Potential side effects to levothyroxine

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Looking for some guidance please. I was diagnosed with hypothyroidism 5 years ago and I take 25mg of levothyroxine daily. 

Three years ago I had an ultrasound scan of my neck for something unrelated and was told that I have thyroiditis as well, the doctor didn't seem bothered by this and I've always just assumed it's hashimotos which doesn't matter really as the treatment is the same.

Anyway for 5 years I've been suffering with hair loss and acne but recently I've been tired after eating carbohydrates and just have a general feeling of ill health. I also have IBS type symptoms.

The hair loss and acne seem worse when I take the thyroxine, I stopped for a time as I believed the hypothyroidism was post partum but my blood tests changed so I started taking the thyroxine again and the hair loss and acne worsened. 

I also cannot lose weight despite diet and exercising 5 days a week. 

My doctor isn't interested in my symptoms as they aesthetic and is happy with my dose so I don't really know where to turn. If I increase my dose the hair loss and acne will worsen but if I don't I'll never lose weight or stop the tiredness.

Feeling really exhausted by it all, I doubt very much that my doctor will refer me to an endocrinologist so I need suggestions to try to take control of my health please. 

Thank you for reading 😊

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6 Replies

  • Posted

    Hello Jacqueline, I have overactive thyroid for about 15 years and I know that hair loss is one of problems with thyroid problems, but what I have found is that if I am NOT on the correct amount of thyroxine I have the same symptoms as yourself, especially weight gain. If your doctor doesnt  check your getting the correct dosage, then I suggest your change your doctor. Also I would check that you do not have any type of Diabetes, which by the way I have, Type 1. I have had diabetes since I was 25 years of age. Just get a second opinion hon. Do you live here in the UK or in the USA as here the NHS is brilliant and you shouldnt have any problems going to another Dr. If you live in the USA then its a different case of ....Doctors know best. Sorry but as far as I am concerned there is no excuse for NOT trying another amount of thyroxine. Nag him and let him know that all of this discomfort for you is not acceptable, therefore you will change your doctor. As soon as I was put on to the correct dosage of thyroxine my weight fell off. I hope I have helped a little bit Jacqueline and i wish you lots of luck xxx
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    • Posted

      Thank you so much for your reply Kathy, I am in the U.K but unfortunately my GP practice isn't great, all the doctors I've seen aren't interested in symptoms only lab results. I think I'll have to make a nuisance of myself until I get some help but all except one of the doctors seem to be pretty clueless. If I don't get anywhere I'll considering going private.

      I'm regularly checked for diabetes but I do have an iron deficiency and I'm starting to wonder about gluten intolerance so I'll ask to get checked for that too. I'll also ask for a print out of my results.

      Thanks again for your reply, it's good to hear that the symptoms might be due to incorrect dosage rather than a side effect of the medication, at least I know which way to go with it.

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  • Posted

    Hi

    So sorry you are going through this.

    Firstly, go see another doctor. Secondly ask to see your results and if you do t already, learn what they are and mean. You are probably in range but if you are having the symptoms that you are, your levevels could do with adjusting. I always find it best to write a list of my symptoms to take with me to the doctor. And don’t tell them you are tired . Write down ‘persistent fatigue.’ Do a basic diary for a week of your diet and exercise t show them.

    Low calorie diets are not good for people with thyroid conditions. If you are doing heavy exercise, maybe turn to s gentler form for now. I do lots of walking and yoga. 

    I had the same symptoms. I went to see a different doctor who said yes I was in range but wanted to get my tsh lower to 2.0. 

    I did have adjustments to my levo and began to feel better. My hair stopped falling out and now feels thicker . I still suffer from slight hair loss when I don’t look after myself and feel tired and run down. Please try not to worry if you suffer more hair loss if you change your levo dosage. Give it some time. I always have hair loss if I change my dosage then it settles down. If it doesn’t then speak to your doctor more about this and what could be causing it. 

    I also suffered from acne during my dosage changes so knew I had a hormone imbalance. 6 months after my final increase in dosage, everything settled down. But I did change / my skincare routine as well. 

    Do you take your levo away from food, caffeine and other medications?

    Have you had other bloods done like B12, vitd, folate, iron?

    If after all these, and you still no better, push to see a endo

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    • Posted

      Thank you Jennifer that definitely makes sense to me and I'm very grateful for your advise. 

      I'm going to go back and request an adjustment to my dosage and if I don't get anywhere I'll ask for a referral or go private. 

      I do take the Levo on an empty stomach but usually with my morning coffee is that a no no then? I also have an iron deficiency due to heavy periods so I take a multivitamin for that too.

      Thanks again for your advise I'll go down the route of dosage adjustment and fingers crossed they'll get it right before I go bald! 

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  • Posted

    Hi Jacqueline, there was a recent large, longterm study showing that 25mcg dose of levothyroxin does not improve hypothyroid symptoms. The study was done in Scotland and published in 2017, to my recollection.

    I did not find medication was effective for me, and it seened to make things worse and caused stomach pain.

    I have done away with meds, as they were ineffective and harmful to my health. I have concluded that my thyroid problems were worsened by the meds and that chronic pancreatitis plays a role in contributing to my symptoms. 

    My formula to get my health back on track,  so far has been essential amino acid and digestive enzyme supplements, acupuncture, and treatment of chronic pancreatitis and gallbladder towards improved digestion. 

    If you look up chronic pancreatitis, you find it causes EVERY gut symptom imaginable. 

    Digestive enzymes, HCL and other digestive supplements can imorive digesting, reducing malnutrition and many symptoms.

    I suggest your energies are best spent increasing your nutrition and digestive health.  You may find you get relief from this avenue of focus of supporting the system more so than  supplememting thyroxin.

    Good luck! You aren’t alone!

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