I haven't posted on here for sometime, as I don't want to waste anyone's time but I have finally reached my breaking point. This maybe a long post but I feel I just need to talk about just how ill I now feel.
My health history is Anorexia for over 15 years, in hospital many, many times. A very rare long term chronic liver condition which requires me to take Blood thinners, which in turn causes me to have an enlarged spleen. I was diagnosed with fibro (but not sure about that) and I am a coeliac for around 6 years. I got diagnosed with an underactive thyroid about 5 years ago.
I have tried Levo before and found it just made me feel worse, so finally after many years in desperation I sought out Dr Peatfield to see if he could help me. He told me that because of my long-standing chronic stress and health problems, my adrenals had virtually given up, he prescribed me Adrenavive and Metavive and told me to add some T3 to see if it helped. I can't say I felt much better so I kept in touch with him, and he told me to just take more Adrenavive if I needed to. I still felt Levo was making me feel worse (or at least not helping me feel better) so I stopped the Metavive and last June I slowly weaned myself off Levo altogether and replaced it with T3 only and my Adrenavive.
Between June and December 2018, I finally started to improve, after so long I felt it was never going to happen, I lost weight, gained energy, hair/skin/nails improved, my oedema was going, and my mood lifted, honestly, I finally felt better. Then everything went wrong. My T3 was Tiromel ( 100 was my dose) and I was happy on that (I had worked up to that over the time period) but I self medicated and my source disappeared, so I had to lower my dose to eek it out over quite a few months (some days I took nothing at all) and at the same time my Adrenavive was out of stock for around 2 months. Everything came back, all my symptoms, and some new ones, I did ( and still do) feel like I am dying.
Eventually, I managed to see a private endo and he gave me a prescription for a German pharmacy and it was for 6 months - after a lot of faffing (!) I finally got my T3 in March. I now take Thybon 20 Henning ( lactose free - I have a milk allergy now as well). After about a month I got back up to my original 100 dose. I have also managed to get some Adrenavive, but a lower dose and I am trying to start taking again, but not sure if I should start slow and low or not.
So basically this long (and boring) post is because I have been taking my T3 for a while now and started about a month ago taking my Adrenavive and I am just getting worse. I feel worse than ever and my weight has rocketed, but now I shake/tremble a lot, no idea why. I feel suicidal ( I have self harmed in the past and I have started again, badly) I sob all the time ( I am now) I know everyone struggle with their weight (as well as all the other symptoms) but still being anorexic, I am distraught - surely I should be getting better again by now? Whenever I look at shaking/trembling it just says over medicated, but how can that be when I still have all the symptoms of being Hypo? I won't list them all, but they are there - I just don't understand, I was going to try and talk to Dr Peatfield again, but I have found out today that he has already retired, so I now I am lost, distraught and alone, I literally have nowhere to turn. I am on benefits, so I struggle to afford my T3 and Adrenavive, so I can't have any private blood tests, and my GP isn't prepared to help with any. I don't really know what to do with my Adrenal medication - do you start slow? Should you shake? Is it a deficiency at all? I struggle to afford vitamins, but I do try to take selenium when I can. I do suffer with panic attack regularly, and they have become worse recently, so not sure if that has anything to do with it?
Sorry, I know this is probably a pointless post, but I really don't know what to do and all the people on here are really amazing. I am in the UK if that means anything.
Thank you very much for your time, and sorry for this post.
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Bellerin
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There's no such thing as a pointless post as the fact is that if we've hypothyroidism nothing is pointless except to try to recover from our clinical symptoms. That's why forums like this exist and the member will find that at least a couple of other members might have gone through similar experiences.
Quite a number had their T3 withdrawn without notice and the panic that caused is quite unforgiveable by those who we imagine would have some concern for people who were well on T3 or T4/T3 or NDT and no notice given of the withdrawals. Not only that, those who were well on NDT also had that withdrawn a couple of years earlier and this was due to completely False Statements made by the Associations - who we imagined were devoted to their 'calling' in helping sick people recover from their clinical symptoms and who weren't recovering on levothyroxine.
