Bad times

Hi. Found this site as I am so worried about the side effects I have had.

Last October I was diagnosed with hypo. I was put straight onto 125mcg Levo but stopped after a few days as I felt so rough. After another blood test 3 weeks ago was prescribed the same again. I have had such a bad reaction that over the weekend I was suicidal. Saw a doc on Monday ans she reduced me to 50 mcg. Took that this morning and within hours felt the same symptoms returning. So, back to Doc (another one) who said that my bloods were borderline on both occasions and that she would not have medicated me!! I have made a complaint. However, how long am I going to have to wait until this medication gets out of my system?

I hope that someone can advise or help.

52 Replies

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  • Do you have your results with ranges.

  • No :( I never thought of that until I started reading the posts here! I am going back to see Doc & Practice Manager tomorrow so will ask for them. I am feeling so bad that I don't trust my surgery doctors anymore.

  • Hello cyfrin Just read your post and wanted to say hi and just to let you know someone else is around

    I am not qualified in anything medical justhypo myself and fairly recently in the last year been on treatment.others on here are much more experienced than me and sure someone will answer you come the morning.my only input is 125mcg starting dose does seem high,usually it is lower and increased gradually till optimal to avoid any problems.sounds as if the second gp you saw was doing it correctly to me.I understand that It takes about 10 days for Levi to leave the body completely.it also takes about the same time to start to reach a steady rate in your system so it is a while before true benefit,if any,is felt.it could be that It just doesn't agree with you. Many people say they feel worse before they feel better. Hoping things improve for you soon.

  • :) Thanks for the reply. I just want to feel better! I asked to be referred to an endo, but was told it was not necessary. I also knew nothing about the B12 / Vit D and Iron stuff.

    I am currently awaiting a knee replacement, spinal surgery and I also have carpal tunnel......I can do without any more problems ;) I am usually such a happy busy person but feel I have aged 20 yrs in the last week. Plus, it's rare of me to moan LOL

  • 125 seems high to start

    I stated on 100 following total thyroidectomy. Then my tsh was 36 so dr phoned and told me to start taking 200 a day and that's what I've been on ever since.

    No wonder you're fed up with so much going on with your knee etc etc but try to stay positive you've come to the right place. X

  • Sorry to hear you are having to cope with so much. I started on 25mcg - then raised to 50mcg and felt very unwell. Phoned Endo - and was told to stop taking T4 for a week and then start again on a low dose. If you have been Hypo for a long time then it will also take a long time to recover. Do you have Hashimotos ? Just wondered if your other problems were auto-immune as well - knee ? RA ? Carpal Tunnel may well improve when your dose is right for YOU....

    I live in Crete - so things are slightly easier. We can phone Docs on their mobiles !

    Do hope you feel better soon. Now that you know the importance of B12 Ferritin Folate Iron and VITD - it would be a good idea to have them all tested as soon as possible. They all need to be HIGH in their respective ranges to feel good and for the T4 to convert into the ACTIVE hormone T3. Lots of information from others here - so pop anything into the Search Box - Top Right of this page....

    I have learnt from reading and reading the information from this forum and the suggested links. Have you visited the main website for Thyroid UK ? - so much useful information. Like having a Doc in your room :-)

  • Without also having tests done for

    ferritin

    folate

    b12

    calcium

    vit d3

    magnesium

    zinc

    its difficult to know why you reacted to thyroxine but no way should you have been started on 125mcg ....25 or 50 mcg is correct starting dose but only if ferritin or folate are well above middle of their ranges

    if ferritin or folate is low you willl not be able to convert the t4 in thyroxine into the t3 your cells need

    and reverse t3 will be produced instead

    you may be allergic to the fillers in thyroxine

  • Hello - so sorry to hear that you are feeling so rotten..... It might be worth getting the list of decent specialists from Thyroid UK (I think you pay a small fee and they send you loads of info, including the list of specialists) and going down that route. From what I've read (eg. Dr Peatfield's book), if your adrenals aren't working properly, then thyroid meds can make you feel very ill indeed - a decent specialist would be able to advise on this. It isn't cheap, I know, but if it's at all possible then I'd recommend it. Hope things get better for you - sending you warm wishes xx

  • there's no fee for the list of helpful doctors - just email louise.warvill@thyroiduk.org.uk

    However there is a fee if you want to become a member of TUK and have the info pack, magazine etc. thyroiduk.org.uk/tuk/member...

