HELLO, NEW TO THIS AND TERRIFIED , RATIOACTIVE TREATMENT NEXT WED!

Does anyone on here have a thyroid that doesnt behave and go both ways like me???? Endo suggests iodene treatment, im concerned what it will do to my Pernicious Anemia conditions and b12 levels. im thinking seriously about cancelling treatment. I have read on numerous occasions it can cause leukimia,with an already compromised immune system ,i dont know where to turn. All the symptoms i have can fall into thyroid issues or p.a. which belongs to which i dont know. The biggest fear is having treatment and still feeling poo. Endo has only treated 3 people like me in 20yr career, he cant tell me much of result at end.

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  • Hi

    I have a thyroid that does not behave at all it has taken me a year to get my overactive thyroid down to reasonable levels.

    My Endo wanted me to have RAI treatment or a thyroidectomy and I refused it was quite a battle but I got my own way in the end although how long this will last I don't know. I am on Carbimazole and natural supplements and for the first time my levels have come down.

    This worked for me because the other options were so final and once done there was no going back. My endo does not recognise any other course of treatment than thyroxine and when I asked what would happen if they did not agree with me she told me not to be silly they agree with everyone.

    I have learnt so much from this web site and I would say there are loads of web sites on the web that are helpful. It may be that the treatment is right for you I just did not believe that it was for me.

    I know people who have done very well on the RAI but I also know people who have not and had to live with it including my own mother.

    I hope everything goes well for you but please do a lot of research before going ahead with this.

    Take care and good luck

    Elayne

  • The above post is encouraging and no doubt others who have had RAI will comment.

    This is a link and if you cursor down to question dated June 11, 2004 you can read Dr Lowe's advice:-

    web.archive.org/web/2009020...

  • Something doesnT sound right here. What do you mean about a thyroid that goes bothe ways..... Do you mean hypo and. Hyper? If so, Have you had thyroid antibody tests? What did they show? Hashimotos disease can lead to hyper followed by hypo but eventually settles down to hypo..... Normal treatment is to give thyroid meds, so that the thyroid doesnT have to work at all............ But Graves' disease can also swing about... though usually stays hyper.... It can often be controlled with meds.

    Have a read of Dr Barry peatfield s thoughts on RAI..... It can be a solution, but is not the only solution and carries with it, some risks, including that of breast tissue uptake od the radio active iodine.

    Don't allow your doctor, or who ever, to rush you in to this. It rather sounds as though you havenT been given enough information to make an informed choice, or to consent to an irreversible Procedure. It is, however the preferred option of may medics because it is easier (for them, not for you).

    The P A can go along with hypothyroidism, as the stomach becomes unable to absorb the B12. Ae you being given injections? How often? Ideally it should be every month.....

    What is the thyroid diagnosis and do you have any blood test results? You are entitled to them.... Go and ask the docs for copies. You need numbers. ,Normal'. is not a result its an opinion.

    It may turn out that rai is your best option, depending on your diagnosis, but there are plenty of people who rue the day and would advise that you know all the options first.

    G x

  • If he's only treated 3 people like you in 20 yrs it doesn't necessarily mean you are unusual but perhaps he lacks experience and knowledge! I had RAI over 30yrs ago and I'm still here to tell the tale. BUT I was massively hyperactive and meds just did not sort it after a year of hell. Now I know so much more, I would think long and hard before making that decision again. You say your thyroid goes both ways. Is that because they can't get your medication dose right? Galathea rightly asks some questions to get a picture of your current situation so if you can give a bit more information it will help us give better answers. Good luck in whatever you decide.

  • Hi

    I refused RAI, sometimes it has to be repeated and of course its final, however I had partial surgery and was and am fine with the thyroid.

    I did find a lump in my breast 3month later breast cancer, but I dont think there is a connection, just strange.

    Best wishes Helen

  • greetings hblower, I wonder why you don't feel a connection between the two. They are the two areas that use the most iodine. One uses iodide, the other uses iodine and an iodine deficiency could be the cause of both. It's actually come to the surface that fluorides and bromides are displacing iodine in our bodies. Also iodine is very reduced in our foods and in breadmaking (unless the label states, unbromated). I think there is a huge connection. I'm glad you are doing well with your thyroid and hopefully as well with your cancer.

  • Hi Heloise

    The so called medical profession have not addressed this, nor my telling D'rs that my lymph nodes were swollen at times under my arm on the same side, even the mammogram was clear year before, again I pointed out the lymph nodes, however they turned out to be infected. The thyroid nodules saga lasted many years being told that my swallowing problems were not the cause, but it was as I was relieved after the large half being removed, I have had lots of problems with ovarian masses, all ignored, so how can I connect it up to the cancer, it was the reason I refused RAI and it was not nessesary to destroy the whole thyroid, many thanks for your reply, I am sure you are right.

    Best wishes Helen

  • morna, I agree with the rest. I've known a person to get through this without having the radioactive iodine treatment. Unless you have been struggling for a long time and have tried methimazole and beta blockers first, perhaps you could postpone it. I would also take selenium for three months at a fairly high dose. There is a paper on that I believe.

    It seems the treatment for hypothyroid is so inadequate, it seems as if you will go from frying pan into the fire. The radical treatment is probably an easy solution for THEM which also should be considered.

  • Hi Every one , thanks for your kind replies. My levels are at the mo (makes no sense to me) TSH 2.74 3T4 13.1 FOLLIATE 7.2 FERRATIN 10.3 B12 78.2 HEAMMAGLOBIN 12.2. STARTED OFF ABOUT 4YRS AGO BEING UNDERACTIVE AND ON 50MG THYROXINE ,ONLY CHECKED ONCE A YEAR,WHICH THET SAID WAS FINE ,SO STOPPED IT. NOT CHECKED AGAIN UNTIL FELT REALLY ROUGH (4YRS LATER) FAST PULSE,WEIGHT GAIN, PERIODS STOPPED, LETHARGY , BRAIN CUSTARD.ETC ETC. I STARTED TYPING THINGS BACK TO FRONT, I COULDNT ORGANISE 14 PIECES OF PAPER IN ORDER I COULD HAVE CRIED! I WAS DIAGNOSED WITH B12 DEFF AT SAME TIME, BUT SYMPTOMS ARE VERY SIMILAR WITH BOTH CONDITIONS. IAM SUPPOSED TO BE "STABLE" AT MO ON DRUGS , MY B12 IS UP TO DATE ,I STILL FEEL LIKE POO. STILL GOT A FEW, BUT STRONG HEART JUMPS EVEN THO IM ON PROPANALOL, LOW DOSE AS I WAS EVEN MORE DROWSEY. NEED MORE THAN 1 JAB OF B12 EVERY 3MONTHS THO. 50MG OF CARBIMIZLOE AT MO. NEVER IVE BEEN ACTUALY TOLD I HAVE ANY DISEASES EG GRAVES .

    kIND REGRDS

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