Feeling scared and alone - Levothyroxine ruining my life.

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I'm writing this in a desperate way, and any advice could honestly make me feel less alone with this horrible situation sad.

I'll try not to ramble too much.

Basically I have been diagnosed with hypothyroidism and for the past year my struggle has been with levothyroxine.

They started me off on 25mg a day and this caused me to have major episodes of palpitations with an accelerated heart rate. 

So they lowered my dosage to 12.5mg a day and the palpitations stopped but I have other side effects that are ruining my life.

It might sound dramatic, but it has made me feel so jittery, nervous and anxious that the past week I've just come home crying every day with bouts of panic attack.

I suffer from anxiety, and get awful physical symptoms such as tingling and numbness on my face (this has been classed as anxiety, clear MRI, etc)  and only appears when I feel really anxious.

Since taking the levo regularly, these symptoms have come back full force and I'm finding it unbearable. I also get prickly heat feeling in my head and body, feeling very warm. 

I am completely on my last legs with this medication and I just don't know what to do. My DR doesn't seem to know much about hypothyroidism, and living in Scotland in the Highlands there aren't really many specialists I can find.

I'm considering stopping taking the levo because I'm actually starting to have no quality of life with these side effects.

I don't know of any alternatives? Or if the side effects will disappear once I get used to the levothyroxine? 

Please, please, please any advice or help I would be super appreciative. 

I really feel I can't go on like this.

Thank you.

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  • Posted

    Hi again Heather,  I wanted to reply to you because you appear to be quite distressed by what is happening with your health.  I don't agree with your doctor when he says not to search for information on the internet.  For some of us that is the only way we were able to gain the knowledge to give ourselves a better life.  There is much information out there and you 'must' learn as much as you can if you are to improve your situation.

    As to your question about the high antibodies .. I would think that you probably do have the beginnings of Hashimotos .. but you need the correct tests to be done to confirm this.  Are you able to see an endocrinologist? .. they are likely to be able to do the correct tests for you.  Ask your gp to refer you - you might have to travel a distance to see one but it could be worth it.

    Also, you give no information about results of previous blood tests done.  You must always get copies of blood tests .. ask for copies .. it is your right to have them.

    If you have been taking thyroxine for a year it is likely that your thyroid gland has gone somewhat lazy (this happens).  So when you stopped taking your medication recently your thyroid is now struggling to cope.  If you decide to stay off the medication for the time being you need to try to boost the health of your thyroid as you are doing.  Iron is very important for conversion of T4 to T3 and a lack of iron will also make you feel anxious and tired.  If you are told that your iron levels are ok as they are within the range - get a copy. Study them - are they 'low' with the range?  If so, improve them by taking an iron supplement.  The ferritin levels are the important ones for thyroid patients.  I have found that they need to be above 80.

    If you can not bear to be without the thyroxine you have the advantage of having the medication at hand and can therefore experiment a little with the small dosage that you are on by alternating days.

    You are not alone, you can always post again here or private message any of us.  We have all struggled with this illness and most have found ways of resolving the issues.  Hope your health will improve in the near future.

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  • Posted

    Hello Heather,  If you are able, try it slow, and take 1/2 a tab 12.5 mcg.  Give it a few days then up it.  Levo is not for everyone and some people get bad side effects.  I am on Cytomel (liothyroxine) and if you really get bad side effects ask the doctor if you can try another type of thyroid med.

    You need to be informed about your body and what the thyroid does and how important the gland is. I don't know why your doctor would not want you to use the internet to learn about it.  When I was diagnosed in 1987, we had no Internet, no computers, and all I got was a crappy 1 page handout about the thyroid.  Lucky for me - I am a Nurse, so my training gave me knowledge but today you have SO MUCH MORE!

    This forum is wonderful and I would have loved it back in the 1980's.  I think you need to stay informed.  I live in the USA but medical conditions like this are worldwide.  It helps to meet people online and learn about it and ask questions.

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  • Posted

    Thank you so much for continuing to post guys. It makes me want to cry with relief everytime I see a reply. Honestly thank you.

    I've been off the Levo since I said and my skipped beats have stopped altogether. But now I have really bad bags under my eyes and feel exhausted and cold. It just feels like a lose lose situation sad.

    I was considering taking 12.5mg of Levo every second day and see how that goes. My dr is going to get me to see an endocrynologist too.

    I've also started on the Autoimmine Paleo diet so I hope this helps with my hashitimos.

    I'm going to see a Chinese medicine holistic healer tomorrow too.

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    • Posted

      Hello Heather - You know there are some darn good Chinese medicine ideas out there.  Western medicine may look down on it, but some of it I am familiar with since I live in Hawaii, USA and we have a lot of Chinese people here.  They have been around over 5,000 years and acupunture helped my hubby's nerve pain coming from his neck. they also have good natural herbal items that help people. So go and see and try something.

      There are a lot of meds for the thyroid out there and "Levo" is not for everyone.  If  the Chinese healer does not help ask your GP or Endo for another thyroid med., Please!  I went through at least 4 of them until I found one that worked on me.  I hope this helped.

