Help me please will I ever feel like myself again

Sitting here crying my eyes out feel so bloody alone and frightened. Only people I have to turn to are you all here on this brilliant site. Since April I was put on combo t3 20 and 75 eltroxin and my whole system crashed. When I look at it now I was completely overmedicated by the endo here in Ireland. I couldn't get back to see him as he said I had to wait 9 weeks before he would see me it got so bad that after 4 weeks my doc took me off the medication. I'm now back on 125 eltroxin before I was out on the combo I was on 75/100 eltroxin alternate days. I've been through hell and I just don't seem to be getting my energy back. In the past. 6 weeks I've been on 3 lots of antibotics had diverticular disease flare up and bladder infection. My doc did bloods last week and said they were fine but my free t4 is 28 range 12/22 free t3 4.9 range 3.1/6.8 TSH 0.849 am I going hyper. Woke this morning feeling very anxious heart palps and tremors why am I not getting better. I'm so bloody tired yet my body can't switch off doc said my cortisol level ok b12 615 that's after having an injection 3 weeks ago and that's to last 3 months folate 5.0 range 3.5/20 ferritin 205 don't know the range Roche anti TPO 158 and he said I don't have hashimotos I'm taking B12 complex sublingual b12 one per day cod liver oil and magnesium. I'm just a week over a bladder infection any help I'd appreciate it caus I really don't know where to turn

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45 Replies

  • ferritin is way way too low

    i doubt your cortisol is OK at all because it sounds like your in a similar state to my grandaughter

  • I just don't know where to turn The endo I see here in Ireland doesn't seem to listen to me find him so ignorant. My doc he's trying his best but he definately is not that clued in either. I think I may go private and see if they will test my adrenaline gland

  • There is a saliva cortisol test you can do that measures your cortisol at 4 times during the day. This gives you a better idea of what is happening. GPs don't seem to pay much attention to it but at least you will know what self help options you could look at. The test is a private one that you do at home and post off. Here is the link to one company that does such tests.

    Low or high cortisol really does sound like it could be the issue here.

    I hope you find the answer so you can start to feel better.

    Carolyn x

  • Sorry you are feeling so low Mauds. Yes reallyfedup, I'm agreeing with you, about low ferritin, I was getting heart palps and anxiety, even though I was taking an iron supplement, my levels were still low, so I had to increase dose, now lost the symptoms. It is a bit of a jigsaw puzzle to get on top of all the problems, they all seem to aggravate each other. D-Mannose can help bladder problems. I also had heart palps, anxiety and tremors on Levo, now better on Armour Thyroid tablets. I hope things start to improve for you Mauds. Think if you can get on top of anxiety and palps symptoms, it will make a difference to you. It is hard to concentrate on anything when your hearts banging away and every slight thing makes you anxious.

  • I'm taking the mannose for the past three days. Can't get Armour here they won't give it to patients even our docs can't prescribe T3 only endo

  • That's pretty much the same in the UK Mauds. Many people have to buy their T3 and NDT on line. If your adrenals are the problem you will still struggle to tolerate NDT.

  • She might also struggle to tolerate t3 if adrenals or iron are the problem. The good news is that starting slowly with t3 can actually help the adrenals recover. Has to be done slowly though to avoid a crash.

  • Carolyn,

    Mauds had a crash a few weeks ago when 20mcg T3 was added to 75mcg Eltroxin and is struggling to recover from it :(

  • Oh dear :( That does sound like adrenals, doesn't it. That always makes things so much harder. 20mcg is a big dose if your adrenals aren't in good shape. 5mcg would have been far more appropriate.

    Have you heard of Paul Robinson's circadian t3 protocol? It uses t3 to help recover the adrenals. It is quite complicated but is very effective for many people. It is started very slowly with a lot of self monitoring.

    I have linked to the Genova adrenal saliva test in one of her posts. Hopefully that will highlight the problem.

    Adrenal insufficiency is such a difficult thing to recover from :( I remember it well. Luckily I was in a position to not work for a while so I could recover. Recovery made the world of difference to my general health and wellbeing.

    Carolyn x

  • What did you do to recover?

  • The main thing was lots of rest in a horizontal position, napping in the day of necessary. I avoided caffeine, alcohol and sugar. I took nutri adrenal extra and nutri thyroid supplements as well as b12, b complex, iron, magnesium, vitamin c, zinc and vitamin D (I had low iron, vitamin b12 and vitamin d) . I also tried to remove stress from my life, which isn't easy with two young kids but I could rest while they were at school. I found things I enjoyed because enjoyment can help with cortisol and DHEA levels too. Watching comedies that really made me laugh seemed to make me feel better for a while each day. Being kind to myself was hard to do but I realised it was a necessity. I also stopped exercising except for gentle walks and gradually reintroduced the pilates gently as I felt able. As I suffered with low sodium (very common with thyroid and adrenal issues) I made sure I added a little sea salt to my meals. Eating healthy food with lots of vegetables and salad may have helped too.

