Levo = Zzzzz: Hey all. I'll say the story from... - Thyroid UK

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Levo = Zzzzz

emma1990 profile image
11 Replies

Hey all.

I'll say the story from the beginning, maybe someone is bound to relate :)

December 2013 I became very ill suddenly (no energy, bad palpitations where I could hear my heart beats in my head, dizziness and constantly craving sugary foods). I went to my Dr's and had an ECG where he found an abnormality with my heart. 3 days before Christmas I was admitted to my local hospital. Although they performed 3 ECG's there, the results fortunately did not show any abnormalities, however, my bloods came back showing a problem with my thyroid. Although they stated I had a viral infection (don't you love doctor's using this term when they don't know what's going on), my palpitations was very much there! The palpitations was so bad it kept me awake at nights and had them everyday.

Late January 2014 I had a repeat blood test where my thyroid function did not change and was referred to an endocrinologist. In the meantime, I was prescribed beta blockers for my palpitations. I finally saw a consultant on March 2014 where they stated that although my TSH is elevated, my T4 is normal (I have no exact results to post as my doctor does not share me the information!). They decided to start me off on levothyroxine and took me off the beta blockers.

For the first month I noticed a change where I was much more aware and could concentrate. Prior to starting the levo I used to sleep 12-14 hours a day (12 hours of sleep at night and 2 hours of napping in the day), however, after the first month of being on levo I noticed changes. My hair has been falling out (although not in big clumps and never had this problem), my palpitations are back and I am getting really tired easily and back to the 12-14 hours sleeping pattern. I exercise 5 days a week and eat healthy although I struggle to loose the weight as well. I also still crave sugary things. Just been for my blood test on Tuesday and awaiting my results. I suspect that the results will be 'normal'.

Anyone else been in the same situation?

P.S. Just to add as well, during my January appointment my Dr noticed I had a goitre, the swelling in my thyroid still persists.

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emma1990
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11 Replies
Happy-go-lucky profile image
Happy-go-lucky

I had the same symptoms. Had a racing heart and would jolt up during sleep with panic. This went on for months. Then had an other blood test in the December and have a low thyriod. Was up the wall at first but the symtoms started to get easier to cope with. Before the diagnosis I was breathless, shaky, felt strange, couldn't concentrate, had depression and anxiety. Am on levo 50 mcg. Some days are worse than others. I crave sugar and still feel light headed and strange but defo a big improvement to what I was. I have lost weight and I have thicker hair. So it must be doing something. Just sometimes your levels can fall for different reasons, stress, perids etc. Hope this helped a little and your not alone. We are all here for you x

emma1990 profile image
emma1990 in reply to Happy-go-lucky

Thank you for the reply. I don't get breathless or shaky but just the bad palpitations, i'm quite lucky as they are not as strong and frequent as they were however the fatigue is something else... constantly sleeping. The endo back in March told me that I was anxious... not anxious at all though and i rarely get stressed considering i'm a student social worker as well and my GP agrees. I was admitted to hospital on 23 June with what they thought was a pulmonary embolism but the nurse suggested SVT however this has not showed on any of my ECG's. The illness back in December was a one off and made me think maybe it was viral? I also don't get periods as i'm on the depo. Feels like i'm at a dead end. Best case scenario for me is for the bloods to come back and they will increase the dosage... I really cannot afford to sleep nearly 14 hours a day! :(

cc120 profile image
cc120 in reply to Happy-go-lucky

Hi Happy-go-lucky, I had sugar cravings. I avoided high sugar food for about a year, then started introducing again slowly, and have never experienced such bad sugar cravings as before, and that was before I started self-treating my hypothyroidism.

Elyn12 profile image
Elyn12

It takes a while to get the correct dosage and GP's put you on the most rediculous low dose to start with, so it takes ages to start feeling well again and during all this you have to function, work etc. I sympathise with you and can only say it does get better, really it does, but not quickly. 25 years for me and I know after this length of time if my thyroid is playing up and then it's a trip to my GP.

emma1990 profile image
emma1990 in reply to Elyn12

Thanks for the reply :) I feel like no one, especially the GP's don't appreciate how life can be affected by hypothyroidism. I will post back with my results on Monday (1. If my results are ready and 2. If they give me the results in full) :)

cc120 profile image
cc120 in reply to emma1990

Hi emma1990, it is always worth getting copies of your past 5 to 10 years of blood tests and post them up on here with the relating dose of thyroxine, and any symptoms you have. It was only when I did this that members were able to advise me fully.

cc120 profile image
cc120

I had similar symptoms with the tiredness at least. Self-medicated with naturethroid (for approx 4 months) my hair hasn't been falling out.

emma1990 profile image
emma1990

Thanks, my GP is a bit iffy giving me copies, would the admin people be able to do it?

Clutter profile image
Clutter in reply to emma1990

Emma, your GP receptionist or Practice Manager can give you your last thyroid blood results. If you want your entire medical records you have to pay £50 for manual and electronic summary or £10 for electronic summary only.

emma1990 profile image
emma1990

Thank you, i will ask for them once i get my latest results on Friday/Monday. Is that price for every GP practice in England and Wales?

Clutter profile image
Clutter in reply to emma1990

Emma, I believe so, but doesn't include hospital records unless copies were sent to your GP.

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