My thyroid story-Part 1, Thyroiditis

My story is likely very similar to many others on here but I thought it might help someone in their own experience with thyroid disease or maybe they can give me some pointers on what to expect in the future.

Back in November 2022, both my husband and I got a very bad virus and were both sick for quite awhile. That is when my thyroid went off the rails, although I didn't know it was my thyroid at that time.

My thyroid had become inflamed, thyroiditis I guess it's called. I was experiencing horrible symptoms: racing heart, sweating, feeling like I was drowning, anxiety, sleeplessness, panic attacks, sinus problems and so on.

Within a few weeks, my thyroid swung the other way and I was cold and exhausted, but thank God, the other symptoms had subsided.

I went to see my doctor (at the time) and he put me through the usual battery of tests. My TSH came back as being high (9.86 mIU/L). So, he sent me for more tests on the thyroid. All my other numbers were normal, but the TSH was even higher this time (10.70 mIU/L). So, he diagnosed subclinical hypothyroid and started me on 75 mcg levothyroxine (synthroid). This was in December 2022. So, the doc prescribed 3 months worth of synthroid and left it at that.

I began to read everything I could find on thyroid disease, why the thyroid would swing like that, and also natural treatments for the thyroid. I read information, both on this site and elsewhere, about black seed oil and other supplements that heal the thyroid. So, I started on those on top of the levothyroxine.

Not long after, I began to feel the same symptoms that I had initially, with the sleeplessness and panic attacks and racing heart. So, I cut back on the synthroid to 3/4 of a tablet and felt much better.

By this time it was spring and time to go in and renew my prescription. I went in to see a new doctor who had taken over for my old doctor and she decided to put me through more tests, including the anti-thyroid peroxidase test (184 kIU/L). At that time, my TSH was up to 11.45 mIU/L. Everything else was normal. This was mid April 2023.

The new doctor gave me a lab requisition to get my thyroid tested again in about a month to a month and a half and come back to see her. So, my next test was in June 2023 and came back in the normal range. TSH was now 6.48 mIU/L.

The entire time, I have been taking supplements to help support the thyroid as well as approx. 57 mcg of levothyroxine.

Everything seemed to be going well until a few weeks ago when I began having the same symptoms of hyperthyroid along with gut pain. It was like going back to square one, racing heart, panic attacks, the whole lot was back. From everything I had read, I knew it was plausible that my thyroid was swinging back to a more normal state, so I quit taking everything, the synthroid as well as all supplements. The symptoms began to diminish but I ended up with severe gut pain and I was still getting episodes of my heart racing for no reason. After about a week of this, and not being able to get in to see my doc, I ended up going to emergency, where they took a slew of blood tests plus xrays on the chest.

From those, it showed my thyroid is now in the normal range of 5.78 mIU/L but I had some kind of infection and a high rate of inflammation, for which the doc prescribed amoxicillin. Everything else was normal.

I have just seen my regular doc this past week and reviewed all of this stuff. Her recommendation was to continue without the synthroid for now and keep a close eye on symptoms of hypothyroid, as it may return, and redo another bunch of tests in another month to see if there are other factors aside from the thyroid that could be causing the swings. She wants to determine if the thyroid has indeed healed (at least for now) or if this will be a life long problem.

For now, I feel much better, the racing heart has mostly subsided and everything else feels normal. We will see a few months down the road if this continues. I sure hope so.

I can't for sure say that the supplements had a hand in healing the thyroid or if my thyroid would have returned to a more normal state on it own with the synthroid. From what I have read, it is possible for that to happen. Whether or not it lasts, that will be the question.

I'll be back in a few months with an update. Thanks to anyone who reads this. I know it's pretty long. I am very grateful to be at this point where things seem to be returning to normal and I am so grateful to have a doctor that provides outstanding care.

[Regenallotment]

Your TPO antibodies result suggests Hashimoto’s called autoimmune hypothyroid disease in the U.K. GP surgery. Welcome, there are many of us here who share your experiences 🤗

This explains the swings. I’ve been having these since I was about 15. But wasn’t diagnosed till recently when things got much more difficult.

Just FYI despite being in range many of your TSH readings are less than optimal. I didn’t feel better until my TSH was under 1.0 knowing your FT3 and FT4 will also help you gauge how well you are doing on your replacement hormone.

Have you come across Isabella Wentz books? so many great tips. I too benefitted from a course of black seed oil.

Has your doc tested your vitamin D, B12 Ferritin and Folate? Often these are sub par in us Hashi’s.

