I have always been told that it is likely that my hypothyroidism was caused by taking lithium for several years. I maintain I was borderline hypothyroid long before that and that this was the cause of my mental health problems in the first place. As a result of their thinking, I was told I didn't need antibodies testing last time I asked. I was also told "the treatment's the same anyway so it doesn't matter".

The last few days have led me to wonder whether I actually have hashimoto's. A couple of years ago it was suspected I had RA and/or lupus but the tests came back negative. My GP at the time was half decent and said that we should check every year as negative results don't mean that I don't have one or more autoimmune conditions (yet they won't test thyroid antibodies - some peoples' logic leaves a lot to be desired).

Anyway, to cut a long (and rather boring) story short, I have had a sudden flare up of joint pain/inflammation which has coincided with extreme tiredness and appalling eczema. I also have a lump in my throat which I didn't realise had gone until it just came back. My voice is also a little more hoarse than usual and my eyes are dry and slightly sore.

I have been feeling so much better since switching to NDT, and I think I am still feeling a lot better than I was on levo in many ways, but this is a very sudden change that is quite different from the usual dip after an increase in NDT.

I would appreciate any feedback from anyone who knows about this sort of thing. I will ask again for thyroid antibodies next time I see my GP but I'm sure I will be told the tests are unnecessary :(

Sorry for the long essay and thanks for any insight you can provide :)

Carolyn x

22 Replies

  • If I were you, I would read this:


    Even a relatively cursory read through would be worth it. (Don't do so when you go to bed - you'll fall asleep in seconds. :-) )

    My take is that, aside from any direct thyroid issues, you should be tested because of the associated conditions.

    Hashimoto’s thyroiditis and hypothyroidism are associated with Addison’s disease, diabetes mellitus, hypogonadism, hypopara-thyroidism, and pernicious anemia. Such combinations are described as the polyglandular failure syndrome. Two forms of polyglandular autoimmunity have been recognized(47). In the Type I syndrome patients have hypoparathyroidism, muco-cutaneous candidiasis, Addison’s disease, and occasionally hypothyroidism. Type II, more frequent, often includes familial associations of diabetes mellitus, hypothyroidism, hypoadrenalism, and occasionally gonadal or pituitary failure. In these syndromes, antibodies reacting with the affected end organs are characteristically present. Vitiligo, hives, and alopecia are associated with thyroiditis. There is also a clear association with primary and secondary Sjogren’s syndrome(48). Some patients appear to start with Hashimoto’s thyroiditis, and progress with time to the picture of Riedel’s thyroiditis including the frequently-associated retroperitoneal fibrosis(49).

    Musculoskeletal symptoms, including chest pain, fibrositis, and rheumatoid arthritis, occur in one-quarter of patients(50), and of course, any of the musculoskeletal symptoms of hypothyroidism may likewise occur.


  • Thank you :) I shall have a good read of that when I get home from work. I think I ticked most of the things listed. I'd better start saving to see a private endo.

    C xxx

  • You could always get a private test! Go to the main Thyroid UK site... :-)

    In case anyone is interested, the test below looks to be quite appropriate,can be done from home, and, as these things go, not too, too expensive:

    Thyroid Profile Advanced home blood test


    £118.75 / unit(s)


    (Not sure if that link will work.)

    There is a cheaper one that omits the hormone tests.


  • I don't have the funds at the moment (expensive car repairs!) but it is definitely something to consider at some point, along with the adrenal test.

  • It was as much for anyone else, to be honest. I know you know where to look.

    Hope the funds don't stay low for too long.

  • Me too :D I love my job but the pay is pants! But in what other job do you get "a hamster running in it's wheel to generate electricity" given as a suggestion of a sustainable power source for lighting an eco-garden!!! Apparently they were planning on giving the poor creature regular breaks. Half of me wanted to scream whilst teaching that lesson today but the other half wanted to laugh aloud :D

  • Well the government think that watt-hours of electricity produced by solar panels are worth far more than from any other source. And will be enough to make a real difference... :-)

  • I'm a little confused. I thought a watt-hour is a watt-hour regardless of the source. I am probably misinterpreting what you have said :)

    It would be good if technology became such that solar power really was a viable option for most of our power. I'd have solar panels on our roof if we could afford it. The trouble is that they need replacing not long after they've paid for themselves which puts some people off, but if the government like the idea perhaps they'll bring back the grants or make them more appealing.

  • You are, of course, right!

    It is the government willing to pay (with our money, of course) a fortune for electricity generated by solar panels. Like around 40 pence per unit! A fair payment (i.e. something similar to other sources) might be arguable.

