Daughter feels rubbish

My 17 year old daughter has hashimotos and had a total thyroidectomy at the beginning of this year as her thyroid was so full of cysts that she couldn't swallow properly and was short of breath with little exertion. She did feel much better post op but now complains of feeling unwell again. Latest blood results:

T4 21

T3 5.6

Calcium normal

What else should she be asking to be checked??

Many thanks, D

25 Replies

  • Do you have ranges for those results? The figures on their own are meaningless. What is she taking, and how much? Has she had her vit D, vit B12, folate and ferritin tested? :)

  • Hi greygoose, thanks for the reply

    T4 21

    (10 to 24)

    T3 5.6

    (4 to 8.3)

    I don't think she has been tested for vit D, vit B12, folate and ferritin, would these cause symptoms? Sorry if that's obvious.

  • OK, so she's not converting very well, so her FT3 is below mid-range. That's probably one of the reasons she's not feeling good. It's too low.

    Hashi's people often don't convert very well - but doctors don't know that. But it could be that she has nutritional deficiencies - hence the tests for vit D, etc. They all need to be optimal - not just 'in range' for the body to be able to use the hormone it's being given. Plus, yes, low nutrients will cause symptoms of their own. So, really, really important to get those tested.

    For the low FT3, you could ask the doctor to add some T3 to her levo. But the chances of him doing that are pretty low. So, she might have to buy her own. However, one step at a time, discuss that when she's had the other tests done. :)

  • On internet, same as me in France.

  • Post a new question, asking people to PM you with tried and trusted sources. It is not allowed to post them on the open forum. :)

  • HB,

    We can be symptomatic even with "normal" results.

    Get her Vit D, Vit B12, folate and ferritin checked as low levels can impair good thyroid hormone synthesis.

    Also any gut issues developing ? ? Low thyroid hormone can induce low gastric acid, followed by a myriad of unpleasant issues.


    Vit D & Hashi



    Iron & Hashi



  • Hi, she often complains of having 'the runs' and looking at her I'd say she's lost weight (she's probably underweight anyway being 5'6" and a dress size 8)

  • Thanks all, I'll suggest she asks for these to be tested :-)

  • This is a paper which might be complicated for us non-medical but this extract informs us that our FT3 should be at the level it was previous to thyroidectomy (I wonder if it was done). In any even I should think her FT3 should be towards the upper end of the range for her to feel good. I have a thyroid gland but I am best when I take T3 only rather than levothyroxine which made me more unwell than before being diagnosed as hypo. (I assume L-T4 is the combination of liothyronine(T3) and T4 (levothyroxine).

    In conclusion, this study showed that moderate TSH-

    suppressive doses of

    L-T 4 were required for postoperative athyreotic patients to achieve their preoperative native serum FT

    3 levels. They must take L

    -T 4 for the remainder of their lives. Therefore, even if thyroidal dysfunction may be subtle, its long-term effects cannot be over- looked. The question arises as to which of two patient groups is in euthyroid condition: those with normal serum TSH levels and mildly low FT

    3 or those with serum FT

    3 levels equivalent to their preoperative native serum FT

    3 levels and mildly suppressed TSH.

    An animal study has shown that

    L-T4 alone administered to thyroidectomized rats at doses to normalize plasma TSH levels does not normalize T

    3 contents in some tissues


    Prospective, properly designed studies

    including well-being or a metabolic marker such as

    lipid or bone are needed to clarify the best method of

    managing thyroid function in postoperative athyreotic



  • Wow that is complicated! Thanks for the reply... unfortunately her first ever blood test was out of range so we will never know what her normal is, but whatever her results are now, they aren't right for her. She has lost faith in her consultant, I wonder if we can see someone else??

  • Important to get the nutrient levels correct first. Vitamin D, B12, folate and ferratin need to be at good (not just average) levels for thyroxine to work.

    Also simultaneous test for Vit D, parathyroid hormone (PTH) and calcium will check that no parathyroid issues going on. Parathyroids can be damaged during thyroidectomy. This is an expensive test...I don't expect they will agree to it.

