Hi, I am wondering any has had a similar running with painless thyroiditis.
Nov 2021 I caught C-19.
February 2022 I started feeling woozy a very strange feeling blood tests showed I was aneamic. So I was taking iron, but panic attacks, high heart rate were getting worse. In May 2022 I was unable to leave my home due to the sheer panic and dizziness, but still able to function okish, 26th June it was like nothing had happened. And I was back out. How ever I did still have hyper symptoms on and off and wasn't quite right.
Roll onto January 2023 I was driving the kids to school and had an awful panic attack but thought maybe just stress.
February 2022 - the odd bit of jaw chattering, dizziness started.
I've not left my home since March 19th 2023 at all. My blood test showed the peak on the 5th may- high wbc, high neutrophils. I spent 5 weeks in bed with the severe hyper, adrenaline ect was unable to be around anyone at all as it would cause sheer panic. So the second bout has been by far a lot worse and scarier.
I had a blood test 5th July, showed high end FT4 and high thyroxine levels. Have done a repeat test today I'm having to do this private as my drs have not been helpful in the slightest (not even propranolol when my hr was 160 for 6 days)
I'm still having hyper symptoms be it not as bad but still noticeable.
Did others develop agrophobia? Anyone else have a second worse bout a year later?
Feeling like I am never going to leave my home again, I dont know when I count the timeline - first lot of back to back panic attacks 29th march until the 6th April. Blood test showing peak on the 5th May or when I was in bed?
Everything I see says 4 months, I see most people say 6months? Any insight would be much appreciated please. And thank you.
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Dizzy2016
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
We do really need to see blood results for both thyroid and iron/ferritin. Low iron can have panic attacks, anxiety and depression as a symptom.
Have you also had other vitamins tested - folate, B12 & D3?
Sorry I didn't know there is a profile section I will definitely have a look.
I have blood results, my iron and ferritin is very low, along with folate and b12 but I've never had symptoms or issues (I have heamochrosis gene) but they have always has been low. The anxiety and panic is definitely thyroid related, as it all started at the same time. I will try to share results now I'm not very technical so please bare with me 😊
So your folate is deficient. Have you mentioned this to your GP and have they prescribed 5mg folic acid? They should do this, if not you can buy your own methylfolate, would recommend 800-1000mcgs methylfolate.
Your thyroid results are all within the normal range. None of them suggest that you have hyperthyroidism as although low in range your TSH is within normal paramiters.
Your FT4 although high in range at times is not over range.
Your B12 is good.
Your thyroid antibodies are both negative so no indication of autoimmune thyroid disease.
You haven't posted the iron/ferritin results which I suspect are very low.
If you eat meat then up your red meat intake and in particular add in chicken livers or pate a few times a week.
Recommend taking your iron supplement with orange juice or anything with vit C in as this helps it to absorb.
If the iron supplement the GP is giving you just isn't working then many of our members do well with this form of iron. threearrowsnutra.com/en-uk/...
I have subacute thyroiditis- it doesn't so much effect thyroid levels, it's releasing the thyroid hormone into the blood which is shown on the free thyroxine level on the 5th July results (I was already 2 months in at this point so it was likely higher)
My iron and ferritin is very low , thyroiditis commonly causes aneamia I'm taking iron, vit c, folate, b12, b complex, Magnesium but my metabolism has running so fast I haven't absorbed anything unfortunately.
My sat for iron went 24% to 13% when the peak of thyroiditis hit. Ferritin is 6 (always has been) and iron 9.
I also can't do methyl vitamins due to genetics. They don't agree. But I am taking folic acid
There are better forms of folate other than folic acid. A more active, non methyl form you could try would be folinic acid. proactivehealthcare.co.uk/f...
Aree you taking iron and magnesium well away from other supplements? Both of them can inhibit absorption of other supplements that you can take at the same time.
Recommend spacing supplement timings as B's in the morning, Iron+ vit C lunch time, Magnesium evening.
Its not surprising you have the symptoms you do with such low iron and ferritin. That needs to be your first priority to raise and I'd start by finding a better iron supplement. If things really don't improve over time then push for an iron infusion.
I don't tolerate folinic either, unfortunately only seem to tolerate the folic acid.
I take Vit d first thing with magnesium, then b complex and b12, then iron, folate and vit c. I think I've got it all down to where they don't interfere with each other🤞
My ferritin won't go up, it's been low since I was 13. I have thalassemia genetic trait so they won't do infusions ☹️ thank you for your advice I really appreciate it.
Oh dear! Your B12 is very, very low! And that is probably what is causing the dizziness. I had terrible dizziness when my B12 was low, and it wasn't as low as yours.
I did have agoraphobia for a long time. But, weirdly, I had claustrophobia at the same time! So, a constant need to be in just the right sized space. But, it's so much better now.
