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My GP told me to stop all meds for overactive thyroid 10 days ago, felt fine for first 3-4 days

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christine57219
christine57219

I was diagnosed with over active thyroid just over 2 years ago, I had most of the frightening symptoms (very rapid heart beat, palpitations, anxiety, shaking hands, heat intolerance, fatigue, insmomnia, double vision, thinning fly-away hair and rapid weight loss). My GP put me on Carbimazole straight away and arranged an appointment to see an Endo. I saw the Endo about 4 times and my medication of Carbizamole was adjusted as necessary by him. At the last appointment with him he started me on block and repeat - everything seemed to have settled down by this point and I was feeling fine.  He said my GP would now start arranging my 6/8 wekly blood tests and adjust medication as and when needed.  So for the last (approx) 12 months, I have been taking 75 micrograms of Levythyroxine and 40 mgs of Carbizamole.  I had my last blood test on 21st July - I initiated this blood test as my GP hadn't arranged a blood test for me since January and for the last few weeks I had been experiencing some anxiety and breathlessness again and thought I my meds may need adjusting.  My blood tests were "normal" but I arranged an appointment to see my GP to discuss it further.  At the appointment I told her that I felt the thyroid wasn't under as much control as it had been as I was experiencing anxiety, breathlessness, such tiredness and was always feeling so so cold. She again told me that my blood results were completely normal and said that I should now stop taking the Levythyroxine and Carbimazole with immediate effect and go for a blood test in 4 weeks time.  I stopped taking the meds that day and felt fine for the first 3 or 4 days but since then I am again experiencing rapid heart beat, anxiety, breathlessness and generally unhappy with the whole thyroid problem.  I'm a 60 year old woman and this debilitating condition has taken away any confidence I ever had - the loss of weight has made me look older than my years, the thinning, flyaway hair that I can do nothing with, the panic attacks over such small things, it's even made me afraid of the dark because I relate the breathlessness and gasping for air to going upstairs to bed at night - I have torches all over the house just incase there is a power cut because "if it's dark I can't breath" - it's so irrational and yet it's how this condition has made me feel.  I don't know whether anyone else has been told to just stop taking their meds instead of cutting them down step by step?   I also have read on many forums that even though blood tests may come back "normal" people are still suffering some of the horrible symptoms.  I have also read that GP's don't really have any answers and it's all just trial and error?  Any responses will be gratefully received.  Thank you for reading this.

1 like, 9 replies

9 Replies

  • Sue1247
    Sue1247 christine57219

    Posted

    I'm really sorry to hear about your symptoms being so bad in spite of normal blood tests. I'm not going to be much help other than to remind you to cut out caffeine, avoid aspartame and take vitamin d and magnesium. I'm sure you will get more comments from others soon. Have you discussed surgery or RAI. Carbimazole is not a safe drug to take long term whereas thyroxine is and an under active thyroid is easier to control. I also think the symptoms are not so bad, as I've been under a couple of times due to the meds. I'm getting permanent treatment. I've had it come back three times now after going into remission. Enough.
    • christine57219
      christine57219 Sue1247

      Posted

      Thank you for your message !  I have never been given any advice from the Endo or my GP regarding what foods or drinks to avoid or advice on what supplements can be taken to help.  I'm at a loss regarding having had normal blood results and yet having symptoms.  If my blood levels are normal, then shouldn't I feel normal?  For the last 10 months one of my symptoms is feeling SO cold when everyone around me is warm.  My husband has had to suffer the heating being on high and has been overwhelmed by the heat so that I could feel warm !  The last time I suffered from feeling so cold and at that time I was seeing the Endo who said the reason for me feeling excessively cold was that I had gone from Over Active to Under Active and he adjusted the dose of Carbimazole.  When I was first diagnosed with a thyroid problem over 2 years ago I had an intolerance to HEAT - couldn't stand it, couldn't breath and wouldn't let my husband put the heating on !!  Couldn't even breath in the shower because of the warm/hot steam from the water.  So, if I am back to feeling extremely cold, surely I've gone Under again and yet my blood tests show "normal".    Just at a loss and so fed up of not feeling NORMAL.
  • neilmartin
    neilmartin christine57219

    Posted

    Hey Christine,  sorry to hear that you're feeling so rough! I had block and replace and when I stopped the meds I felt fine for about 5 days then felt dreadful - double vision was really bad and headaches a night mare for about two weeks! THEN I started to feel better and quite quickly too! Hang in there!! it'll get better!!
  • linda187
    linda187 christine57219

