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graves disease or hypo

Posted , 4 users are following.

lou0000
lou0000

I am recently diagnosed with graves but need surgery as I have a sinester lump. I have been offered partial or total thyroidectomy. The surgeon suggested that if I had the whole thyroid removed then that would take care of the graves..but then I would have hypo. Any advice?

0 likes, 10 replies

10 Replies

  • madge1979
    madge1979 lou0000

    Posted

    Hi Lou ...  I'm no expert ... and I'm not familiar with the type of lump that you have ... I will look it up though....  but I have had Graves' disease  for around ten months,  diagnosed   and maybe a year or so before diagnosis I think.

    my GP said that I shouldn't worry as they could give me RAI or surgery to remove my thyroid at the time ..   I had a very long think about that and joined this forum ...  and gained so much knowledge in a very short time ..

    i decided that I really needed to have my thyroid to regulate my whole body   and that I would take care of my immune system , which was attacking my thyroid  ......  long story short ..l was put on carbimazole .. 20mg per day  reducing gradually till I was eventually on 5 mg per day then none .....   that was 2 or maybe 3 weeks ago  .. ...   during that wholee period I took many supplements ......  if you press on my name you can read what I took .

    all of those supplements plus the Carbimazole ... and I am now Euthroid ...  that is ...all my bloods are now  normal  !!!!!    so I'm assuming if you have the lump removed   and not the whole of your thyroid you could also control your Graves' disease  in the same way ...  please think hard about doing that.......before you take a very drastic step....  as I'm sure there are hundreds of good folk on here  who would tell you  that the alternative  is a very unpleasant way of life for many. 

    I wish you all the very best of luck whatever you decide 🌹

  • linda187
    linda187 lou0000

    Posted

    I agree entirely with what Madge said and I had a similar course.  When I added supplements (Regular L-Carnitine 3,000 mg, then added Acetyl-L-Carnitine 1,000 mg and quickly reduced this to 500 mg, vitamin D 1,000 to 5,000 IU, Magnesium Citrate 200 mg) my labs improved markedly and especially quickly with the Acetyl (however, you need to be careful and have more blood work and make more adjustments in its dose in order not to go hypo).  I was determined I would not give up my thyroid.  Unfortunately the Radiation and surgery route is what most Endos recommend and as Madge said, you will hear of hundreds of patients who never feel normal on levothyroxine replacement.  RAI and surgery does not prevent Graves eye disease occurring later on.  Most nodules are often benign but in the case of it being malignant, surgery is the only option.  It is now very easy to check the nodule for malignancy and if it is benign and not causing any problems, you will not require surgery.
    • madge1979
      madge1979 linda187

      Posted

      Linda ..  I'm so pleased to hear you had good results too ....from almost self medicating ...   for your Graves' disease ... do you mind me asking how long have you been euthyroid ... and bloods back to normal.....

      I'd love to know ,..as I don't actually know anyone who has used this approach successfully ... This time last year I was in a very dark place , feeling suicidal .. today I'm feeling wonderful again

      I'm  glad you feel better too and hope that you continue to do so..  after what I'm sure was a pretty grim time for you .. 

      🌹for you 

    • linda187
      linda187 madge1979

      Posted

      My Free T4 and Free T3 normalized right away in the upper end of the scale and stayed there as long as I took 10 mg of Methimazole but my TSH was 0.  Then I started adding the supplements and when I added Acetyl-L-Carnitine, my TSH shot up to 0.70 which is at the lower end of the normal scale.  It dropped below normal when I could not get the Acetyl for a Year but did not drop to what I started at.  Then I was able to get it again and my TSH rose and Frees dropped to bottom of scale.  As my labs changed, my doc adjusted my Methimazole first to 5 mg and then to 2.5 mg daily.  I stopped the Acetyl  and my TSH started dropping but was not  out of range (lowest was about 0.70)  Then about 8 months after I stopped the Acetyl, without any other change in my meds or supplements, TSH rose to 1.24 and has stayed there with of course the other two being normal in mid-range.  So I have been euthyroid since December, 2012 and off Acetyl-L-Carnitine since about Sept of 2014.  Currently on 2.5 mg of Methimazole Sat, Sun, Tues and Thurs and take 500 mg of the Regular L-Carnitine on my off days along with 1,000 IU of vitamin D and 200 mg of Magnesium Citrate.  Last year, my antibodies were also at the normal level but I will be checked again for the antibodies in November when I have my follow-up appointment.  They don’t usually check TRAb here in Canada but I am going to ask him to when I see him.  While the Acetyl was very helpful, it does require caution in its use and frequent ajustments or you can go hypo very quickly.
    • lou0000
      lou0000 linda187

      Posted

      Thanks comments Linda and Madge. It is very interesting to hear your stories. The more I read the more unsure I am of what to do. I have to have a hemithyroidectory (I have thy3 histology on my lump and so it has to come out). I am concerned about going on block &replace if I am still and hyper (recommended by endo) and then relapsing. Hearing your stories I could try supplements. If I had total thyroidectomy I am concerned that I will loose my body's ability to self regulate thyroid function long term. I cannot find out what risks/effects that will have on my body. Many other concerns also. Too many to write it feels.
    • madge1979
      madge1979 lou0000

      Posted

      Crikey Lou ... Just go onto the hypothyroid forum and hear the stories on there Luvvie ...about being Hypo...Frightening ... Some people get along fine with their little white thyroxine pill every day ... But not having a thyroid can knock the whole system haywire

      Which can , long term cause havoc within a body !!!

      My two sisters and their daughters have Hypothyroid ..

      My cousin is extremely ill with it , her two daughters have it, my mother had it bad but was never diagnosed ..she Lived on antidepressants and sleeping pills ...I can now spot people who have it and don't know ..

      This thyroid business is complex

      And hell for some poor souls .

      If you have partial surgery i.e. Remove the lump ... Then you could have a chance of supplementing yourself and it could very well work for you ... If you go the whole hog and have radical surgery .. You might lose an opportunity to heal yourself

      And that could be unfortunate

      But the most important thing at this stage is Knowledge ...Google supplements for Graves' disease and stay on this site ... Loads of people will help you ...

      Luv m 🌹

    • madge1979
      madge1979 linda187

      Posted

      Thanks for all your information Linda .. You worked hard to get it right ! Well done .. And please God you stay well Luvvie 🌹
    • icecool
      icecool linda187

      Posted

      Are there any alternatives to L Carnitine?
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