When will this get better?

Hi everyone, this forum was recommend to me on another forum so hoping someone might be able to give me some useful advice.

I was diagnosed with hashimotos hypothyroidism just over a year ago aged 31 but I can track my symptoms back many years to when I was 26 (I had low milk supply with my third child despite having exclusively breastfed my previous two children but no health professional ever highlighted this as a possibility). My dose was slowly increased to 100mcg levothyroxine but dropped to 75mcg very recently. At this point I was also told I was vitamin d deficient although I had to push for tests other than TSH. I have since read on here that I shouldn't have taken my medication before the test which was in the afternoon. The results were TSH 0.01 and T4 18.1 although I didn't note down the ranges and was only told 'normal' for the other things tested. 

I have always been symptomatic throughout and these are getting worse since the dose reduction. I have daily headaches, feel cold, constantly tired, a sense that nothing is 'real', muscle aches, poor immunity, weight gain which I struggle to lose, and very low mood. The worst thing however, is the brain fog and memory loss. I was once quite erudite with very good memory (never needed a diary) but now I often can't string together a sentence, will forget what I was saying mid sentence and forget important appointments etc. which is hard going with three children and their various appointments and activities! 

I've no confidence left, mainly down to the weight gain and inability to speak properly, and have lost most of my friends because I never accept invitations anywhere. They've given up on me. I don't even know if I can remember what it feels like to be well. At the time I was diagnosed I was told it takes two years to feel better and that gave me hope. I told myself things would be different by this point but disappointingly I still feel very ill and at age 32 feel like my life is slipping away in a haze of headaches, pill popping, blood tests, stress and anxiety. 

Is there anything I can do to improve my situation? The doctors seem reluctant to order any blood tests except for T3, T4 and TSH but I'm willing to try supplements or diet adjustments. I'm sick of being sick and waiting for this far off, ever moving point when I will feel like 'me' again. How do you come to terms with that? 

Thanks if you managed to get this far.

8 Replies

oldestnewest
  • Winged, 

    Welcome to our forum and sorry to hear that you feel so unwell.

    Your thyroid meds might not be alleviating symptoms due to many reasons such as nutrient//iron//hormone deficiencies or issues with the thyroid, pituitary, hypothalamus or adrenals glands which all work together in feedback loops. Your results look ok but it is difficult to say without the ranges (numbers in brackets) and the T3 result.. Many GP's don't test T3 so members use private labs - link below.

    People with thyroid issues often have vitamin deficiencies so ask your GP to test Vit B12, folate and ferritin as optimum levels are required for good thyroid hormone synthesis.

    Your GP has (probably) reduced your meds to keep your results within range regardless of how you are feeling. For your next test leave 24 hours between last dose and blood draw and have the blood drawn early in the morning whilst fasting (water only) as this is when TSH is highest. 

    It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements. 

    Many Hashi members have found a gluten free diet helps keep thyroid antibodies low, minimising the risk of damaging body inflammation & then thyroid meds not working.

    I hope you feel better soon.

    .

    Hypothyroidism 

    thyroiduk.org.uk/tuk/about_...

    .

    Hashimoto's Auto Immune Disease 

    thyroiduk.org.uk/tuk/about_...

    .

    The Gluten-Thyroid Connection

    chriskresser.com/the-gluten...

    .

    Private labs testing

    thyroiduk.org.uk/tuk/testin...

    .

    This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

    thyroiduk.org.uk/tuk/treatm...

  •  Vitamin D deficiency is associated with autoimmune thyroid disease (AITD), and has been shown to benefit autoimmune-mediated thyroid dysfunction.

    Vitamin D regulates insulin secretion and sensitivity and balances blood sugar. A vitamin D deficiency is associated with insulin resistance (which adversely affects thyroid physiology in several ways.)  

    Supplement D3 with K2 which improves the uptake of calcium to the bones. .. retest in 6 months. Take Vit D 4 hours away from levothyroxine .

    Vit D is fat soluble so needs to be taken with good fats - coconut oil or something similar - or eaten with your main meal of the day. 

    If you post your Vit D results complete with ranges (numbers in brackets) members will comment further.

    .