Other members will respond if they've had a similar situation. Have you tried to increase your T3 a little and I know it is difficult if you don't have the money to buy privately. If you can, I'd try adding 1/4 tablet to your normal dose and, just for information, read the 'Safely Getting Well on Thyroid Hormones' which might be informative for you. I am aware of the difficulties if people have to buy their own meds. I'd go to see your local MP and complain too and she/he may lke to read the following from The Lords.
Hi there,you poor Darling,Well I wont pretend to know about all the conditions that has led to where you are today,but I do know that a combination of 80%T4 and 20% T3 is much better,Normally we are given sole T4 and on its own but we still have so many Hypothyroidism symptoms also Gluten free Dairy free (by the book) Strict diet,walk 20 mins a day if you cant exercise,we can still just about do that if nothing else,and next Vit D3 B6 , check iron levels, lastly Probiotics,Glutamin+GDL,Pe Psin+HCL,Fish Oil,Quercetin (with bromelain) Zinc and Selenium when you can,even if this help a little bit,its a little bit in the right direction and dont loose HOPE my dear,we are all with you,and your never alone.
Well done to you for all you’ve coped with and for taking steps to get alternative supplies. Don’t despair. T3 is a devil to get balanced - I imagine a bit like following a dodgem track in a juggernaut.
I wonder if this German T3 is a bit stronger than the T3 you were taking previously. I understand 60mcg is a typical full replacement dose - though you could be different.
When I started T3 I needed much more than the dose I eventually settled on as if my body was absorbing it like a sponge.
I think the symptoms and signs are very important as some occur both with too high and too low a dose. So to understand it’s necessary to look at the full range of symptoms. From what you’ve said so far I am beginning to wonder if you’re on a dose slightly too high. The other possibility is that you might benefit from rearranging the timing of your doses. What are your other symptoms?
Have you had a morning cortisol test? I started to shake really badly, particularly in the mornings, lost weight unintentionally, had constant nausea and felt generally incredibly ill and when I started to take t3 things got worse not better. A few months later I was diagnosed with adrenal insufficiency.
I would ask your gp to do a 9am cortisol and see if that shows anything.
Sounds very much like me sadly. What adrenal tests have you had?
Hi, I cannot add to the helpful advice so far given but wanted to say how very sorry I am to read your post. I had my thyroid removed a few years ago and also had adrenal problems. It's exhausting to try and work it all out isn't it and to have your meds withdrawn is appalling. I hope you are able to get more answers here and that things improve for you. For me it's an ongoing struggle and now I am going through the menopause as well. Keep posting on here for invaluable support which has helped me in the past. Don't give up, you are never alone. BIg hugs xxx
Hello Bellerin, I haven't posted for sometime, as I have been really unwell but read the posts every day. I cannot add any further practical advice on your medication as although I take levothyroxine daily my main symptoms which are permanent neurological and severe are due to B12 deficiency. I just wanted to send you my support and let you know you are not alone. You will get lots of sound advice here from people just like you who go through the same fears, battles and daily struggles. Please do not give up. I know 4 years ago when I was first diagnosed, after being ill for some years I was desolate, so alone and frightened and just knowing there were many people who understood who gave me lots of useful information and support just helped me learn how to cope. . I take life day at a time, do everything I can, have my b12 injections, eat lots of fresh food, no gluten for over a year now, exercise every day, and when I am really bad remind myself that the next day can be better which is really the case often. You are not alone Bellerin, please be kind to yourself. I wish you well. Potter 5
You can get Tiromel again (if you were better on that). Just post asking for reputable suppliers. You'd need 5 thybon henning to be the same amount as your 4 Tiromel. I know that Adrenavive has recently changed to use European cows that are not grass fed all year round, but no idea if that makes a difference to the product. I'd just get back on your old dose ASAP. I've never tapered and tka eextra if times are particularly stressful.
