Anyone still feel ill with graves when thyroid levels 'normal'?

I'm euthyroid (I'll post levels when I get results tomorrow but 6 weeks ish ago I was in range). I still get waves of absolute exhaustion like nothing I've ever felt even when levels are ok. I'm irritable and horrible to live with. I think my partner is just about at the end of what he can take and I don't know what to do.

I'm waiting for surgery and a very kind member on here is giving me lots of advice and offered to help find a surgeon.

But I can't understand what is going on. After three weeks on carbimizole I was in range and have been for nearly a year on 5mg every other day. So why do I still have waves of symptoms?

I am worried about having surgery because I know ill have a new illness/battle. Hypo.

Why does this have to be so hard?!

Also does anyone know how I get a private blood test for iron etc? X

26 Replies

  • You can be in range and still feel awful. When my TSH was at 1.4 (0.5-5.5) T415.4 (10-19.8) I felt awful, when it got a bit more levo and got it down to 0.68(0.5-5.5) T416.90 (10-19.8) I felt fine. Don't think it has to be out by much either way for you to feel bad.

    You can get discount on private blood tests with BlueHorizon if you are a member if TUK.

    Sorry but I just can't figure out why it is all so blooming hard. Hope you feel better soon x

  • Thank you so much. I'm going to get some private bloods. I have some results coming tonight ill post. Fingers crossed they are actually out so my meds can be changed xx

  • Just got my results any ideas?

    TSH <0.05mIU/L RANGE 0.4-5.0

    FREE T4 12pmol/L 9-19

    FREE T3 6.1 pmol/L 2.6-5.7

    Now I'm concerned because my I had a couple of others flagged out of range. I'm very anxious at the mo and these were out. Any ideas if this could be thyroid related?

    RED BLOOD CELLS 5.14 range 3.8-4.8

    Mean Cell Hemoglobin 26.5 range 27-32

    I'm hoping that's nothing because the red blood is only slightly high. I am such a wimp I was shaking reading that result was off xx

  • Sorry I have no idea about results other than my own, apart from that I have never had a T3 test! I'm sure someone on here will know though or you could always start again with a new question purely about the results :-)

  • Sorry, just looked at questions and see that you have done just that - hope you hear something useful soon.

  • Yes I keep putting things in the wrong place on here so thought I'd do both xx

  • That's us Graves people - nothing to beat the 'belt and braces' approach to life :-)

  • Very true xx

  • I would say don't assume it's your thyroid that's making you still feel ill. The doctor has a duty to investigate your ongoing symptoms, just because you have one disease does not preclude you from having another. I remember a visit I once had to the doctor where she sat there and just repeated over and over again "it's your thyroid". Well it wasn't, but I had to do a lot of digging myself to find out what it was, without her help (and I refuse to see that particular doctor now).

    Imagine that you have a deep cut on each of your fingers. If you go to the doctor will they stitch up one of the cuts and send you home, still bleeding from the other 9 wounds? Of course not. But this is what they do with autoimmune thyroid disease. They focus on one thing only, unless they are particularly enlightened and concerned about why your thyroid might be going wrong in the first place.

    So the first thing you must do is ask your doctor for the basic vitamin and mineral tests - B12, folate, iron/ferritin, vit D, calcium. There are other things that can be low, like zinc, copper and magnesium.

    It is always worth getting a Coeliac Screen if you haven't already done so, and then even if the result is negative consider cutting out gluten anyway.

    It is worth getting your adrenals checked. You can probably get a 9am fasting cortisol test from the GP. It's not the best test for diagnosis but is a starting point. Should be between 500-700 at that time of day.

    There are probably loads more things you could get tested but I can't think of them right now! The above is a good place to start.

    Finally, but most importantly, get a copy of all your results; past, present and future. Your TFT's might be in the normal range, but that's not necessarily normal for you. Is there a particular reason why you need the surgery rather than staying on ATD's?


  • Hello thank you for such a great reply.

    I have asked the Dr if this could be something else but he is saying based on general bloods and symptoms it is thyroid related. I'm kind of hoping they are right. I am going to have the other tests you mention as soon as possible.

    My partner is collecting my latest results tonight as the endo takes weeks and weeks to write, ill post them on here in the hope that someone will do his job before they are out of date anyway :)

    From the second I walked in his office this time with graves he said I need surgery and ASAP. Because I've already had a partial thyroidectomy and my goitre is huge he says I will relapse again. I wanted to wait because I am still bf'ing and I believe my thyroid hasn't had a chance to recover from having my baby etc but he said there is no chance this will get better.

    I've felt ill for a year now on thyroid meds and as its having such a massive effect on my quality of life I also feel surgery is the only answer. I really wanted to avoid it but I went straight into remission after my subtotal and it would be nice if that happened again. If I could feel well on meds I would live with the goitre. Thanks again

  • Hi

    Graves disease is an AUTOIMMUNE disease so the victim not the problem is your thyroid. Also INFLAMMATION will be causing 70% of your symptoms regardless of your blood tests. What are you TRABs? Tracking your antibodies will tell how active the attack on your thyroid is. Also if your TSH has risen on CBZ then that's an indication you are overmedicated. I had Graves, Hashis and Hashitoxicosis and I was cycling through T3 spikes every four hours despite being hammered into the ground with CBZ. Blood test didn't mean a damn thing.

    I would suggest caution with TT - why are you having surgery? I've had a TT and I've never been the same and even without your thyroid you will still have Graves disease.

    Selenium, going gluten free, L carnitine, etc can all help tamp down the autoimmune response.

    Surgery should be a very, very last resort .... in my opinion. If you can save your thyroid then that would be better.


  • Hi Rebecca thank you.

