I just came across this website and I have really high hopes to get some answers reading others questions.
Apologies for long post!
So to give you history:
Back in Nov.2020 I felt a little pain on the right of my neck but thought I pulled a muscle. I felt like I'm coming down with something. After 2-3 weeks the pain was still there and I felt a little lump as well. Week or two later i was worried so I went to see GP who said that I probably have some infection and swollen glands. I had fever of around 38.6.
I stayed in bed for 3 weeks feeling really unwell. GP run a lot of bloods but not thyroid tests. Only ESR and CRP were slightly risen. I even checked my teeth for any infections. GP still thought this is swollen glands. Week after the initial check I could feel 3lumps in my neck running from under the jaw down. I was suffering from a lot of pain in the neck, radiating to the jaw, teeth and ear and sometimes to the collar bone, back of my neck and head and to the left side on occasion too. I was sent for US and the radiographer told me it's not my glands, it's the right thyroid and it could be focal thyroiditis but couldn't exclude any lesion. Apparently the area looked really dark with a lot of giant cells. I went to see ENT privately and he also said this could be Thyroiditis but he recommend another US which I had on 12/01/21 together with biopsy which was extremely painful due to a lot of pressing on the area. I also had bloods done;
THS 1.37
T4 13.4
T3. 5.0
Thyroid peroxidase antibody 38
TSI <0.10
ESR 46
CRP 28
The biopsy results two weeks later were sent to m on mychart and were devastating. I was told in a little none at the bottom that they couldn't determine from the biopsy weather the lesion is being or malignant so I need the right part of the thyroid removed to rule out cancer.
And then nice talk about good statistics. This was all done on NHS
I went to see ENT privately and he checked my throat with camera, all fine, be read all notes and results. I told him that about 3 months later in still getting fever on occasion, I'm extremely tired and have very painful neck which radiates. He said the pain could be mascular until he examined the neck and then he knew how much pain I'm in and that it is from the Lyon in my neck which is very tender. He agreed that I don't need the surgery right away so I can try ibuprofen for a week and if this didn't help to get 5 days of steroids and then we'll have a follow up. He said that this could be Thyroiditis but unusual for only a part of thyroid to be affected rather then entire right part, but not impossible. He said this could be not related to the lesion and after the swelling goes down it might still be the same case that there's still a lesion with ubnormal cells and surgery is needed but it could be that the Thyroiditis caused this swelling and lesion. I've been taking ibuprofen 3x a day for exactly a week and guess what?! Almost no pain in the neck and I can't feel any lump there anymore and it was huge before and I couldn't even touch that area with makeup brush! I'm still very tired and still getting fever but I can't believe the pain is gone. So I'm not going to take steroids as this was suggested to not take them off ibuprofen helps. I updated the ENT via email today and awaiting his replay. I wonder if anyone was in such situation ever? I'm happy to share the biopsy results if this helps anyone. I will be so happy to hear from anyone. I've been in some really dark places since that biopsy results letter. I found myself literally saying goodbyes with this world already, crying all the time and getting extremely angry and depressed at the same time. It's been a horrible 3 months.
I hope my message makes sense, English is my 2nd language.
To add, I don't remember getting any upper respiratory infection prior to this but I had bad case of Covid19 few months before and have been suffering with a lot of issues since.
Oh, and at the beginning of this, Nov/Dec I had some night sweats and palpitations.
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bajmon
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I feel sorry for you as you are obviously distressed.
I have just in the last few days trying to find out if there is a connection between Covid 19 and Thyroiditis.
In the last few days I started to try to put the pieces to my own puzzle together.
I have recently switched medication for hypothyroidism (from Thyroid S NDT to Metavive Porcine glandular) in many occasion in the last 2 months i felt pain in my thyroid like it was inflamed thinking it was because of the change in medication.
Now going back a few months, at the end of October I started to feel unwell with very bad sore throat then after a week i lost my sense of smell and could not taste anything (making it difficult to cook ) one evening i even went through the NHS site to fill up a form for a covid test but going through the questions I eventually gave up as I was not coughing had no fever yes i was tired but i thought i had a throat infection...
