I've posted several times lately and I just wanted to ask for advice on thyroid related issues.
I had COVID 3 times from June 22 - Jan 23 and was symptomatic each time. I did have a diagnosis of Fibromyalgia in 2018 but had been feeling a lot better in 2020 until I got COVID. Above I have documented various tests I've had over the past year or so - my TSH has been a bit low-ish in range until Feb this year where it has dropped significantly bit t4 & t3 still just in range (or just over).
my most results got a diagnosis of hyper (potential Graves but I know this can be incorrect until appropriate testing is carried out) - I started a course of Carbimazole but appeared to have a bit of a bad reaction and stopped after a week.
How important is TSH in terms of symptoms etc? I know it is a 'signal' and not a hormone as such...?
If my t3 & t4 are in range, could my TSH eventually rebalance? would the TSH alone cause symptoms?
Also, is there a lag between symptoms and blood tests? Or does this just apply to those who are medicated?
I am currently not officially diagnosed or medicated and I am awaiting my appointment with endo where I wil have TSH receptor antibody tested (plus others)
Vit D, B12, are in a good range. Ferritin & Folate in range (although folate is low-ish in range).
I’ve been having some intermittent tenderness in my neck / thyroid & symptoms of heightened anxiety, very emotional and depressed. Not leaving the house or getting dressed properly 😔
I just want to try understand what is going on with me and make sure I ask all of the right questions with the endo and hopefully get back to feeling better soon.
Many thanks everybody
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Heybella
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TSH is a hormone: Thyroid Stimulating Hormone. But it is used to send a message to the thyroid from the pituitary. It also stimulates the deiodinase which are responsible for conversion of T4 to T3. But, the TSH itself does not cause symptoms. It is mainly T3 that causes symptoms when too high or too low.
Also, is there a lag between symptoms and blood tests?
Oh yes, quite definitely. You can start having symptoms long before your labs reach a point where they catch the attention of doctors. Doctors are fond of saying that you wouldn't get symptoms with a TSH as low as 2, but plenty of people on here can tell you that is rubbish. Because although the TSH doesn't cause symptoms, you can have a TSH of 2 with very low FT3, which they rarely test. The TSH can be a very bad indicator of thyroid status, despite what doctors think.
So many things can cause the TSH to vary, including the time of day. Have you always had your blood draws before 9 am, when it is at its highest? Do you drink coffee before the blood draw? Cafeine can lower TSH, as can low nutrient levels. When you say that your nutrients are 'in a good range', what exactly does that mean? It doesn't sound the same as 'optimal', which is what we need.
Thank you so much for the reply greygoose - that does makes sense about TSH.
I wondered whether you could see the table/ image I posted - I can see my TSH has been on the low side for the last year but T4 & T3 levels not so much (until recently).
I’ve attached my latest levels for ferritin folate and b12
I also take a D3 & K2 supplement (levels last year were 95) but realise this is not recent!
No, I'm afraid I can't read your results above, much too small. Nor can I read the nutrient results, the images are distorted.
Exaggerated anxiety is very likely to be hypo related. It's a symptom, not a disease.
Are you taking magnesium with your D3? The two work together so if you're not taking any, it will deplete your magnesium and that can make you feel very bad, as well.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
I had been taking a b vit complex by vitabiotics in Nov - Dec last year and have occasionally taken an ultra iron sustained release with B12 and folic acid with Vit C by vitabiotics (but I think it upsets my stomach a little)
That vitabiotic sustained release iron made me really ill. i think because it was sustained release it blocked my absorbtion of thryoid hormones all the time. I has to increase my thyroid hormnone intake three fold for a while just to stop me falling over. Avoid that stuff at all costs.
You do realise that Free T3 and Free Triodothyronine are the same thing, don't you? Same for Free T4 and Free Thyroxine.
I cannot imagine why you got 'diagnosed' with hyper - especially not Graves' - you TSH is low but not that low. And your Frees are basically low. If you were hyper they'd be double/triple that. And, if your TPO Antibodies are positive, you have Hashi's or Ord's. Which fits better with your results. As for the TSH, once it gets below 1, it's very unreliable. So, ignore that. And squash any doctor that tries to diagnose or dose by the TSH alone.
By the way, it doesn't matter what the actual antibody level is, all you need to know is if they're positive or negative. They fluctuate all the time, it doesn't mean anything.
But, I'm wondering if there's not a touch of sluggish pituitary there. The TSH is always low compared to the Free levels. So, I think your next step should be to get your cortisol tested.
Thank you so much greygoose - that has reassured me lots 😊
I did think about those being the same thing but wasn’t sure! 😊
I have engaged with a private endo through work insurance and one of the tests she has mentioned is 24 hour urine collection for cortisol excretion on two separate occasions - so hopefully they might shed some light on things?
