sooo confused help!? cant sleep because of all this!

Hi all some of you may have read my original post from joining this fantastic group that im so glad i found i am hypo and have been for 7 years still have my thyroid gland in place just not functioning as it should...

so as some of u may know after suffering extreme anxiety/restlessness/too much energy/mood swings over xmas 2016, it all got too much and i told my doctor who palmed me off with anxiety tablets,... then one day i happen to read the leaflet on my levothyroxine to find i was having all the symptoms of too much levo! i had my dose reduced to 75mcg from 100mcg but was still suffering, so i decided to stop them altogether and those were the happiest best 3 weeks of my life! all the symptoms disappeared!..

anyway to cut a long story short before i stopped the levo my bloods had gone haywire and have been since august last year but i was never told about this!., my doctor referred me to and endo as my tsh and t4 were both high which she says is unusual T4 was 24.4 (11 - 23) and TSH was 8.1 (0.27 - 4.5)...

after stopping the levo for 3 weeks my T4 dropped to 5.7 (11 - 23) and TSH went to 100 (0.27 - 4.5), but still didnt have any hypo symptoms?

after doctors orders i started taking 50mcg again as she said i cannot take nothing as my levels are not good, so i have been taking 50mcg for 6 days now and the anxiety has started again, along with nervousness/ restlessness mood swings? like hyper symptoms?

my question is is it possible to go into hyper that fast and that i just dont need that much levo? or is my body just adjusting and the symptoms will subside??

im so confused? should i just take 25mcg instead until i see the endo?

Could it be that the levo dont agree with me anymore?

i cannot live like this i cannot sleep because my mind and body wont stop racing..

23 Replies

  • Based on my own experences*, yes you can shoot up really high really quickly as levothyroxine builds up in the syestem like a see saw effect(imagine a light child on one end and a heavy child on the other you can fly up and crash equally as quickly ( *not every body is like this you must be sensitive to any changes in your body )

    Your dr is right keep taking the levo as you need some in you system it takes 6 weeks for it to get to maximun strenghth, also your body goes under great stress at times like this, they are looking to get you stable , or get you to a level your body will accept,

    I have been so scared of taking my levo that I either forget or can't swallow it because i am so afraid of what it will do, my husband has to watch me takeit and swallow it,*usually at a v.reduced dose, it will pass, you will feel better, the levo will drop out of your system and your dr will try and get you on a better doseage , it takes a along time and its is soooo difficult to explaine to anybody including family how dreadful and frightening it can be.

    I send you a big hug, it will be ok .

  • Hi sweetart thanks for your quick response, yes i feel i maybe sensitive to it, its just strange how its happened after 7 years or being on it?.. iv been referred to the endo due to the high t4 and high tsh.. so hopefully they will do more tests and give me more options..

    Big hugs to u too i feel you..

  • Kez1984,

    There's no way you can be over medicated after resuming 50mcg for six days. Your anxiety appears to be an adverse reaction to the Levothyroxine you are taking. Have a word with your pharmacist and see whether you can try alternative brands. There are four brands of Levothyroxine in UK, Mercury Pharma, Actavis (also known as Almus), Wockhardt and Teva.

    If there is no improvement you may be having a reaction to Levothyroxine. Liothyronine is an alternative to Levothyroxine but usually needs to be recommended by an endocrinologist before GPs prescribe.

    Alternatively, you can buy Liothyronine (T3) on the internet and self medicate to see whether symptoms improve.

    Your GP is right that you must take some form of thyroid medication and I think you should be referred back to endocrinology for management. High TSH and high FT4 indicate resistance to thyroid hormone or impaired sensitivity to thyroid hormone.

  • Hi clutter thank you for your quick response.. i have not ever seen an endo yet im still waiting i have been referred and waiting for the appointment letter..

    After speaking with my doctor and ending up in a&e with chest pains palpatations uncontrollable shaking, i did switch brands from teva to actavis, but still having little bouts of anxiety..

    I just dont understand after all these years i all of a sudden become intolerant to them?..

    I will definitely be discussing an alternative with the endo after hopefully other tests are done...

  • Kez1984,

    It will take up to 8 weeks for the Teva to leave your system so if your anxiety was caused by Teva it should improve. Perhaps you could take an anti-anxiety drug for a few weeks. Please make a yellow card report about your reaction to Teva.

  • But the anxiety disappeared straight away after stopping the teva??. Thats why im confused as to whether it was the teva brand or its actually the levo?.. its all too baffling to me wish i could sleep properly just keep waking up in the all hours mind racing.. i have got anxiety meds which i took over xmas but didnt work wit the anxiety as i was on 125mcg of teva then and think they was over riding them.. but the problem with anxiety meds is i sleep really well but then when i stop them i suffer from insomnia again..

  • If you are under extreme stress (being sensitive)eg:your levo shot up so quickly the hormone(cortisol) can wreak havoc in your body it is well known to mess up thyroid hormones and readings (Feelings of too high but readings of low or normal) it can make you feel ill and stop you sleeping making you fidgety and have a racing mind ,shaky and tearful. It might be some thing to enquire with the endo when you see them.

    Best of luck

  • Yes i definitely will be mentioning this too, as i hope to get my adrenals checked anyway...

    What would be the best dose to take whilst ill see the endo do u think to stop the anxiety?..