    I am getting some results tonight but I'm not even sure if he's still testing antibodies. If not ill ask my dr tomorrow what's going on.

    I had a 95% thyroidectomy 15 yrs ago and was symptom free for all those years. Then I had a baby and my graves' came back. That was a year ago.

    My thyroid function was in range within weeks of being on carb but I only ever seem symptom free for a few weeks as then it comes back and then goes and so on.

    I desperately want to avoid surgery because repeat surgery carries a higher risk. I have lots of scar tissue from my last op around my vocal chords. But I'm irritable and miserable and tired all the time so if surgery could fix it then I would do it.

    I'm so confused what my next step is. I guess I'll get these results and then look at the previous antibodies to see if they are coming down. My endo hasn even mentioned that because he is so set on surgery. Thank you again

  • Thanks for the gluten tip. I just ordered some l carnitine as I'm vegan so I wonder if this is a problem. I'm sure it's from meat. Interesting. I'm wondering about doing a juice detox x

  • Wiggy29 if you're a vegan, and if you've been vegan for long time, you should push to get your B12 tested, as it's only found in animal products. Lots more info on B12 deficiency here:

    That aside, a low MCH usually indicates iron anaemia, so a really good idea of get all the previously mentioned vits and minerals tested if you can.

    H x

  • I also wonder does the inflammation ever go, my endo says this goitre will never go without surgery. Is that the same? Sorry to bombard you with questions but I've not had anyone to talk to properly for a whole about this lol :)

  • I would be reading the speech Dr Peatfield gave on iodine and goitres and over active thyroid before consenting to surgury

  • Thank you i'll check that out tonight. I can't believe the advice I've had on here today. Why is it only my endo that won't discuss treatment?!

  • Hi

    Re inflammation I don't know but yes I think it gets better. Your system is on high alert and is attacking itself. Leaky gut seems to be the cause so sorting out your gut and diet will help a lot. I've read about iodine and goiter - there is a whole protocol but it's controversial so in your shoes I'd be looking to do an iodine loading test from Hakala labs and doing your homework but might be worth posting on the facebook page. Proceed with caution though as opinion is split. See: Elaine Moore takes a different view though I think.

    Also might be worth checking in with the yahoo! Thyroidless group, they see a lot of people like you. Provided you are under control now I wouldn't rush and try to just look after yourself.


  • Just got my results any ideas?

    TSH <0.05mIU/L RANGE 0.4-5.0

    FREE T4 12pmol/L 9-19

    FREE T3 6.1 pmol/L 2.6-5.7

    Now I'm concerned because my I had a couple of others flagged out of range. I'm very anxious at the mo and these were out. Any ideas if this could be thyroid related?

    RED BLOOD CELLS 5.14 range 3.8-4.8

    Mean Cell Hemoglobin 26.5 range 27-32

    I'm hoping that's nothing because the red blood is only slightly high. I am such a wimp I was shaking reading that result was off xx

  • I found that coriander leaf sprinkled on salads and food has cured my leaky gut very fast

    turmeric seems to be good at fighting inflamation

  • Hi there

    They aren't too bad at all. You have Graves so you will be positive for TRABs - these are TSH receptor antibodies so they block the TSH receptors so you always have zero TSH with Graves, so we can scrub that one. T4 is a little low but in normal range, I'd be feeling a bit off with it that low but we are all different and your T3 is only a tiny bit over range, lots of people feel fine there. Have you had an iron panel done, vit D, B12 etc. If you are anaemic that'll make you feel crap. Your body, with Graves, is running too fast so you are not digesting nutrients from food properly and you are using up your stores faster so good nutrition is important. But ideally we need to know where your antibodies are - like I said, even if your bloods are 'normal' the inflammation in your thyroid can make you feel terrible. Have they given you betablockers? They slow down T4 to T3 conversion and can help with anxiety. Lemonbalm can help too - you can get that in a health food shop and also get lemonbalm tea. Lots of relaxation, epsom salt baths, rest etc as much as you can.

    How much CBZ are you on?



  • Thanks Rebecca, Im on 5mg Carbimizole every other day and 10mg propranolol daily.

    I can't understand why he isn't testing the antibodies anymore. Last time I asked he said he's referred me for surgery so it isn't necessary. But the surgeon doesn't want to operate..

    I'm going to see my GP tomorrow to get an iron panel done.

    The thing I don't understand is I feel more tired now than a year ago when I was unmedicated, three stone lighter from hyper and heart rate at 140 constantly.

    I'm so exhausted I was really hoping the answer was in these results :(

    Maybe it's just all getting on top of me, as you say my body isn't running right? Thanks for the great info it really helps x

  • Wiggy

    the entire time my husband was on carbimazole he was crap

    it was in the 1970s and there was no internet

    if i had known then what i know now i would have given him iodine or kelp and he sure as heck would never have had the thyroidectomy

    he has been through the entire gamut of every part of graves and hashis and been really ill on thyroxine and t3 and is only really well on Armour at age 72

    here we are in 2013 and our daughter has hashis and is not well on thyroxine or t3

    one grandaughter at age 9 was told its me /cfs and a year later its hashimotos and thankfully is great on thyroxine

    yet our other grandaughter age 18 is so ill with hashimotos and constantly falling ferritin that neither thyroxine or t3 helps so we are all different and deserve far better trestment

  • I'm sorry to hear your family have had such a bad time, I worry so much about my daughter having this battle.

    I've read I should avoid iodine with graves so I guess I need to do some more research on that. It really is the pits the way thyroid disease is managed.

    I would love to avoid this op but I can't imagine feeling much worse tbh x

  • Look at the talk given by Dr Peatfield on iodine if you cant find it i will copy and paste it for you

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