    I can't remember if there was anything else I did but there is a lot of information on adrenal fatigue on the internet.

  • I'm put off taking nutri adrenal support due to the bovine content. I have some but have not taken it. I feel like my life is busy, 2 young kids 5 and 7 etc. I've been unable to do exercise for almost a year and need to start back at it.

  • I'm also on and off anaemic. I'm on iron tablets, b12 injections as deficient, vit d tablets as I'm deficient and cortisol was 195nmol at 9am when last tested in match.

  • Maud's ferritin 205 is above the top of range 204 mentioned in a post yesterday.

  • Whoops bad advice on my part then, sorry.

  • No, your advice was fine and Mauds hadn't posted the range when you replied :)

  • Maud,

    Can you reduce your Eltroxin to 100mcg or even 75mcg to see whether the palpitations stop?

    I don't know whether antibiotics affect Eltroxin but I suspect they might and it is very likely the illnesses which made you need antibotics will have.

    High ferritin is likely caused by your recent illnesses as your body has built up its stores to fight infection.

    I know nothing about cortisol but it mght be an idea to post a new question with your cortisol results for those who do understand to look over.

    Can you ask your GP for a few sleeping tablets. I was sometimes unable to sleep for 3 nights at a time which made me feel spaced out and weird apart from exhausted and my GP prescribed 7 x Zopiclone per month so I could get some sleep and rest every few days.

    I'm sorry you're feeling so rough, Maud.

  • Thanks I'll ask for cortisol results he never gives them to me just says all fine I asked him the other day if he thinks everything is fine then why do I feel so bloody rotton guess what he didn't put it down to thyroid just said it was all the infections I had

  • He could be right but on the other hand low thyroid function can be the reason you're getting the infections in the first place :(

    My symptoms couldn't possibly be due to Levothyroxine according to my endo but they resolved when I stopped Levo for 2.5 months and allowed my system to clear. Symptoms resumed within 3 days of starting Levo again so that was proof enough for me.

  • That sounds like me. The hypo symptoms are actually more tolerable than the t4 "poisoning" symptoms. I can't even tolerate a high enough dose of NDT. I can tolerate pretty high doses of t3 though since sorting out my adrenals. 100 - 125 MCG a day is my normal dose. Even after sorting out my adrenals I still can't tolerate t4. Makes me very unwell!

  • 120mcg T3 had no more effect on me than 60mcg so I didn't see the point in taking larger doses but I still had a system full of T4 which may be why it wasn't helpful.

    Since my detox I've been able to tolerate T4 with T3, further fuelling my conviction that the initial over replacement of T4 built up toxic levels that I couldn't convert or tolerate.

  • That sounds very logical. I think I have conversion issues did to having a very low TSH (central hypothyroidism). The higher the TSH, the greater conversion is... Usually.

  • Actually I was similar until I had been on 150mcg for 3 months then suddenly I needed to reduce my dose. This was probably when the t4 and reverse t3 had completely cleared. Still can't seem to add t4 back though :(

  • Hi Clutter, Antibiotics certainly do affect Eltroxin. It was what I was on when I was given Trimethoprim. I was told they deplete your adrenal glands which in turn affects your thyroid. Janet.

  • Thanks, Janet, I thought they probably would.

  • Gosh you are having a tough time. Could your GP not give you something to calm / stop the palpitations? Sounds like he is trying.

    I had palps when I was totally hyper before being diagnosed with Graves but I also got them every time I needed an increase in my levo - usually about 4 weeks after each new dose.

    First time that happened between endo visits I went to my GP and was given amitryptiline to calm them - that worked and I only took it long enough to stop the palps then it ws time to go and see the endo who raised my levo, after that I knew what the problem was and just asked for an increase in my levo.

    Why don't you go back to he level when you last felt good? I also take a load if vitamins / minerals to help my thyroid. I swear by this little video

    Hope you feel better soon, at least you have us for support, we're all behind you.

  • Thanks you're all so nice my doc gave me beta blockers I took one and a zanac to stop the tremors I just wish I could feel normal again two months have gone by now I just don't think I can take much more. I'm beginning to wonder if it is adrenaline because usually round evening I come round a bit and I don't feel tired when I go to bed it's like my body clocks the wrong way round

  • Just a thought - I have always felt better at night and have always had decent fT4 levels. Turns out my T4 levels were too high for me (even though in range). I've lowered my T4 and increased my T3 and think this might be the answer for me. Maybe something there for you too? x

  • (((Mauds))) xxx

    Please try and rest when you can, preferably lying down. If you can't sleep, maybe watch a bit of TV for a while - something that doesn't involve thinking. Diagnosis Murder, Quincy and Friends were my staples when I was recovering. I used to lay on the sofa watching them whenever I felt tired during the day.

    I also took Nutri Adrenal Extra supplement, high dose vitamin C and made sure I was getting enough of the other vitamins and minerals. It took a long time to get well, and I was lucky that I could get away with not working for a while, but I did recover in the end. Lying out in the sunshine for a while also helped.