  • Take what you feel comfortable with if you feel you can push it a bit then go up a bit if you feel that you are pushing it too much ease back for a couple of days and then start again you could even try every other day if you feel your bodys not accepting any more ,keep a diary of symptoms and how much you have taken that day,you will be surprised when you look back over it what was going on ,it's so easy to loose track of days and the first thing the endo will ask you is what dose have you been taking.

    Best wishes

  • Thanks for replying again hun...

    Its strange im on my period at the minute too so i know i always get grumpy and moody with that anyway, iv been on 50mcg for 7 days now, past couple of days have been ok though apart from rollercoaster moods the anxiety seems ok and not as panicky and nervy aswell..

    Do u think i will feel normal again once my bloods are stable? Thats if they get stable as this is why my doc referred me to the endo in the first place...

  • Maybe you're just not converting T4 to T3. You should get your TSH, Free T4 and Free T3 checked to see exactly what is happening.

  • Hi yes i got my t3 checked aswell but it was low anyway 1.6 i think but i had been off the levo for 2 weeks by then so dont know if it was because of that..

    If im not converting then what would be the best dose to take whilst waiting to see the endo do u think? To stop the anxiety..

  • sorry for the long reply

    I am the same at the moment mine started last year always thought i needed more Levo as I had the same symptoms then my fatigue started to lift and i gradually was able to do more then i forgot to collect my prescription

    to cut a long story short ended up missing 2 days of levo took it 3rd day and bam had the same symptoms carried on taking it and was gradually feeling worse and worse missed a day and felt alive again i kept going like this and then started to get the pains in my knees ,wrists and elbows hair falling out and dry skin decided to buck my ideas up and take it properly i just couldn't function on 75mg so decided to try 50mg mg that was just as bad that was when i went to the dr and confessed what i had done blood test showed i was hypo and i agreed to start on 25mg

    but even on that i got hyper symptoms had bloods done 4 weeks later which showed i was fine on 25mg but other stuff showed with my iron being through the roof so they weren't interested in my thyroid but what i have found out is wockhardt i want to say is the only one i can take but even that plays me up after a short while i saw a locum dr 4 weeks ago she told me to stop the levo as my heart was going like a train (25mg) i was really breathless, vertigo and blurred vision she referred me to an endo

    I had a blood test 6 days after stopping levo and i was hypo again and was told to increase my levo to 50mg had to explain to the receptionist that i had been told to stop she got the dr to phone me he wasn't happy i was not taking anything ,first 4 days i felt great after 2 weeks off nothing i felt like i was dying ,i had to do choose and book for endo which is only provisionally booked and I'm still waiting to hear but at the same time not holding out my hope on the endo from what I've read on here and really nervous to see one if

  • I am in a very similar situation. High TSH and t4. Feeling anxious, finding it hard to sleep

  • Its horrible isnt it!! Im thinking intolerance maybe?..

    Just strange how i have become intolerant after 7 years!?..

  • I've been on it for longer than that! I started feeling anxious and not sleeping after Christmas. My doctor reduced my thyroxine from 100 to 75mcg. Things calmed slightly but it's still up and down. Had a private blood test done and it shows high TSH and T4. Now waiting for my doctor to get back to me.

  • Thats exactly the same as me!!

    Having never suffered from anxiety in my life, had a massive anxiety attack when i was on 100mcg xmas eve!! Calmed when on 75mcg stopped taking it alltogether and all symptoms went! So know its the tablets..

    Now im taking 50mcg calmed it down massively

    Waiting to see endo now for answers!..

  • I wonder if I should reduce to 50 mcg , my sleep is poor and the anxiety is still there slightly.

  • Its all down to u and how u feel, i know for a fact its the levo thats causing it thats why i have reduced them myself, only u truly knows how something makes u feel, despite what doctors might say...

  • Try taking an antihistamine an hour before your Levo. If feel. Street Rhenish something in the Levo or the Levo itself is upsetting you. All medication has fillers in them to built up the tablet and make it more stable. Each brand will be the same but some of the fillers can vary between. Tends so you may have to change brands several times to hopefully find one that suits. Failing that I believe there is a liquid option. It I understand it is very expensive so only prescribed if all else fails.

    Hope you get it sorted soon.

  • Thanks for your reply.. yes i have changed brands already.. just hoping the endo does tests and gives answers...?

  • I am so sorry to hear of your sufffering! Those are such unpleasant symptoms! Nothing worse than anxiety and insomnia, as they ARE very scary! Personally I did not do well on Synthroid. I landed in the ER with panic attacks. Finally an integrative GP placed me on natural desiccated Thyroid. Have you heard of it? It contains both t4 & t3. The current brand I am on is WP Thyroid. I am doing pretty well on it. There are only 2 fillers which are inulin and coconut oil. Truthfully, this is a very condensed version of all I have been through on my Thyroid journey since my diagnosis in 2003. I live in the USA, so I am not sure what all is available to you in the U.K.

    Also, in my always constant searching for answers to my Thyroid health problems, I happened to come across a website called Stop the Thyroid Madness. It is very informational and you might find help there. It truly is very educational and has empowering information for Thyroid patients.

    Hope this is helpful.

    Good luck to you!! :)

  • Hi thank you for your information..

    Yes i have heard of NDT and iv heard of a few others like armour etc..

    Im in the uk and im not sure what is available and what can be prescribed on our nhs..

    Im hoping when i see the endo they have answers and can explain why my bloods have gone all over the place and why iv become intolerant after 7 years of being on levo!...

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