How long does it take to feel normal?

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Hi everyone haven't posted for a while!

 I was diagnosed last October started with 10mg carbimazol and 40mg of propranalol. Now i take 5mg of Carbimazole and 10mg of propranalol  and yes i do feel better, however i still do not have my full energy back and need lots of sleep, i ache especially my one upper arm and especially ache in bed at night! Also i look pale and pasty so much so people ask if i feel ok!

  I am now eating a really healthy diet, taking vitamins drinking lots of water, and now starting to do some exercise in the form of long walks! I know doctors don't seem to be very knowledgeable about this condition, but how long does it take to get completely back to normal? I seem to have 2 or 3 goods days then the next day can't seem to drag myself out of bed! It doesn't help that my husband isn't very understanding and i'm sure just thinks I'm lazy, so i feel guilty if i stay in bed!

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15 Replies

  • Posted

    I'm the same as you and up and down depending on the day.  I eat a healthy diet and exercise but I've been unable to stabilise properly since the Graves came back in March 2013.  If I go into remission again the chances are (considering my history) that it will return.  So rather than go through it again I'm having a thyroidectomy.  I realise this isn't for everyone but being hypo is easier to treat. I know of many people who have had surgery and now just have to have a review on their thyroxine once a year.  I get all sorts of symptoms and don't want to go through the rest of my life on carbimazole and having to have frequent blood tests, as I am now.  
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    • Posted

      I am tin the same boat Sue.

      Can't say I blame you with your decision to have a thyroidectomy. Have u been offered RAI?

      Mind my asking u what age group are you in? Roughly!

      Sorry about the questions but still learning about this horible condition.

      Another quetion coming up into my mind now!!

      Do you know what the long  term management of someone who has a thyroidectomy is or will be? 

      Best wishes 

       

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    • Posted

      Hi Karen, I'm well over 60. I have other auto immune diseases and the stress of being so up and down is not helping them. I was offered RAI but I have thyroid eye disease so best I don't. A thyroidectomy is final. I personally can't see the point in hanging onto a malfunctioning thyroid. Hypothyroidism is easier to treat and thyroxine or whatever safer than carbimazole. I know so many people who are fine on it. The operation has been done for decades. I'll take my chances. I know I'll go hypo and be on thyroxine for the rest if my life but a small price to pay for a degree of stability.
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    • Posted

      Hi Sue

      Wow!

      Many, many thanks indeed for your e mail.

      It has restored hope in my future. So thank you.

      I am in the same age group as yourself and have been worrying relentlessly about being written/fobbed  off due to age. 

      I would like to say that I entirely agree with all your comments .You have stated everything that I have been thinking about myself etc for several months.

      To reiterate.

      I am in exactly the same boat as yourself including the eye problem which I still do not know if it was a TED or not!

      All this started two years ago wth severe headache, throbbing pain in my eye, loss of appettite, panic attacks, drenched in sweat every night for months, fear of being left alone in the room even with someone else in the house.Exhaustion then insomnia.

      In fact the posting entitled 'A letter from Graves' sums everything up for me plus the severe headachs and throbbing pain and dry eyes.

      All my signs and symptoms anxiety, depression inability to make a decision were all completely out of character.

      Family passed comments to me about the change in me etc.

      I could not understand these overnight sudden changes . Drs confirmed that it was not a mental health ssue but sadly were unable to come up with a diagnosis to explain these weird but not so wonderful issues.

      I did notl ike this new me.

      Several months later it materialised that I have a thyroid disorder. I hhadlow TSh, antibodies, nodules on my thyroid. Hence being offered RAI. Carbimazole is not considered to  be appropriate due to  heart block and long QT synndrome. yet left untreated my heart is at risk anyway! I already have osteoporosis.

      Given all of the above I have reached the same conclusions as yourelf.

      I would rather opt for ablation  for myself even  if it means taking thyroxine 

      Thelast two dayshave been horrndous with ultiple panic attacks.

      I would have RAI or surgery right now if they were offered simply to get away frm the situation of feeling ill 24/7.

      . I had a problem with dry eyes, concretions, throbbing pain in my right eye, floaters. I do not know if I had TED or not! This happened prior to my knowing that  I have a thyroid disorder.

      Are you in the UK?

       Karen.

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    • Posted

      I'm in the SE. After several years with an indifferent endo I asked for a second opinion. My new consultant is great and has explained that graves is difficult to treat and then only with drugs with side effects. Being hypo is treatable with hormone therapy rather than medication with associated risks. I'm fine onvcarbimazole but don't want to take it long term. Read the leaflet. I'm also just recovering from severe iron deficiency and only just beginning to feel as though I can function. Even then I have off days and mornings are worse. If you don't have TED RAI should be fine for you but I'd be worried about my cats. At my age life is really too short to be feeling this way. I'm going to sort it.
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    • Posted

      Thanks Sue.

      Good thing you have a new Endo.

