Hello I am new to this site! I am on 50mcg levothyroxin for just over a year. Feel worse! High cortisol at night. Any link to meds?

Hi was accidentally diagnosed with hashimotos during routine blood test. Fine at the time. Progressively become more anxious, sleeping less and now getting private cortisol test and thyroid levels as nhs thyroid all apparently fine. Am in stressful job but have just had four weeks off and sleep pattern no better. Wake sometimes at 3 or 4 as if I have had sudden shock. Heart racing etc and often despite meditation etc can't get back to sleep. On paleo autoimmune diet. Eat really well and go for walks, yoga Pilates etc. nutritionalist thinks all linked to adrenal/thyroid problem hence extra tests. Don't have much money so wondering if any way could get saliva and thyroid hormones (ft3/ft4) done on nhs? Anyone have any luck? Doctor has agreed to send me to endocronologist. Someone recently said that if your doctor refuses a test you should ask for it in writing and then they are Limey to say yes!! Might be a good tip for others. Main problem is sleep! Just wondering if levothyroxin could be cause? Thanks in advance tired and wired member!!

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  • Hi The sleep may be thyroid. hyper causes different sleep problems to Hypo. but with Hypo. often sleep quite heavily and then awake several hours before able to sleep. The only good test for cortisol, according to my good Endo, is a 24 hour urine test with an oral tablet of low dose cortisone ( script) at midnight and a blood test at exactly 9am.It may be that thyroxine is not suiting you. You may also need some t3 on a script. depends on the basic tests,,or more t4 ( thyroxine) TSH, T4 and Free T3, only way of knowing frequently to start with and adjustments in meds Always ask for a print out of bloods and keep them.If you do not feel well, then you are not right. There are other tests that you need with autoimmune thyroid disease. The Endo will do them. make sure you go to a good one. pick your own carefully, then ask for a referral unless fully confident in your GP.

    Best wishes,

    Jackie

  • Thank you so much. I am glad I joined this site. My GP after about four visits has agreed to send me to an endocronologist. May not be a thyroid specialist but I can then ask to see one who is specialised (if not listening to me). This could take a while so meanwhile my nutritionalist wants me to do a 24 hour saliva test and urine test privately. It is expensive but I may just go with this whilst waiting and I could go armed with my results and more information when I see the Endo.

    I need to try and relax ashave read so much about the importance of sleep for adrenal/thyroid help it makes me worse as I worry!

    Anyway thanks again and I will get a copy of previous blood test results to bring with me. One thing I have been doing a lot is taking my temperature on waking and it always averages around 36.1. This was the only thing that my doctor eventually listened to and agreed to send me to Endo. Thanks again Bernadette

  • Don't spend money having the private tests as your endocrinologist will want tests done in their own lab as they are used to the ranges. Taking those results with you wont help.

  • What were your blood results when you were diagnosed?. Did you feel alright then 'cause if you did maybe the blood results suited you and you didn't need meds. What are your blood results now? You are possibly on too low a dose now as 50mcg is a starting dose. You might need more or as Jackie said some t3 put into the mix. Get a hold of your blood results and put them on here an you will get some advice. Hope that helps.

    Jo xx

  • Thank you and will do. Out of interest has anyone ever asked for a hashimotos retest? Perhaps I haven't got it and the levothyroxin is the problem!!

    This is a great site

    Bernadette x

  • Hi Bernadette

    We have a list of NHS Endos who have helped other thyroid people - drop me an email if you would like it:

    louise.warvill@thyroiduk.org (office closed for Bank Hol though)

    L

    x

  • Thank you that would be great. Do you always have to wait for a referral or do some give advice information on the phone??

    Not sure how long I will have to wait for my docs referral then may have to wait again if I want to see a different one. Feel ok when I sleep but last night was awful and I feel a wreck! Thanks again

    Bernadette x

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