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Hashimotos is making my life a misery

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psj123
psj123

Hi, I was diagnosed with an under active thyroid in 1994. A couple of years later I was also diagnosed with Hashimotos. I have been on levothyroxine 100 micrograms daily for around 20 years (started on 75 in 1994 then dosage upped). I am female, 58 and weigh between 10.3 - 10.6 stone. This varies on a daily basis. Every night I am drenched with sweats to the extent that  I keep a towel by the bed. This has been going on for around 7 years. Originally I thought it was the menopause as my periods stopped at 52, but it is still going on probably even more so. This of course disturbs my sleep and even if I do get a few consecutive hours I am always tired the next day. If I am not working (I am freelance) then I usually have to go for a lie down by 3pm as I am exhausted. I eat a mostly gluten free diet, chicken and fish but no red meat. Loads of fruit and veg, and I avoid dairy sticking to goats milk and cheese, almond and soya milk. I have high cholesterol and a vitamin D deficiency and have recently started taking vitamin D supplements. The cholesterol results annoyed me as my diet is good,  I believe this is partly due to taking levothyroxine. I also exercise regularly. Can anyone offer any suggestions as to how I can increase my energy levels and STOP the night sweats?

1 like, 24 replies

24 Replies

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  • bessybessY1
    bessybessY1 psj123

    Posted

    .( ,I am sorry I can not offer any solution to you,)but I am so glad I have seen your letter,upto seeing this I was beginning to think I was going Mad .......I was diagnosed last year with hypothyroidism started with 50mg now up to 75 ...but I believe I have had this problem for years ...all my tests were coming back borderline ....I refer to your sweating I have been like this for years and has slowly got worse my hair has gone very fine and when I sweat I look as if I have just got out of the shower, water runs down my face and neck and I find it all very embarrassing, and like you I am very often tired out ,yesterday i got up at 9-30 and was back in bed at 10 -30  and also slept again in the afternoon ,,,,,,,i know Ihavnt helped you but thank goodness i saw this .....it has all got me down .....thank you ,x  
    • psj123
      psj123 bessybessY1

      Posted

      Hi Bessy, I am glad this helped and nooooo, you are not going mad! I guess we just have to get used to the sweats and really don't get embarrassed by them. Xx
  • melody93815
    melody93815 psj123

    Posted

    Hi, have you reseach the effect of  vit d  defiency its very simlar to having the menopause syptems  . So if you have just started taking vit d it can take a few months to get into your system  so the doctor told me.
  • shannon93482
    shannon93482 psj123

    Posted

    I also am Vitamin D deficient.  I didn't have the sweating problem but I did have the rundown tired feeling even thought I was on Levo.  Once I got my Vitamin D back up I felt much better.  Good Luck to you.
  • isabel36588
    isabel36588 psj123

    Posted

    HI I was diagnosed hypothyroidism with anti bodies so assume that is hashimotos last Nov on Levo 25mg I wake a few times in night hot was sweating but not so much. I am.also on prescribed vit D and have noticed I don't feel so tired. I hadn't heard Levo increases cholesterol I heard this can happen with hypothyroidism I have given up soya milk as read on thyroid UK to avoid it. I am on the menopause so I thought the sweating was that but now not so.sure. I do think the vitamin d has made a difference and anything that boosts the immune system. I find my body isn't working as it used to but doing a lot more to.relax
    • psj123
      psj123 isabel36588

      Posted

      Hi Isabel,

      Thanks for the tip re soya. Just wondered, do you take any form of HRT? I don't and am rather nervous to take any more medication. Also, do you think the menopause can go on for 8 years? Thank you.

