Hello everyone , I am a bit down in the dumps - I took 0.75ml (2.5mcg) of T4 yesterday and although it done some good it has gone very wrong and I now have to suffer such horrible effects - I find it ridicous that my body can not tolerate the equlivant of 2.5mcg of medication every four days - so now I will have to resort to 2.5mcg just once a week - it is a crazy situation to be in and now I am suffering miserably yet again, I then ask the question .......... will my body ever get used to this so called medication and will I ever get better : <
I never sleep - I have tried various things, and I know that isn't helping my adrenals
I feel my life is racing past and their is nothing I can do, I wonder what's in store for me if I don't sort out my health soon as I have been ill for so long.
My partner is very poorly and I feel a failure not being able to look after him as I should, I feel stupid because my brain doesn't work how it used to and I am often confused, and stressed over the exams I will be facing shortly and with coping with my full time job.
I hate living where I am, such unpleasant neighbours so in a nutshell everything is wrong.
Thank you for listening : <
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Kitten-whiskers
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Is it possible to get a RT3 test done. If such a small amount causes distress then you could just be allergic to it. Hormones are pretty powerful and it's not impossible that though you desperately need thyroid corrected you may have to go a different path if auto-immunity is triggered.
I think you already have Hashis- but it's a while since we talked here.
I read a while back that Levo was developed using a different DNA model to the average European which is why there's such a disparity in results using it.
I have never had a RT3 test done but I will ask when I see my endro in February.
How do you get tested for Hashimoto's? It has never been mentioned by my GP or the endro.
I have tried NDT and T3 and they were even worse than this liquid.
When I first started the liquid I had a daily dose for nine days and then it went wrong and now I am on betablockers, I am exhausted because I rarely get any sleep and full of lots of horrible symptoms.
That is what I am taking, it has been an improvement to the tablets but its not great
Kitten whiskers
I'm so so sorry you're suffering like this. It must be awful and I completely get how hopeless you must be feeling. But... I genuinely think that it isn't the levothyroxine that's making you feel like this. You aren't taking an amount that could cause the reaction you're describing. You get more exposure to chemicals from taking a dip in the local swimming pool or cleaning your toilet, even putting washing up liquid in a bowl of hot water. I know you're going to hate me for saying this, but I think the reaction you're having is panic-induced. Now, you might say, "how can this be panic, when it makes my heart rate rise so much?"
I had a long think about how to explain this, and eventually found an example of something in my own life. For years, I was terrified of having to give presentations. I'd force myself to do it, but hated every second - the build up to the event, the preparation, trying to think of all the awkward questions I might get asked, how embarrassed I'd be if I didn't know the answer. On the morning of a presentation, I'd have a massive tummy upset, sometimes just one end, sometimes being sick as well. And when it came to actually standing up to speak, my heart would be pounding, going horribly fast, my hands would be clammy, I'd feel slightly dizzy, sort of out of my body. Because I scripted everything, I'd manage to get most things out, but be horribly breathless, say words wrong etc. and afterwards I'd be utterly exhausted, wiped out for the next couple of days.
Something totally unexpected happened when I took a course of Prozac a few years back. I had to deliver a presentation and although I was still a little nervous, I found I couldn't get really worked up about it - that's how the drug worked for me, LOL. It kind of distanced me from, well, *me*. I couldn't be bothered to have all the thoughts about making a fool of myself. The presentation went brilliantly and I barely felt anxious at all. So did the next one (I have to do these things every few months in my current job). And the weirdest thing of all, even when I came off the Prozac, the next presentation was easy too. It was as though my brain had learned that I didn't need to be nervous. I've never found it much of a problem since.
I think - though of course I could be wrong (I don't know you) that something similar is happening to you every time you take a dose of Levo. You take it, and expect to have side effects - and sure enough, they turn up. It would be interesting to carry out a placebo test - to have someone switch your medication for something else without you knowing - to see what happened, whether you still had the weird reactions.
Please don't be offended by the suggestion that this might be all in your head. Because actually, most of our reactions to things are all in our heads. Hypnosis and neurolinguistic programming work on this basis. Paul McKenna wouldn't have sold any books if it didn't work. You can persuade hypnotised people to cluck like chickens, give up smoking, even lose weight.