Do you have a diagnosis of hypothyroidism? Are you taking thyroid hormone replacement? Because the blood test results you have shared don't show any sign of hypo. Although your FT3 is slightly low.
Your post is a little confused - or I'm just a bit foggy this afternoon - so I have some questions:
My blood test showed the peak on the 5th may
A peak of what?
I had a blood test 5th July, showed high end FT4
How high?
I'm still having hyper symptoms
What are these symptoms? Symptoms can be tricky to interprete, because so many of them can be both hypo and hyper.
I dont know when I count the timeline
A timeline for what?
Everything I see says 4 months, I see most people say 6months?
4/6 months for what?
What you are discribing does sound like a thyroid problem. The question is, what sort of a thyroid probem? There's absolutely no indication of hyperthyroidism - your TSH would be suppressed and your FT4 well over-range. But, you could have Hashi's, even with negative antibodies? Or, have you been saying that you've been diagnosed hyper and are taking anti-thyroid drugs? If so, the wrong antibodies have been tested. For hyper/Graves' the antibodies are TSI and TRAB.
Sorry for all the questions but just trying to make things clear.
Hi, so it's subacute thyroiditis the diagnosis.My b12 has always been low, it won't go up and stay up No matter what, same for ferritin and folate my base is b12 - 200, folate 4, ferritin 8 it never changes and when it does it just drops again, never had any symptoms was working 48+ hour weeks, running my home and raising 4 kids - never felt tired.
5th May it showed the peak of thyroiditis- high wbc, neutrophils, high liver enzymes, high calcium ect all back to normal 2 weeks later.
Free thyroxine level on the purple and white blood results I shared - 151nmol range 59-154nmol
Hyper symptoms- weakness, hot flashes, muscle twitches, anxiety, slight adrenaline still, red hot palms. Heart rate and BP is now normal thankfully. But they were high.
4/6 months is the length of time for subacute thyroiditis. I have painless thyroiditis.
I hope I've answered them ok. And thank you for replying 😊 the Dizziness also isn't so bad now.
So what has been done about your low B12? Have you been given B12 injections on a regular basis?
On what did they base the diagnosis of subacute thyroiditis, and what are they doing about it? Are you on thyroid hormone replacement?
Free thyroxine level on the purple and white blood results I shared - 151nmol range 59-154nmol
Are you sure that is a Free thyroxine? I've never seen an FT4 range like that. Looks more like a Total T4, which isn't very helpful. And it isn't over-range, anyway, so can't be classed as hyper. Plus your TSH was on the high side for that test.
All of those hyper symptoms you list could also be hypo symptoms. As I said, symptoms are tricky.
4/6 months is the length of time for subacute thyroiditis. I have painless thyroiditis.
Ah, ok, I see. That confused me a bit because you didn't mention subacute thyroiditis.
As I said, it could still be Hashi's, even with the negative antibodies, because some Hashi's people never have over-range antibodies. Have you had an ultrascan of your thyroid?
OK, so it looks like it's a case of wait and see how things pan out.
Myself, I have Ord's - which is Hashi's without the goitre - and I did have aggoraphobia, to go back to your original question. It's not nearly so bad now that I'm on thyroid hormone replacment, but as I said, I also have claustrophobia, so it sometimes balances itself out.
Date .................TSH ....... fT4 .............. fT3 ............................... TT4
Jan 2018........ 1.05.................................................................................
Dec 2018....... 1.37.................................................................................
Mar 2019...... 1.31 ................................................................................
Aug 2020....... 1.45 ...............................................................................
Oct 2022 ...... 1.03 ................................................................................
5th May '23...1.30 ................................................................................
19th May ..... 0.5 ..................................................................................
ist June ......... 1.3 ....... 16 [12-22] .....4.3 [3.1 -6.8]......................
5th July .........1.56 .......21 [12-22] ....4.9 [3.1-6.8] ........... 151 [59-154]
Hi Dizzy ,
so , any thyroid hormone (T4/T3) leaking into the blood from the thyroid (due to thyroiditis of any cause) , will ALWAYS show in the (T4/T3) blood results , it will show in 'real time'.. if the thyroid dumps loads of T4 into the blood , it will show on the T4 blood test that same day.
There are two kinds of T4 blood test, Total T4 , and Free T4.
Total T4 (TT4/ Thyroxine) = (eg. your 151 [59 -154] result) ...... this is a measure of the 'free T4' in the blood, AND the T4 that is 'bound' to thyroid binding globulins.
Free T4 ( fT4/ free thyroxine ) is the more useful T4 test to look at.
The highest T4/T3 levels from thyroiditis may not always be 'caught in the act' .. it is dependant on whether the T4/T3 were tested during the period of time they were highest .
