Can this still be my thyroid?

[HashisKate]

Hi everyone

Just at a very low ebb this evening and looking for some advice. I was diagnosed with autoimmune hypothyroidism in September last year. I was incredibly unwell at the time, my chief complaints being weight gain (although not massively), excessive bloating, digestive problems, freezing cold, extreme exhaustion. Anyway, long story short I begged for a blood test (or any test on earth as I was convinced I was dying!!) and my TSH was over 100. I was quickly put on Levo (Teva brand) and experienced a lot of the usual issues until I started to feel better reaching 100mcgs. I have always got on fine with Teva, although it’s true I have nothing to compare to. My last blood test was January, where my TSH was 0.67 (so they didn’t test T4) and I was feeling relatively well, although still getting my fair share of bad days. I was due another blood test in April, but this was cancelled due to covid. I have been unable to book a blood test since.

In March I had the flu, possibly the worst I’ve experienced and it took me around 6 weeks to recover. I felt ok for a few weeks but over the last month I feel horrendous, but the last few days I feel so bad it’s worrying me a bit.

My worst symptom is intense muscle aching, like a lactic acid feeling after just climbing the stairs, or raising my arms. It’s mainly in my calf’s, all around my knees, shoulders and arms. I’m exhausted, on edge, (Altho I suffer severe PMT so this could be confusing matters re: mood) and stiff all over.

I have bought a Medichecks blood test which I will do first thing tomorrow following all of the guidelines on the forum. I bought the one that tests T4, TSH, T3, b12, vitamin d and antibodies.

I had b12 done just before Xmas via Medichecks & nhs. I don’t know what my nhs result was only that it was ‘in range’ but my Medichecks active b12 was 62 and in the green, although I was surprised a little that it was that low considering my diet is very heavy in b12 rich foods.

Anyway, my big question today is, could it simply be that I’m under medicated again and need a higher dose of Levo? Is it possible to have such severe symptoms only 25mcgs under the best dose? Could it be something else?

Common sense has told me I know I should have just waited for blood results before posting, but I’m at a very low ebb this evening. I’m very tearful at constantly thinking I’m making progress only to have symptoms creep back just as severely and on the other hand I’m worried that being a little under medicated wouldn’t make me feel this bad .

I’m really sorry for such a long post. X

[Lalatoot]

Relax. Things will be OK. You need to see what the blood test says. It will guide future action.

Being ill has thrown your system out of balance and our systems need extra time to recover.

It may be that hashis has killed of another bit of thyroid and you need a dose increase or that absorption or conversion is poor at the mo.

All you can do is sit this dance out till you get your results.

[HashisKate in reply to Lalatoot]

Thanks 😊 I know all I can do is wait, it’s so hard though as I usually only post here after weeks of hoping I turn a corner so always fairly hysterical the time I land 🙈☹️ I haven’t been unwell since March, so wasn’t thinking that could be related now.

[Lalatoot in reply to HashisKate]

Things work in slow time in thyroid land. So if your system was knocked off kilter in march it could still be playing catch up. Or if it led to an autoimmune attack on your thyroid you could now be undermedicated.

[HashisKate in reply to Lalatoot]

I sort of hope I’m under medicated so it feels like there’s a chance I could get better. I just worry because I’m on the correct amount of Levo for my weight. If I only need 25mcgs extra would I really have such bad symptoms? Impossible questions to answer I know!! Fearing there was something seriously wrong with me for years has left me with quite a prominent health anxiety 😭

[Lalatoot in reply to HashisKate]

We don't dose by weight. Dosage should be by hormone levels and symptoms.

Even 25mcg can make a big difference. I spent 4 years undermedicated. I know how awful it can be.

[HashisKate in reply to Lalatoot]

Thank you 😌 it’s a relief to hear from people who have been or are going through the same. I’m so sick of feeling so awful such a lot of the time. X

[Lalatoot in reply to HashisKate]

Fully understand. I began to blame levo for my continuing ill health so much so that I all but stopped it. Big mistake. If you look on my profile at posts you will see what I did to myself.

[HashisKate in reply to Lalatoot]

I’ve had a read and sounds like you had an awful time. I’m glad for you that things have improved. I hope I get there one day, it’s been a long few years.

[SlowDragon Administrator]

What vitamin supplements are you currently taking?

If taking any supplements that contain biotin you need to stop these a week before all blood tests

Make sure to do test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Only test Monday or Tuesday morning and post back via 24 hour tracked postal service

[HashisKate in reply to SlowDragon]

I don’t supplement regularly with anything at the moment. I’m going to do the fingerprick first thing tomorrow, hopefully the results will be quick!

[SlowDragon Administrator in reply to HashisKate]

Should be back Wednesday/Thursday

[HashisKate in reply to SlowDragon]

Looks like I messed the test up. I put the lab form in the sample bag. When I realised I shouldn’t have (brain fog is awful!) I opened the bag to take it out, without realising the seal would then say ‘STOP’ all over it ☹️ I suppose it’s a non tamper measure or something. So I re-sealed and sent back but they’re not going to test it are they 😢 can’t believe it...it took me so long to bleed enough to fill the line even following all of the advice I found on here. What a waste of time.

[SlowDragon Administrator in reply to HashisKate]

Probably will be fine

[HashisKate in reply to SlowDragon]

Fingers crossed.

[Gingernut44 in reply to HashisKate]

Why don’t you give them a call and tell them what you’ve done, they are very helpful on the phone

[HashisKate in reply to Gingernut44]

I emailed them but they didn’t read it properly so the reply wasn’t very helpful. I’ll wait and see and hopefully all will be well x

[Gingernut44 in reply to HashisKate]

Ring them, they won’t mind 😊

[HashisKate in reply to Gingernut44]

The reply basically said wait and see. There’s nothing they can do about it regardless they’ll just let me know if the lab refuses to test it. so I don’t think I’d achieve much. Thanks though 😊

[Gingernut44 in reply to HashisKate]

Ok ☹️

[Daffers123 in reply to HashisKate]

They usually send you a new kit for a small fee

[Localhero]

Hey HashisKate

So sorry you feel like this. One question: could the flu in March have been COVID? I’ve been reading some stuff about what they’re calling “long COVID”, where about 10% of people who had the virus take ages to get better.

theatlantic.com/health/arch...

Even if it was not COVID, a bad viral infection can cause post viral fatigue sometimes if our immune systems are compromised, which can happen if our thyroid hormones aren’t optimal. I had glandular fever some years ago and when my thyroid started to fail the EBV virus reactivated. It means I’ve now a double-whammy to know and treat what’s causing which symptoms. So, as well as making sure your levothyroxine is on point, I’d perhaps suggest you read up on how to support your immune function. For sure, make sure your Vit-D, selenium etc are good, as advised on this forum. I also take NAC, which is good for inflammation, avoid gluten and dairy, and try to eat per the autoimmune paleo protocol as much as I can. This all seems to be helping, although it has taken time.

[HashisKate in reply to Localhero]

Thank you for taking the time to reply. I was diagnosed with Covid (without a test) as had all of the symptoms, but when I had an antibody test some months later, I didn’t have any at all. Although there has been a lot of media speculation about the antibody tests, im quite happy that based on my results I didn’t have covid, just a very nasty flu (despite the full jab 😭)

I’m low gluten diet, but not supplementing at all at the moment. Am definitely going to start though with all the recommendations