I'm so worried! Multi nodular goitre? thryoid removed? please advise

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Hi All,

I've been reading through the posts and my sympathy to all of you who struggle with our horrid condition. Been on Carbimazole for 2 years now and my levels are usually fluctuation towards the high end. Due to my high sensitivity to meds, once I up my meds to 15mg a day - within a week I notice hypo symptoms.Is anyone like me though?

I have the worst periods - tenderness from day 21, spotting and period feeling for 5 days before period comes, heavy, clotting and painful?

Also, I am 4- or so kg's heavier than I ever have been. I'm only 5"3 and I'm petite so every kg shows - when I've not been pregnant I've always been my normal weight and now if I eat carbs and don't excercise I immediately put on weight and I can't seem to shake off those 4 kg's no matter how I try! My psoarisis has also flared up again.

My endo told me that some nodules even when a FNA result show's clear have been biopsied after surgery and found to have traces of cancer and has advised me to get my thyroid removed. I'm really really nervous though on being on thyroxin all my life. Please tell me that you've BTDT and you're ok? What was it like for you? Please give me some advice!

Thanks in advance!

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9 Replies

  • Posted

    Hi.  If it were me I'd have the thyroid removed asap.  I'm told by various consultants (and my vet) that it's easier to control an under active thyroid with thyroxine than an over active with carbimazole.  I'm on carbimazole but luckily respond well, at the moment anyway.  I'd get it out before those nodules turn to cancer. It's a simple op and just a day case.  Go for it. 
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  • Posted

    Have you tried adding L-Carnitine to your treatment regimen? Many people have posted on this Board how much improved their disease was when they added it to their treatment regimen and that they were able to decrease the amount of Carbimazole they needed when they did this. Carnitine is an amino acid that is normally found in the body but gets depleted from muscles through urine in people with hyperthyroidism. When this is replaced, the body heals better. You can Google many articles on this and educate yourself before making a decision. L-Carnitine and Acetyl-L-Carnitine are found in Health Food stores or can be obtained with a doctor's prescription. Most endocrinologists do not know about this and are not willing to learn. You can search this site for past postings on it. I have been on both L-carnitine and Acetyl-L-Carnitine. The Acetyl-L-Carnitine raised my TSH the most and I got rid of the eye irritation and Graves antibodies after I took it. I am now back on the regular L-Carnitine as I don't need the strength of the Acetyl anymore. I would not let the doctor scare you into having surgery. Though I did not have goiters, most people I know with goiters do not have cancer. Please keep us posted on your progress and decision.
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  • Posted

    I have had a multi nodular goiter for 6 years now. Hyperthyroid on PTU for 3 years (allergic to carbimazole) although ultra sound can't tell if a gland is malignant or not it seems doctors go by calcification and if the nodules are hypoechoic or not. From what I have read the main concern is for a single cold nodule. As my endo said thyroid cancer is confined so even though my nodules are growing (now 2cm) I refuse the FNA as I'd rather keep it confined until I figure out my allergic reactions to lots of meds. I'm so scared of the reaction to anaesthesia that i cancelled my thyroidectomy even though I feel like hell on a daily basis. My closest friend had thyroid cancer a few years ago and had a total thyroidectomy. She is absolutely fine so don't stress about having it removed. If I could pluck up the courage I would go through with it myself
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  • Posted

    I had mine removed 3 yrs ago - two years of misery before and  two years of Hell afterwards as they gave me the wrong dose of thyroxin.  Once that was sorted, in a matter hours I was 110% and now live a very active, full on life by taking two and a half little pills every morning ( with no milk for an hour afterwards ! ).

    Once you get the dose right, its just not a problem at all - all my symptoms vanished and when my energy levels were sorted.  I just wish I'd had it done earlier.

    That said, when my thyroxin was wrong, I was in an awful state, so you do need to get the levels right - but that's a case of knowing they can be sorted and a bit of trial and error.  The blood tests said all was OK - it wasn't.  I've no idea what my levels are now - I just do it on how I feel.

