Are you not scared of self medicating?

Hi, this is going to be a long one, please be patient with me.

Living in the UK for 45 years, had been going back and forth to dr about fatigue, he first said i was going through menopause at 32, then at 35 said because i was a vegetarian i was loosing my hair, fatique skin problems, memory loss, at 40 he says my gastro problems are nerves and depresion.

I moved to France ten years ago, the dr here treated me for 3 years with gastro problems, diviticulitus, then hiatus hernia, after 9 years going back and forth to the dr, she then said it may be my thyroid,

I was sent for many blood tests, put on levothyroxine, sent for scans were they discovered a small nodule, when my blood tests were not improving and my symptoms were severe, (now shaking, headaches, passing out, mood swings etc etc) i was then sent to have a biopsy, the dr said it was that small he didnt know why he was wasting time or money on doing the test, i told him not to do it, i didnt want to go through this stress if i didnt need to, he said because an specialist had sent me, he would have to do it.

5 days later i received a phone call to go back and collect my report from the clinic, (strange, as they normaly send them to the specialist) I was informed the test had come back as positive and not to worry, (yeh right)

I was given an appointment to see a surgeon in Bordeaux, he gave me a date for surgery, i had this done 8 weeks ago, they removed my thyroid and discovered there were a further 3 nodules that were also carcinetic. 4 weeks ago i was told it was the safe type cancer to have (im still laughing)

4 profesures had read my notes and now sugested that i have radioactive treatment. I went to collect and see one of the specialists 5 days later, he then told me i do not need treatment, i asked why the change in diagnoses within 5 days, he told me all results go to Paris, when they had come back, it was stated because my tumour were smaller than their guidlines, they would not give me treatment, butttttttttttttttttttt collectively they were bigger, he then said "it's up to you" i was so angry and said "excuse me, i am a house wife you are a proffesor, how on earth do you exspect me to give you an answer.

I have now contacted them 3 weeks after appointment and said i want the treatment, Paris is now deciding if they will give it to me.

I am so frightened, i still have all my symptoms, i thought they would dissapear after surgery, it is so difficult to get information over here in France, i speak a little French but do not understand the medical terminology.

Please if you have the time would you please let me know what you would do in my possition.

Thank you so much, please ignore all spelling and grammer mistakes, if i go back and correct, i know i will not post this.

Good luck every one, this illness is so cruel.

11 Replies

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  • Hi Charon,

    I am sorry you are in a bit of a quandry at present but your story is all to common nowadays, due to the fact that doctors either do not test for a thyroid gland function at all or, if they do, the make their diagnosis only on the TSH if it is within range they say all clinical symptoms are unrelated to the thyroid gland. They don't take any notice and ignore all clinical symptoms.

    Take your time before you have radiation as that will definitely make you hypothyroid. I think it is because the word 'cancer' that it frightens the life out of us.

    Someone who has had a thyroidectomy will surely respond to your query as they will be more knowledgeable than me.

  • Thank you for taking the time to reply.

    They told me before the opp that i was hypothyroid, and have hashimotto, i really do think with taking the medication that i am swinging between the two. i would be so scared of tampering with my medication levels.

  • If you can get a copy of your most recent blood test results for your thyroid gland and post them with the ranges, it will make it easier for members to respond.

    Some members with hashi's have found this book helpful. Don't rush into any decisions. I am hypo so haven't experienced the hi's and low's of hyperthyroidism.

    thyroidlifestyle.com/#!auth...

    I have self-medicated as do many on this site and it is not too difficult.

  • ok, thanks.

    my blood count for may was TSH 3 Generation 0.01 was 0.04 in April,

    the doctor phoned me immedietly and told me to reduce my doasage, im now takin 125g levothyroxine

    Im due another blood test next week and will update this post.

  • This is a link I have just read and it may be helpful for you.

    experiencelife.com/article/...

  • To answer your question: no i am not scared of self medicating. I am scared of the NHS.

  • I am not afraid of self-medicating. I am trying to save my life.

  • I would never again trust a GP with my health. The best thing I did was to take control of my health and visit Dr P.

  • Hi Charon, I live in France too, and I have Hashi's. However, I have never had my thyroid removed, so I can't comment on that.

    I self-medicate and I have done for many years. I saw a top doc in Paris and he said : once you get the hang of this, you won't need me, you can medicate yourself. The key is to read, read and read some more. Learn as much as you can from books and internet. It may seem complicated at first, but you soon get the hang of it. No, I'm not scared to self-medicate. I've made some mistakes over the years, but I'm still here to tell the tale. And on this site you have so many people that can guide and advise you.

    I'm surprised that they didn't test the FT4 and FT3. That is usually done in France - especially by endos. And if you ask a GP he will rarely refuse. They might grumble a lot but I have always managed to get it done. And it's that that you need to dose by, not the TSH. My present doctor always wants me to reduce my dose going by my TSH but as my FT3 is bottom of the range, I refuse. After all, it's my body, my life and my health. I'm not going to be told what to do by someone who knows less about the subject than I do! lol

    Stick with us and you'll learn a lot. I hope that someone who has been in the same situation as you will jump in and tell you all you want to know. In the meantime, take a deep breath and make yourself a cup of tea.

    Lots of hugs, Grey

  • Thank you greygoose,

    Everything has happened so quickly my head is spinning, only diagnosed hashi last year then cnacer in February this year, opperation done 8 weeks ago, i spend most days on the internet searching for more info, i have come across some sites were i have opted out of, but i feel quite safe on this one.

    I look forward to the day that i feel confident to tweek my meds

    I live in Dept 17 (Royan) and my specialist is in Rochefort and the surgeon in Bordeaux, im hoping thing's will carlm down soon.

    You sound very confident in what you are doing, thanks for the tip on being tested for other things, my next appointment is 31st July, so should know more.

    Good luck with your treatment

  • I live in the Oise. Only about 45 kms from Paris. Hence the specialist in Paris.

    But I remember it is a bit of a shock when you first get diagnosed - especially when you don't even know what a thyroid is! It's a huge Learning curve, but it can be done.

    Lots of luck and hope your next appt is a good one! Grey

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