Graves,disease including the TED,total thyroidectomy several years ago,on 200 Levothyroxine per day and feel worse than ever,trying to find

Where to start,here goes I'm 46 female, and had total thyroidectomy several years ago,after having my daughter,didn't no much about Graves' disease apart from the symptoms I was experiencing,anxiety,palpitations, I didn't have any problems with my eyes until after having my thyroid removed,i was told take these Levothyroxine and you'll be fine,fine looking back im not sure having the operation did me any favours,I became soo moody my husband later said he was scared to come home from work because he never knew what mood I was gonna be in and to be honest I couldn't tell you to this day why I was soo unstable, mood wise, we are getting a divorce as I felt he didn't support me,shame really as I felt nobody could understand how I felt because I didn't know myself, Ive read a lot since then about thyroid diseases and discovered that here in the UK we are not given much choice about our treatment, other than Levothyroxine,a synthetic hormone containing only T4, not good when a healthy thyroid will produce 5 hormones T4, T3, T2, T1 and Calcitonin, no bloody wonder I've felt soo shit for all those years, well I've found another treatment that is Natural made from pigs thyroid containing all of those our very own make and it is used in the USA called Armour and the doctors over here done know much if anything about it,Ha I'm trying to get this medication via my GPs referral to an endocrinologist that I have found after searching for a long time,I'm finally getting a referral to see this specialist whom I believe has prescribed this very medication to some of her patients,I'm that happy I did cry when was told I could go and see this women....fingers crossed, I suffered enough.

19 Replies

  • Davenham21, welcome. :)

    Armour isn't the only natural dessicated thyroid treatment that our UK doctors neglect to tell us about. There's also Nature Throid, Efra, Westhroid... And then there's liothyronine, which is T3 only, and often the drug that makes all the difference to those who are thyroidless.

    You'll find a wealth of knowledge right here on this forum about how to take these other medications so do please feel free to ask questions. If you have no luck getting an endo to prescribe something other than Levo, then there are ways of self sourcing and going it alone - many of us here have done just that.

  • Thank you for replying! Yes yes and yes I have been reading nothing much but information on my condition and they differences of possible medications.i could self medicate but I'd much rather have the help of a medically trained specialist as I'm a working class and not able to afford private plus my doctor had never heard of this treatment makes me feel sad,I've felt soo I'll for soo long I just want to feel normal, I've dropped the stop the thyroid madness off for the doctor to read, I know they can prescribe it but they're soo I'll informed at medical school,this needs addressing! Asap for the sake of anyone who may in future be cursed with this disease

  • Jazzw, I have most of the symptoms Hairloss which really upsets me,dry skin, weight gain,aching joints,constipation,tired all the time no amount of sleep helps,gastrointestinal upset,Moody still despite a raise to 200 Levothyroxine,I feel an underlying depression/sadness it's like I am not really interested in anything there is no enthusiasm for anything anymore.???

  • See my response above with regard to the addition of T3 - the active hormone. We have to read and learn as much as possible and the GPs don't like us giving them items from the internet.

    Here's another story.

    First when you go for your next blood test leave about 24 hours from your last dose and have the earliest possible test and fast.

    You should take your thyroid hormones with a glass of water first thing and leave about an hour before eating as some foods interfere with the uptake.

    Always get a print-out from now on with the ranges for your own records and so that you can post if you have a query. Also ask for Vitamin B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient and that can also cause additional problems.

  • Gosh, you have indeed suffered enough, you've had an awful time. Hopefully your endo will be able to help you. I don't know much about being hypo and taking levo but without seeing your test results it sounds like you need more than just levo.

    If you have your blood test results plus the lab ranges - that's the figures after the results, usually in brackets, you need to post them on here and people will have a look at them and give you advice. If you haven't got your results tell the receptionist at your surgery you would like a copy. You are entitled to have them. Some surgeries insist on charging for printing but it shouldn't be a lot of money. Have you had ferritin, folates, B12 and vitamin D checked out too? You want all of them to be well up in their ranges to help your thyroid.

    I think it is very difficult for people to understand just how awful you feel with thyroid problems. I know by the time my Graves was diagnosed I had lost a massive amount of weight and looked great on the outside - unfortunately I was a total mess on the inside and I used to get SO mad that people just didn't get how ill I felt.

    They said they did then would come out with the most ridiculous ideas - like my husband thinking I could entertain all of our neighbours less than a month after I started my carbimazole! I could barely function, was going to bed at 6.00 at night when I'd spent quite a lot of the day 'resting', I was fizzing, so angry with him that he could be so stupid etc. you've been there you'll know what it was like.

    Fingers crossed it isn't too long before you get the help you need from your endo 😊

  • Fruitandnutcase! Yes I know what you mean! Exhausted is how I've felt for such a long time with nobody to understand why,it does help speaking to another who can actually relate to all this debilitating stuff,I hope your on the road to recovery

  • Hi davenham21

    First of all I am very sorry you have been neglected through not being given suitable thyroid hormones when they removed your thyroid gland. I am sorry you are also getting a divorce and I hope it can be remedied especially if you still care in some way for each other.