I wish your doctor would take more pro-active action with you and not just leave you to suffer. It's not good enough to simply throw propranolol at you and send you on your way. He's failing in his duty of care to you. Hypothyroidism, if left untreated, can have horrendous effects as we all know - there's a reason people diagnosed with it are given free prescriptions!
I think it might be time for an open and honest chat with your GP to find out what he's really thinking and to request that he helps you to get well.
in reply to
Couldn't have put it better myself LilyMay - well, apart from the chicken clucking lol.
Kitten-whiskers, you will possibly guess from my name that i am a clinical hypnotherapist. I understand why we all - myself included - get upset when told by GPs, that our symptoms are "just" depression because if we have reactive depression to being inadequately medicated, the solution is to deal with the causal factor, not just dole out antidepressants or CBT (both of which have their use but not to replace inadequate thyroid meds).
But given your circumstances I think that what LilyMay Is suggesting, is likely to be right, and that what you maybe need is professional help to reset your panic button. If you can pay, I would suggest clinical hypnotherapy but if not, CBT through your GP would be better than just spiralling down, unsupported.
If you would like to PM me about anything specific to explain what might be going on, don't hesitate.
My life would be much easier if what you was saying was correct but in my case this really couldn't be further from the truth. When I was first Diagnosed and I never knew anything of what the thyroid medications could do - It still happened - and once it went wrong that was it.
I have symptoms that are not characteristics of just a thyroid issue and have had them for years - in my case something else is going on, it most certainly isn't in my head - I have always been fully aware of what damage can be caused with thinking wrong and what seems very real is just your mind playing tricks. If I took thyroid medication every day I would end up in hospital
Hello kitten-whiskers, thank you for getting back to me. Please let me stress that I wasn't implying that I felt you aren't ill, not at all, it isn't ever an either/or situation in any case. I was picking up on your comments about your partner, your studying, your work, and your neighbours, and how clearly these are impacting on you, understandably.
I recently attended an appointment with my Endo who said he couldn't help me but that he'd recommend to my GP that I had counselling. Had he said that whilst he was working with me to address my symptoms he'd also recommend counselling to run alongside his treatment, I could have appreciated his suggestion, but as a Professor in his field he was simply excusing his demonstrable lack of expertise or interest in helping me feel better by offering counselling as a poor salve to my "chronic symptoms" ...... So I know how that feels. But while you continue with your search for treatment for your medical issues, I was just thinking that it might be helpful to have some support (of whatever sort) to help with the other "stuff" that you are dealing with. The neutrality of an independent third party, if you like.
I wasn't intending to upset you, and wish you well with improving your help. Do please let us know how you get on.
This doesn't help those of us that cannot tolerate T$ or any other thyroid meds. Our brains are being starved of positive energy through the chemical imbalance.
Counselling, or hynotherapy, no amount of it will help until we get our thyroid levels under control. It is biologically impossible! I have had hypnotherapy and felt amazing for about six weeks after I had been. But chemicals will not be denied in this issue and your statements only fuel an intense fire of self doubt that some of those suffering find very disturbing.
donna8077, it may be the case that my statements have fueled "an intense fire of self doubt" in you, for which I am sorry, but you aren't able to speak for others who read my post, as that would be mind reading, surely?
I wrote to kitten-whiskers on the back of LilyMay's considered and thoughtful post, offering the perspective of someone who has been hypothyroid for 34 yrs and a clinical hypnotherapist for 14 of those. I was, and remain, only concerned that a fellow human being is suffering the effects of ill health, what ever the cause. My view is that NO one therapy works for everyone, every time, for every problem, and that's as true for hypothyroid treatment as it is for hypnotherapy. And I don't believe that in anyway did I suggest that Kitten or anyone else should ditch thyroid meds in favour of any other therapeutic intervention. Nor would I.
What I wrote in my first post was that:
"if we have reactive depression to being inadequately medicated, the solution is to deal with the causal factor, not just dole out antidepressants or CBT (both of which have their use but not to replace inadequate thyroid meds)."
I don't think that could have been stated more clearly.
