Feeling horrible and hormomes?

Enjoy (if that's the right word!!) reading the posts on here but would apprecate some advice! 

I was stable for 18 months on 50 Mg Levo  (low I know) and felt tickety boo.  I caught a virus last September,  ended up on Prednisalone,  admit I missed some Levo doses as I was so ill,  and life hasn't been worth living since really :(

October,  had bloods as I felt so poorly.  Doc said I needed to up my Levo so doubled me to 100 mg,  December I still felt dreadful,  blacked out,  heart palps, more bloods and I was too high,  so dose reduced to 75mg.  Feb bloods showed i was still too high,  so back on to 50 mgs!!

During this whole time I have felt lightheaded weirdness verging on dizzy and have constant tingling all over my body.  I've been tested for all my vitamins and stuff and all are in the correct range.  My diet is impeccable,  fresh fruit and veg,  pulses,  nuts (not walnuts/almonds),  no brassicas or soya.  Just good home made food with oily fish,  eggs dairy etc.

Sooooooo,  why,  despite all my differing doses of levo, do I still feel so sh*t!?  One thing that keeps popping in to my head is the connection with my reproductive hormones?  Can anyone help with this.  Until I got the virus last September I was having regular periods,  I'm 49,  but since the virus,  I hadn't had any until this week  when I have had a 5 day period,  very long for me.  Weirdly,  3 to 2 days before I came on I remarked to my daughter just how well I felt,  it was almost like feeling normal again,  but that short term hope ended with my period.  Is it possible that my issues are caused by being pre-menopausal,  and is there something that I can take to make my hormones be how they were when I felt fine 2/3 days before my period?  long shot I know,  but I'm getting desperate. 

Thanks in advance

8 Replies

  • Do you have any blood test results to share? Results in "the correct range" often are a long way from optimal. My guess is you're undermedicated and/or you're Vit D, and/or B12 and/or ferritin deficient...

    Hypothyroidism affects gut absorption, so even if your diet is impeccable it doesn't mean you can absorb the nutrients in your food.

  • I think the virus and Pred have upset your adrenal / thyroid relationship.  Pred will boost cortisol supply and this will intern lower thyroid hormone as the body uses cortisol to push the thyroid into the cells.  

    I would want to see what the adrenals are doing.  Could you do a 24h saliva cortisol test ?  

    If you have any antibody reactions in the thyroid this can make life much tougher to get balanced.  If you do it is likely you have hashis thyroid condition and this can require a particular diet to get on top of things, but even then it is harder to sort out.

    I would also look at taking the T4 at bedtime as this better replicates when we make our thyroid hormones.  

    Looking into using a little T3 may be useful as well.

    It would be good to see your thyroid blood test results though.

    If you have sex hormone problems oestrogen dominance can be an issue.  The oestrogen will prevent the liver from converting the T4 to T3 optimally.  Maybe if your period started progesterone was getting higher in the system and so this reduced down the oestrogen.  

    I would read the progesterone forums to get some more info on this issue.

    As you can see from my reply, the answer is unlikely to be one thing.  The hormone system is interlinked which makes it harder to work out what is doing what.  We can give you pointers on the forum but you may have to go away and try things out to see if they make a difference.  You can get balanced, but it can take over a year to get there.  It is often never as simple as taking a bit of T4 and then increasing it unfortunately. 

  • Just noticed I spelt hormones wrong in the title,  sorry bout that :)

    Thanks for the replies

    Here are my latest range of tests.  I'm due thyroid boods again soon.

    25.2.16 While on 75mg's of Levo,

    TSH = 0.03 (ref 0.10 - 5.00mU/L)

    free T4 level 19 pmol/L (reference range 8.00 = 19pmol/L)

    Levo reduced to 50 mg's/daily

    Also,  these from january when I felt too poorly:

    Se thyroid peroxidase Ab conc 127 iu?mL (range 0.00 - 75iu/mL)

    I have no idea what this is referring to??

    Tests last taken in October 2015

    Serum ferritin 22 ng/mL ( range 10.00 - 300.00ng/mL)

    Serum folate 5.4 mmol/L (range 3.50 - 9.00mmol/L)

    Serum vitamin B12 602 pg/ml (no range published)

  • The thyroid peroxidase is elevated and can indicate hasimotos disease.  This is where the thyroid is attacking itself.  I would find out if you have this condition from the GP.  

    Ferritin is your store of iron and it is low.  It needs to be above 70.  Iron helps with T3 absorption.

  • You need a proper, thorough overhaul. 

    If your GP only did a TSH and T4 that's not much good particularly if it was 'in range'. He has to do a Free T3 and Free T4 as well as Vitamin B12, Vit D, iron, ferritin and folate. If he wont do FT3 and FT4 you can get both done privately from a recommended lab.

    GP's mistakenly believe (bad training) that to have the TSH anywhere in the range is 'fine' and that we have sufficient levothyroxine. If it goes below 1 they adjust dose of levo to make it rise and so on and so on, so the patient is never well with adjustments every few months. We need our TSH around 1 or lower with FT4 and FT3 towards the upper end of the range..

    I've been on the same dose of thyroid hormones for more than 2 years now and haven't adjusted anything and have a yearly blood test. If I had any symptoms appear I would increase my dose by a tiny amount.

  • I think your result below was good  - which you've quoted above:-

    TSH = 0.03 (ref 0.10 - 5.00mU/L)

    free T4 level 19 pmol/L (reference range 8.00 = 19pmol/L) 

    So am assuming that due to the top of the T4 level that your FT3 would have been good too.

    He also reduced by a large abouve, i.e. 50mcg. of T4 no wonder you're feeling awful.They really do not know how to treat patients particularly adjusting only to the TSH result. Patients who have had thyroid cancer have to have a supressed TSH and they don't come to any harm.

    I often have a TSH of 0.01.

    Your ferritin and folate are both low and as I'm not good with bloods others will respond.

    (I'm not medically qualified - just have my own experience to go by).

  • Ferritin is on the floor.... So you will have problems with conversion of t4 into t3....   

    Who assured you it was ok?   Let me guess.....        

    75 mcg of levo was  giving you reasonable levels......     But the lack of ferritin wouldnt have helped,....


  • Yes,  I thought the ferritin was low.

    Anyways,  today I booked my 8 week thyroid bloods only to get a phone call saying that they do them every 12 weeks now!  Must admit I had a bit of a rant to the practice manager about no-one taking ownership of my thyroid problem,  no-one following up the changes with how I'm feeling,  no-one really caring while i continue to feel crappy.  Unbelievably the practice manager said she'd organise more ferritin/folate/b12 and vit D tests when I'm next thyroid tested,  something I couldn't get the doctor to do!!

    So people,  what optimal numbers do I need to be aiming for please?.

    TSH 1 or less

    T4,  top end of the range?

    What about the vitamins and minerals?

    Still feeling shit but the practie manager at least made me feel as if she cared!!

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