Keep posting, loads of helpful folk here 🌱

[Hidden in reply to Regenallotment]

Thank you for the reply, it's really appreciated. Yes, I've read some stuff on Isabella Wentz' website, very good information. I may have to get her 'Root Cause' book as that seems to be the point I am at now. Knowing where this started will help with dealing with it. So far, my other numbers FT3 and 4 have all be normal as well as the D, B12, Ferritin and Folate. At least they are in the normal range according to the blood test report. So, hopefully, we will figure it all out. This site is very helpful. Sounds like you have had quite a struggle getting to the bottom of things yourself . I hope things are better for you healthwise. It's so great to have some input from folks on here. I've learned a ton just reading what others have gone through. We have to be our own best advocate for better health. Have an awesome weekend.🙂

[jgelliss]

Welcome to this Great Forum. I had the same swings as you experienced. In my case the Dr's kept telling me my thyroid levels where fine. Except that I wasn't. They had no explanations as to why I was having the symptoms that I had. Only to come to years later because of the Dr's ignorance to have to TT for papilary cancer. I have very strong belief had they diagnosed me properly I would still have my thyroids but probably also be on thyroid meds. There is a lesson I learned from my experience. I am proactive now in my care. If I don't get the satisfactory answers I move on. Trust your Gut instincts. Hope you get the right treatment you need to feel your best.

[Hidden in reply to jgelliss]

Thank you for replying, I'm sorry to hear that your journey ended with cancer. I think so many docs just aren't very good at their jobs. My last doc was like that. Nice enough guy, but nice doesn't solve the health issue. Yes, we need to be proactive and fight for our own health. I hope you are getting some good support now and feeling better. I have a friend whose daughter had thyroid cancer. They took the thyroid out completely and she's been on meds ever since. One of the specialists she sees told her to quit taking the thyroid meds, can you believe that?!? I nearly fell on the floor when I heard that. Makes you wonder how some folks got to be docs in the first place. Anyway, thanks again for reply and best wishes to you for better health.🙂

[jgelliss in reply to Hidden]

It's tragic that your friends daughters Dr told her to stop taking her thyroid meds after having TT. That's a Dr you want to run from as fast as possible. There are unfortunately many Dr's that just don't get it when it comes to understanding thyroid issues. This forum is a Blessing . I learned and continue to learn so much about my thyroid journey. Best wishes for your friends daughter.

[tattybogle]

hi dfjo, Welcome .

a virus is one of the common triggers for kicking off wobbles in thyroid function

(pregnancy is another one ).

Thyroid function does sometimes settle back down again and so it's possible you may continue to be ok without levo ..... but , there is a clear autoimmune component to your case (as evidenced by the raised TPOab) .. which does unfortunately make it more likely the problem will continue, and worsen over time .

might be a good idea if you let us know what is in the thyroid supplements you have been using .

Also , it would be good idea to post the actual fT4 and fT3 results with lab ranges ,, and the vitamin results + lab ranges ... 'normal' covers a wide range of results , but being 'within the normal range' is no the same as optimal~ improvement can often be made .

[Hidden in reply to tattybogle]

Thank you for the reply, I sure hope it settles down for good but I'm pretty sure I am not at the end of this journey yet. My T3 was 5.3 pmol/L (3.0-6.5 range) and T4 was 13.4 pmol/L (10.0-25.0 range). These are numbers from way back in April. The doc has not tested for these since, only the TSH. They are likely different now.

I used a supplement called Thyrosmart, components listed below, plus black seed oil 1000mg, B12, zinc and Vit D, but I was already on Vit D. I was also taking melatonin and magnesium for sleep. Right now, I am not on anything. I'll wait until the next tests before going back on anything. Might get a truer picture of what my body is actually producing if there are no outside influences. So far, I feel okay, knock on wood.

L-Tyrosine 250 mg

Sensoril Ashwagandha Extract (Withania somnifera, Root & Leaf) 10% Withanolides, 32% oligosaccharides 62.5 mg

Guggal Extract (Commiphora mukul, Oleo-gum resin) 2.5% Guggulsterones 60 mg

Pantothenic Acid (Calcium D-pantothenate) 50 mg

Copper (Gluconate) 250 mcg

Manganese (Citrate) 250 mcg

Iodine (Potassium iodide) 50 mcg

Selenium (Selenomethionine) 25 mcg

Anyway, I have all the supplements here ready to go if my next blood test comes back all whacked out again. The thyrosmart is primarily for hypothyroid. Some of the components can apparently exacerbate hyperthyroid if you aren't really careful. Don't want to do that. Thanks again for the reply. I really appreciate the help I've found on this site. I feed badly for so many that are struggling with thyroid problems, it's so complex an issue and such a fight to get things working at an optimal level. Anyway, thanks again and have a super day.🙂

[tattybogle in reply to Hidden]

yes ....here's hoping things stay good for you . fingers crossed.

i agree with your plan , stay off this supplement so you get a true picture of what is going on with your thyroid without any outside influence .

Iodine has very complex interactions with thyroid conditions .... Iodine in excess or deficiency has the potential to worsen both hyperthyroidism AND hypothyroidism .... ... collection of useful information on iodine use in relation to thyroid disorders here: healthunlocked.com/thyroidu... (iodine-a-collection-of-useful-information-because-the-search-facility-on-health-unlocked-is-totally-pants)