The most important thing I have to say is that you are not alone. Everyone who reads your post with have you in their thoughts today and for a long time , we will be sending you love, hope and the best of wishes.
I can only echo what someone has said above, do everything to get back to the dose of the same medication that made you feel well. There are so many variables in your (our!) problem that to approach it logically becomes complex and we become discouraged. The only concrete information we can make decisions on is "How do you feel?" the answer to that question neutralizes all the interacting errors. Get back to that state where you felt well. Move heaven and earth to get that same medication and go cold turkey on the dose which worked for you.
And just one last point. If it helps, many of us have hit the limits of endurance at one time or another, hang in there, let your cells determine what you must do, try to keep your emotions out of it. That's what did it for me, looking back I hardly recognize that person but it pulled me through.
Hello lovely people - I firstly want to say thank you for all your lovely kind words regarding this post. It was very much appreciated.
Sadly, I still feel no better, my health physically and mentally is failing and I am not sure I have enough strength left to fight with.
I still can't work out whether I am over medicated or not, as the trembling (inside, usually my left hand , but not all the time, seems to be in phases and then passes) is the only thing that makes me think I might be. I am still outing on weight, despite my poor diet, still anorexic in my eating, so that's why I still feel I must be undermedicated. Sometimes if I am stood up for long periods in the day, my legs swell up and become very uncomfortable. I can press into my calves, or ankles and they leave a indent for a long while afterwards. /I still have all my hypo symptoms, but I am taking my T3, at the same dose as before (when I was well last year,) but is the Thybon 20 Henning different to the Tiromel? Should it make such a difference? I am trying to get back up to my Adrenavive dose that I was taking before, but I am not sure if that would be what's making me shake? I just feel so ill. I feel tired all the time, thirsty, irritable, bloated, hot or cold, craving sugar upon sugar and struggling to focus, concentrate or just move about without need to sit down or sleep. Except at night or course, when I just can't get to sleep at all!
Would going back to Tiromel be worth trying? My money is very tight, but I am so desperate for something to work! Could I be deficient in anything? Where is the best place to go for it? (Please PM me, I don't want my post to be switched off to replies!) Is it worth seeing my Private Endo to see if he can change my private prescription to Tiromel, is that even possible?
Where is the best place to get my bloods tested? Maybe for any vitamin or mineral deficiencies?
Finally, I promise, how do I know whether my adrenals are working or not? I am so chronically stressed all of the time, so how do I know my cortisol level is right? Can you be really stressed and low cortisol? I don't understand. I do feel slightly less stressed when I take my Adrenavive, but that's not right, is it?
I think you’re over medicated - you have so many symptoms that I recognise as over treatment -
“trembling, shake, stressed, feel so ill /feel tired all the time, thirsty, irritable, bloated, hot or cold, craving sugar upon sugar and struggling to focus, concentrate or just move about without need to sit down or sleep. Except at night or course, when I just can't get to sleep at all”
It is very difficult to recognise your own over treatment - leave your T3 off for a day and see whether you start to feel better later in the day.. if you do, then resume T3 the next day at a lower dose. Some people find Thybon stronger and some Tiromel weaker. Good luck
Thank you for replying - but being over medicated would mean I was losing weight surely? Instead I am putting it on? I don't understand how I can be over medicated - I do my blood pressure and pulse & temp each night and morning, and they are virtually the same. Also my shaking/trembling tends to only be for odd hours, wouldn't it be all the time if over medicated? Some days its only a couple of hours all day max.
Why would I display all of the symptoms of when I was undermedicated? I am putting weight on, which can't be based on what I am eating, as my diet is still very poor, I was always thought that over medicated meant weight loss.
No it doesn’t always mean weight loss. That’s why it can be difficult. I get an appetite boost with overtreatment and often put on weight. Can only suggest you try it and see. Good luck
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Endo given up!
Can I just have a whinge?