    J :D

  • Whoa 125mcg is a very high starting dose especially if your results were borderline. Some of that 125mcg would probably be going around your system when you dropped to 50mcg. If 50mcg feels like too much drop to 25mcg for a couple of weeks and if thats ok up it to 50mcg.

    Also get a good multivit which should help as most likely you will be deficient in some of the vitamins and minerals mentioned by other posters.

    Carpal tunnel is a symptom of hypo and b12 deficiency so definitely get your b12 tested.

    Give the levo a chance but slowly slowly if you had such an extreme reaction, you might feel worse before you get better thats not uncommon.

  • It could be the brand of Thyroxine you are on - I used to take Mecury Pharma and it made me so ill.

  • Thank you all so much :) I have learnt so much. Off to the surgery now to pick up my blood test results! Be back soon ;)

  • 5858 Hi My tsh was 95.58 my t4 free was 0.2 and creatine Kinase 626. I was a mess. The doctor gave me 137 of levi. It was horrible in around 10 days unreal …….loss like 10 lbs and a nervous reck. They took me off it for about a week went to an Endo. Started out on 25 then every 6 weeks increased. Then that didn't seem to be working switched to Synthroid. Now I am on 75 and one day a week 150. I really need to post my whole mess but I feel its to long and I am trying to find a way to shorten it. You were over medicated from what I am seeing. I am one year into this and it's getting better but I still don't feel right. Time is what I am told…..Wish you the best and maybe it they start you out on a low dose with increases that will help…Keep everyone posted these people seem to have a lot of good info.

  • What are your side effects?

    I'm on mercury pharma and have an awful bitter taste...

    I have tried a few weeks off the Levo but the taste remains. However, I felt 'well' until I began thyroid medication :(

  • Are you sure you are even hypothyroid if you felt well before taking T4? From what I have gathered, TSH can be misleading.xx

  • Hi

    I can only really go by what the GP says and trust that they know best if I am hypo or not!

    They insisted that I needed the Levo after I confessed to stopping it!

    Xx

  • If there's one thing I have learn on this forum it is don't always trust your GP as they don't always know best when it comes to thyroid :-) perhaps you could post a question about your situation and ask others on here what they think. With your blood results and ranges. The Thyroid UK team are great :-) xx

  • Hi again :) Ok, only have results for:

    T4 serum free = 11.3 mU/L Low

    TSH Level = 9.6 mU/L Positive anti-TPO antibody

    The tests for B12 Ferritin Folate Iron and Vit D were not done. I was back at the surgery again today and insisted on seeing a Doctor (yet another one!) so that I could have another blood test for those things - and had that done at 1300.

    My side effects were sweating then cold, trembling, irritability, dry mouth, dry skin, unable to sleep, nausea, then an overwhelming feeling of wanting to die.

    Today I am still feeling very tired, and have trouble getting my brain to work (What's new? LOL) but hopefully things can only get better........

    You have all been so helpful. Thank you.

  • Hi

    What are your side effects please?

    I'm on 50mg mercury pharma (since Oct 2013) and have an unbearable bitter/sour taste in my mouth.

    I was only borderline when put on meds and wasn't suffering from any classic hypo symptoms. I feel like levothyroxine is poisoning me.

    I came off it for 3/4 weeks but there was little or no improvement, GPs have fobbed me off with 'it's nothing sinister' and mouthwash. It's literally unbearable and all-consuming :(

  • If you have to wait 6 weeks for your TSH to rise then perhaps you need to wait a little bit longer for your body to replace the thyroxine which you have stopped. Hopefully you might feel better in a few more weeks.