    It all sounds horrendous before hand but actually once you are over the op, its not at all bad - and you get all your prescriptions free :-)

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  • Posted

    Hi I know someone who had thyroid cancer and had partial removal - they are doing brilliantly and very well on thyroxine. I am currently trying to decide if I have the thyroid removed or radio iodine. However if cancer was involved and wouldn't think twice about getting it removed. X
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    • Posted

      I wouldn't think twice if cancer were involved either. However, I would ask for a biopsy before making a decision. If you have Graves eyes disease radioactive iodine therapy makes it worse.
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  • Posted

    Thank you all for your responses. I really appreciate it!

    Ok firstly, while I am an english citizen (english by birth) I actually live in Melbourne, Australia (yes, a commonwealth but not England by a far stretch!)

    Secondly, I don't have cancer, The last biopsy (called FNA  for fine needle aspiration here)   I had was 2 years ago and it was clear. I have around 5 nodules, the largest is around 4cm - funnily enough none are really visible and neither is my breathing compromised at all.

    I would never have considered removing my thyroid if my endo hadn't scared me with the facts that even with biopsies, they cannot sample the entire nodule and where they don't sample, can have up to a 10% chance of having cancer.

    Great! (sarcastic) I'm a mother of young children (4 of them - 10 years and under) and I work and I'm really going to kick myself had I known that I let  questionable cancer prone nodules develop in my body with my knowledge because I don't want to have the operation.

    In the meantime, the appointment with the surgeon is end July and I have a convention to go to interstate a week beforehand when my period (ugh!) is expecting. My periods are really bad news for my body, I usually catch whatever is going around and I feel horrid and not myself. I cannot excercise, my tummy gets very sensitive and I am low energy.  

    When it suddenly clicked that Carbimazole may be excarcerbating it, I looked online and found your forum.

    You've been helpful. I am wondering though whether I should look into L caritine when I may have the surgery in 2 months time? What do you think? Also I have been on the naturapath route before I started the meds and while it controlled my symptoms it actually never moved my levels a notch.

    So Linda187, is there a actually medical review that I can show my endo in the meantime ?

    Has anyone tried going on the mini pill to help with the periods and did it help?

    Has anyone ever heard of someone being allergic to thyroxin? That is my biggest fear!

     

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    • Posted

      Hi Laraley. I must warn you that even if you put medical papers in front of your consultant, that he/she will not budge and will not move on it. I gave my doc the medical references, and showed him the bottle I was taking from and he saw the dramatic shift in my TSH from 0.12 to 2.4, but he still did not change how he practiced. I also showed him a diary of what happens to my results when I altered the intake of L-carnitine (dropping when I took less of it and increasing when I took more). I asked him if he recommended this to his other Graves patients and his answer was "No because I don't know anything about Carnitine". I have worked for doctors and I found that doctors follow the herd. What they are doing in their current treatments is "accepted medical practice" and they are reluctant to do anything different. This is because this is a natural product, not a new pharmaceutical that can potentially make millions of dollars for a pharmaceutical company. I know that carnitine is depleted in the muscles of Graves patients and restoring this helps patient's disease improve. My boss, a metabolic specialist who uses it for some of the diseases he treats, assured me it wouldn't hurt me.
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  • Posted

    The medical reviews are: THROID, Volume 10, Number 12, 2000. "Carnitine is a naturally occurring inhibitor of thyroid hormone nuclear uptake. By Salvatore Benvenga, Mark Lakshmanan and Francesco Trimarchi. Next one - Effects of Carnitine on Thryoid Hormone Action, 2005 (I don't see the journal information but I can send you all of these articles if I have your email address). Third one - MUSCLE NERVE 32: 357-359, 2005. Muscle Carnitine in Hypo- and Hyperthyroidism. By Christopher Sinclair, James Gilchrist, James Hennesy and Marju Kandula. In answer to your other questions, Acetyl-L-Carnitine had the quickest and most impactful effect on my TSH. For my periods when I had them, I took two Ponstan capsules at the beginning of my periods to get rid of cramps and it worked within 5 to 10 minutes of my taking it. I have heard not that people were allergic to Thryoxine but that synthetic T4 did not have the positive effect for them that a combination T3-T4 medication does or natural dessicated thyroid does. If you want to try the Carnitine, I would start on the Acetyl-L-Carnitine first. If possible, have your blood carnitine levels taken before you go on it (I am sure they will show a deficiency) which justifies you going on it. Then after you start it, within 2 to 3 weeks, get your thyroid levels done. You can postpone your surgery even if you have a booked date for it.
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