    • melody93815
      melody93815 psj123

      Posted

      I started taking hrt from last march. didnt realize it can alter your thyriod balance like soya can.  So to me if you decide to take hrt you need to keep your eye on your thyriod levels like me at the moment.  Some doctors like mine new that

       

    • isabel36588
      isabel36588 psj123

      Posted

      Hi

      I'm 52 and periods stopped off and on past year I know people who have said their menopause symtoms have gone on for many years. My gp suggested hrt as I've been having palpitations but I said no as wanted to sort thyroid out first. I have a double whammy of menopause and hypothyroidism coinciding with period of stress. I'm not sweating like I was so not sure what's affecting wot. I think I'm sensitive to the Levo do now take it every other day. But as shelley says there are different treatments and we can ask gp to consider this check thyroid UK they mention the different treatments. I'm s yoga Teacher and yoga helps with hormones as relaxes there's a great website old yoga with me it's free Teacher melissa is really good and try yoga Nidra the best to relax too. X

    • isabel36588
      isabel36588

      Posted

      Should have said do yoga with me!

    • isabel36588
      isabel36588 melody93815

      Posted

      Hi melody

      Glad your Dr knew that although my Dr is supportive I started to think I knew more than her. I also started drinking soya milk a long time ago instead of milk as have asthma and I know dairy can create mucus but now I wonder if with other things soya affected my thyroid. Now have oat milk.

      Have read that lots of women going through menopause develop thyroid problems.

    • barbara98940
      barbara98940 isabel36588

      Posted

      Zinc and selenium are essential for the immune system to operate properly.
  • shellyC19
    shellyC19 psj123

    Posted

    Hello PSJ:

    My name is Shelly and I am a nurse in the USA and I have Hashimoto's disease since 1987.  I am 54. 

    My story is a lot like yours.  Was on Levo for a long time and my TSH never would come up and energy went to nothing!

    My doctor tried all kinds of thyroid meds on me, and much the same result. One day he was eating lunch with an Endocrinologist and he found out I had a problem with LEVO or T4 prepartions like Levo, and put me on Cytomel (LIOTHYRONINE T3 only) and I am on 5mcg only, no Levo at all.

    My Hashi's wrecked my ability to use T4 and convert it into T3. What a difference it made.  I am awake and my TSH has been good for years now!  I feel much better and started walking to lose weight and lost 32 pounds slowly.

    i went to many Endo's but all they wanted was Levo and even though I told them it did not work on me. Itried NDT - Armour Thyroid and some improvement happened but not like T3.

    I don't like Hashi's at all.  It is awful and runs in families. Because of me,my sister got tested and she has it but hers was caught early and Levo works on her!  Also found an Aunt who had it on my Father's side.

    We can get thyroid disease and live with it, but the trick is getting the right med for you!  I am in the USA, but via this forum I have heard that Liothyronine can be prescibed by NHS.

    So ask for that and see what happens. The thyroid makes 4 hormones, but we need T4 to convert to T3 and it has to do that in the thyroid. Hashi's can wreck the thyroid slowly, so maybe you are hitting that wall as I did.

    Feel free to ask me any questions and PM me if needed. For a long time I felt non-existant and there are other meds out there!

    Regards,

    Shelly

     

    • shannon93482
      shannon93482 shellyC19

      Posted

      Hi Shelly - I was just wondering how your T3 med works.  Are you somehow still getting T4 (or other T's) happening in your system?  I am on NatureThroid and I feel so much better but I'm still getting muscle aches and twitching.  My energy is fine but I'm thinking that the T3 is higher than my T4 now and it's causing pooling somehow.  I'm still not completely balanced.  Not really complaining as I was so uncomfortable last year that I could live the rest of my life this way but if there is a solution I may try it.
    • psj123
      psj123 shellyC19

      Posted

      Shelly, thank you so much. I have never heard of Liothyronine so I will definitely speak to my doctor. Luckily he also has Hashimotos so it may be beneficial to both of us!
    • barbara98940
      barbara98940 psj123

      Posted

      I don't know whether you will be able to get liothyronine in your area of UK, I can't in mine even though I was previously prescribed it in 2012 - my GP tried last June (2015) but it was blocked by the PCT.
    • shellyC19
      shellyC19 shannon93482

      Posted

      Hello Shannon:

      It is a bit of a story so here goes:

      Back in 1987, I was put on Levo. I thought all would be well. Boy,  was I wrong!  