  • Hello,

    Have you ever been given T3 or a NDT? I can not tollerate T4 either, some people can not convert T4 (your GP will not acknowlege that, nor Adrenal Fatique) Are your Adrenals an Issue?

    Good for you for complaining x

  • No - have not been given those things!

    What do make of my readings so far?

    I'll check out the adrenal thing :)

  • Hi - Just checked! I do not have an adrenal disorder, according to the list of symptoms.

  • I had trembling at the very start of this!! I've just remembered! It was so hard to explain as I was shaking 'inside' so the doctors couldn't see it. That's how they picked up the borderline underactive thyroid in the first place!

    I also have a very dry mouth/tongue along with the bitter taste.

  • I have had a reply to my complaint about the dosage of Levo I was given. I am now told that the dose was a result of a chart that gives the amount in relation to weight - therefore I needed 120mcg! But the last doctor said I did not need any at all...............I will not have the latest blood test results until a week tomorrow.

  • There are indeed various formulas for estimating thyroid hormone requirement. I have even assembled several together in a spreadsheet available here:

    dl.dropboxusercontent.com/u...

    A few problems with this approach:

    This type of approach is only valid for estimating Full Replacement Dose requirements post-thyroidectomy. That is, in people who had fairly reasonable thyroid hormone levels, then their thyroid was removed (e.g.for cancer). Such people may be best treated by providing full replacement dose immediately. These formulas attempt to give an estimate of how much that is likely to be.

    You can see from the spreadsheet that the various formulas give different results. Now which one should they use? Throw dice? Toss coins?

    The idea of someone with just "low" thyroid hormone levels being suddenly given full replacement is crazy. Of course it is unlikely to have a happy outcome.

    The doctor who use a chart did so from a position of ignorance. They acted otherwise than in your best interests.

    (I believe that such charts/formulas can be helpful in identifying patients on anomalously high or low doses. By doing so, they might help to explain what is going wrong. E.g.patients in whom the TSH drops with hardly any levothyroxine. Or whose TSH stays high despite massive doses. But it is only a very rough and ready rule of thumb. Many will validly have doses well outside the values the formulas produce.)

    Rod

  • Thank you so much :) The docs response in the letter states: I prescribed 120mcg for you and YOU AGREED. How would I not?! I really appreciate your info and will remember it for any future responses. I am awaiting a response from the 2nd and 3rd doc who saw me re this problem. I am now 6 days free of Levo and finally m feeling good :)

  • You agreed? & just how the hell were you supposed to know? What a pillock!!

  • Thank you HarryE - my thoughts exactly. Now I have to send another letter to the practice manager .... stress or what? I knew I was right all along, but what hope do we have against a GP?

  • You can safely state that you would expect a highly trained medical practitioner to know how to dose his patients, not for his patients to have to tell him!!! All with tongue firmly in cheek, of course!

  • Huh! Playing "Blame the patient"!!!!

    If they wish to play that game, ask how they managed to a) inform the patient sufficiently to achieve "informed consent" status; AND b) inform the patient so insufficiently that the patient felt they had to agree to a crazy treatment regimen.

    Rod

  • I have added my latest blood results - can you help? Please:)

  • Right, my reply has been posted! It includes the comments from Hellvella and harryE :) I have also asked for a face to face meeting with the doctors involved plus the practice manager! Hellvella, your info was particularly valid and I have also included the chart you linked to :) Watch this space!

  • Yay! Well done xx

  • Another problem - I noticed 2 days ago that I was scratching my scalp a lot and found I have 'dandruff' with some pinpoint scabbing. Also developed thrush in the groin. I have googled but cannot find definitive evidence. Are these recent problems due to the o/d of Levo? Plus I am having trouble sleeping - but continually tired! I hate feeling ill!

    Complete blood test results due on Monday :)

  • I haven't been given any treatment yet & my scalp is very itchy & scabby. It's horrid!

  • Not nice ... so are you hypo or is it something else you have?

  • Well I think it's Hashimoto's & hypo, but of course the docs don't agree!!

  • :( Well I hope you get sorted soon ...