      I agree with your comments about it is abbout time that this was sorted. Quality of life is vastly important and age makes me more aware of that. I feel resentful that my condition has been 'overlooked' and treated so causually. Like yourself I am now determined to gt this sorted asap. May I ask if you ever have what some drs refer to as panic attacks. I have them and blame it on the thyroid disorder. 

       

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    • Posted

      I get anxiety attacks with palpitations and I'm very emotional. Difficult to know whether it's attributable to graves or any if my other auto immune disorders. If you're unhappy with your treatment say so in writing and ask for a second opinion if necessary.
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    • Posted

      I will.

      I have wondered if the 'panic attacks' are due to the varying levels of TSH throughout the day?

      Thankfully I do not have dementa! Thanks for the info anyway.

       

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  • Posted

    I was diagnosed in 2007, placed on 10 mg of Methzole daily and did not start to feel normal until 2009 when I added supplements like Regular L-Carnitine, Acetyl-L-Carnitine, vitamin D3, Magnesium, Omega 3 and curcumin to my treatment protocol.  This helped me to normalize my thyroid antibodies and ALL my thryoid values.  I currently am on 2.5 mg Methimazole every other day.  My sister-in-law had RAI many years ago and is on Levothryoxine and she said you never feel normal again.  This is why I want to keep my thyroid and keep my own thyroid hormones.  I could stay on this dose for the rest of my life.
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    • Posted

      Hi Linda, thanks for your reply, and you have given me lots of advice in the past! I suppose i have been putting off all the vitamins you advise as it works out to be so espensive but can see i need to invest in them now! Also always feel a bit wary about taking lots of tablets!!

      Once again thanks for your advice!

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    • Posted

      Linda

      Sorry but you may have already given the answers to the following questions. If so I apologise in advance.

      Mind my asking you what your  blood results showed way back in 2007?

      Were all your antibody levels raised etc.

      What dose of L-carnitine were/are you taking that has helped you.

      I appreciate your time and patience.

      Many, many thanks.

      All best wishes

      Carnitine and Acetyl carnitine you took that helped you?

      Are there any contra-indications to using them?

      i

      Like smany others I am scared of the full blown signs and symptoms returning. It seems though thydetails to my questions. If so I apologise . I am having a particularly tough day that seems to consist of masses of panic attacks, feeling nauseated and worried about not yet being treated for hyperthyroidism.

      I wondered what dose of L Carnitine you were taking and also what your Thyroid blood tests show.

      Again my apologies for repeatingg

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    • Posted

      In 2007 at the time of diagnosis, TSH less than 0.001 (range 0.35 - 5.00)

      Free T4 29 (range 10-20)

      Free T3 13.5 (range 2.6 - 5.7)

      I was started on 10 mg of Methimazole.   For the next two years my labs were:

      TSH less than 0.01 stayed this way until June of 2009 when it was 0.05

      FT3 2.7 (range 2.6-5.7

      FT4 14 (range 10-20

      My FT3 and FT4 were pretty much at that level until I introduced Acetyl-L-Carnitine.

      TSH rose to 0.23 in April, 2010 when I started taking regular L-Carnitine 3,000 mg daily, Frees stayed about the same.  About this time, my Methimazole dose was lowered to 7.5 mg.

      In December, 2012 my TSH rose to 1.48,

      Free T4 12 (range 12-21)

      Free T3 4.8 (range 4.0-5.8

      This was after I added 1000 mg of Acetyl-l-carnitine.  In order to keep it there, I had to adjust acetyl dosage to 500 mg every other day and decrease my Methimazole to 5 mg.  It pretty well stayed between 1.5 to 2.5 with my playing around with dosages and the Frees were at the bottom of range until March of this year (2016)  I had my Methimazole decreased to 2.5 daily in September 2014 and my results in March, 2016 were

      TSH 1.63 (range 0.30 - 4.00)

      FT3  4.6  (range 3.5 - 6.5)

      FT4  13  (range 9.0 - 23.0)   at which time my dose was lowered to 2.5 mg every other day. 

       

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  • Posted

    Hi Welsh Girl - was wondering how you were getting on. I was diagnosed just after you and have recently started to feel more normal - although it's been so long I've forgotten what normal is! I still get the odd day when I can be really cold and sleepy. My medication was halved a few months ago from 20mg to 10mg. I've been on 40mg propanolol 3 times a day all along; not sure when I'll be reducing those though.

    Try not to overdo it on good days. It is very tempting to rush about getting all that stuff done that you had no energy for yesterday but I found I would always regret it later. At least it has been over the winter - I spent days on the sofa watching films or reading.

    Take care welsh girl and hope you continue to improve.

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  • Posted

    That stinks! My husband understood how I felt when he see me panting for no reason and I would have to sit down from chest pain. Unfortunately I had to have a ablation and now taking thyroid med. just got off of synthroid trying armour now.
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