    I know you were told your cortisol was normal but so was mine - just! There is a big difference between normal and optimal.

    I hope you start to see some improvement soon.

    Carolyn xxx

  • Where would I get nutri adrenaline can I take it without it doing me any harm and how long should I take it for thanks for all your help

  • I think I got mine from nutricentre online. It was free delivery to the UK. Start slowly if you decide to give it a try. You might want to start with the plain nutri adrenal rather than nutri adrenal extra if you find you are sensitive to medications of any kind.

  • I am sensitive but I'd like to give it a go anything to feel better I'll get results Tuesday and post them up and see what he calls a normal cortisol level

  • Try not to worry too much ( what advice coming from me -a gold medal winning worrier) treat yourself kindly, do as little as you can get away with, be a bit selfish too and put yourself first without feeling bad or guilty about doing it.

    Treat yourself like you would treat anyone in your family who was an invalid because you are really poorly - even if it doesn't show on the outside.

    The beta blockers will kick in and the horrible palpitations will go.

    I also found I slept practically round the clock when I was at my worst. Probably making up for all the nights I couldn't sleep because of all the palps. I was in denial about them for months and months - thought if I pretended I wasn't having a heart attack then I would be ok. Then one Tuesday night a very near miss in the car, went to my doctor first thing on the Wednesday, had bloods taken on the Thursday and by Friday night I was on Carbimazole with an appointment to see an endo.

    Don't give up hope though because there is light at the end of the tunnel - even if it doesn't seem like it to you at the moment. My first posting on here was to ask if I would ever feel normal again and I got loads if support saying I would and I did.

    Look at pippins post today, she can't believe she has actually booked a holiday. When you are at your lowest like you were this morning you can't imagine ever feeling good again but somehow or another you do. ((((( more hugs from me)))))

  • Thanks this means a lot I don't feel so alone you're all such a great bunch

  • Nope - you are definitely not alone, there are lots of us out here, pretty much available round the clock. :-)

  • Hi Mauds, sorry you're having a bad time. Your T4 may be too high, I've found that really small adjustments can make a massive difference in how I feel. I've usually managed to get well by adjusting thyroid meds so know nothing about ferritin etc. I think it's difficult for Endos to predict how we'll react to T3, but a good one will allow you to contact them if you're in trouble. All the best, get well.

  • My endo was not very good he didn't want to see me for 9 weeks and I phoned the hospital 4 times to ask to even speak to a member of his team but no one ever got back to me even phoned the endos secretary to try get app but she said I had to wait for the 9 weeks so that's why my doc took me off meds

  • Sorry you've had such a bad experience

  • Hello Mauds,

    I am so sorry to here you are so poorly, I know things seem hopeless but things can get better.

    I can relate to everythings you say and I do have those moments of dispair, hopelessness and lots of tears.

    I would say (this is from personal experience) that I don't think your Cortisone levels are not fine, I would suggest the ASI test - that would give you a clearer picture of your Adrenal function & DHEA. I was told I never had an adrenal problem as they kept pileing in the Thyroid meds dispite the fact it was making me much worse, after getting the ASI test done and was got products for my adrenals my energy level improved greatly. I am afraid I do not have the answer as I am very poorly myself but that is because I am very intorerant of Thryoid meds. Addressing the adrenal problems (if their is one) will make a hugh difference.

    Try to Keep positive Mauds - however bleak things are - things can be changed and the light at the end of the tunnel will shine through - lots of little improvements add up x

  • Thanks I think I'm a little too high on meds going to endo next week so hopefully I'll get some answers then. Have any of you had trouble with excessive passing water for the past couple if days I'm really thirsty and passing water every hour and it's always a full bladder. My sis works in the local hospital I brought up a sample to her at one and a nurse put it through the machine no kidney infection but the urge to pass water won't go is this my thyroid also

  • I am always running to the loo as well, apparently my kidneys are fine. I am also really thirsty with a very dry mouth.

    Have you been tested for Candida? That can cause excessive urination

    Best wishes

  • Thanks I'll ask for the test it's horrible running to loo every hour

  • Yes it is, I have gone to the loo four times in an hour (at worst) so how can I b ok? that isn't normal. Good luck with the test

  • Could you be diabetic? Excessive thirst and urination are key signs. A lot of people with thyroid problems are diabetic.

  • I don't understand all the complicated medical stuff myself, I'm still learning and practising on myself. However, I do know how debilitating it can be when you feel so rough and can't see the light at the end of the tunnel. This thyroid stuff is hard to get to grips with, and I still have periods of time when I just cry because I've had enough, so you have all my sympathy (not much use when you feel rubbish, sorry).

    However, I do have great support from my husband, which helps me unbelievably. I like reading what other people post here, which shows that we are not alone and going mad, and people on this site really do understand.

    I know it sounds so trite, but be kind to yourself, don't overdo things. Other people on here will give good advice.

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