    Posted

    Christine, I disagree with Sue's advice to seek a more permanent solution through the other 2 treatment methods.  Hyperthyroidism can be caused by thyroiditis (a short term inflammation of the thyroid due to short term illnesses, goiters, or more commonly, it is caused by autoimmune diseases such as Grave's disease or Hashimoto's disease where antibodies produced by the immune system are attacking either the TSH receptor as in the case of Graves disease or the actual thyroid gland in the case of Hashimoto's disease.  To determine the cause, in addition to thyroid tests such as TSH, Free T3 and Free T4, blood tests need to be taken to check for antibodies such as TSI, TBII or TRAb and anti-TPO and or TGAb.  If those results are positive along with other tests such as ultrasound, the hyperthyroidism is caused by your immune system attacking your thyroid and if you remove or destroy your thyroid, it will just attack something else in the body.  Also the range for normal for something like TSH, ranges in my lab from 0.30 to 4.00.  Even if I had a TSH of 2.7 which is considered within the normal range, I would feel hypo symptoms because I am used to having a much higher metabolism and would not want to go towards that high a value for TSH.  Most hyper patients feel best when TSH is around .80 to 1.5 and the Free T3 and Free T4 are in the mid to upper part of the normal range.   Patients should not stop the antithryoid med if they are only euthyroid (meaning their thyroid tests are within normal values for range) but their antibodies need to be checked.  If the antibodies are not within the normal range, then they should remain on a low dose of antithyroid meds until they are.   I also disagree that Carbimazole is not a safe drug to take long term and could readily provide references to that effect but don't have time to retrieve that data right now.  I could also provide testimonials from thyroid patients who elected to destroy their thyroids either by radiation therapy or by surgical removal and never feel normal again on thyroxine.  I belong to another Board of thyroid patients, approximately 3,200 in number, who have elected to do all they can to keep their thyroids and most of us have succeeded in doing that.  What you must do is become educated about your disease, always get copies of your lab reports, ask your doctor to order tests they haven't ordered but should have etc.  I do agree with Sue's advice about supplements and no doctor will tell you that, either GP or Endocrinologist because they don't know and don't care to learn.  We patients, however, have learned a lot from each other.  So as a first step, I would ask your doctor to test your antibodies for Graves and Hashimoto's, also check your adrenal blood tests.  If your antibodies are still elevated, you can take a low dose of meds along with supplements.  I take vitamin D 2,000 mg (most hyperthyroid patients are deficient in these vitamins, minerals and amino acids), magnesium 200 mg, for inflammation I take curcumin and Omega 3 in addition to a low dose 2.5 mg of methimazole (same as Carbimazole in your country).  My antibodies have all normalized now and I have been given the choice to stop meds.
  • Sue1247
    Sue1247 christine57219

    Posted

    Linda has a point but how many of us have the time or inclination to monitor themselves as she does. Linda has a lot knowledge about the condition. She must have spent hours researching. I don't agree that if the thyroid is treated or removed another part of the body will be attacked and you only have to read the leaflet regarding carbimazole. I've spoken to many people including a vet! The consensus is an under active thyroid is easier to treat than an under active one. I don't want to spend the rest of my life worryng whether it will become active again should I get an infection or a lot of stress, as we all will at times in our life. Three times is enough.
  • kathy78743
    kathy78743 christine57219

    Posted

    Hi Christine.

    Reading your post is like a mirror image of my own symptons. I too have been on block and replace for severe over active thyroid the past year and half , and am now ready to come off all meds in October. Im nervous and scared to say the least as Ive been feeling so well the past few months (apart from gaining weight at a rapid speed!) It took my body a long time to adjust to block and replace( Im on 40 carbimizole and 100 thyroxine) and ironically now Im feeling well they're taking me off everything like yourself.

    There have been positive outcomes, those who go into remission (the lucky ones) however, some patients go right back to square one.

    I agree with Sue and Linda,  take the natural suplements. Im most certainly going to do this in October. Neil is right also, give your body time to adjust to being med free.

     If you dont feel like your getting the best care or advice from your doctor, change or book a private consultation..some docs are just that not informative about thyroid conditions, mine  have never mentioned diet or anything other than the meds that can help me.

    Hopefully you will feel better soon.

     

    • christine57219
      christine57219 kathy78743

      Posted

      Hi Kathy,

      Thank you for your post.  I was taking 40 mg Carbimazole and 75micrograms L-Thyroxine.  Unfortunately, I wasn't feeling great when the GP decided to take me off the meds and I had told her that I was suffering from several symptoms.  However, as my blood levels had come back normal she dismissed my symptoms and stopped the meds.  Unfortunately, the racing thumping heart beat came back with a vengeance along with the breathlessness and anxiety and after a couple of episodes of being close to fainting, I started taking the Carbimazole again and went back to see my GP.  She is now referring me back to the Endo specialist and I am awaiting an appointment.  So I really couldnt give myself/my body any more time to adjust to being off the meds - I think we all know that the extremely rapid heart beat/breathlessness can be very dangerous.  I hope it all goes well for you in October and that you stay feeling "normal" ..........for good ! 

  • linda187
    linda187 christine57219

    Posted

    Christine, I would warn you again not to stop all meds if your antibodies are not in the normal range.  Even my Endo agrees with this.  If they are not in the normal range, then low dose Carbimazole/Methimazole and low dose levothyroxine (called Add back therapy which is similar but different than block and replace therapy) will lower your antibodies and get you into remission.
    • christine57219
      christine57219 linda187

      Posted

      Hi Linda, thank you or your advice, much appreciated.  I started taking the 40 mgs of Carbimazole again last week without the advice of my GP after 2 very frightening episodes of extremely rapid heart beat, breathlessness and anxiety - it felt like I was taking my last breath, just the same as I had before I was diagnosed.  When I was first diagnosed, my GP prescribed 40 mgs Carbimazole until my referal to see the Endo came through so I knew that's what she woud do this time round too and after going to see my GP after last weeks scary episodes, she said I did the right thing in starting to take the Carbimazole again and she has referred me to the Endo again so I am now awaiting an appointment.  She said not to start the L-Thyroxine again, just Carbimazole.  I am absolutely fed up with it all, it is so debilatating and has changed me and my life so much (RUINING IT)!!  I tick almost all the boxes for symtpoms of Hyper and MANY of the boxes for Hypo (I did swing from Hyper to Hypo at some stage when I was seeing the Endo and dosage of meds were decreased/increased accordingly).  A specialist on the subject wrote "with all these symptoms it will feel like your body is in crisis - IT IS !".     He is so correct.........and it's not the body, it's the mind too !!
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