Naturethroid is hypoallergenic which may also suit you but very few prescribe.

    thyroiduk.org.uk/tuk/treatm...

  • Excellent, Thank you very much. I will ring & speak to my GP 2morrow. I can't tolerate Lactose, it never occurred to me that lactose was in T3

  • I had a similar awful response when I first started on T3. I found the problem for me was that I was starting on such a small dose and it had such a big, fast-acting response that my body was getting a huge up and then plummetting down effect because I was taking so little with so long between doses. It was creating too much imbalance. T3 worked better for me when I took it more regularly - small doses throughout the day. My body seemed to adjust to it and tolerate it far better. I am having problems with it again now some months on, so I don't have all the answers at all. I just know this was what worked for me when I first started taking it.

  • Hello Dee1,

    Sorry to hear you are still having problems with T3, Have you tried the CT3M - that may help? The doc said I only need a quarter of a tablet a week (which is completely not the case) so I thought of asking for a smaller dose and taking that, I can not every take a daily dose - last time I tried that I nearly ended up in hospital - So maybe T3 is not for me. I understand what you are saying and it makes sense so I might give it ago just not every day x

  • As well as reactions to fillers etc, it could be a low cortisol reaction to the body having more T3 on board. Have you checked your adrenals with a saliva test?

    I have experienced that when the body suddenly had some T3, the adrenals respond trying to sort themselves out and lots of the reactions are not good!

    Hope you feel better soon xXx

  • Hello Kosmickaz,

    I had an ASI test last July and I do have Adrenal Fatigue but I thought having the T3 would slowly help them. I have spoken to my GP - I don't know why I bothered, absolutely useless.

    Best wishes

  • Janie Bowthorpe author "Stop The thyroid madness" states you need good adrenals to tolerate T3.

    You mentioned that you are taking supplements. Are you taking Iron? Taking vitamins is a balancing act and can sometimes have a knock on effect with other vitamins. Taking too much Iron can interfere with zinc.

    Zinc is needed for good adrenals along with vit C and magnesium and B5. If you are zinc deficient this can result in loss of smell and taste. Brittle hair and nails and hair loss, I know because I suffered with these as a result of zinc deficiency. I'm looking for clues as to why your iron levels might be on the high side.

    Have you felt any benefits at all taking T3? Some people have a few days feeling well then a dip, and start to feel off again. This can happen and the article below would explain this.

    recoveringwitht3.com/blog/e...

    recoveringwitht3.com/blog/t...

  • Hello Yana,

    Thank you for your reply, I do not take Iron or Zinc. I do take Vit C, B5 and Magnesium though. I also wondered why my Iron was on the high side but I can't get any sense out of my GP. I have just spoke to him - made me so upset, he said that his guess was that Thyroid has recovered and I don't need any medication at all and that was that. I don't no how ill I have to be before they listen to me. I have had a lot of benefit with T3 and for the last few weeks things were going ok, then it all turned nasty and I was feeling absolutely shocking. I have had no medication since Thursday.

  • I've suffered with leaky gut and know were you're coming from. It makes any nutrition from your food poorly absorbed, also anything that you take to kill off the yeast will cause you to be ill for a week or so. It can take some time for the gut to heal properly. I have a number of books about "candida" and adrenal fatigue is connected to this.

    Also it can cause your thyroid to stop functioning properly. Some would say it's the other way round and it's a poor thyroid that causes "candida". Either way you need to sort out both. The supplements that are recommend for candida are almost identical to adrenal support. I will list the ones that I took that are recommended in my book.

    Magnesium 300 mgs

    Vit C 1000 mgs with bioflavonoids

    B5 pantothenic acid 500 mgs

    selenium 50 mcgs

    Zinc 25 mgs

    vitamin B6 20 mgs- 50mgs

    Evening primrose oil 1000mgs

    These are the supplements that I took that helped me recover from candida (leaky gut)

    There are a lot I know but i suspect if you feel like I did you would take anything. Obviously they all have to be yeast/soya/lactose free.

