No other treatment besides Levo and it's NOT WORKING!

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Just back from my dr's and he tells me that since there is no other treatment here in France besides Levo (the other one they have is a mix of T4 and T3 but would be harder on my heart and I'm having faster hb and palpitations on levo), he advises me to go see a psychologist to deal with my stress levels and to prevent depression as with hypothyroidism that's where I'm headed (didn't tell him I already feel depressed)!!!!!!!! He also said perimenopause is a 3rd factor but why bring that into the equation when I'm having no symptoms? I asked could we test for hormone levels and he tells me since my periods are normal there's no point. I also vomit most mornings due to being clogged up. Last November I asked him for an allergy test but he prescribed me a cortisone nose spray for 3 mths. Still have the problem and he's prescribed me allergy meds and more nose spray.

Feeling SO angry and frustrated right now but know it can be dangerous to stop the levo.

Last blood test: T4 10.8 (9.3 - 17) TSH 4.13 (0.27 - 4.20)

I'm taking vit D, selenium, B complex, calcium/magnesium/zinc, omegas 3 and 6.

Levo is giving me hand tremors, fast hb, insomnia. I'm currently on 37.5mcg after being on 50mcg for 7wks and having more intense side effects.

So basically dr tells me this is the treatment, suck it up and help myself by getting psy help.

I've had some advice on here about getting T3 meds in britain and at this stage I'm willing to try anything. Are there any side effects? How do I know what dosage to take? Can anyone give me any advice on what I should do next? I'm at my wits end. I think I should change my dr but if that's the only treatment here, is there a point?

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  • Posted

    Sounds like very similar tripe that most get told in the UK! :-(

    I presume he is talking about Natural Dessicated Thyroid, and the rubbish about "hard on the heart" is the same old rot many get told here. If that was true, then what's wrong with pescribing T4 and synthetic T3 instead?... it is even available in the UK too, even though many won't prescribe it, bet it is just as available in France too! (quick research shows that Sanofi brand "Cynomel" T3 IS available on prescription in France!)

    Your TSH is far higher than it should be on Replacement hormone, and T4 is far too low... only guesswork tells us what your Free T3 actually might be!

    Your symptoms might even be an indiication you are not converting T4 to T3 as easily as it should be (sometimes called "pooling") as much as it could be from being too high as your TSH and T4 certainly do not support you being HYPER at all! Without full testing it is just all guessing :-(

    You DEFINITELY need full thyroid tests, Free T4 and Free T3, as well as Antibodies.

    You might find getting sucessfully treated somewhat easier if you can get to Belgium... there are Doctors there who have a much more enlightened approach to Thryroid replacement and hormones generall, some from the UK have successfully made that journey.

    Search for "Thyroid UK" for a site that knows all about this sort of situation, you are far from alone with these sorts of problems.

    Some of us have even had to resort to self treatment, but to be honest I don't reccomend this unless you are very technically minded and wll researched, it's not somethign to do blindly.

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    • Posted

      Thank you for that Ian. I do wonder if my body is having problems converting the T4 to T3. My TPO in January was 304.5 (<34) so I do know that this can create problems for Levo. My dr refuses to test TPO again as 'there's nothing you can do to fix it'. He tells me he doesn't really know much about Cynomel - so perhaps if I change dr I might be able to try this one and see if I react better to it. He said it's harder on the heart and my endocrinologist confirms this - but do not explain why. Do you know of a dr in Belgium?
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  • Posted

    Hello Mary. I am in the United states and have in the last few weeks started hormone therapy. I take estrogen and progesterone. I am a 28 year old female. My hormone levels were dangerously low.. I was at 23 normal levels are between 300-400. I never missed a period or had any real tale tale symptoms of low hormone levels. I knew I felt off but thought it was stress. I also to have low thyroid levels. Not low enough to warrant medication as far as the doctors are concerned.. my doctors think that the majority of my problems are anxiety and stress related and have been treating my anxiety. I don't feel any real difference as of yet on my hormone therapy. I noticed my last period was not normal..and only lasted a few days.. lt doctor said that I was basically premenopausal and he couldn't explain why I was still having periods.. I think doctors are reluctant to prescribe hormones but I notice that thyroid issues and hormone issues are usually tied together.. hormone and thyroid issues that are off can cause anxiety and depression.. so it's a vicious cycle that doesn't get treated right unless you find the right doctor.. hope you get help!
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    • Posted

      No. These results are for the most part new.. I knew that my thyroid was underactive but at that time the endocrinologist I saw didn't think it was off enough to treat. The thyroid levels are not extremely low. They are off but no where near how low my hormones are.. I am almost done with the hormone therapy so I will be retested in about a month to see what all is still off.. I hope you get the help you need.. it is a frustrating process I know. smile
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    • Posted

      Amanda Have you ever thought about showing the drs the letter published on this forum entitled

      'I am Graves, author unknown.

      I will try to find it as it was actuslly published on this excellent forum. Keep your chin up thats the main thing.  Kind regards

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  • Posted

    Hello Mary:

    You may have to buy one of the Natural Dessicated Thyroid meds, they are better as they are made from a pig's thyroid gland and are very close to ours. 

    You will have to go outside of the medical system you are on, since they do not carry this med.  A lot of people can't take Levo. There are other ones such as Nature's Thyroid, Thyroid S and Armour Thyroid. 

    Please keep us posted on how you do,

    Shelly

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    • Posted

      Far too early days to be rushing straight into any T3, all the more so without the correct monitoring and prior testing. For adrenal function testing a 24 hour Salivary profile is best, although of course an inital  blood test for Cortisol is useful too.

      This intially was one of my own problems and I take Natural Dessicated thyroid myself, and know how effective it can be, but as I said before self medicating is not to be taken lightly nor without the correct testing, especially as T4 only is not working, and there is usually good reason WHY it is not working, and low cortisol is a common reason.

      I reiterate adequate researching.

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    • Posted

      Thank you all for replying - it's such a big help.

      I'm afraid to take T3 without supervision as I already have my heart reacting badly to Levo and T3 is supposedly harsher on the heart?

      I will read up more - we can never know enough it seems when it comes to the thyroid. My dr refuses to check cortisol or adrenal....I've just been for some acupuncture which I find has helped clear the clog in my head and I feel more energy. Another appt in a month and some chinese tea to drink and gut clearing to do. I'm cutting out gluten which I know will make a difference as I'm severely bloated and have tummy pain. Think I may just have to change my dr to get the tests I want. I'm taking selenium as a supplement. Hoping that by the end of the summer I'll feel better than I feel right now. Checking out that dr in Brussels now - thanks for that! smile

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    • Posted

      Hello Ian I was interested in your comment that it is far too early to be rushing straight into taking T3. Please would you explain what you mean?

      Many thanks 

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