6 weeks from increase and feeling worse

Sorry for the moaning post, I just need to get it out somewhere.

Oh God I'm so tired. I'm SO TIRED. I'm at work at the moment and I feel like I could go to sleep right now and have felt like this for the past 6 weeks (since levo increased from 50 to 75mg). It's like a permanent chant in my head - "I'msotiredI'msotiredI'msotired" and I'm trying to just push through and keep going at work. If I can get to the end of the day then I can go home to bed and if I can just do that 5 times in a row then I can sleep for a whole weekend before i try to do the whole thing again.

My next blood test is this Friday and I literally cannot wait - maybe they'll increase my levo and maybe I'll feel better. I had 2 days last week when I wasn't tired and it felt like bursting through the surface of water and taking a big gasping breath before going under again.

I've got a meeting with my boss tomorrow to discuss my contract (it ends in April and I'm hoping it will be extended) but I'm worried that they won't because they can't rely on me. I talked to my line manager a few weeks ago about how rough I was feeling and she expressed concern at putting me on a new project as she didn't think I could manage. I can't afford not to work so I've not mentioned feeling ill since then and am telling people that I'm fine and actually feeling better. I hate being dishonest but I can't imagine how I would cope with losing my job, I love it.

I've just been diagnosed with a mild leaking heart valve as well which isn't helping matters - it also causes fatigue, headaches, fainting etc all of which I could really do without.

I'm sorry to complain, i try to usually stay positive as although Hashi's is rubbish it could always be worse and I try to stay grateful that it isn't. But today is a tired day and I just need to rant.

11 Replies

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  • I think you are more than entitled to complain. And although it might help you to know that most of us were in the same boat, in practical terms, right now, its not a lot of use!

    Do you have your latest blood results, from when they tested before putting your meds up? Its not unusual to feel worse before it gets better, and thyroid matters are just very slow to change.

  • Poor you - it is awful when you love your work but find it difficult. I eventually started my own business so I could slope off in the afternoons for a snooze :-( Income dropped hugely but somehow managed. Hashimotos not diagnosed for another 15 years ....

    Have you had your B12 - Ferritin - Folate - VitD tested ? Are they all optimal - as it can make a difference. Apologies if you have already posted about them - have not made the time to read your other posts ....

  • Thanks Ruthi and Marz - it's so frustrating how long it seems to take to get thyroid things settled isn't it? I can't believe you weren't diagnosed for 15 years, you poor thing!! From reading other posts on here I think I'm probably quite lucky with my GP - I was diagnosed quickly and haven't had to fight for additional tests and regular blood tests. I can't imagine feeling this rubbish and my Dr not believing me.

    I do have my most recent blood test results at home so will post them later when I finish work. I did have B12 and vit D tested for sure, not sure about the ferritin and folate though they were done when I was first diagnosed. I was told B12 and Vit D levels were good (but we all know that could mean anything!) but then I've been taking Pregnacare supplements for the past 2 months (was hoping to TTC in January but have to wait for my TSH to lower) so I don't know if that will have affected anything.

  • I was 59 when diagnosed - back in 2005 - so the Thyroid thing had been going on for nigh on 40 years. So many conditions to deal with - and a family - so carried on. Retirement gave me the time to read and learn once diagnosed and so doors to wellness opened.

    So please for you that you have been diagnosed earlier rather than later. Will look out for your blood test results ...

  • Sorry for delay, most recent results in mid Jan were:

    Serum TSH level - 7.91 (0.27- 4.20)

    Serum free T4 level - 15.1 (12 - 22)

    HbA1C lebel - 32 (20.00-40.00)

    Vitamin B12 - 503.6 (180 - 900)

    Glucose (fasting plasma) - 5.4 (3.00 - 6.00)

    Ferritin - 133 (30.00 - 400)

    Folate - 6 (4.60 - 18.70)

    Full blood count:

    Serum cortisol 9am test - 506 (171 - 536)

    white blood cell count - 4.26 (4.0-11.00)

    Red blood cell count - 4.86 (3.80 - 5.30)

    Platelet count - 309 (150 -450)

    Neutrophil count - 1.94 (1.50 - 8.00)

    Lymphocyte count - 1.79 (1.00 - 4.00)

    Monocyte count - 0.32 (0.20 - 1.00)

    Eosinophil count - 0.16 (0.00 - 0.50)

    Basophil count - 0.05 (0.00 - 0.20)

  • We are 2 hours ahead here in Crete so will reply in the morning 😴

  • OK your TSH is far too HIGH and when on treatment it is often mentioned here that it needs to be 1 or under. Your FT4 needs to be higher in the range which would suggest you are under-medicated.

    No FT3 result which is the most important one. T4 is a storage hormone and T3 the one needed in every cell of your body for good metabolism. So with a low T4 then it would be right to assume - your FT3 result will also be low.

    T4 converts well when your levels of Ferritin - Folate - B12 - VitD are all optimal. Your B12 is quite good - are you supplementing ? However as Folate works with the B12 processing in the body the result needs to be better. Around halfway in the range is suggested. I would supplement with a Good B Complex.

    VitD result not there ....

    Hope things go well for you ....

  • Thanks Marz , that's really helpful. I actually had a blood test this morning and made sure that I requested FT3 so I can check on that. I'm expecting the results to prompt an increase to 100mg levo this time around.

    I am supplementing B12 at the moment - very interesting to know about the folate though, I'll look into those supplements.

    Thanks so much for your advice, it's much appreciated. x

  • Sadly when GP's request the T3 Test - it is the labs that refuse to do it if the TSH is in range. I know it simply does not make sense - it is all about costs. Medichecks have an offer on at the moment for Home Testing Kits .....

    When supplementing B12 - results of blood tests are skewed. Only around 20% of the result is available B12 to be transferred to your cells where it is needed.

    I take Thorne Research B complex ....

  • Are you now on strictly gluten free diet as advised in answers to previous posts

    When you get retested, ideally you want to also check Vitamin D, folate, B12 & ferritin too

    Excellent web based document-series - re-running, starting March 1st

    Masses of advice for all thyroid issues, but especially for Hashimoto's or Graves. One episode (6 of 7 I think) is on pregnancy and fertility issues

    thethyroidsecret.com/trailer/

    chriskresser.com/the-gluten...

    hypothyroidmom.com/92-of-ha...

    amymyersmd.com

    Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    Assume you know thyroxine must be taken on an empty stomach and then nothing apart from water for at least an hour after. (No coffee or tea) Many take on waking, but can be more convenient and recent research, suggests perhaps is more effective taken at bedtime. (Must be at least two hours after eating)

  • SlowDragon I started the gluten free diet halfheartedly and didn't stick to it properly - I was feeling pretty fed up and love food so I (stupidly) decided to ignore the advice and just cut down on gluten rather than give up. Someone on here had already advised me that wouldn't work, it had to be 100% or there's no point so I've no one to blame for myself for that one. I will restart with a more positive attitude and actually do it properly and see if it helps.

    Those links are great, thank you for taking the time to post them.

    Yes I'm following all the advice you mention regarding taking levo and testing, though only because I read it on here, I wouldn't have known otherwise. I've not tried taking it at bedtime rather than first thing in the morning though, I'll give that a try. Thank you.

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