Will I ever feel 'normal' again?

Morning everyone

I was diagnosed with hashis 18 months ago with a TSH of 136. Over the next year my levo was increased until I was on 150mcg with results in range but still feeling awful.

A private endo added T3 to my T4 6 months ago and I initially felt greatly improved. The addition of T3 has meant that my muscle aches and pains have gone and my hairloss has decreased. However, I do still lose my hair than I did before diagnosis, am still constantly shattered, have brain fog (less but still there) and am still massively overweight.

My last results on 30mcg T3 and 100mcg Levo were:

TSH <0.010 (0.270-4.200)

T4 13.30 (12-22)

T3 4.5 (3.1-6.8)

My Endo suggested I increase to 60mcg T3 with the 100mcg Levo and I have slowly done this. I take 20mcg T3 three times a day. I supplement all of the vitamins recommended on here and have increased my folate, ferritin, B12 and Vit D levels over time (never high but better than the were 18 months ago).

The thing is, it's always the same with me - I increase the dose of Levo or T3 and initially feel better. Then after a few weeks I feel awful again. I am seriously thinking about trying NDT but I guess what I am asking is, am I expecting too much? Is it possible to ever feel like the person I was before my diagnosis? Or will I always feel the effects of having hashis, even if I were optimally medicated (whatever that means!)

Does anyone feel well?

15 Replies

  • Others will comment on the test results. But just to say that I was talking to a friend this week who told me that it took two years before she felt better. I think we all underestimate when we set off on this how long it takes. Her brain fog went on desiccated thyroid. She feels good now, and once her thyroid was under control she did the 5/7 (is it called?) diet and lost the weight. Her TSH was 60 when diagnosed, but Hashi's seemed to come on her quickly - she had no hair loss, and the ferritin was good from the start. The longer the disease goes untreated, perhaps the longer it takes.

    Your endo sounds good.

    You don't mention your serum ferritin level. ??

  • Thanks for your reply. You are right that it probably does take time. I am terrible for feeling guilty about being unwell. It feels like I should be able to fight it and because it's invisible, I almost feel like a fraud! Silly, I know.

    My ferritin was 48 when it was last tested but I am due another test soon. I was anemic 18 months ago so it has improved and I am still taking iron.

    Thanks again.

  • OK, well the iron will be a large part of your feeling unwell then. The brain has a very efficient barrier to what's in the blood, and serum iron reaches it last, I read.

    You should improve as it gradually rises.

    I think many, if not most of us, feel the same, and are encouraged to feel the same, that we are to blame - that is why a diagnosis is such a help. The signs of hypothyroidism all signal to others that we are not making an effort - if only we ate less and moved more, they secretly think. Or not so secretly. Every time he watches television my husband remarks loudly at appropriate characters: "She's so fat!"

    It's very hard to resist a continual feeling of failure, at getting so little done in a day, of making memory slips (my son says: "It's your dementia - you're getting dementia like your mother....") I have unopened letters in the hall all the time because I have very little ability to cope with stress and I put them off till the days when I feel strong. That is so different from the person I used to be.

    But on this forum, and perhaps only on forums like this, almost everyone understands the disease, and with each piece of new understanding of its massive impact you will blame yourself less.

  • I'm sorry you are still suffering and it is true that we cannot cope with stress in the same way even when optimally dosed. Of course we can cope much better than with too little hormones in our body. I'm sorry your family are making comments which hurt and we do have to ignore as you're doing. In fact I think they 'think' that they are encouraging us in some way. Men's brains don't quite work in the same way as female ones. :)

  • Thanks for your reply. It helped me to get some perspective. I am sorry you are suffering too but you are right that the understanding of yourself and others in this forum does help when it feels like the people around us don't get it.

    It is hard to accept we can't cope as we used to and I feel I don't recognise myself sometimes. Hopefully we will get ourselves back at some point or maybe find our new selves easier to accept?

    Wishing you well...

  • It has taken years for your TSH to rise to 136 so it stands to reason that it will be a slower progress than we would like to get back to feeling normal/healthy.

    That's why the thyroid hormones are increased gradually with a blood test and increase about every six weeks till we feel much better. Beware of the doctor halting increases because your TSH is 'somewhere' in range. We feel much better with a low or suppressed TSH, i.e. around 1 or lower.

    Always get a copy of your blood test results with the ranges as you've done above. Have the earliest appointment and fast (you can drink water) and leave about 24 hours between levo or other thyroid hormones and the test and take them afterwards. If GP hasn't taken Vitamin B12, Vit D, iron, ferritin and folate ask for these to be done next time. We are usually deficient.

  • Thanks Shaws. I do need to be more patient with myself I know. 18 months feels like a long time but it isn't in the scheme of things. Hopefully I will get there in the end.

  • I'll tell you the same I try to tell myself... Be kind to yourself... You probably went a long time untreated so it will take you a long time to get better... And not matter what anyone say, we have a disease... This week I had an awful app with an endo, and I then doubt myself, but I have proof of everything. I walk in average 70k a week, 3 spinning classes and 4 yoga classes I got the print outs of my attendance at the gym and the print out of my fitbit so its all proved and still endo said you are obese because obviously you eat more than you spend!!! So no matter how much you eat, or what activity you do our body doesn't follow rules... And even our family wont understand. Something that works for me is a mindfulness meditation and one of them is to close your eyes put your hand ovr your heart and say aloud to yourself "it's all right sweetheart, its allright seetheart"....

  • Its so frustrating isn't it?! Especially when even the so-called expects don't understand!

    Thank you for your reply and I will try to be kinder to myself - and more patient!

    Wishing you well....

  • Kel8, it is perfectly normal to feel well after an increase for a short time, and then the symptoms come creeping back. It's not just you, most people find that. It just means that whilst your body appreciated the increase, it now realises it wasn't quite enough and you need another increase. That's all. Nothing your doing wrong or is wrong with you. Your FT3 is still quite low. Another increase would not be out of order. Ignore the TSH, it means nothing at this stage of the game, it's the FT3 that is important. :)

  • That makes sense! I guess it shows I haven't got the right dosage yet. I am glad its not just me (although I clearly don't want anyone to feel rubbish!!) as I was starting to feel like it might be!

    Thank you so much for the reassurance :-)

  • You're welcome. :)

  • IMHO you are not able totolerate synthetic t4 and t3 and like my husband , daughter and 3 out of 4 granddaughters would be far better on NDT

    There must be a specific gene involved in all those who are not well on levo or t3 but no one is prepared to recognise that let alone research it

  • I have been wondering this so an going to ask my Endo about NDT when I see him next at the start of Jan. I know from reading posts on here that most people have to go it alone with NDT so I will be willing to do that too if I have to. I will see if this latest T3 increase makes a difference but if not that's my next step.

    Thank you :-)

  • unless your endo is only 1 of just 2 I know will prescribe NDT you are likely to be like many others ...........on your own

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