  • Hi Rod

    Have you done this test yourself? Are they reliable?


  • No - I have not done any private tests.

    I did not have elevated anti-bodies when tested by NHS and do not feel my issues are autoimmune in origin. I really do think that for me TSH is almost acceptable. I would prefer to know my FT4 but cannot see it being much real value to me so do not pay for it.

    Someone I know has had some tests done but I cannot now remember which company.

    I have no doubt that Blue Horizon's home blood test arm is a perfectly respectable company and the tests are performed in a good lab. I have no reason to think that home tests are less reliable than those done in other places - if a finger prick blood sample is insufficient, they will not offer the test.


  • Ok. Thank you for your reply Rod


  • Have you had a scan? I asked my GP for TPO Ab test & got it (but ignored of course!)

    Sorry you're feeling rough sweetie - you're supposed to be fine on NDT! it must be due to working in a school like me - avoid nasty infected kids! ((hugs)) Jane x

  • I've not had a scan. Again, it seems there was no need (according to "experts").

    Hugs back :)

    Carolyn x

  • ....It really is quite amazing that when we are told that Auto-immune thyroid illness - or Hashimotos - is the most common form of thyroid illness affecting the world. Then I do not understand the thinking that prevails that testing anti-bodies is not required. Either when the TSH is normal or otherwise. Maybe worth asking the straight question of your GP - ' if Hashimotos is the most common of thyroid illness then why are you so reluctant to test for the anti-bodies.......? '

    If you can pop across to Crete we can have all of the anti-bodies tested down the road in the next village. When I was first tested here in 2005 everything was on the list including 3 lots of anti-bodies. This was followed up by a scan which revealed nodes and so the diagnosis was made - Hashimotos. I also have Crohns and Fibromyalgia.

    Scans here are routine for the thyroid for the complete diagnosis. BTW all of my Thyroid TFT's were within range but still treatment commenced. I have always been on a low dose of T4 - at the most 75mcg - and am now just on T3. The thinking here is that the thyroid just needs to be supported when it's auto-immune - which in a way does make a little sense. I seemed unable to increase the dose and conversion was poor. Again that seems to happen with Hashimotos.

    When I added the TSH test to hubby's annual PSA check in 2011 it came back within range but high. Had the full profile done and yes the anti-bodies were high....and the FT4 and FT3 below the range. Poor man he must have been feeling awful but at 72 had put it down to getting older. He is just fine on 50mcg and occasionally takes 75 when he remembers ! Sorry I digress - it must be my thyroid !!

    Am sorry you are having a struggle at the moment - maybe just a blip. Have you changed your diet ? Do hope you feel better soon........ x

  • Thanks :) I haven't changed my diet but perhaps that is something to look at. There seems to be no logic to the decisions made by doctors regarding thyroid disease!

  • Carolyn, I have witnessed the fact that untreated or under treated low thyroid can cause mental health problems. I would suggest TPO AB and Tg AB if you have never had them done. At the very least it will give you a baseline for future reference. PR

  • My GP won't test. I am going to change GP so perhaps he might test, otherwise I am going to have to save my pennies. It will be well worth it.

    Carolyn x

  • Hi Carolyn. some of what you say could also relate to Crohn`s disease.,or diabetes, as I am sure you know both are likely with Hashi,The excess tiredness can often be the first sign of diabetes, ( hormonal and autoimmune) . Even now when, my treated diabetes is bad, I just cannot keep awake, I am underweight incidentally, it does not need to be related to weight."Funny" feet is another symptom. The Crohn`s often does not show with the blood test either My endo recently had a paper published in the BMJ on that very subject..It also sounds as if you need another ultra sound, my voice and swallowing was bad for a long time, then got much worse, enlarged thyroid and nodules. As you know they are so common. It is normally followed by a biopsy , routine, but I cannot have one Every one has great difficult hearing me and as I am fairly deaf, great fun!!

    I hope that also gives you some ideas.


  • Thanks Jackie. That does make sense. I really need to persuade my GP to refer me to get some of these tests!

  • Sorry Carolyn, Fuzzy brain! i meant Caeliac disease.


  • Hi Carolyn,

    Reading Dr. Nathan's book "On Hope and Healing" was a revelation to Caroline and myself in that he goes into some detail of what might be going on in the body either behind, alongside or because of thyroid problems, and I really feel this may be a major breakthrough for thyroid patients (Caroline for starters I hope!).

    I hope you are not overdoing things (sorry, that sounds patronising, but you know what I mean), as that can really bring back symptoms with a vengeance.

    Hope you can have a restful weekend. Jane x x

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