Then in my second post to kitten, I wrote:
"while you continue with your search for treatment for your medical issues, I was just thinking that it might be helpful to have some support (of whatever sort) to help with the other "stuff" that you are dealing with. The neutrality of an independent third party, if you like."
And again, there I am underpinning my suggestion about accessing support whilst still searching for amelioration of the clinical symptoms.
If my posts, and my points, lack clarity, I apologise for that. However, from the tone of your post to me, it seems that you haven't accurately absorbed the points I made, and have missed the salient points; and instead have decided to attack me for holding a view that is different from your own.
And since life is too short for virtual arguments and aggression, I chose to leave you to it.
I would love nothing more than for this all to be in my head because that way it would be much simpler to deal with. Their is nothing I want more than to be well.
When I first started on the liquid T4 it was wonderful - I had nine days of things going really well and then it went wrong and has been going wrong ever since, sometimes I get a few days where I really don't feel to bad and it seems to be working but then it just goes wrong.
Their would be no point in seeing my GP because in his eyes it is down to the endro and the endro isn't forth coming in an opinion.
I have tried taking other forms of thyroid medication on a daily basis and been extremely ill indeed - it is clear to see when looking at me that i couldn't be making it up
hi there kittenwhiskers , I used to have the same type of reactions when I first took over as chair of my local t.r.a. and had to attend many meetings and preside, present ,control etc.. as well as take decisive decisions ----- every day there was a meeting I would not eat /drink ,knotted stomach anxious etc.. but I found that with the attitude that I now have ----- if I muck a bit up ..so what .. how many others would be able to do what I am about to do and be willing to do it ........the advise above from lily-may is in my opinion well worth thinking about ---- never forget that if it 'don't work for you ' you can start again with another regime that may well work for YOU in all of our different positions there is no ' 1 SIZE THAT FITS ALL' ------hypnotherapy works for some ==== but not for others ----- placebo works for some ==== but not for others you just need to be able to get to the optimal that works for YOU . because after all as I have said what works for some may not and will not work for everyone ......hope this may help and that your other half is well and your both trying to look after each other .......alan xxx
Thank you for your advice, as I have said to LilyMay and Hypnoteq this really isn't the case for me.
If ever I ask a question (not very often) then this is the response - so not really helping. Years and years went by when I was going to the doc with this illness, oh its stress etc and it wasn't at all - 14 years went by as my health was going down the drain before my illness got picked up - only by luck, so I am not going to go down that road again.
I will be removing my self from this site, as clearly their is nothing wrong with me.
KW, please don't leave, no-one is suggesting there is nothing wrong with you or that your illness is in your head, they're offering coping strategies which may, or may not, help you as you don't appear to be getting support from your GP and endo.
As you are vegetarian, has your B12 level been checked and do you supplement B12?
I agonised over whether to write what I did and almost didn't, as I was afraid you'd take what I said the wrong way. Please don't leave, I'd feel awful about that.
I am appalled that your doctor won't help. I don't understand how you could be knowingly left in such a mess. I can only conclude that your doctor thinks it's all in your head and needs to understand that it isn't. It even makes me think that if taking Levo every day would put you in hospital, maybe you should do it. You need some support with this.
Before my OH was diagnosed with thyroid issues I had no idea just how incompetent the medical profession were capable of being. They've got an incredible blind spot about all things thyroid. I realised very quickly that the only way to get help was to *demand* help. To make lots of noise, to make a fuss, to be persistent - all the things us "good girls" wouldn't normally dream of doing. I don't think it's a coincidence that hypothyroidism is undertreated and that it's predominantly a condition that affects women (sorry Alan! :)). If more men got thyroid issues, I think there might be more notice taken of it.
Please stay. Please let others here help you work this out. Big hug xxx
Poor you - you have so much going on in your life. It would wear down a person who is well, which you aren't!
There are some interesting suggestions below. There is some positive action you can take, which may do much good and cannot do harm.
You mention your Adrenals. Are they in good fettle? Are you keeping your vitamins and minerals topped up? A lack in any of these aread can produce a surprisingly sharp reaction (I've found that myself).