    Vit D deficiency

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

  • Hey radd. Your reply to winged has made me feel so much better. I've spent today panicked that I have some terminal illness. My GP said as my tsh was down to 1.21 any issues I was experiencing were down to something else being wrong with me. Further, as my tsh was were it shoukd be the labs will not test anything else like t4 - never mind t3.  I went for private tests and found my ferritin level was on the floor and my t4 and t3 are not at the right levels either. Went back and saw another GP yesterday armed with my private test results and she said I was too low but still made me give about a pint of blood today for everything under the sun to be tested because that's what the original GP had ordered and she wasn't going to disagree I felt.  I'd been saying for weeks that I was concerned my iron would be low as I dont eat meat or many other foods that are iron rich and maybe that was why i was feeling bad on the levo but noone listened. Until I took my woes to a private dr on the thyroiduk list. He told me straight away to halve my dose as I was feeling so crap on the levo and clearly wasnt coping with it and to start taking iron tablets pending the results of my blood test coming through. It's bad enough to have this black cloud for life but dealing with some folks just adds to the pain. I feel much better in myself on the lower dose and am hoping the answer is to get my ferritin levels up to enable me to cope with the higher levo dose that I clearly need. I realise I'm very fortunate to be able to pay for private help and even more fortunate to have found this forum of helpful people who helped enormously to educate me. Sorry long whinge but really just wanted to share and vent and say thank you xx

  • Oh god I feel for you ...the illness is awful ... The memory and brain fog was awful 4 weeks ago .. I was undermedicated , wouldn't be surprised if you are if they have lowered medication ... Hope these lovely people on here can help you as much as they have me since I joined recently ... If you want p message me I can't give you medical advice but can help you feel you not alone ... ...Made few other friends through this site who are suffering .... Cheers Chris ( message me on my profile if you want a chat x) 

  • Actually  radd said yr levels are ok ... They are better than mine were in march ... Their advise re vitamins etc is vital ... As I said only here like you for advice I don't know medical facts ... Do hope you ok xx

  • Hey winged. Sorry you are having such a hard time.  After paying for private tests I too discovered borderline vitamin d and started to take supplements. Did you also have your ferritin checked?  I'm convinced if you're ferritin isn't right you feel crap on the meds (interested  if anyone else has the same view). And if you can afford it try blue horizon for a private test. They offer different ones and you can find them on the thyroiduk site. Not sure this is entirely helpful but sometimes it helps I think to know others are feeling crap too as you often feel you are the only one xx

  • Olsbird, 

    You sound as if you are in good hands. It is not always beneficial to just keep adding more meds, but to address the cause of them not working as meds not utilised properly can have a reverse effect, preventing further meds from working (reverse T3). 

     Iron is a common mineral deficiency in hypothyroidism due to gut malabsorption issues (hypochlorhydria.) Anaemia symptoms can match those of hypothyroidism (achiness, fatigue, palpitations, brain fog, dizziness, etc).

    Addressing gut & liver issues will encourage thyroid meds to work better because T4 is converted in many tissues in the body but primarily the liver (kidneys) and gut. 

    The body needs iron for carrying oxygen throughout the body and to assist in digestion (enzymes). When iron levels are low it slows down the conversion of T4 to T3 (deiodinase activity) as requires iron containing enzyme thyroid peroxidase to produce the thyroid hormones. 

    Thyroid medication can bind to certain types of iron supplements making the thyroid medication less effective so it is best the best to space them four hours apart.

    I consider myself fortunate in being able to afford private help but above all finding this forum too. I hope you feel better soon.

  • Umm low iron can usually lead to high RT3 this is why you need your FT4-3 tested as well, IE you can have normal TSH FT4 and if your iron is low odds are your FT3 is lower than should be, hence its not getting into the cells as it should the other reason for low FT3 is adrenal issues. As for labs they are total fing Kers they are testing stuff they don't understand. T4 if it's FT4 at 18 if the range is 12-22 then it's ok, but again need to see FT3 levels. Vit D3 needs to be about 90 adrenals need zinc, iron, copper, thyroid needs b complex, selenium, Vit A and Magnesium too... Hope that helps with the other stuff mentioned... 

You may also like...