    Also even though she has had thyroid removed (due to Hashimoto's) she may well find adopting 100% gluten free diet may still improve symptoms.

  • Hi, thanks SlowDragon

    They tested parathyroid after surgery, which was done privately... all ok from that perspective. She has tried gluten free but not 100% as she's been having a few cheats! The private hospital have signed her off as they are happy that her results are within range so we are now back to the NHS. Would NHS test vitamin levels normally?

  • I doubt it! But no harm in asking

    Many of us have given up that battle and use Blue Horizon - Thyroid plus eleven test


    Gluten free....only works if you are 100% - totally strict ...sorry!

    I threw out all my gluten foods and replaced with GFree versions. There's lots of good options - M&S do excellent bread. Most supermarkets have good GFree sections. Need to watch out for soy (has wheat in) and any products with malt vinegar (ketchup, pickles etc) - but you can find GFree versions. Coeliac society have lots of info.

    Good excuse to try some new baking - lots of interesting GFree recipe books

  • I do love baking!

    Thanks... I'm looking into the Blue Horizon options and have sent them a message. When they send the packs out, do you take that somewhere to get the sample taken? Sorry if that should be obvious :-)

  • HumanBean11, from Blue horizon some are finger prick tests you can do at home. Others you need to find a place willing to do the blood draw. I phoned around all the places I get my NHS blood draw, and found in my area they will do it for free - I think in others they charge.

    By trial and errorI found some centers only accept one of the needle technologies, so they can turn me away if my kit is the wrong kind. I found out one clinic on the other end of town uses both kinds.

  • Also she could have genetic probs with conversion.http://www.thyroiduk.org.uk/tuk/testing/DIO2_test.html

  • Interesting... my thyroid function is borderline and my sisters daughter is underactive, diagnosed at 6 weeks. I will certainly read more about this, thanks Aspmama

  • After my thyroidectomy only NDT really helped - even once my blood levels looked optimal. But I would try T4 + T3 first, as at least there is as chance to get it on the NHS.

  • Hi SilverAvocado

    Do you mean by T4 and T3, that she should be taking something in addition to levo?


  • HumanBean11, sorry, I mistook you for a forum regular so thought you would know!

    T4 is the hormone inLevothyroxine. It's the storage form, and is the main thing a healthy thyroid makes. This goes out in the blood stream to all your organs and cells, and along the way gets converted to T3. This is the active hormone that the body actually uses. A healthy thyroid makes a small amount of this.

    Often whenwe're ill, part of the problem is that the whole body doesn't do this conversion process as well as you'd hope. There may be feedback loops like that you need T3 in order to make T3.

    The fact that your daughter has pretty high freeT4, but low freeT3 suggests she has this problem. The freeT3 is the most important of the thyroid measures. You want it to be in the top third of the range, and hopefully when you get it there, she will feel well.

    The clear solution to this is that T3 can be taken as a tablet. Add a small amount of it, say 20mcg and reduce the Levo a little, say 80mcg (T3 is stronger than Levo by 4x ish. No one knows exactly how much).

    It can be difficult to get this from doctors, you will almost certainly need an endocrinologist. It is also possible to buy it yourself and self-treat. The medicine I was talking about is natural dessicated thyroid. It comes from actual pig thyroid. Some ppl find it better for them.

  • Oh I see, thanks for clearing that up... Yes, we're pretty new to all of this and it was pretty quick from diagnosis to surgery. What you say makes complete sense and it does sound like her. I have posted a new message asking for recommendations for an endocrinologist in our area as she has lost faith in the one she currently sees.

    Thank you so much, that's been really helpful! I'll let you all know how she gets on at the GP tonight

  • Hi SilverAvocado ,

    Humanbean11 and me (humanbean) are not the same person. :)

  • Haha, I figured it out eventually :)

  • After thyroidectomy many find thst only NDT helps

  • Hi ReallyFedUp , do you buy that online?

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