Someone else has enquired whether you've thought about trying NDT. A more natural product might just help. Are you vegetarian?
My adrenals are not in full fettlel but I do take lots of vitamin C and lots of vitamins and supplements - so hopefully I have that covered, I have however been able to come off Hydrocostisone more recently - so they are improving.
I am vegetarian and have been since I was 14, I have tried lots of differen't thyroid products but this liquid has done the most good, so I am reluctant to change.
I am so shocked that reading through your posts people keep seeming to tell you.... it is you. Jesus guys is it too much to ask for a support forum to be a support forum?!!!
It is not in peoples heads. I desperately wanted T4 to work for me and I cannot tolerate it so what Kitten is saying here rings true for me! This mind over matter works very well for people not dealing with what we are. It is bloody hard and I think some of you should be ashamed of yourself!
Do you remember how ill you all felt before you were at the point you are? People offering "coping strategies" that just didn't work for you? Or did you all just work it out with those coping mechanisms? If you did work it out then bully for you but when you are desperate, when you have no hope you need greater support and maybe just a pinch of tactfulness to tread lightly. I know how bad I felt not two weeks ago when I felt suicidal daily. It is not within your control because the chemicals that affect you are switching these thoughts on. I'm glad I didn't come here for a further emotional beating.
Tread lightly, please, please tread lightly because I know if I had been on the receiving end of this it would make me feel very alone and hopeless!
Kitten_whiskers, you are in my mind, have been since I saw this thread. You know where I am if you need anything. I truly mean that!
Yes. It is meant to be a support forum. I spent an hour, possibly more, writing my first reply to KW. I did that because having read many of her posts here over the last few months, I wanted to offer some support and personal experience.
Thank you for telling me I should be ashamed of myself for doing that. That's extremely supportive of you.
I don't know why Levo doesn't work for you, Donna - I haven't read any of your posts. But KW is barely taking *any* Levo. As I said, she's exposed to greater quantities of washing up liquid in an average day. So to say it must be the Levo causing her rapid heart rate, sweating, etc doesn't make any sense because effectively, she's not taking any. Whatever's going on here may not even be a thyroid problem, though it certainly looks like there is a problem with her thyroid, judging by her blood test results. The symptoms KW gets could be due to many other things. Her doctor needs shooting for allowing her to believe that a pitiful amount of levothyroxine is responsible for the symptoms she's experiencing. That can't possibly be the case and her symptoms need urgent investigation.
I'm as fed up as you are with the crappy treatment many of us receive from the NHS these days. And KW, you've been on my mind since last night when I first saw your post. I'm sorry what I wrote has been misconstrued as being unsupportive. It certainly wasn't intended to be and I just hope that one outcome from all this is that you realise you deserve to be taken more seriously by your doctor and demand better. I had to kick a$$ (as they say in the States :)) to get appropriate treatment for my OH (who despite being a former intensive care nurse was so messed about by the system that she lost the will to fight for herself). And I think that's probably what you need too - someone to fight your corner and get some answers.
I can only speak from my experience of being unable to tolerate replacement. It took me 2 years of VERY slow increases to tolerate a reasonable dose of NDT and I am still very symptomatic so am trying T3 but again in very small increments. sometimes I had to reduce the dose right back down again for a month then try a small increase again (even down to cutting 1/4 grain tablets in half). Each increase seemed to make my symptoms worse and I often had to spend days in bed. It has been a painfully slow process and I would just say persevere, return to the dose you can tolerate for a few weeks and try again. It is so hard when you feel so unwell and just want to get better.
Kitten Whiskers, going back to your post here, I am wondering when you say it goes wrong after taking your thyroxine, what exactly happens, is it that your heart is racing? How long have you been Hypothyroid? have you had your B12 tested? Why and who has put you on Beta blockers is this recent?
Sorry for the questions but I though it would help to see what is happening with this medication more clearly.
Sorry I should have added more detail - when things go wrong, what tends to happen is that I get pains and soreness around the chest and ribs, my breathing becomes laboured and my pulse high around 126bpm (if not taking betablockers) my throat, back and legs burn and become bright red and sweat, while the rest of my body is freezing cold, and I get a very sore throat and a lot of pain in my ankles and wrists.