Forward this Sunday i spoke to a friend over the phone who told me that her all family had Covid (beginning of January) she had a very bad dry cough and her 2 young adult boys had some fever and aches and pains her husband him had a very bad throat for 3 weeks and lost his sense of smell and taste they all tested positive to covid... I am now thinking that I could have had covid and my thyroid somehow has been affected (I have Hashimoto) and it has nothing to do with me switching medication reading you post makes me even more convinced that there is a connection.
This what I found BTW read it it may shade some light onto your medical mystery.
Thank you so much for this, it was an interesting read. I just wonder if Covid19 would've affected my thyroid do many months after. I was ill with civic through out March 2020 to early April and started to feel bad and the begging of November when I had the pain in neck where I found lump little later. My consultant and earlier the endocrinologist didn't get interested in the fact that I was ill with Covid19 earlier.
Hey,I completely get it, and feel for you. I was in almost the exact place you are now, 2 years ago. The only differences are that I got A LOT of palpitations. To the point that I couldn't sleep for more than 2 hours a day, which made me feel even worse. I also had many hyper symptoms which you didn't mention so maybe you don't have this. I lost 30 kg of weight within 2 months, I had anxiety and lightheadedness, I had restless legs, Tremors etc.
I was diagnosed with subacute thyroiditis (de quervain). I had elevated CRP as well but not so much (from a range of 1-15 I was around 20) so all doctors dismissed me and told me it's not much, it will resolve itself.
Fast forward to today, the swelling has been reduced. The palpitations are still there but mildly to the point I barely notice them at most times.
This doesn't mean that you will also feel crappy for the next 2 years since
1. My swelling went down in about 8 months and yours was much earlier from what I understand. But I didn't get any nsaid . So maybe you will go much better than me.
2. I also have hashimoto, and I suspect that the thyroiditis wrecked havoc on the thyroid system. Most probably the subacute has been resolved, and the issues I am currently having are caused by the hashimoto. Though I still feel some tingling sensation on my thyroid from time to time which is a sign of inflammation.
Anyways, what I wanted to tell you is that if it is indeed thyroiditis what you have, it was a hellish time of my life but it gets better with time. You just have to be patient.
Hi I’ve had a very similar experience, but had a diagnosis of subacute ,. I have had a us and awaiting a biopsy.I was told that a number of people are developing this after having covid so that fits in with you. I was told that you are hyper then normal, then hypo, how long each phase lasts is not known.
Try not to worry you seem to be in good hands with your doctors.
I’m sure others on here with more experience will reassure you.
Thank you for your reply, I really appreciate it! What wonders me is that I only had full thyroid tests done only on 12/01/21 so 2.5 months after first symptoms and these are those in my original post which looks ok to me. On 30th November I only had TSH which came back 2.89 and I was told that's fine. but this wasn't full check. My ESR was 21 (2-12 normal) and CRP was 6 (0-6 normal) so I was told that it was not risen enough to worry them. But in Jan. it was double that. I'm not sure really if I'm in good hands. I have a feeling that the endocrinologist didn't pay attention to my symptoms at all! She called me eventually after the biopsy results and was wondering why am I in pain but I head that pain since Nov and I told her that. The only thing that interested her when they were found biopsy, was the fact that I lived 600 km away from Chernobyl during the explosion so possible radiation from the cloud which traveled over my country. I think this convinced her to have the thyroid removed. I've never had any thyroid issues before though I did get trsted twice due to being tired all the time for the last 8 years. Results were always correct but I would be only treated for TSH which I was told by friends with any thyroid issues that this isn't enough.
What worries me is that they want to remove the thyroid even though they say at the end we might find out it was Thyroiditis. To me that's to much gable just to find out. But I'm glad I have convinced this ENT surgeon to try with ibuprofen first. I have a feeling that if it is Thyroiditis, I'm getting it now in my left one. The area is tender under a little pressure but can't feel swelling there. I woke up with fever today and feeling really rotten but I think the right side has definitely improved. I'm really desperate for another US.
I'm worried that they are right and I have suspicious cells there on top of the Thyroiditis and I'm just delaying the surgery. Just an awful times. It worked me that I never experienced during symptoms like strong palpitations or tremors out had clear hypo or hyper results. Having said that, I only had that one full thyroid function done.
Hi my last bloods showed tsh 0.05 free T4 23 pm0l PCr 57 MG/
To be honest I don’t have a clue what this means, before this illness I didn’t even know where my thyroid was
I had the swelling and pain on the right side first, then it moved to the left, it was much more swollen but I think because I had the ibrufen in my system the pain only bothered me at night plus the overheating
I must say I’m feeling much better, no longer feeling like I have flu, but wondering what comes next. How long did it take to get your results from biopsy ?