T4 has a 'half life' of about a week in the blood .. meaning if we tipped one bucket of 'extra' T4 into your blood today and didn't add anymore , then at would take about 2 week for it to 'mostly' go away. and another couple of weeks for the last little bit of it to go away . We would see your fT4 result go up high as soon as it was in your blood , and fall again gradually as it went away.
You only have two lots of T4/T3 results, June and July .
the July ones are higher, they are not over range ... but this doesn't mean you wouldn't feel the effects of too much thyroid hormone if these T4/T3 levels in July were higher than your 'usual' ,
Its likely your T4/T3 were higher than this at some point previously ,eg in late April/ early May. (when your TSH was lower)
but unfortunately with only two sets of T4/T3 levels to look at we don't know what your usual levels of T4/T3 are when you are well.... so we don't know if 21 [12-22] is unusually high for you or not.
When levels of T4/T3 are higher than 'usual' for that patient, their TSH will be lower than their usual ..... ( your 'usual' TSH appears to be around 1 -1.4 ish)
However TSH is a bit slow to react to changes in T4/T3 levels , it can take a few weeks to catch up with any changes in T4/T3 , so sometimes results can look mismatched if T4/T3 levels have only recently changed.
You have one TSH result that is noticeably lower than the others (19th May 0.5 ) which is the one which raises suspicion of a thyroid problem , but we don't have any T4/T3 result for that test, or for the test two weeks earlier .
This is one of the problems of GP's only testing TSH without doing T4/T3 at the same time .. it makes it very hard to see what is going on with the thyroid hormones in real time.
So basically none of your thyroid results (TSH / fT4 / TT4 /or fT3 ) show any definitive evidence of thyroiditis , or even of any specific thyroid problem .. other than that one off drop in TSH on 19th may , and the slightly 'high normal' T4 on 5th july.
But these combined with your symptoms and other blood results have obviously convinced your Doctor that you have some form of thyroiditis .
You will basically just have to wait and see what happens next ,,, sorry that's not a lot of use to you practically , but that's how it is with thyroiditis especially if the numbers are not 'through the roof' which obviously makes thing easier to diagnoses ... a lot of thyroid diagnosis is frustratingly a case of 'wait and see what it does next.'
ps. the term "Sub-acute Thyroiditis" is usually used to define a painful form of thyroiditis (also known as De Quervains thyroiditis) ,... . so painless sub acute thyroiditis is probably the best term to use when trying to explain to people what you seem to have.
but even that term 'painless thyroiditis' could lead to some confusion because painless thyroiditis most commonly happens after pregnancy and usually has positive thyroid antibodies .. which yours clearly isn't.
some definitions/ details of various forms of thyroiditis here : msdmanuals.com/en-gb/profes... gb/professional/endocrine-and-metabolic-disorders/thyroid-disorders/subacute-thyroiditis
(see the list on the left hand side for other forms).
Hope some of that helps in some way .. really sorry you're feeling so horrible Dizzy
Hi so, my bloods were only done 2 months after I entered the hyper phases I'm guessing they had been higher as they gradually reduce.
My t3/t4 is usually 6.2 pmol/l t3 and 9.9pmol/l
The fact that I ran all hyper symptoms and ended up in bed for 5 weeks with a heart of 160+ high BP, adrenaline, dripping with sweat ect - is thyroiditis?? I haven't come on here to prove I have it. I've come to ask others there experience now please excuse me if I sound rude in anyway I'm not meaning to be. I've explained my situation, my bloods, my diagnosis.
With thyroiditis all levels go off the 5th of May- my liver enzymes were high, calcium high, white blood cells, kidney function down - all related to thyroiditis. not everyone has the same experience and not everyone catches it at the peak.
Thyroid levels can go a little off or a lot off - and return to normal and people still have symptoms me being one of them last year.
Hi the search facility on here is not the best , but there are several other people on here with experience of subacute thyroiditis so hopefully you should be able to find them . I've done a quick search here : healthunlocked.com/search/p...
Hope that is some help . I was in no way saying 'you don't have it' .i was just trying to explain your results to you in case you didn't know what they showed. Sorry if it came across as questioning the diagnosis .
out of curiosity , did you have a history of thyroid problems prior to 2022 , or if you have some other risk factor for developing thyroid problems ?... i just wondered why they have been testing your TSH regularly since 2018 , TSH is not usually done regularly if within range, unless there is some reason to be on the lookout for hypothyroidism developing.
Thank you, I appreciate that I have only found one other search on here.
Sorry, I've had a hard time with Drs with it all, I did'nt mean to come across rude or anything. I've been researching all this and looking into all, for the last 14months it's been tough.
I had thyroiditis in my last pregnancy which nearly took mine and my daughters life but no one told me it's only through looking at past medical records I've found it. My mum has hyperparathyroidism, one sister has a goitre and my other sister graves with hyperthyroidism (now in remission) I had no thyroid issues prior and was healthy before. But no one has mentioned anything to me.
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