I need help to understand my situation, if I am getting reliable treatment.

Hi.

I was diagnosed with overactive thyroid about 2,5 yes ago but it took more than a year before I got any treatment. The tests have been sporadic and I have worsened a lot during the past couple of months.

The health care in Spain are not the best so I would like to know how you experience the help you get.

Have your levels been tested after reaching a normal level?

Are your symptoms being taken seriously?

I'll be greatful for any help I can get to understand my own situation.

Since I am getting a lot worse, not getting help, I fear a "thyroid storm" might be approaching.

My treatment is Eutirox 75mg. I started on 50mg. No new tests since January.

The past month I have suffered from temblores so strong that I have problems walking. (From dancing Ballroom to lying on the couch in just 3 weeks)

Nothing has been done

Thank you

19 Replies

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  • It should of course be micrograms, not milligrams

  • The same awful treatment seems to be worldwide since the introduction of blood tests and levothyroxine.

    Before that we were diagnosed upon our clinical symptoms alone and given NDT (natural dessicated thyroid hormones).

    We have to take our own health into our own hands. Read and learn and ask questions.

    First make an appointment to have a new blood test and it has to be the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours approx between last dose of levo and the test and take afterwards. Also ask for B12, Vit D, iron, ferritin and folate as everything has to be optimum. Deficiencies in minerals/vitamins also cause symptoms.

    Get a print-out with the ranges. Ranges are important as labs differ and put them on a new post for comments.

    Once we realise that most endocrinologists and doctors have no knowledge about dysfunctions of the thyroid gland except looking at a TSH result (which should be 1 or lower) we can do better ourselves.

    thyroiduk.org.uk/tuk/about_...

  • Thank you.

    I will try again... was thrown out of the hospital here last week. Came in with an ambulance with severe temblores, left with the same. Not able to walk... Here they only pump in painkillers until you give up.

    And thanks for the list of what to ask for! :-D

  • I am appauled by the lack of care for you, i hope you get the help urgently that you deserve dont they realise the danger of you being hyper. Im hyper taking 20mgs of carbi but now i have yo titrate the dose to 5mgs x2 a day. GOOD LUCK.XXCC

  • Thank you.

    The health care here is terrible. If a doctor don't like you, you are "screwed".

    I am actually seen as a "difficult patient" because I am well read on (most) my illnesses.

    When it comes to being hyper, I haven't been able to understand it. But I am getting suspicious that my illnesses can be linked somehow. Medications for one can make another worse... and I would like to understand more about the link between thyroid and SLE (Lupus). And other illnesses. My sister passed away in Lupus but the medics don't listen, they don't give me the information I need... So I simply don't understand... And I don't get the treatment I need. Only more and more painkillers... "Morphine until you shut up"

  • Thats disgraceful- greygoose has stated if you send in your test results with lab ranges she will help. Xx

  • Great people here! :-)

    Thanks!

  • Eltirox is for hypothyroidism, not hyperthyroidism. So, either your diagnosis or your treatment, is wrong.

    Do you have copies of your lab tests? Can you post them, with the ranges?

  • What???

    I am clearly hyper! All symptoms... BIG weightloss... I am only skin and bone.

    I don't have my lab tests but I sure will get them tomorrow morning!

    Thank you!!

  • You're welcome. Good luck.

  • Thank you.

    I am franticly looking through my papers, but have difficulties understanding.

    I think I need my lab tests and help from you to get to the bottom of this. They can be quite "lazy" with information here nad how they present them...and if some mistakes has been made they can literally say "Vale, no pasa nada" "Well, it doesn't matter"

    Once my IBS was translated to AIDS... and put in my journal!

    So my level of trust isn't very high

  • None of that is very helpful, is it. I can understand that you don't trust them. Obviously medicine isn't a precise science in Spain!

    I have no idea what labs look like in Spanish, but that's certainly what you need. But, I just found this : hormona estimulante de la tiroidea (TSH), tiroxina libre (FT4) and triyodotironina libra (FT3).

    Be careful with symptoms. They aren't always what they appear to be. Some hypo people can lose weight. And some hyper people can gain weight. Which is why we need the labs to back up the symptoms.

  • Thanks!

    Have you really searched for this for me?! I appreciate it more than I can say :-)

    Good to know about the symptoms, I had no idea and I know that people here always talks in the terms of weight loss/gain when they are talking about their illness. As it defines it... and I have picked up on it.

    I think that the base of medicine is at a good(at least ok) level, it's the attitude that degrades it.

    I will make sure to get the lab results tomorrow.

    It will be interesting to see where the mistake lyes and hope that I am on the right medication. I do believe I am because I did get better for some time.

  • Well, it could just be a mistake in translation. I don't suppose your doctors speak perfect English, do they?

  • They don't speak english at all... and that can often be a big problem.

    Where I live (Gran Canaria) they speak a very rapid, blurry spanish with a lot of Canarian words. So the lack of information can sometimes be that I misunderstand a word or two, or that they don't understand me...

    Due to a local bank-holiday I won't be able to get my lab results today.

    So I just have to wait... but I am sooo curious to where the problem lyes.

  • I can imagine you are, yes. So, how good is your Spanish?

  • This is a list of symptoms and I am sure you will tick off more than a few.

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

  • Just as a suggestion on the off chance, massive unexplained weightloss, multiple autoimmunity and thyroid issues can be associated with things like coeliacs/non-coeliacs gluten sensitivity which is also often diagnosed as "IBS" so well worth a proper look into that as testing for this is unreliable and maybe a three month trial to see if any symptoms improve. A gluten free diet can help thyroid issues anyway and many of us here have found a big improvement :-)

  • Thank you for your suggestion.

    I have the gluten in mind and I try to buy glutenfree, but I have to admit that I don't do it very well. So I'll try harder.

    And as well as IBS, I was underwent surgery last year for Mesenteric Ischemia and they had to remove 2 meters of my intestines. I was very close to loose my life, but after a few very difficult months I started to recover and I gained my weight again. So it can be a mix of various things.

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