    You weren't responsible for your actions. It is the lack of care and hormones mainly which has been the cause. We don't know or are aware the devastation that having no suitable thyroid hormones can have to our whole system. We can turn from angels to devils in an instant through no fault of our own when hormones are depleted.

    I am happy that you are seeing an Endocrinologist who might be very helpful and prescribe an alternative that might very well do the trick.

    First of all, I would ask your GP if he would add some T3 to a reduced levothyroxine. This sometimes works very well for someone without a thyroid gland. You see levothyrxone is T4 and should convert to sufficient T3 (liothyronine) which is the active hormone which is needed in all of our receptor cells and our body has billions and our brain contains the most. If we don't have sufficient we cannot function normally and can have many symptoms as well as hormonal upsets.

    If your GP agrees for you to trial T3 it should be 1 part T3 for 3 parts T4 approx depending what your dose is at present (this is the up-to-date research). Or your Endo might be willing to prescribe if he/she's not keen on NDT.

    This is from one of our Admins - Clutter whose experience is detailed in the attached. You might have to press 'more' to read the whole Profile.

  • Thank you for your reply, I'm currently on 200 Levothyroxine per day,I have asked my doctor for the T3 and she said she had never prescribed it,I've had soo many tests,blood,MRI,CT,X-rays,colonoscopies,ect,ect I've been back and too but I refuse to give up, this runs in my family,and for the sake of my child or anyone else, ever getting this I have e-mailed my MP 2 weeks ago, who as of yet , hasn't replied,I Have been in touch with a lady from Health watch! and low and behold after speaking at length about my condition and the lack of choice (none) I seem to have a breakthrough at my doctors, she has agreed to refer me to an endocrinologist who I found,which has prescribed the medication I believe I need,one which she had never heard of..

  • I do hope the Endo you found will prescribe some T3. I did find a benefit originally when T3 was added. If he doesn't put a new post up giving your area (or County) asking if anyone can send you a Private Message of an Endocrinologist who has prescribed T3. It's worth a journey if he/she prescribes. Even the addition of some might be an improvement for you.

    If you get no joy you might have to purchase some of your own if it comes down to it i.e. improving your health/situation or not. Isn't it ridiculous that the Active T3 is usually frowned upon and I really don't think they (whoever makes the guidelines) have any idea of the suffering of patients who are supposed to be 'optimally' medicated and the destructive effect it can have on families in general.

    I hope your consultation is a good one.

  • Just want to say that one of the Admins - Clutter - has had similar experience re TT and you can read her profile here.

  • You are the repeat of what my husband went through

    Its pretty common that after RAI or thyroidectomy patients do not get on at all well with levothyroxine or indeed liothyronineT3 often because they are hyperallergic to chemicals and both levo and t3 are chemically made

    My husband and our daughter and grandaughters are all only well on NDT

    My husband takes armour but daughter and grandaughters take thyroid-s or thiroid

    PM for details of how to obtain them

  • I had my thyroid removed in Feb 15 and I have symptoms of spasms/contractions in my jaw 4-6 wks after TT and starting Levothyroxine eltroxin Mercury Pharma. I am now on Actavis Levothyroxine 6 wks and the spasms are still here . Reflux is bad too. I also had RAI last year got thyrotoxicosis I was very sick. I am at my wits end here all I can think about are my symptoms. My lips are constanly sore and getting cold sores. My body is aching especially my lower back. I am very thin compared to what I was last year.

    Have an appointment soon so going to ask about t3 first then if that fails Amour. Hope u get better soon. Thyroid disease is very lonely disease to have NO ONE GETS IT!

  • ButterflyActive, I think you should make a new post and include what you have just written, so you can get advice from more knowledgeable people than me.

    I have a very vague idea that during a TT the parathyroid glands can be damaged. They are nothing to do with the thyroid, they just happen to be next to it.

    Parathyroid damage could be responsible for your jaw spasms and contractions.

    I've just exhausted my entire stock of knowledge on the subject of the parathyroid glands. You need to get help from someone who knows what they are talking about.

  • I think I am at a dead end at this stage. No docs takes me seriously. Its all in head!

  • Butterflyactive, ask your GP to test parathyroid hormone, vitamin D and calcium to rule out hypoparathyroidism. Parathyroid glands can be damaged/lost during thyroidectomy.

  • Hi I have and they said it is fine apparently. 😕

  • Butterflyactive, it's good practice to ask for your results with the lab ref ranges. 'Fine' means results are within normal range which isn't the same as optimal. If you get the results post them in a new question for comment and advice.

  • These are my recent bloods done at the hostipal TSH 4.3(0.27-4.2 range) and T4 26.3(12-22 range) (3 WKS AGO) no t3 done

    Before that TSH 3.920 and T4 27.6 T3 4.3 same ranges.

    My b12 on the 26th June was 286 range 191 -663

    Ferritin 16 range 13-150 vit d 97

    Folate 12-3 range 4-6-18.7

    I always get print outs and when I showed my endo the result of my b12, folate and ferritin he said they are fine!

  • Butterfly because you didn't press the red Reply button to Clutter's response, she hasn't seen your further message.

    You can copy and paste your above response if you then press the Reply button she will be alerted.

    She has also had similar experiences which you can read in her Profile.

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