    You'll find that when you have healed your gut that you could tolerate small amounts of lactose. There is one supplement that I think will help mostly, that is zinc. This is the one that I feel is most important as it is a mineral that does heal. It make me wonder why your iron levels are so high. Possibly a diet high in iron? although I wouldn't have thought so. It makes me wonder if it's causing your zinc levels to be compromised. It's the fact you mention loss of taste and smell as these are notorious symptoms of a zinc deficiency.

    So at the moment you aren't taking any medication for your thyroid and the last time you had you TSH checked it was 6.27 in November?

    You do need to be on something. It might be that if you continue with the candida regime, you might be able to tolerate your medication. The only other option is to pursued your doctor to prescribe NDT as it's more natural.

    Hope this helps.

    curezone.org/forums/am.asp?...

  • Hello Yana,

    Thank you so much for your reply, I am so glad that I am not alone in how my body is. I am avoiding all Diary & yeast but Soya would be a problem because I am vegetarian so i do consume a reasonable amount of soya. I have got some zinc since reading your last reply and the only thing I need to get is evening primrose - (I will get some today) everything else I am already taking, Did you take anything to heal your gut lining? I have three products for that, that I have just started taking. My Doctor is going to stop all my Thyroid medication because apparently my Thyroid has recovered (not that I have had any more tests) Thank you Yana - I really felt so down in the dumps and thinking I wasn't ever going to get better, but If you are well then their is hope for me x

  • Yes I have got better but had to stick to a ridged diet avoiding sugar, and yeast and lots of other things.

    I took caprilic acid to make my gut more acidic as this helps to keep candida at bay. low stomach acid is one reason why it gets out of control and low stomach acid is common with thyroid sufferers. I also took "Acidophilus" probiotics which is the healthy bacteria that live in the gut. The more you have of that the better as it doesn't leave room for the bad stuff.

    The clue is in the name as it's acid loving and love's an acid environment. Candida thrive on sugar, and a high carb diet. I also took all the above supplements and more to boost my immune system.

    There are lots of other things that will help candida to die off and it sounds like you are on the right road. Stress can be a major contribution to candida also and personally don't think synthetic thyroid meds are particularly good, but unfortunately we have no choice

    You might just find that your thyroid could recover by itself, once you have recovered from leaky gut.

    Good luck.

  • Thank you Yana - lots of great info for me to follow

  • Hello Yana,

    Just wanted to say Thank you very much for your advice on the zinc deficiency, Since I read your reply I have been taking Zinc and my sense of taste has really came back (after 2 years of not being able to taste anything) I am sure my sense of smell will improve in time as well. The zinc seems to have improved the Candida as well. Thank You Yana x

  • I'me very pleased to hear you're doing better on the zinc. There's nothing like being able to taste you food! Thanks for posing, It's much appreciated!

  • If you have adrenal fatigue I wonder if anything is going to help until you've dealt with that. Certainly I couldn't get anywhere even with NDT until I'd supplemented my Adrenals. 'Super Cortisol Support' is what I use, from time to time. Made by 'Now Foods'. I get mine from amazon, but I'm sure any health food shop will have something similar.

  • Hello Humphrey,

    Thank you for your reply, I would love to take something to help my adrenals. When I typed in Super Cortisol Support on Amazon nothing with that title came up. I have had herbal rememdies they are not strong enough to do any good but I have a bad reaction to Cortisol, so i will have to find a way round it somehow.

    Best wishes

  • Hi Kitten Whiskers, NUTRI do a good adrenal support product, I used to take it years ago for fatigue and have just ordered some again. Try Nutri-supplements.co.uk. They also do various thyroid products. Good luck.

  • Hello AnnaG75,

    Thank you for your advice. I have taken Nutri products but they caused problems for me, my stomach is so bad that everything seems to upset it. I have been taking medication to help the stomach but it's early days.

