talking to doctors

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I am sturggling as I dont feel that any of the doctors I have seen are taking me seriously. I am 23 and I am on 300mcg of levo, I feel awful and still have all the hypo symptoms along, my anxiety and depression along are at an all time high and my whole body is exhausted, I am continuosly shunned off and told to lose weight (which i have). 

I have a history of heart problems and yet the fact I have palpitations doesn't appeat to worry any of the doctors. I also never get a full break down of my blood results, I just simply get told theyre abnormal and to keep taking the 300 dosage.

Basically does anyone have advice on how to get someone to listen to me before real harm is done. 

thanks 

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7 Replies

  • Posted

    Hi janine, sorry to hear that. They kept increasing my Levo when I was still symptomatic, despite losing hair and having heart palpitations.

    the dose you are on is incredibly high (although larger people will need more, it is still a massive dose) obviously I don't know your height and weight.

    it may be the fact that you don't do well on levothryoxine (which some people don't). Levo is a T4 hormone and is meant to convert some of this to T3. Some people don't convert properly, hence why they still feel rubbish and have other symptoms even at high doses. Get them to test your free t3 levels (they don't usually and sometimes it's a battle to get this tested). Liothyronine is a t3 medication that you can take in combination with levothryoxine. In the UK you usually need a referral to an endocrinologist before doctors will prescribe these day as it is classed as expensive. 

    My advice- get them to refer you to an endocrinologist and discuss alternative treatment and also get your vitamins tested - ferritin, iron, b12, folate, D, cortisol etc. These all have an effect on the absorption and use of thyroxine in the body.

    you need to have the full picture so you can see what is wrong, 

    hope this helps

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  • Posted

    Hi Janine, I endorse everything Sayhitocaz says and would like to add that you measure your Selenium and Ferritin levels. These are two minerals which you need in order to convert T4 to T3. But again, get these measured before you supplement your diet with either because while they are both absolutely essential, too much of either can be toxic. Should you be found deficient in Seleniium I would suggest you eat two brazil nuts per day because they are very, very rich in Selenium. Should you be found deficient in iron, eat lots of red meat, Spinach, Cashew nuts and lots of vitamin C so that you absorb the iron in the aforementioned. 

    One of the ways we judge overdosing of T4 (Levo) is to "watch" for palpitations. If you get them, you are overdosing. I was overdosed at 150mcgs and had to drop back to 130mcg.

    Just FYI many of us have had to change doctors multiple times. Docs are just not very well educated in thyroid matters, even Endos. Some of us travel hundreds of miles if we find a good doc,  remembering that you may only have to do this once a year to get blood tests and your prescription - so it doesn't seem so crazy.

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  • Posted

    Hi Janine, that's really sad to hear what you're going through.

    I also have an Underactive Thyroid, Hashimotos disease & PCOS.It took me 2 years to get my doctor to finally referee me to a Gyno

    .I now have to go see a Endocrologist so I hope he'll referee me without question.It "simply" took a lot of pressuring and constantly complaining about my symptoms until he eventually said "I don't know what to do about your symptoms" (which I already knew!)

    Every doctor I've seen has been useless as I generally think they don't know enough about it all.And nearly everyone I've told my symptoms to act like I'm making it all up,it's very hard to be taken seriously with your Thyroid.

    You can always ask for a second opinion if you're not happy.Also I printed off loads of research & information about it all as a backup.

    Hope you get the help you need!

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  • Posted

    Hello Janine:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987.

    300mcg is way to high of a dose and can cause heart rate to go so high and it can also cause a heart attack. Palpitaions are dangerous and the beat is off which can cause an arrythmia to happen.

    In the body T4 must convert to T3 to be used by the body.  Some of us  can't take levo as we can't do that.  We are all different and it is not a one size fits all, type of deal. Levo can cause the liver damage in high doses. Most people are on 75mcg to 125mcg only!

    Levo does not work on everybody.  I  had to go off it years ago. I am only on Liothyronine.

    There are many meds on the market, such as: Liotrix a T3 to T4 combo, Liothyronine just T3,  NDT's called naturals Armour Thyroid, Thyroid S and Thyroid W and Thyro Gold.

    So please get on a different med before Levo ruins your heart and Liver.

    Regards,

    Shelly

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  • Posted

    just a quick update ive had a full blood screening which apparently back normal.

    I am concerned about my dosage as I already have arythmia and my family have a history of liver disease (my mother passed away from liver failure just last year).

    as for endos, I was referred when I was younger but I was removed as I lived too far away. 

    I feel like I'm just fighting a losing battle 

    thanks for all you replies, I'm going to take all on board and go back to a doctor again. 

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    • Posted

      Hello Janine:

      Please see an Endo in your area.  You need to get off of 300mcg as that kind of dose could cause arrythmias and palpitations and even liver trouble.

      Perhaps, you need a lower Levo dose and some Liothyronine which is T3.  The answer is not to keep increasing the Levo but to find a medication that will work better on you.

      Hang in there and see an Endocrinologist ask your GP for a referal.

      Regards,

      Shelly

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  • Posted

    Janine, to give you an idea of the recommended dose for a person of your weight, the calculation is 1.7mcg multiplied by weight in kilograms. I'm not medically qualified so make your own judgement whether you follow this advice, but if that was me and this calculation shows I'm overmedicated I would slowly start to reduce the dose by a quarter of a 25mcg tablet every 2 days, then once I'd dropped by 25 mcg I would keep it at that dose for a 4 weeks and see how I felt. Then if still getting over medicating symptoms I would slowly reduce another 25mcg until I got down to the recommended dose for my weight. The problem here is I'm not medically qualified and I don't know your full medical history, so if you follow this course of action you do so at your own risk.
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