Thank you - the replies from you and SlowDragon are really appreciated. I think I’ve probably got myself quite worked up about things 😔
Most recent vitamin D was last year at beginning of May so perhaps not much use now - 90nmol/L (- 50 - 250 R)
I will look to order the b vit complex live suggested 😊
I’ve not had an ultrasound but I will request when I see the endo (she has also suggested Vit D, serum haemantinics and urine collection for cortisol to start. As well at full thyroid panel with TSH receptor antibody).
Thank you both for replying over the past couple of weeks. I think I have perhaps worked myself up into a bit of a frenzy about everything - so your replies and knowledge are very much appreciated
I had a celiac test in May 2023 which was negative:
Anti-tissue transglutaminase level
TTG ABS (IGA) < 1.9 CU 10.0 - 19.91;
I have been trying to eat gluten free since the positive TPO test - but I’ve not been totally strict. I did cut out all bread, broiche, pasta etc and I buy gluten free bread and pasta but actually don’t eat lots of it. Over the past year; I’ve been trying to diet because of a sudden weight gain late 2022/ early 2023 - so lots of chicken, protein yoghurts, Greek yoghurts, eggs but I would say not completely gluten free.
I’d noticed a moderate improvement I’d say in terms of bloating and digestion - I’d sometimes find if I ate bread/ pasta too many days in a row I’d have stomachache and constipation or bowel issues…. Then in December I started to suffer with what seemed like an IBS flare with pain in lower abdomen & then GERD type symptoms (I did wonder whether the supplements had caused this) - this is what prompted the blood tests because it went on for weeks. The pain has now gone but digestive system still not completely back to normal
I will definitely be more strict on the gluten free front…
I will hopefully have a date for appointment with private endo by end of next week
I also have another blood test at the docs tomorrow (this was booked weeks ago, I guess to check again on thyroid levels but figure I should still go to see how they’re looking now).
Just few other things to consider….have you considered if you now have Long Covid … my daughters been on a program for quite a while … she’s a psychologist and has a very stressful job and her tiredness anxiety along with more physical symptoms arose after Covid… she has to have far more rest days than before covid… she got it twice but it was the first bout that knocked her off her feet.
Other than this possible thyroid condition to be explored have you any other possible hormone problems pre/peri/post menopausal which can exacerbate many things.
Just out of interest did you take the coeliac test whilst going gluten free as you do need certain amount of continuous gluten in diet to get an accurate result… see coeliac U.K. for advice if unsure testing.
I’ve definitely thought about Long Covid a few times in all honesty….!
I was diagnosed with fibromyalgia in 2018 (this followed a bad bout of anxiety & some trauma) - it showed as days/weeks of fatigue, flu like feelings, swollen glands etc. I think a stressful job contributed to this as well as insomnia.
but I actually started to feel a lot better during 2020 /2021 / 2022 - not saying it is a cure all, but I started a low dose of citalopram which really helped with all of the symptoms especially anxiety and sleep.
It does seem to be since COVID, things just aren’t right again.
I also considered perimenopause as well - I’m 39 (40 in a couple of months) so it’s certainly a possibility!
I had the gluten blood test whilst I was still eating gluten (I used to eat quite a lot of brioche and pasta!) - I have just had the blood test.
Thank you for replying - it’s really good to talk to people
I hope your daughter continues to improve and the program really starts to help. Covid certainly has a lot to answer for 😔
Glad to hear re proper testing you’ll be amazed how many don’t go about coeliac testing properly even GPs mess up not checking this.
Long Covid for my daughter is chronic fatigue now, her breathing problems were initially biggest concern but that got better over the first year her X-rays were clear but we know so much more now and various proteins that maybe alter they found same proteins in those that died and in some individuals with long Covid so this is possibly causing people to get long Covid and with that new information they maybe be able to give something to reverse eventually.
As we know Autoimmunity can be caused by multitude of things some…infections, virus even medication and trauma and stress along with genetics of course.
Obviously my daughter is well versed on mental health but doing work of 3 people isn’t helpful as NHS are so stretched, so impacting her recovery somewhere but she is very much better than year ago… her hormones are out of whack still.l she practices yoga which has helped but easily gets tense and that causes her to spiral out and can are few days to get back on track.
Thank you CoeliacMum1 - that is really informative and has definitely given me stuff to think about.
I really hope your daughter continues to improve - it sounds like she is on the way but it is so hard to put boundaries in, particularly with work - or on those days when you do feel a bit better, you want to try make up for the fatigued days and can just push yourself too far.
Covid really does have a lot to answer for doesn't it 😔
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