      Then in the mid 1990's  I went onto Armour Thyroid and it has more T3 in it.  However, I just could not convert the T4 part.  I had symptoms back as a teen and no doctor back then tested me.  So for rmany years my Hashi's got worse and I developed a goiter and 3 nodules over the years.

      When on Levo, I would never be right in TSH and I felt sleepy, and was losing hair, had brain fog, bruising, FAST weight gain, felt COLD,  and I could not think what was wrong.  I was taking the medication!!! 

      I felt like a criminal when I saw my blood results at the doctors, how do you explain you are taking your medication?  Lucky for me I was with this doctor since 1982 so he knew me and I was thin then an he knew I was a nurse, so he trusted me. I was telling him the truth. No internet in the 1980's and most people did not have a computer at home until about 1998.

      I was also on LEVO 25mcg then put on 50mcg and was getting nowhere with the blood.  It is frustrating to know you took the medication and why does it not show!!!  I pleaded to my GP that I was not getting anywhere with the Levo.  He listened and said he would change it to Armour Thyroid.  I was better on Armour Thyroid, but not 100%. 

      My doctor said he heard about just doing T3, from an Endo he ate lunch with, and he was informed about the converting problem.  Funny I must have seen 4 different Endo's and not 1 of them ever said that to me! 

      So I started just Liothyronine in 2009 and it was amazing for me!  I am not sleepy and have my energy back and can function. My hair grew back.

      To my knowledge my T4 is very low but T3 and TSH are okay. Ny doctor said that is okay.  I also have 3 small nodules that are bengin and maybe that caused some of my problem with converting T4 also.

      We have to find what works on us.  My sister who because of me got tested, and she has Hashi's but she can take the Levo and it works on her. Go figure that one out!  We are all different and some of us can take Levo and some of us can't.

      I think both NDT's and Liothyronine worked better on me than all of the years I took Levo.

      Regards,

      Shelly

    • shannon93482
      shannon93482 barbara98940

      Posted

      I have been taking Nature Throid since November and it works way better than Levo but I'm still having some joint pain and muscle weakness.  Just two day ago I started taking Thyro Gold.  I have heard good things about it and I long for the perfect formula so I'm trying it.  So far, I feel good except for nerve tingling in arms and legs.  I'm thinking it's a bit more potent than I was expecting.  Feeling a bit overmedicated so I'm adjusting.  Hoping for the best smile
    • barbara98940
      barbara98940 shannon93482

      Posted

      I might be able to give you an idea of dose for ThyroGold as I'm on it! I built the dose up slowly over 2 months, increasing it every 2 weeks (following the advice of tpauk).

      What dose of NatureThroid were you on and what dose are you on with ThyroGold?

      Private endo prescribed 2.5 grains of NatureThroid when I was on 175mcg thyroxine.

      Subsequently I lost weight and was on 100mcg thyroxine (weight =58kg) and this seems eqivalent to 750mg ThyroGold (though I now weigh 53kg).

      Blood test on 8 Jan 2015 yielded following results:

      TSH=1.5 (0.4-4.9)

      T3=3.1 (2.6-5.7)

      T4=11.4 (9-19)

      So all within range. I've been on 750mg ThyroGold for 3 months. I'm still getting some hypothyroid symptoms (e.g. colder than other people around me) despite being in range so have just had a blood test (awaiting results) and increased ThyroGold to 900mg. I think this might be too much though as at night I'm getting a whoshing sound in my ear in time with my pulse. This might just be my body adjusting to extra T3 though. Will give it some more time as have only been on 900mg for 3 days. I'm not freezing cold tonight - though my temperature is 35.8 Celsius (yesterday it was 35.4).

    • barbara98940
      barbara98940 shannon93482

      Posted

      When I was on 175mcg thyroxine I was prescribed 2.5 grains (65mg per grain) NatureThroid.
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