    Best wishes

  • Hey honey I take RAW Adrenal, just type that into the browser, not sure if it is the same thing tho. I also take NDT I source online. And I only drink goats milk. Boy when I started that so many problems went away. I make my own bread half spelt and half regular flour, and I do not get wheat problems now. I also take DE everyday and it helps to keep out bad bugs, but you have to take a probiotic too. Hope that helps. X

  • Thank you very much x

  • I'm sorry you're going through all this. I'm afraid I don't think you'll be able to take a decent dose of T3 until your adrenals are better; that was certainly the case for me and they explain all this on stopthethyroidmadness.com. I don't really understand why you're taking a dose every few days as T3 is short-acting, so I would imagine you'll feel dreadful over the hours after taking the dose (if it's too much for you) and dreadful the rest of the time with hypo symptoms (I get palpitations and anxiety when I'm underactive). I had to take small doses throughout the day until my cortisol levels were in the normal range (I get my tests from here: purehealthshop.co.uk/shop/a... and then I found I could increase very gently every few days. The trouble with taking T3 is that the tablets only come in ridiculously large 20mcg size so I found it easier to manage taking natural desiccated thyroid, which is harder to get hold of. If I were you I would try chopping the tablet up into really tiny chips and just taking a tiny amount every 5 hours or so. Stop the thyroid madness recommend putting it under your tongue to absorb it sublingually, although I've heard on here that the hormone is too big to be absorbed that way (which doesn't make sense to me as I gather T3 is small enough to enter cells). If I took too much I would feel jittery about 2-3 hours after taking it, as that's when the hormone peaks in the body, and I would try taking less next time. But even just tiny doses helped to keep the hypo symptoms at bay and I felt it was more stressful for my body to cope with me accidentally taking too much sometimes than deal with having far too little thyroid hormone all the time. Just try to manage it so that you feel as well as you can and follow all the advice for helping your adrenals, like eating regularly and getting as much sleep as possible. I hope you feel better very soon.

  • Back to say that the circadian method of using T3 can boost the adrenals, as I think someone has already mentioned. The T3CM yahoo group is really good about advising people on this so it's probably worth becoming a member and posting there.

  • Hello Zabby,

    Thank you so much for all the info. The reason I was trying to take T3 every four/ five days was because I had terrible symptoms when I took it every day, so I though trying to get it in slowly would help but It hasn't. T3 does keep the worst of the aches and pains away but everything else is awful. I do have the T3CM book but I am scared to try it, as you said the T3 is so powerful and even just having a quarter of a tablet has been shocking. I can see that I need to change what I am doing and will try taking tiny powdered amounts every five hours, what time was your last dose? Thank you

  • I think it's worth trying. I took some when I woke up (7.30ish), and then maybe every 5 hours or so, so 12.30, 5.30, 10.30. As long as I got the dose right (ie, not too much), the late night dose was fine and in fact I felt hypo without it. I often had to set my alarm for about 3ish to take another tiny dose because otherwise I woke up too early feeling breathless and with my heart pounding because my thyroid levels had dropped. It took a while to work out how much to take but it was amazing that even taking tiny, tiny doses could make me feel better than if I didn't take any. Ask the T3CM group about the circadian method too because it might be worth trying to take a small dose at the appropriate time. They say that it needs to be a big dose, like 10mcg, or at least 5, but it was developed by someone who had a resistance to thyroid hormone so he needed to take big doses to get any effect from T3, whereas I notice big effects from small doses, so I think it's possible that even a small amount could give your adrenals a bit of support if you can get the timing right.

  • Thank you so much Zabby - you sound like you were in the same boat as me, I only need tiny amounts, Did you take it every day though? were you taking quarter of a tablet in total throughout the day? or could you tolerate more? Sorry to keep asking questions

