Subacute thyroiditis experiences: Hello everyone... - Thyroid UK

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Subacute thyroiditis experiences

roukounasGK profile image
22 Replies

Hello everyone!

I was recently diagnosed with subacute thyroiditis (de quervain) and I was wondering if anyone else here has any personal experience from it?

How long did it take for you for the swelling and pain to go down?

How long did it take until the palpitations were gone? Especially the palpitations are driving me crazy.

We're you on any medication for it or did you wait until I it went away?

Any feedback from someone who has gotten past de quervain would be greatly appreciated.

Thanx a lot in advance people!

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roukounasGK
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22 Replies
SlowDragon profile image
SlowDragonAdministrator

Can you add your blood test results and ranges

Did GP or endo diagnose this as De Quervain?

Has Hashimoto's been tested for and ruled out?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

roukounasGK profile image
roukounasGK in reply to SlowDragon

Thank you for your answers and details @SlowDragon!

Yes my GP has confirmed it, based on the symptoms mostly ( low grade fever, thyroid swelling, painful to touch, hyperaemia in neck, palpitations etc, and all of these after a viral infection).

The blood results are considered normal (though not optimal). The only tricky thing with my results is ahigh flunctuation of TSH (In a matter of 2 weeks, it has fluncuated from 2,7 to 0,5, multiple times).

Hashimoto was never a cause of the symptoms for my GP and Endo, however I do have it for at least 20 years now without any symptoms up until now.

I have done all of the tests you mentioned multiple times(thanks to you and the other people in this forum for these knowledge, your help and details are a large help for us).

The TSH as mentioned previously is flunctuating a bit but is in the normal values. The hashimoto antibodies are elevated due to my existing condition, but not as much as previously. The vitamin D is a little low (i.e. 24, in a scale of 30-100). The rest are great.

Have you had de quervain at any point?

My symptoms have subsided mostly, except for the palpitations which are bothering me the most (and the thyroid swelling which is reduced a lot but not completely gone).

SlowDragon profile image
SlowDragonAdministrator in reply to roukounasGK

According to this NHS link, De Quervains only lasts a few days/weeks/months

nhs.uk/conditions/thyroiditis/

If you had it 20 years, sounds more like Hashimoto's

If you have raised Thyroid antibodies then you likely have Hashimoto's

Ever had ultrasound scan of your thyroid?

roukounasGK profile image
roukounasGK in reply to SlowDragon

Hello again! Sorry I was not clear on my previous message:

I have had hashimoto for 20 years. I always have increased antibodies. But i never had any symptoms from it. And yes I have had scans, all of these years I'm getting tested with scan and blood tests annually. These scans show various pseudo nodules caused by hashimoto.

What I now have though is different. As I mentioned before, I now have symptoms, swollen, painful thyroid, along with nervousness and palpitations. All of these, were caused after a viral infection, around 4 months ago.

So these symptoms, along with my TSH fluncuations lead my Endo to diagnose de quervain on top of the existing hashimoto.

In other words, even though I do have hashimoto, he believes that the symptoms are not caused by it.

From your message I take you do not consider this possible?

SlowDragon profile image
SlowDragonAdministrator in reply to roukounasGK

Seems odd....but no idea really

I have Hashimoto's

roukounasGK profile image
roukounasGK in reply to SlowDragon

Indeed, thyroid problems are very strange and you can't be sure. Have you ever had such type of symptoms from hashimoto? I mean swelling, palpitations nervousness, heat intolerance etc?

SlowDragon profile image
SlowDragonAdministrator in reply to roukounasGK

Yes...all of them, before adequately treated

roukounasGK profile image
roukounasGK in reply to SlowDragon

Thanx for the info. I didn't know about that. And I was indeed under-treated at the time this first happened to me. Though my endo rejected it and was sure that my dosage was not to blame, this is good to know and be extra careful in the future.

linnilin profile image
linnilin

Hi, I was diagnosed w subacute thyroiditis 16 months ago, had 6 weeks of Prednisone and after that hypo-symtoms that I still suffer A LOT from. This condition is really a pain since apart from the fatigue and bodily symtoms it has affected my mood and personality in such an unexpected way. I have also memory loss, blackouts problem w concentration etc etc. It can take up to 1,5 or, according to some, even 3 years before things are in balance again. I hope you get a smoother ride.

in reply to linnilin

Hi Linnilin,that sounds very much like my experience of subacute thyroiditis two and a half years ago and subsequent permanent hashimotos hypothyroidism. my memory is terrible and I forget stuff I did a moment before. I had to have T3 on top of levo to get relief. I was interested you say things can improve, makes me a bit more optimistic.

Mike

roukounasGK profile image
roukounasGK in reply to linnilin

Hello Linnilin, thank you for sharing your experience. How are you treated for the hypo now? I assume that you are on levo (at least), right? Aside from the memory which i am sure is difficult to get over, which are your bodily symptoms you mentioned? Do you still have palpitations (if you had any). And if not when did it stop?

Yes, i completely understand, if it were 1 month or two, it would be more bearable, with some patience. But if it goes on too much it tends to change your whole life. For me this is just 2 months but i had another serious inflammation on another part of by body before and it didn't go away for around 4 years, so i understand the frustration.

faultythyroid profile image
faultythyroid

Hi there, I had it about 5/6 years ago. Had a horrible virus and sore throat which didn't shift and then ended up being overactive for a few months followed by a big swing to underactive. My thyroid never recovered and am now also permenant hashimotos like Mike above. It took a while to get the balance right but am largely back where I should be now. There have been a few people on here who regained normal thyroid function after de Quervain's so hopefully you'll be one of those!

roukounasGK profile image
roukounasGK in reply to faultythyroid

Thanx for sharing! I am not so sure about being normal, since i already had hashimoto to begin with, but i know what you mean.