       

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    • Posted

      I agree with Shelly, there are some good Chinese medicine techniques out there e.g. Accupuncture, not sure about the Aphrodisiac ones though!
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  • Posted

    http://www.btf-thyroid.org/ Hi, have you had a look on the British Thyroid Foundation website (link here). I can understand your doctor not wanting you to get too caught up in some of the information on the web. However, if it is real reasearch, or from a recognised organisation it can be useful. There is also lots of misinformation floating around so obviously dont take as fact, unless the writer can justify. The FB groups are great and I've learned a lot from them - but not every source on them is reliable.

    This website will give you some good accurate information as to how the endocrine system works, and you can then build up your knowledge. If you havent already done so, I would suggest you cut out gluten, soy and maybe even dairy products. Doesnt have to be for ever, but try for two or three weeks and see if it helps.

    Good luck.

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  • Posted

    Hi Heather I had some bad side affects with my levo and I tried another brand from the chemist this is long shot but it may be the filler in the tablet not the levo itself.

    What brand are you taking?

    I too had palpitations on the low dose but they went away when my dose was increased.....dont know why and I do not recommend you increase your dose.  I would try 12.5 every other day until you feel ok with it or every two days and see what happens some has got to be better than none.

    Also as per everyone else if the doctor is struggling then suggest to him that an endo referral would be appreciated it lets him off the hook and you get to see a specialist.

    I would also get the Vits tested like others have suggested if you are hypo and have not been taking meds then it is likely you will have low vit d and vit b12 possible iron too.   If these are not high in the ranges then it can affect the absorbtion of the levo.

    Keep battling it is worth it in the end

    Big Hug

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  • Posted

    Hi Heather I also live in the Highlands. I have been referred to an endocrinologist in inverness. Took about 6 weeks for a referral. Worth asking your doctor.
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  • Posted

    Hi Heather,  I just wanted to let you know I have thyroid issues too.  As I have hypothyroid problems, I was started on thyroid medication and ended up with the same problems you are experienceing.  After many doctor visits, they tested for further antibodies and found I also suffer from hyperthyroidism.  I have antibodies for BOTH.  When on the Levothyroxine I have the symptoms of hyperthyroidism - Google hyperthyroidism and see if this fits what you are feeling.  If so ask your doctor to test for antibodies re hyperthyroidsim.  It is a delicate balance between the two illnesses.  When under stress I need a SMALL dose of Levothyroxine.  When my thyroid completely fails, the doctor said I can take full doses daily-  until then I have my blood tested to stay within a higher range that keeps me feeling healthy.  Best of luck to you in getting everything resolved!
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  • Posted

    Was also struggling with hashimotos hypothyroidism, feeling like there was no way out and having all the symptoms you describe with my dr finally telling me to get psy help to accept the side effects of levo. Luckily I found a chinese acupuncturist and also a homeopath who put me on treatment for hashi hypo. One month later I'm feeling more me than I've felt in the last 10mths. I've also gradually reduced levo on my own due to not being able to stand the heart palpitations. I'm positive the chinese herbs and homeopathy, change in diet and reducing levo have put me where I am now.

    Definitely consider all options. If you've battled for a year with no results it's definitely time to try another dr. Don't lose hope. You will feel better.

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    • Posted

      I suspect that whether one can 'do without' thyroxine depends on the degree to which one's thyroid is broken. If one has borderline hypothyroidism maybe one can do without meds by changing one's diet etc. My thyroid has been completely killed off my immune system and could definitely not do without my thyroid medication. I have though switched to an Over The Counter Natural Desiccated Thyroid named ThyroGold. Although I'm paying for it myself (even though the NHS should fund it) I wouldn't swap back to levothyroxine.

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    • Posted

      Yes. My NHS GP is running monthly blood tests on the NHS. I was diagnosed with hypothyroidism in 1991. Levothyroxine worked for a few years. Then in 1994 after having my first child it stopped working so well (symptoms were: cold, fatigue, weight gain, brain fog). My GP kept searching for an endocrinologist who could help. He found one. She identified that my Ferritin was too low to absorb thyroxine (needs to be 70+). She also believed in healthy diet, no processed foods and NDT if other options weren't working. Unfortunately she left NHS after my 2nd visit and I didn't know where she had gone. In 2014 I gave up work to concentrate on fixing my health and I found out where she had gone privately. I kept my GP up-to-date with what I was doing. She prescribed NatureThroid (privately). I swelled up after one dose. I looked up ingredients. Got maize starch (corn) in. Pharmacist had previously suggested I might be intolerant to it after hearing all the foods I reacted to. I searched on the web and found ThyroGold that doesn't have fillers in. Discussed with GP. Although he couldn't recommend it, he supported my decision to try it. He is now a complete convert to NDT after seeing the positive effect it's had on me. However he can't prescribe it without being at risk of being struck of, hence my search for an OTC one. I chose a bovine NDT as its T4:T3 ratio is closer to that of humans.

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