  • Yes, I take thyroid hormone every day. I don't think it's a good idea to take it all in one go as it's short-acting (although I know that for people with healthy adrenals who are taking one big dose a day there are apparently benefits to taking it all at once). But for people who are trying to switch to it and build up their dose it's much better to take it throughout the day, and every day. I only took T3 briefly when I came off thyroxine to clear a reverse T3 problem and then as soon as that cleared I couldn't tolerate what I was taking (5mcg in the morning and 5 at lunchtime, which is what my doctor had suggested to start on and I hadn't been able to increase from because of adrenals) so I switched to Erfa desiccated thyroid which comes in tablets that have 4mcg T3 and 18(?)mcg T4, so it's easier to do a little dose. When my adrenals settled down I worked up to 4 tablets a day, then had to go down to 2 when my adrenals did something funny and started pumping out too much cortisol in the morning and not enough for the rest of the day. That works out as 3/4 tablet in the morning, 1/2 a few hours later, 1/4 late afternoon, and 1/2 as I'm going to sleep. As I was increasing the dose I just played it by ear, really, but it will be more difficult for you on the high strength T3 tablets.

  • Hello Zabby,

    Thank you so much for this information. Things have gone very wrong on my 5mcg of T3 every fourth day and now i haven't had anything for six days, I do feel awful , everytime I eat something my face and legs start to burn and my heart pounding - It takes hours to ease. It is a case of how long before I start up the T3 again. I did have strong words with a doc last night and she has agreed to give me 2.5mcg tablets - only 14 tablets so that should make things more managable (I hope) Levo was really bad for me and a private doc said I may have the conversion problem, so that means I wouldn't be able to tolerate Erfa or Armour, so I have to persist with the T3. I feel so bad and can not think straight. I am so glad that you are better, it does seem in my case that the Adrenals & possibly the leaky gut are playing the biggest roles in stopping the T3 getting in. x

  • Oh, can you get 2.5mcg tablets? That's fantastic! I remember that before I was diagnosed with underactive thyroid my heart would beat so strongly whenever I'd eaten that I could see my ringlets moving with each beat out of the corner of my eye, so that sounds like a hypo symptom to me and should improve with the T3. Try cutting the tablets up really small (I found it better to snap my pill cutter closed rather than close it gently, as that made the pill crumble), although you might have to chop them into really little chunks at the moment and just play it by ear. You might find you can tolerate more first thing in the morning and less late afternoon/early evening, as I did. Hopefully when you take a little chunk you should feel some relief of your symptoms, and if it's followed by starting to feel jittery and worked-up then you've taken too much. Remember that the dose peaks in the blood about 2-3 hours after you've taken it but don't fall into the trap that I did of thinking that if the jitteriness seemed to happen after that then it meant that it had worn off early and I'd started feeling hypo as I found I was still over-dosed and made it worse when I took my next dose early! That's why I spaced them out at about 5 hours. If you're going to pick up a prescription from your doctor I would also ask for a low dose of propranolol (beta blocker - I have 10 mg or mcg) and if you've taken too much T3 you can take a bit of one of them (I find 1/8th tablet can do the trick and if not 1/4 is good) and it should make things easier. Beta blockers do stop your cells using T3, or remove it from the body, or something, so don't think you can improve things by taking a higher dose of T3 and a beta blocker to sort of trick your body into getting more into your system, as it will be counter-productive! Just try to find the small, regular doses that make you feel as calm and comfortable as possible without being too much and that will hopefully make life much easier for you and help your adrenals to start to heal. Hope that helps!

  • You can get 2.5 mcg capsules - specially manufactured to order. There were 20 prescriptions for them in England in November 2013. The cost? About £314 prescription.

    Rod

  • Uh....wow! 20mcg is a ridiculously high dose for lots of people so hopefully if more people start taking T3 the costs will come down and someone might introduce a smaller dose as standard. I'm not a chemist but I find it hard to believe that it's cheap to manufacture T4 but very expensive to make T3 so I presume the higher cost is simply because they can't sell as many.

  • That is expensive - no wonder it is hard to get T3 on prescription.

  • Thank you so much Zabby, you have put my mind at rest, I thought their was something really wrong when I had those issues after eating, I have restricted lots of food to help the leaky gut - So I am over the moon that It is just a Hypo symptom. The Doc was going to stop my medication all together and I went in and made a complaint, that's the only reason I managed to get 2.5mcg they are not licensed and no chemist will stock them so they have to be ordered in, I know I only have 14 tablets but i am hoping to convince her to give me more. I will follow your way of doing things and hopefully I will get well........ at long last. Take Care Zabby & Thank you for the advice x

  • You're welcome, and do message me if I can help in any way!

