Feeling scared and alone - Levothyroxine ruining my life.

Posted , 19 users are following.

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.

4 likes, 37 replies

Report / Delete

37 Replies

  • Posted

    hello Heather,I had the same problem with Levothyroxine but there are other ways to treat your symptoms,have you checked Thyroid UK ,Also there are great thyroid groups on Facebook that are very supportive.I self medicate now after years of being ill with my Thyroid which went undiagnosed for years before I was put on medication.You need to know that there is help so do not despair.You need to read all you can on the subject & join a group where there are lots of fellow sufferers who will have been through what you are going through at the moment.It's a long journey & you will have to learn all you can along the way but you can do it,I have.
    Report / Delete Reply
  • Posted

    It's true to say that many doctors are not very knowledgeable about hypothyroidism.  They are always guided by specialists.  You will need to press your doctor for an appointment with an endocrinologist.  Speak to a pharmacist for advice also, though there seems little room for movement since no other drugs are given, and this is unlikely to change for quite some time.  Whilst you feel alone, rest assured that you are not.  There is also a facebook page for those with this condition.  Be careful not to make any sudden decision to stop taking the drug without medical advice.  Also take care not to follow advice blindly  from others without doing a bit of research first.   
    Report / Delete Reply
  • Posted

    Hi Heather,I support what's just been said.Please don't take yourself off medication.Ask for an endocrinologist referral.Research as much as you can.Join the thyroid facebook groups,and also google 'Unacceptable side effects of Levothyroxine ',which should take you to another discussion on patient.info.Keep in touch.We're all supportive on here.Gill.
    Report / Delete Reply
  • Posted

    Thank you so much for each of your replies, It really helps to have other people in similar situations and makes me feel less alone.

    I am trying to find a good Scottish endo that specialises in hypothyroidism but I am unable to really find any sad And referral through the NHS will take forever.

    Do you think I should lower my levo dosage even more? Or mabye take it alternating days? I just can't deal with the side effects anymore, my anxiety is doubly bad because of it. 

    I'm also checking out natural thyroid meds, does anyone have any info on them and their effectiveness? 

    And links to facebook pages?

    Deepest thank you's again guys smile xxx

    Report / Delete Reply
    • Posted

      Hi Heather,Facebook groups Hypothyroid UK and Thyroid problems UK are ones to try.Lovely supportive people on them.I'd try Thyroid problems UK first.

      Sorry can't help about what to do with medication.I'm on 200mcg,and also don't feel it suits me,but I have an appointment with an Endo in June in Oxford.Gill

      Report / Delete Reply
  • Posted

    Hi heather,

    It sounds like you may be on too much thyroxine.

    Have you had a blood test in the last 4-6 weeks? If not, it may be a good idea to go back to you doctor, tell him your symptoms and see if you get asked to get a blood test. You need to have the blood test done before changing the dose. Remember not to take thyroxine on the day of the blood test until after it has been done (else it will cause an inaccurate result). Also book a doctor's appointment afterwards for when the blood test results are back.

    Report / Delete Reply
  • Posted

    Hi Heather, I would also recommend the facebook groups on here. There are also a coulple of good books available on Amazon 'Your Thyroid and how to keep it healthy' by Dr Barry Durrant Peatfield and 'Hashimotos Thyroiditis Lifestyle interventions for finding and treating the Root Cause'. Id particularly recommend the 2nd one. I would also ask your doctor for a print out of all your test results, there are some very knowledgeable people on the FB sites who can help you interpret your results, and can often recommend diet and supplements that will help you. If you havent already, ask your doctor to check your Vit B12, Iron and Vit D levels. Its also worth asking for liver function tests. (My doctor did all these automaticaly, so NHS shouldnt bat an eyelid at this request). Could also be worth reading up a bit about cortisol and its reaction with thyroxine, that may answer a few questions, but may create more!! You are not alone in all this, hang in there, and fight your corner with your doctor.
    Report / Delete Reply
  • Posted

    Hello Heather - I am an RN (nurse) and I live in USA.  Levo is not for everyone.  I am 54 and when I first started on meds I was 27.  Levo did not agree w/ me and I had mal-absorption problems with it.  You do need to see an Endocrinologist who specializes in glands in the body. Your thyroid is called "The Master Gland" and it does a number of things in your body.

    1. It regulates body temperature.

    2. Causes an egg to ripen so you can get a period

    3. controls metabolism

    4. works with other glands like Pituitary Gland.