I was diagnosed Hypothyroid about four years ago, but have been ill for donkies years before that - so at a guess untreated for about 14 years.
I was put on Betablockers about four months ago but have had to lower the dose because of such restrictions around the chest. B12 was tested 13 months ago and was slightly high (I do take Vitamin B complex) and loads of other vitamins.
I have adrenal fatique, stomach problems, low stomach acid and have intolerances to lots of things - so I feel awful : <
Let me just add that I have a RevT3 of 90 X the max right now- unless it's a mistake. I felt worse on T4 I can definitely state even though I knew I had a RT3 problem intuitively.
If Iron, Vit D B12 Selenium,Zinc, Copper are all good it won't matter- to some people synthetic hormones ,particularly Thyroid ones are poison. Simples.
For all I know the high T3 even if 2 decimal points out is still at the top of the range, whatever!
I think the DNA link added D102 genetic factors has already been flagged by research as meaningful in this problem area- but Endos are still pooh poohing RT3 and daily low temps as rubbish when even the inventor of their precious TSH test says Barnes Temp scenario is a better test of Hypothyroidism.
It's a lonely trail KW- stick around and don't fall for the Pschco talk, however well meant it is not helpful.
People don't know this but I remember you are in medical training anyway and up to speed already
I hear you. I can't get my free T3 level up into the normal range. T3 is very important to our brains. I think there's more T3 receptor sites on brain cells then any where else in the body. So if you're low, you can't think as sharp and can struggle with depression. It's not your fault, it's your illness.
I also can't tolerant thyroid meds, except in small amounts. It's all due to adrenal fatigue. You must have a bad degree of adrenal exhaustion. The adrenals will suppress the thyroid in an attempt to lower metabolism and force you to conserve and rest. Any excess thyroid med will pool in your blood, because your body isn't letting it work in your cells. So you have bad reactions.
I'm having a ACTH stim test. I already did the saliva tests which showed how bad my cortisol production is. I'll probably end up taking hydrocortisone and then see how well my thyroid works and then up the dose of Armour I'm on.
You always must fix the adrenals first. Look up my post here, "adrenal ignorance" we had a good discussion on it and also about stress.
KW, are you still taking supplements? A cruise through older posts of yours suggest that you've taken/are taking;
5mg Hydrocortisone daily, Enzyme Digest with Betaine, Enzymes & peppermint Oil, 3 x 370mg Slippery Elm Bark, 1000mg Evening Primrose Oil, 500mg of Calicum, 250mg of Magnesium, 1000mg L-Glutamine, 1000mg of Flaxseed oil, 200up of Selenium, 30mg of Sea Kelp, Vitamin B Complex, 30mg of Chelated Zinc with 1.50 of Copper, Vitamin E the D-Alpha form 200 iu, 3 x 500mg of Garlic, Vitamin C 1000mg with rosehips & Citrius Bioflavonoids x 3, Acidophilus 3 billion active cultures x 2, Aloe vera juice and Saccharomyces Boulardii + MOS, Perm A Vite Powder and Gastrocort LI
Yes, that's what I was going to ask. Perhaps something can be done about the cause.
I get a high heart rate when I exercise (probably as my ferritin is on the floor and I don't get enough oxygen) and after a hot bath (when my BP drops), but the rest of the time it is fine (or low). Cardiologist said that beta blockers would make me feel worse (even though I have a lot of arrhythmia).
Beta blockers can make you feel very unwell. I could not have them when first diagnosed with Graves as I have heart failure. Your GP really should investigate before giving out such medication :\ Maybe a referral to a Cardiologist would be in order, as it may not have anything to do with your thyroid condition anyway?
kW Thanks for the explanation of what happens to you when you take thyroxine. Gosh, that sounds pretty dreadful, I am afraid that it is beyond me, I only hope that your doctors can look at your overall health and find out what is going on.
One thing I note is that you say you are taking a lot of supplements, does your doctor know about all of them? even though they may be considered natural, if it is a lot they may not be helping. The body can only deal with so much.
Thank you for your reply, I did mention I take lots of supplements but I don't think she really said anything, but you could be right - I will look into it
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