De Quervain thyroid disease

[starlily88]

I was diagnosed with De Quervain's thyroiditis March 2018. I have Endo for last 28 years.
I suffered terribly - he did nothing because until I turned into "Hypo" he "couldn't give me medicine.

My neighbor is Hopkins Fellow. He saw me almost unconscious on the sidewalk outside - got me up to my flat.
He looked at my blood work - said "no wonder you are so sick, your numbers are terrible".

Every single horrible symptom I had - I called my neighbor.
My ENDO would say (thru the portal) "this has nothing to do with thyroid".
Not my neighbor - he told me each step what I needed to do. I got severe GERD, he said due to thyroid disease, get meds, so I did.

I have always gotten along with my ENDO - you loose memory a lot 1st year, you are awake up to 5 weeks - yet he wanted me to drive to take 2 day test. I could not do it, and when I could - I drove into pole - I fell asleep.

Now I switched from Levo to Armour Thyroid - since it already has T3 and T4 in it.
Levo only has T4 - your body has to convert T4 to T3 - my body did not do this.

Now 5 months on Armour - my TSH in last 4 weeks went up double - and is off the chart. My T3 went up also. Free T4 is still very low.

He won't answer any question - his nurse says all thyroid patients are different.
Yet this disease I have only 1 in 300, 000 people in world get, he has only seen 40 cases in his lifetime, and he is 60 yrs old.

He has almost 2 yrs of my blood work from my Levo and now Armour.

Why is this such a mystery? He says he has no clue which one is better, it matters how I feel?
I feel lousy - I have not "resolved" after 18 months like he said,
Oh right - my Thyroid antibodies all negative so he knew long ago I would not resolve!

I am freezing, still get the GERD - that is only thing that is better mostly.
I am depressed, freezing, skin is so dry my eyebrows, eyelids, scalp itches unending.
My life has been reduced to nothing.

Why do Drs just not tell patients anything at all?
Why is rare thyroid disease treated like all other thyroid disease?
And he says all patients are different, and there is no "textbook" for thyroid - to me that is a big lie.
I have suffered for 2 years - neither medicine helps me, my symptoms are still here.
Is this normal? Thanks Starlily88

 

[xks201]

What state are you in? There is fake thyroid in my city (Saint Louis). I would stick to t4.

 

[pattismith]

@starlily88 ,

I have Graves thyroiditis, with high anti-thyroid antibodies, so it is a different problem than De Quervain thyroiditis, but I found some articles about it.

Your disease follows a natural course from hyperthyroidism to hypothyroidism (with low T4 and high TSH).

The nature of your disease seems infectious, and the treatment is mostly anti-inflammatory drugs while correcting the thyroid hormone inbalance:

https://www.ncbi.nlm.nih.gov/books/NBK526066/

"Treatment for de Quervain thyroiditis is fairly straightforward, with anti-inflammatory treatment being the key. Salicylates or NSAIDs can be used for patients with the mild or moderate disease. For more advanced cases, corticosteroids can be started with doses ranging from 15 to 20 mg a day tapered over 4 to 6 weeks. There is usually a marked improvement of symptoms within 48 hours.
Steroids, while reducing the pain associated with de Quervain, do not necessarily prevent the thyroid dysfunction that can occur during the course of the disease. Symptoms of hyperthyroidism may need to be treated with propranolol or atenolol with close follow up. Additionally, in some cases, patients may even need a short course of levothyroxine (started and monitored by their primary care provider) during the hypothyroid phase."
"Prognosis
De Quervain thyroiditis is generally self-limited with patients returning to a euthyroid state within a few months. Recurrence is uncommon but can occur in up to 2% of patients. Hypothyroidism may also become permanent in 5% of cases. "

I agree with @xks201 that you seem to miss some T4 now.

 

[starlily88]

@starlily88 ,

I have Graves thyroiditis, with high anti-thyroid antibodies, so it is a different problem than De Quervain thyroiditis, but I found some articles about it.

