Does anyone here have experience of De Quervain's Thyroiditis/Sub-Acute Thyroiditis/Self-Resolving Thyroiditis?

The original Private Endo I went to ran with this diagnosis (after I asked her about it?....in a long list of other prepared questions?) Now I am in the Public system and the Endo has had me on 'wait and see' for 8 months now based on this diagnosis. I found a GP/Herbalist who prescribed NDT but I have never fully improved. (I think that it is my iron and cortisol holding me back which I am working on and about to retest).

I am up against that old chestnut of Consultants seeing my TSH of 0.02 and pronouncing me "Hyper/overmedicated" and that I need to give up the NDT. Sometimes I start wondering are they right???

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  • Sorry you had no replies - it may be that your Question was missed, or that no one with relevant knowledge has spotted it yet... hopefully someone helpful will pick it up from Latest activity....

    L

    x

  • Only one way to find out if you're over replaced, cut your dose by 1/4 or 1/2 grain and note improvements &/or deterioration in your symptoms.

    If you have improved your iron and cortisol this could have improved your absorption of NDT and mean that you are a little over replaced.

    TSH is suppressed by the T3 in NDT and I presume your endo will have taken that into account.

    Blue Horizon do private home testing if you want to test FT4 and FT3. They're on the main TUK site (use TUK10 for discount).

  • Hi Clutter-I had the conversation about suppressed TSH with my Endo but he doesn't believe it. I have found it impossible to find a good Endo here in Ireland so far.

  • I was diagnosed with sub-acute thyroiditis 5 years ago but I'm afraid I can't be of much help as I'm still struggling.

    My experience has been that I was never able to tolerate levothyroxine or any other thyroid medication, including NDT and T3 alone, and I finally abandoned all medication. Over the years my own thyroid function has recovered somewhat, but my T, T3 and TSH have not returned to pre-thyroiditis levels.

    What I found most helpful was getting my levels of B12, D3, Ferritin, Folates and Zinc up to the optimal. I am currently working on magnesium levels, but haven't been able to get them tested so am working in the dark a bit here.

    I think the "wait and see" approach is probably pretty much all that can be done until it becomes clear whether or not your thyroid function returns.

    Do get in touch if you have any other questions, and I'll do my best to answer.

    Sue

    x

  • Hi Sue-I'm wondering how they diagnosed you with sub-acute Thyroiditis? Di x

  • I had a sore and slightly swollen throat that was painful to the touch and it went on for weeks without improving. I was tested for thyroid antibodies and the results were positive, though to be honest I really don't know why they concluded that it was sub-acute as opposed to Hashimoto's. I'm seeing another endo in a few weeks, so will add that to my list of questions.

    S

  • My thyroid was very painful too with difficulty swallowing and I was very Hyper. I then went Hypo which I have been ever since. I also had a RAIU (Radioactive Iodine Uptake assessment) which showed low uptake.......all these fit with the Sub Acute picture. They often seem to call it Self-resolving Thyroiditis but a year later I am also still struggling. The original Endo said that there were three possibilities 1) Hashimotos (but I have never shown any antibodies), 2) Sub-Acute/Self Resolving (where I should be bettter within about 4-6 months) or 3) A nodule that is playing up-pushing out more thyroid hormones then less, etc (I do have 3 nodules-one of which is apparently a "hot" nodule). I find it all very confusing and would love to feel better.

  • Yes, I had the hyper to hypo experience too, but you seem to have been given, or found out for yourself, more information than me. I was never given RAIU, nor was it ever mentioned. No nodules as far as I know - just told it was sub-acute, and that I should persevere with the thyroxine.

    When it became clear to me that the thyroxine was making me more ill I was more or less written off by my GP, who had nothing else to suggest.

    This site has been a godsend - I would have slipped into a real pit of despair without it.

    S

  • Me too Sue-Patient Advocacy sites are fantastic and totally necessary for support, reassurance and information.

  • Thanks Louise, Clutter and Sue for your replies x

  • Only just seen as this as a result of a google search. I had subacute last Spring. Had the the hyper phase then went through to underactive. Have managed to get my tsh down to 2.5 and have recently have thyroxine upped to 75mcg from 50 but still struggling to get through a normal working week a year later. Have been tested for carpal tunnel which has come back negative, spend a good hour every morning coughing and generally not quite with it. Antibodies negative and haven't had any scans. Currently waiting on a test result after 6/7 weeks of higher dose. I know it's supposedly transient and self limiting but it really does leave you on your ass...without wanting to put too fine a point on it!

  • I can't work out how they can diagnose it or how they can say that it is transient-the sicker I feel (14months now) the less faith I have in Doctors knowledge or interest in helping me get well. If you are still struggling through a working week and I'm still off work with extreme fatigue.....that is NOT transient!!!

  • It's really frustrating. Mine was diagnosed on the basis that I'd had a bad bout of flu, very sore throat, swinging thyroid blood results and an absence of antibodies. I'm confident with the diagnosis but the treatment afterwards is a bit of a delicate balance. I'm sorry I can't be of any more help. My tsh hasn't been near your level for a year. If I had fatigue with a tsh of 0.02 I would be tempted to stop the meds but I suspect that the nodules complicate things....

  • Hi mmu83

    I tried an experiment of cutting the Meds by about 1/4 and I very quickly went more hypo-more fatigued, added a couple of pounds in weight and my skin went extremely dry. This proved to me that I need them. The complicating factor now is that I also have adrenal exhaustion as proved by a 24 hr saliva test. I am looking into how to support my adrenals and Thyroid.

  • Ah I see. Way out of my depth but hope you get to the bottom of things soon :)

  • Thanks-hope you get back to full health soon too

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