I am now on the hypo phase and even though i had hashi for years, I never encountered such severe symptoms. Its like having the flu all the time without any actual flu!

Hopefully it will not last long!

I am curious though, everyone says that the hypo swing lasts long. But don't the Meds help at least a little?

I mean, you are hypo, the thyroid doesn't produce much hormone, but if you take the Meds (levo, ndt etc) dont they compensate at least up to a point where its bearable? ( I just had my dosage increased, and my endo swore that i will feel great in 2 weeks tops)

faultythyroid profile image
faultythyroid in reply to roukounasGK

Yes, I picked up on that after I replied, sorry! The meds did work for me but the trick was waiting long enough for it to kick in and making sure that docs knew how I was feeling even if results were 'normal'. I tended to be knocked sideways by any change in dose so it was a bit of long haul until everything settled/it conked out completely! I think my body was generally knocked sideways by it all and my immune system was shot for a while ... As you already had hashimotos hopefully it'll all return to your 'normal' before too long...

roukounasGK profile image
roukounasGK

Thanks a lot, that gives me courage! I hope i will return to my normal in no time and for you to leave all of these rough times in the past and never ever encounter them again!

Ohrid profile image
Ohrid

Hi I was recently diagnosed with subacute thyroiditis, about 6 weeks in and in the hyper phase

I have just been put in steroids for the pain which have worked like magic. However I only have a weeks course so I’m nervous about coming off them in a couple of days!

I have been given some pills to stop racing heart when it’s particularly bad, I’ve taken them a few times but not noticed a dramatic effect. I have found resting is most effective to stop palpitations, whenever I walk or try and do anything they are overwhelming

If you’re having palpitations they should consider giving you something to help as it’s not healthy to be left with them.

How are you getting on now three months in?

roukounasGK profile image
roukounasGK in reply to Ohrid

Hey,

I never got steroids so i can't provide any feedback on it. A doctor told me that if you go on steroids its an increased possibility that the whole process runs a second even a third run from the start, prior to it going away completely. So i decided i would go through it myself. Once is more than enough. This doesn't mean that I did not use any other meds. I took beta blockers for the palpitations. Furthermore I have found that bananas and garlic are a great help.

Now, 6 months after, i am going into the hypo phase it seems. My TSH has increased a lot lately, and i am having extreme dizzyness and lightheadedness. I hope increasing the Levo will help on them.

Ohrid profile image
Ohrid in reply to roukounasGK

Thanks for sharing your experience and for the tip about garlic and bananas!

I hadn’t heard that steroids could cause relapse but I know symptoms come back often when they’re stopped, so I’ll see what happens after my last dose tomorrow. I can cope with symptoms coming back tbh it was just nice to have a short break from the pain.

With the swing from hyper to hypo, how long did it take you to go through that? And how quickly did the Levo kick in to hopefully make you feel better?

Wishing you all the very best with your continued recovery! :)

roukounasGK profile image
roukounasGK

Actually i am not quite sure yet. I was for around a week or two with reduced symptoms and began to feel hopeful. After this, one day i had a lot of errands to do, I didn't sleep well and the lightheadedness and other symptoms kicked in with a bang. After this continued for some days, I did some tests, i had hypo results and got my levo increased. But that was a week ago so it is too early to tell. I still have many symptoms and i can't have a normal day. I am just lucky that my work place is near my home and i have a great employer with understanding so i can leave my place of work for a few hours, go to sleep and get back to work afterwards.

So unfortunately i don't have any remedies to help or pointers right now. Hopefully you will not have the same symptoms as me, or at least once you do i will have gotten through it and will be able to provide you with some pointers to help you out.

Ps: regarding the garlic, take it easy. At least to me, it was too powerful for the palpitations. 1/3 of a glove was more than enough to ease the palpitations. Any more than that, caused the exact opposite symptoms (the ones I have now). The bananas were the best choice for me on the palpitations and only on the very tough days I ate some garlic.

Wish you all the best!

MercyMe profile image
MercyMe

Hi roukounasGK, I got hyperthyroid symptoms diagnosed by blood test (felt bad with it like severe flu) and swollen painful thyroid but was never diagnosed with S.A. thyroiditis. They put me on Carbimazole but I feel it is making me hyporhyroid and I think I should taper off it. I couldn't see how it was Graves disease as the antibodies test was normal. Am still feeling run down tired and now constipated and my skin itches. Also my eyes burn and smart. Am not sure what to do. Maybe come off the drug and see what happens. G

Lora7again profile image
Lora7again in reply to MercyMe

I took myself off PTU and slowly I went into remission but it took months for my levels to rise because my consultant didn't monitor me properly and let my TSH rise to 9. I would try and see how you feel .... you could always start the drug again if your levels rise (T4 and T3 the TSH takes longer to rise because it lags behind). When I had my thyroid storm in July just my TSH was tested at A & E and it was 0.54 and in range but I think my T4 and T3 were high but were not tested. I then had another blood test a week later and my TSH had risen 0.70 so I think my goitre had dumped a load of thyroxine into my blood stream which had caused the attack. It was very scary but my heart was tested and it was ok even though it was doing 112 bpm and my blood pressure was high and I was sweating and shaking all over ... horrible experience but now I feel ok except for not sleeping. I do get palpitations which I breathe through and I can only drink one coffee a day because of caffeine which makes my condition worse.

Plastik1 profile image
Plastik1

Hi, it did not went away. My Thyroid was almost destroyed. I only have 20% left. Therefore I take 150 levo each day.

Best,

Helen

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