  • That's very kind, thank you very much

  • Hello Zabby, Sorry to trouble you - just wanted to ask you if you think this is normal? - I started on 2.5mcg daily divided into five doses (7am, 10am, 1pm, 4pm & 7pm) - all was going really well, after about six days things started going wrong and my pulse was getting high, so I though as my Hypo symptoms were getting worse I would increase my dose to 3.75mg and that seemed to cause issues and never done any good. Went back to 2.5mcg but really not feeling good at all, pulse is high, parts of me have been burning all day, while other parts are ice cold (breathing isn't to bad though) So I will stop the T3 now and have a few days off. Is this how it should be? I can see that I increased the dose to much but keeping at 2.5mcg really isn't enough.

    Is this how it was for you ?

  • I wouldn't stop it completely as I think that will make you feel terrible. It's really hard to say what's going on. stopthethyroidmadness.com website says that people starting on a low dose can find that their thyroid produces less hormone as a result and they then get hypo symptoms and have to increase, but you didn't find that helpful so that may not be the case here. I found it better to space my doses out by 4 and a half or 5 hours. That way I could see how I felt 2-3 hours after taking it, as that's when it's at its peak in your blood. If I felt jittery and had palpitations (and I would feel strangely hot and have cold hands - I think it's the adrenaline) then I knew that that dose had been too much for me, and I could wait for it to wear off before taking the next one. If the doses are all bunched up together it just gets confusing. For example, if your pulse is higher 5 hours after taking your last dose then it's because you're hypo and it should start to drop when you take the next dose, but if it's uncomfortably fast 2 hours after taking it then you've taken too much. What's your pulse like in the morning when you haven't had any for 12 hours? And how do you feel at night? I would feel jittery and find it difficult to sleep if I didn't have some at bedtime. You could try taking the 0.5mcg dose tomorrow morning and monitor how your body reacts to it over the next few hours. I did find that my cortisol levels swung around a lot, sometimes getting better and sometimes getting worse. Currently they've swung too high, which is causing all sorts of problems! Let me know how you get on.

  • Hello Zabby,

    Thank you very much for replying - I really appreciate it. I am sorry your cortisol levels are high & that you are still poorly, thats very kind of you to help. When I started the 2.5mcg dose My waking pulse would normally be between 77 - 88 but my evening pulse would be from 92 - 126 this was because from about 8pm I would become completely exhausted, my breathing laboured and parts of me are burning, so I went to bed but can't sleep, I lay wide awake most of the night, trying to get comfortable. When mornings come around I am not to bad. This has changed since I tried to increase the dose, the burning has been most of the day today, I seem to have alot of acid and all my musles are painful and lumpy under the skin and it feels like the lower part of my back is swollen.

    Also my knees are rapidly changing colour but on a brighter note I am not so exhausted at the end of the day.

    Maybe I am rushing things, maybe I should stay on the 2.5mcg dose for months before doing anything, It just feels that I need so much more.

    I hope you reduce your cortisol levels and become well again, I will spread my doses out more and keep a diary.

    Best wishes

    Debs

  • You're right, K-W - Now Foods have disappeared completely from Amazon. And on their own site I don't see the Adrenal supplement I took. Odd.

    However, here's a link to other Adrenal supplements on Amazon; amazon.co.uk/s/ref=nb_sb_ss...

  • Hello Humphrey,

    Thank you for the Link - that brings up quite a selection, which one do you recommend? I have had the Dr Christopher's Adrenal Formula but it done nothing for me, need something a bit stronger.

  • I felt that the supplement that I was using worked for me. I don't think it would be right for me to suggest an alternative to it that might work for you - especially as you say you have stomach troubles enough already.

    Perhaps others with similar gut problems to yours may have suggestions?

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