Your disease follows a natural course from hyperthyroidism to hypothyroidism (with low T4 and high TSH).

The nature of your disease seems infectious, and the treatment is mostly anti-inflammatory drugs while correcting the thyroid hormone inbalance:

https://www.ncbi.nlm.nih.gov/books/NBK526066/

"Treatment for de Quervain thyroiditis is fairly straightforward, with anti-inflammatory treatment being the key. Salicylates or NSAIDs can be used for patients with the mild or moderate disease. For more advanced cases, corticosteroids can be started with doses ranging from 15 to 20 mg a day tapered over 4 to 6 weeks. There is usually a marked improvement of symptoms within 48 hours.
Steroids, while reducing the pain associated with de Quervain, do not necessarily prevent the thyroid dysfunction that can occur during the course of the disease. Symptoms of hyperthyroidism may need to be treated with propranolol or atenolol with close follow up. Additionally, in some cases, patients may even need a short course of levothyroxine (started and monitored by their primary care provider) during the hypothyroid phase."
"Prognosis
De Quervain thyroiditis is generally self-limited with patients returning to a euthyroid state within a few months. Recurrence is uncommon but can occur in up to 2% of patients. Hypothyroidism may also become permanent in 5% of cases. "

I agree with @xks201 that you seem to miss some T4 now.

I did take Prednisone 4-6 weeks during the hyper stage. I also did Atenolol. Then I eventually did Levothyroxine 50 mcg. I was supposed to "self resolve" in 18 months. I did not resolve at all.

I got it mid-March 2018 - and I still have it February 2020 - I thought by Sept 2019 I would be better.
I realized by summer of 2019 I was not returning to euthyroid state. So I asked to switch to Armour
in Sept 2019 - since I may not have been converting my T4 to T3 well.

Been on Armour 5 months - and my TSH is too high (doubled in last 4 weeks), and over standard range.
My T4 is standard still. My T3 went up 0.6 pg/mL - in last month but still in range.

I was diagnosed with this disease in 2003 - had no symptoms at all but tested positive, thyroid hurt also.
I did the Radioactive 2 days test in 2003 - swallow pill, see if thyroid uptakes pill.

Now 15 yrs later in 2018 came on from virus attacking my thyroid I was told.
My symptoms are horrible - I can feel each rice kernel go down my esophagus due to my thyroid still in pain,
thyroid pain was controlled by steroids, and fast heart palpitations, and high BP by Atenolol.

My left ear aches for last 3 months again, can't sleep no matter what meds I take, have depression that is unlike any I have had in my life, my hands and body can't get warm no matter what temperature my heat is on, my hair, scalp, eyebrows, skin on face so incredibly dry and itchy I have had to use steroid ointment to stop the itching. I have loss of oxygen. I had severe GERD till 5 months ago - controlled a bit now.
The last 2 years have been the worst I have felt in my life.

I never in my life had a feeling that I was dying - but the 1st 12 months, I knew I was dying.
I found a tiny few people who had this - from 15 yrs ago online - they all said exactly what I said "it feels like I am dying"
This is not Graves or Hashimoto - so I don't like to bring it up.
None of what you printed on here is what my ENDO told me - he is only ENDO including my Hopkins thyroid cancer ENDO - who has treated 40-60 cases of De Quervains.

He always told me it would self resolve in 18 months (Sept 2019) - but what he never told me is when I
took the TPO and TGA Thyroid antibody tests May 2018 - I saw them - they were perfectly fine - since I don't have Graves or Hashimoto's.
This pretty much lets him know that I am not going to self resolve but he did not tell me this.

I am at the point of giving up - I can't function, and doing Prednisone was only for the thyroid pain and swallowing pain - which I have some of it back again now.
I did the Atenolol to stop my heart from going so fast, for short time.