I’ve not had palpitations, but I wear a Fitbit and I’ve noticed my heart rate has been much higher than normal, sometimes aerobic when lying in bed
Would they just remove the nodule ? Not the whole thyroid ?
Have you asked for another scan when the swelling passes ?
Yes, I've asked for another scan and if they want to I'm ok with another biopsy. Since there's no painful lump there anymore, I'm sure it wouldn't be painful this time. They said that have to remove the right part of the thyroid, I don't think there remove only nodules. I've never heard that before. I had my results in 13 days but that because there suspected cancer. If they do, they have time frame of 2 weeks.I think mine is moving to the left side note but not as painful.
Mine moved to right side, it was more swollen but the pain was less severe but more sustained, I have had ibuprofen and think that’s helpedKeep me up to date on your progress
Hope long have you been ill for now? Did you get the subacute Thyroiditis diagnosis straightaway? Why are they doing biopsy if they know the cause? Keep taking ibuprofen and hopefully it's ease.
I'm feeling terrible now, very tired so the time and it's been 3 months. It seems like I was feeling better earlier even though I was in more pain but at least I was still able to go for walks and go to work. Note I'm writing from home and not going out at all.
My problems started early November, my GP diagnosed it after the first blood test early December, I had a scan as this is standard procedure to make a definite diagnosis. They discovered the nodule with the scan, maybe it could have been there before the thyroiditis, who knows? I’m just wondering what will come next, I hope you soon recover from this, perhaps you should see your GP x
Sorry, yes you said that earlier. I'm still getting used to this forum and it's format. I had quite few replies.
They have found another nodule on my left side but it's completely being. Apparently 90% of people have some thyroid nodules and they are usually found accidentally. and are benign.
In my case what wonders me is that the I was told how large is the left nodule, the benign one but the right side I was told it's partly well defined and partly I'll defined and not measurements.
"Within the superior aspect of the right thyroid the partially well defined, partially ill defined hypoechoic nodule is again seen. It is taller than wide, hypovascular with no calcification."
I hope you'll get the biopsy done soon for some piece of mind!
I have done some reading on Cancer research UK forum it seem that inconclusive biopsy results are happening on a regular basis and also operations after that, from there some patients have various outcomes some test positive for cancer some have only benign nodules...
So yes it seems rather drastic to remove half of your thyroid without confirmation of malignancy but it does seem a fairly normal course of action in case of suspected thyroid cancer, of course the fact that you were relatively closed to Chernobyl at the time of the explosion is no doubt a risk factor the doctors have taken into account.
In certain cases people get a CT scan to help with diagnosis maybe you could ask for one not sure if it would be conclusive mind...
On the post Covid thyroiditis some people took a course of steroid like prednisolone could you ask your Endo to prescribe you some to try, improvements on it are quite fast if you have thyroiditis for what I have read.
There are no much research done about the long term effects of Covid 19 except for patient who have been severely ill. In those cases it seems the time frame is up to 2 months after infection but we know so little about covid 19 and the fact that it may trigger an autoimmune response later on seems really possible.
I hope you will find some answers try at least to get a short course prednisolone from your doctor, also steroids can bring their own challenges a short course could resolve your issue without much side effect also enquire about a CT scan as an extra tool to a more accurate diagnosis.
I have for myself ordered a antibodies test to try to determine whether I had Covid or not will let you know my results.
Thank you so much. Your such a kind person to spend all this time to research. I have a prescription for 5 days steroids (can't remember which one) but I was told not to take it if I see progress after a week of ibuprofen which I see especially on my neck lump/pain situation. But I am really tempted to take it just in case I'm getting Thyroiditis on my left thyroid which is only slightly painful. The fact I keep getting risen temperature is confusing. It seems to be always after I get to late to sleep or don't get enough of rest or do a little more work than my office job(working from home). Last night I fell asleep at 1am and woke up today at 7:30 with fever. I'm spending day in bed with terrible body aches even after ibuprofen but the temperature is down now. I'll try to get the CT scan. I also want to get full body MRI.
Let's keep in touch and good luck with everything.