    Now in life as we age and in some of us, mostly women, our bodies go through changes, and the gland acts up and goes haywire.  It may go low or high.  In some it does not work at all.  They can't transplant glands yet, as the body will reject it. So they came up with meds that are made synthetically.   Some work and some don't.  Now most people are on Levo but there are other meds. You need a darn good GP or Endo doc. some other brands are Armour Natural Thyroid, Cytomel, Thyrolar, and others....side effects can be nasty and if  you had what I had, which was loose bowels, I changed meds. lucky for me I have a good doc. Be your own advocate and say, "this med is making me feel bad, I want to try another..."  Please call to see the doctor. You are not alone, many of us have thyroid problems. Thyroid meds take time to work in the body.  Some meds can take a month or longer before feeling better.

    It sounds like an adverse reaction or side effect and just call and make an appt. Please do not stop the med, unless you are having severe loose bowels or unable to breathe, or respiartory distress. then go to an Emergency Room if that happens. 

    There are other meds, so be strong, ask for that.  I hope this helps.

    Report / Delete Reply
  • Posted

    Hi Heather,  Sorry to hear of your recent struggles.  My opinion is that you may have been incorrectly diagnosed with hypothyroidism.  GP's are notoriously inept at managing thyroid problems and will make a diagnosis using the TSH alone .. this can be a disaster and lead to much misery for patients.

    If you stop taking the medication and feel better for it .. that will give you the answer to your problems.  The extra anxiety, heat and jittery feelings can be caused by being overmedicated.

    You must research thyroid conditions for yourself (don't be overwhelmed) there is a lot of information on the web .. just consider what you read and you will have some sort of understanding of how to look after yourself.

    When first given a diagnosis of hypothyroidism most people are overwhelmed and rely and hang onto their doctors every word .. many of these doctors don't have a clue about thyroid conditions (this I have learned the hard way) as have many others.  It's your body and only 'you' know that something is not right.


    Report / Delete Reply
  • Posted

    Its good to remember that depression is a common symptom of an underactive thyroid. To alleviate all symptoms its so important to be on the right medication. For the majority of people that is levothyroxine but it can take some trial to get the right dose. This is determined by how you feel NOT by what your blood tests say. Others require different medication - often because they dont convert the T4 (levo) to T3 which is the active hormone we need. Theres lots of support - so glad you found some here smile
    Report / Delete Reply
  • Posted

    Hi Heather,   I realise you're overwhelmed with info from other replies, so I'll just mention one thing -  panic attacks, anxiety, and palpitations are ALL symptoms of magnesium deficiency - as are insomnia,  muscle cramps, feeling irritable,  lack of concentration.  Please google it.  This is a vital mineral that your body needs, and being stressed and ill, and on medications removes even more magnesium from our bodies.   I would hand on heart, get some today. Anything your body doesnt need gets sent to your bladder.    I'd also support what lisa says - finding a book or articles that get to the root cause of it will be the key to getting better.   best wishes.    
    Report / Delete Reply
  • Posted

    Thank you a million times to everyone that's replied. I'm in the dr's waiting room just now so fingers crossed I'll be able to get some questions answered. I'll keep you all posted.

    Thank you again guys. I really appreciate it.

    Report / Delete Reply
  • Posted

    YAY!! GO GIRL smile

    Let us all know how you got on

    Report / Delete Reply
  • Posted

    Hi everyone - sorry for the delay in replying. I've been trying to just follow my DR's advice and not google or come on boards because I don't want to get any scary information. My health anxiety is through the roof with all this sad but I really need some advice again if you all don't mind.

    My dr basically told me the other day that my thyroid levels are not high enough to warrant taking a drug that produces so many awful side effects for me.

    He said to stop taking the levothyroxine for a month and see how I get on. I've stopped it for 4 days now and I'm starting to feel absolutely exhausted, achey and have my undereye bags back sad

    Now baring in mind that my anxiety and stress has been through the roof so this could all be because of that.

    But he also said my antibodies are high do presumably I have hashimotos no?

    He even got a second opinion from another dr before confirming his opinion that I should come off the meds.

    I have started taking ashwagandha and rhodiola because I've read a lot about these drugs helping thyroid.

    What would you guys do!? Should I start on Levo again maybe 12.5mg every second day? Or follow his advice and see how I go for a month? I'm so desperately fed up and confused by all this. I'm trying my best just to charge ahead but it's useless if I just feel bad all the time. I can't bear it guys sad please any help would be appreciated. Xxx

    Report / Delete Reply
    • Posted

      I saw the endocrinologist and he started me on some T3 Liothyronine.

      This helped me immensely. I started with 5mcg and now take 10mcg a day in addition to my Levo which I have not dropped to 75mcg per day.

      See if you can get an endo appointment and suggest that you have a trial of T3 to see if that helps you.

      I have also been taking ashwagandha at night. But only small amount.

      I have also had a daily drink of camomile and turmerric powder and I think the turmerric has helped my thyroid a lot. Turmerric is an antinflammatory and you should not take it alongside blood thinners.

      Hope this helps.

      Hope this helps

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up