  • Right! Blood test results available but I cannot get an apptment, cnnot get them posted and because I have to wait in from midday to 6pm to take a call from the Doc I got this on the phone. The receptionist didn'y know what she was taling about, and quite frankly I'm not sure the following makes sense!!

    The following are 'bone profile'

    Protein 71

    Aldamin 49

    Alkaline phosotase (?) 90

    Calcium 2.48 - corrected 2.30

    Inorganate phosphate 1.11

    B12 412

    Folate 7.0

    Ferratin 189

    Serum 25-ho

    Vit D3 10

    ??

    Any comments more than welcome!!

  • When you get the printed copy there should be ranges, which will help put it in perspective, but as far as I know your vit d is on the floor - 10 is severely deficient - and that can effect all kinds of things including your feelings of well-being. A normal maintenance dose will not help you. You need a loading dose and I would ask the doctor just to see what they say. Here is more info which you could print off and bring with you if you like: imperialendo.com/for-doctor...

    Good luck!

  • Thank you for that link :) Every bit of info helps!

  • Forgot to say - I am now taking Fultium-D3 800 iu capsules equivalent to 20 mcg Vit D3

  • For someone as deficient as you in vitamin D3, 800iU per day is a drop in the ocean. My vitamin D level was in the insufficient range, so it was much, much better than yours. I took 1000iU for a few months and then got tested and my vitamin D level had dropped quite substantially.

    I now take 5000iU vitamin D3 per day, and I am starting to feel much better. I'll need to re-test very soon.

    A lot of people link to this website when discussing vitamin D, and apparently the info in it is very good. It would be worth poking around there :

    vitamindcouncil.org/about-v...

    It is a US website so, annoyingly, the units of measurement aren't necessarily the same as are used in the UK.

    The BNF (British National Formulary) pages on vitamin D supplementation would be worth a read - it is the information your doctor uses to decide what to prescribe. But they (doctors) treat almost all low vitamin D levels as "simple deficiency". Read the info and try to work out how to get the really high dosages prescribed :

    evidence.nhs.uk/formulary/b...

    I hope someone else chips in with some advice - I feel rather out of my depth with this subject.

    Edit : I see puncturedbicycle has given you much better info than my links do - but I'll leave this post for reference anyway.

  • Cyfrin,

    I think 800iu daily is woefully inadequate. Your GP should refer to another chart which refs the vitD dose required according to deficiency.

    My vitD was <10 in November. I was prescribed 40,000iu daily for 7 days and 2,000iu daily for 2 months. It's now optimal at 116. I intend to self supplement until summer and then supplement again next winter.

    If you've experienced aching bones, joints and muscles this is likely due to your vitD deficiency. My mood has improved immeasurably too, I've stopped smashing things during hissy fits :-D

    Your B12 is low in range and would benefit from supplementation but its unlikely NHS will prescribe. I use BetterYou Boost B12 spray from Amazon (please click through from pinned posts) and B12 has risen from 363 to a respectable 725.

  • I am thinking that from the list B12 down I am low on them all, and high with Ferratin..... Does that show some liver imbalance?

    I am really surprised that although I asked for all the levels to be checked he didn't bother with the thyroid ones again!

  • Also, should I take supplements now?

  • A good multivitamin wouldn't hurt, and a loading dose of vit d. Without the ranges I don't know about the others but maybe someone else here will know. But your gp might prescribe you the d.

  • Please - someone - reply My head is spinning with all the info out there!!

  • Link to your new thread...

    healthunlocked.com/thyroidu...

  • They usually start everyone on a low dose and gradually increase so it's not a shock to your system - you had no way of knowing this was a big dose to start with, or what the effect might be. I was always frustrated that they would make me wait weeks before increasing to next dose up. Thankfully it sounds like it hasn't caused lasting harm despite being awful at the time. I did start on a very high dose of T3 when transferring from T4 but this didn't cause me any problems. Hope you get it sorted soon

  • I am so grateful to you all for taking time out to reply and advise. It has helped me so much :)

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