The Levothyroxine - I have been doing that once I got into Hypo stage. Did not make me feel better, did not take my symptoms away. So I just switched to Armour - to see if it would help me.
Now I have to increase my dose of Armour.
Starlily88

 

[starlily88]

De Quervain thyroiditis is generally self-limited with patients returning to a euthyroid state within a few months. Recurrence is uncommon but can occur in up to 2% of patients. Hypothyroidism may also become permanent in 5% of cases. "

Thank you for writing to me. Of course I read that article, along with only medical study done on De Quervains in the world by the Japanese long long ago.

I was the one that asked him to switch to Armour so that I could have higher numbers of Free T3 - and perhaps feel better - since I was "within" standard range but right at lowest point of range.
And us having ME/CFS - we are already compromised.

Would my body be able to take Free T4 and convert it to T3? My numbers were so very low (still in range as my ENDO loves to tell me) - most people told me I may feel better if I get my T3 in the higher range, as opposed to the lowest.

I don't have a clue in last 5 months which is better Levo or Armour - as now my TSH shot up in 4 weeks to over double its number - and out of range now.
I feel lousy - I have friends with Graves and Hashimoto - it is a different animal from what I have.

The only person on here who PM'd me was a guy who had had thyroid cancer - he had all the pain happen to him also. He could relate to being awake - like you are on speed/meth - for 5 weeks straight, falling asleep 2 hours in 3 days sometimes. It was horrific.

I watched so much Netflix on my computer (don't ever do this) - my lids stuck to my corneas - and I had bad corneal abrasion 2 times during this - ended up in Hospital at Hopkins - which started corneal disease, blepharitis, MGD disease - so many I can't even remember the names.
Of course they tested me for Sjorgen's - don't have it.

They had to put plugs in tear ducts, etc. I lived at Wilmer Eye Institute for a good part of 2018 -2019 seeing the head of Corneal disease, my Neuro Opthomologist - head of it - he put me on so many machines to see if I lost vision, because I also have now - partial blindness in one eye - amarosa fugax.
I become blind in one eye - for about 15-20 seconds, pure black - and then I come out. Not a stroke, or TIA, put into Hopkins 2 Christmas eves ago. There is no cure for this- its my corneal artery.

I never had dry eyes, or blindness, or corneal abrasions, or MGD (gland dysfunction) - so I probably caused a lot of this because you literally can't sleep - or I couldn't - of course I was on steroids, and hyper, and it was the worst feeling.

Anyone who saw me the 1st year - would stare at me - if I made it out - because I would pass out on way to car, and lay on the asphalt. When I asked them what was wrong - they all said I looked so different, what happened to me?
I still had makeup on, dressed nice, put wig on if winter - but I looked like I had cancer and was on my way out.

I passed out going up my sidewalk - unconscious on my stoop till my Hopkins Dr neighbor saw me, and picked me up - he then helped me so much - he looked at my blood work - said it was terrible, that I was really sick.
He told me when I thought I was having heart attack each nite at 8 PM - eat yogurt right now,
pain left me - told me I had severe GERD from my disease, got PPI to help this.

My ENDO never treated any of these symptoms, nor did adrenal or cortisol testing.
Anyone else I went to did cortisol tests, etc. Not the correct testing but I think my adrenals are OK.

Without my Neighbor Dr helping me the whole first year, I would not be here, because I suffered so much, alone. And no one who hasn't had this disease - has any idea of how horrific it is, swallowing is so hard to do I just stopped eating, the pain never stopped, even with steroids, just got duller.

 

[pattismith]

@starlily88

do you know if your symptoms are hypothyroidism or hyperthyroidism?

High TSH means usually that your thyroid hormones level is too low, so if your symptoms are hypothyroidism, adjusting your thyroid treatment to a higher level might be the answer. Isn't it what your Endo said to you?

If you have dry eyes and GERD, your autonomic nervous system may be altered. It may be related to your thyroid imbalance, or to a distinct neuropathy.

I understand you are suffering for a long time now, I hope improving your thyroid blood panel will bring you some relief soon