That's good that they are happy with the look of the nodules. My ENT surgeon has told me that 90% of people have thyroid nodules so that's normal apparently. Fingers crossed for good blood results!I went to the the ENT Surgeon today for a follow up. After a week of ibuprofen and 4 days of steroids I feel absolutely fine. No fever, no pain or lump on my neck, no brain fog or tiredness. It's only been 4 days like this but I'm happy. The lump on the neck and pain were actually gone after 3-4 days of only ibuprofen but then I had slight pain on the left side and fever for free days. They did another scan today but because it was done privately and the last was at a NHS hospital, they couldn't compare but there's still a dark area on the right thyroid which was what worried them in the first place. But now I have a similar area on the left side of the thyroid as well, which would correspond with the pain I've had recently and return of fever so again it looks more like Thyroiditis. The ENT is now to make a decision which I really really hope it won't be the surgery but observing the area. Fingers crossed? So really I'm no wiser still.
Thank you. I'm no wiser today after the appointment and another scan. They can still see darker area on the right thyroid but Cosby compare because the first SC m yet scans were fine art the NHS hospital and today I was seen privately. I really hope they'll will compare though. But now I also have darker, similar area on the left side. The positive, I was told, is that it looks like Thyroiditis in that case because I was experiencing pain and fever last week. This could then look like both dark areas are a result of inflammation. I honestly don't know anymore. I was told that another biopsy would show the same result so no point in it. I'm waiting to hear back from the ENT Surgeon.
HiHow are you? just wanted to let you know that my covid antibodies test gascome back negative. My painful thyroid is better on and off but i had a sore throat (likely viral) so this could have triggered thyroiditis plus the glandular i take that seems a bit unpredictable. Going to have a blood test today so will se if anything comes up.
You are welcome i have this need to understand how things are connected so love researching everything lol I have read that thyroiditis seems to give low grade fever.Also i am not for steroids i think you should take them 5 days is a very short course unlikely to cause side effects and it may hasten you recovery time if the Dr ask later on just say you were having inflammation in the other side which prompted you to take the steroids also it would make it obvious that it is thyroiditis.
How much have you been advised to take everyday?
I have myself started to take ibuprofen and it seem to help my thyroid pain, the problem is because I have asthma i cannot take it for more than 2/3 days as then i start to feel wheezy.
Try also not to stress too much and have some rest.
Keep in touch I hope it will soon be just a bad memory... 🤗
Also if you decide to take the steroids i think it is better to stop ibuprofen bare in mind that ibuprofen long term without the use of lansoprazol may cause duodenal ulcer no problem however if taken short term. 🙂
Hi, I haven't been here for a long time and I was wondering how everyone is doing?As mentioned above, the lump in my neck and pain on the right side was fine after few days off taking ibuprofen and 5 days of steroids. I was so relieved but the pain started on the left side. There was no lump felt under my fingers like on the right but the pain was 10x worse. I have no idea how I've managed to work through this as well. After about a week it slowly started to get better. I've managed to get a video call privately with an endo who was great. He looked through all the checks and results which I've sent him, he did new bloods and came back saying that I have as much chance of having thyroid cancer as him. I cried so much from the relieve. I can't believe that if I didn't listen to my gut feeling, I would be recovering from the surgery at that point, have I followed the advice of the NHS endo. Anyway, bloods showed that I'm slightly under active so I was prescribed 50mcg of Levothyroxine. I was told I'll feel great taking it. I felt much better after 2 weeks. It was great to do things for 3 days in the raw without feeling wiped out after. But after those 2 weeks it went backwards. I had a terrible few days of a lot of palpitations and a day of Very hight blood pressure which I never ever get. Then the palpitations went away but I'm still very tired, I wake up with swollen feet and a lot of pain from knees down and in my hands. Something that I've been suffering for many years and no-one could tell me what that might be but now I put it down to my thyroid which I think wasn't functioning correctly for many years and only last November has manifested it by the Thyroiditis. I had another bloods done yesterday so looking forward to see the CRM and ERP results as last were very hight and to see what is the thyroid doing. But what worries me that whatever I read about Subacute Thyroiditis says that no hormones should be given and to let the thyroid to recover by it self that the underfunction odd the third stage of the illness and most people recover. I'm just worried that taking Levothyroxine will slow the function and then I'll have to take it all the time.
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