Still so very confused

[Bambini83]

Have posted previously and received some great advice.

I feel that I’m really no further forward and so confused. Still having various ongoing symptoms. Primarily fatigue, headaches, sensitivity to cold, visual problems, aches and pains, tingling sensations, bloating. Anxiety and instances of tachycardia. History of minor illnesses/viruses since late 2019.

Basic overview - 2 growths on thyroid. Imaging and cytology showed no concerning features. Initially told 1 cyst, 1 nodule and lobectomy likely for cyst. Later transpired the surgeon had ‘misread’ scan and both are nodules. Advised NFA and see him again in 6 months. He said none of my symptoms are thyroid related. I’ve had a tight uncomfortable throat on and off and get neck pain.

Previous private bloods showed slightly elevated TPO antibodies & low end vit D & ferritin. Have been working to improve those.

Paid to see private endo who said it’s a fluctuating situation (true as I’ve had bad phases and worse). Suggested adrenal fatigue, probable ME, possible thyroiditis. Advised my GP to check receptor antibodies and female hormones with thyroid panel every 3 months. Advised on diet and supplements and stress relief/pacing etc. GP dismissed receptor test so I have arranged this privately. I’m also going to do a full thyroid panel myself in next couple of weeks to check on vit d and ferritin apart from anything else.

I’ve attached what the GP did test. It would appear my TPO antibodies have reversed? I’ll get a better idea when I do my medichecks test but can I assume this has been diet related? I’ve cut out gluten and dairy. Trying to eat 6-8 portions of fruit and veg a day. Or is it a case they were so low grade they weren’t really noteworthy anyway?

Also, my morning cortisol was elevated. I can’t lie I had a huge adrenaline surge on entering the surgery. I always do now as I’ve had such bad experiences so far. I appreciate I need to get a handle on it but I can only assume it’s skewed my result? My confusion here would be that the endo suggested adrenal fatigue would mean my morning cortisol would be low or that’s how I understood it and it now seems that isn’t the case? I’m going to order a salivary test to do at 4 points through the day from home to get a better idea.

I guess I’m reaching the stage of accepting that my diagnosis is in fact CFS/ME. I can’t help but feel disheartened by that ☹️To be clear I’m not wishing thyroid disease on myself as I know that’s no walk in the park. I just feel so down and like I’m never going to get my life back.

Thanks to anyone if they’ve read all that!!

[SlowDragon Administrator]

Recommend repeating full thyroid and vitamin testing soon

Previous post shows low Ft4

healthunlocked.com/thyroidu...

[Bambini83 in reply to SlowDragon]

Thanks Slowdragon..I’ll post again when I do full thyroid profile. My lower end FT4 confused me at the time. Endo said it was ‘weird’ but nothing else!!

[tattybogle]

I understand, i know how it is to be hoping for a 'reason ' for what is happening to you.

In truth, whatever the cause ,it is happening to you , and even an unequivocal thyroid diagnosis and replacement hormone treatment is not enough to fix some of us.

I do have a diagnosis of Autoimmune hypothyroidism, but Levo only partially helped and when i was still not myself 5 yrs later, they say maybe CFS/ME as well.

No one is questioning the hypo diagnosis, which is a relief, but the fact is whatever it's labelled , i have to learn to deal with what's happening, and improve what i can, and accept what i can't change.

The ' ?CFS/ME' label is the hardest part of this for me, for all sort of reasons. But try and see past how you feel about it.. the fact is that whatever is wrong with people like us us it's hard to find the cause, and hard to find the right treatment or lifestyle changes to improve the situation to be as good as we can be .

CFS/ME is just a fancy was of saying 'we don't know', but does not mean 'it's not real', as plenty of 'long covid' sufferers are in the process of finding out.

So take the best of the help that CFS/ME knowledge can offer (pacing yourself, don t push , stop before you want too, try and gain a sustainable level of regular activity rather than boom and bust)

And take the best of what thyroid knowledge can offer, which at the moment for you is that you should keep checking it frequently (and not get disheartened, everyone is very individual in their thyroid levels in health, and antibodies and thyroid blood tests do fluctuate. ) Follow the advice about optimising nutrition and supplements .

You are just as unwell as anyone with an unfixed thyroid , whatever label it is given, so be kind to yourself and don't give up on the idea of getting your life better than it is right now.

And on some level, accepting that nobody knows why... yet , but it is still very real....

might help a bit.

Just some wandering thoughts from someone who knows how it feels.

xx

[Bambini83 in reply to tattybogle]

Thank you tattybogle for such a sensitive and sensible post. I know it’s is the not knowing that’s been part of the problem. It all just feels so hopeless at times. It definitely helps to ‘speak’ to people who understand so thank you again ♥️

[tattybogle in reply to Bambini83]

You're right... the not knowing is a big part of it.

I think that more damage has been done to my life by the self doubt, and implied "it's all in your head" from GP's and consultants fobbing me off for years, than the loss of physical stamina itself has caused. I see other diseases where people have much less to deal with, for much shorter times, but because their disease is acknowledged as real they get plenty of emotional support.

I wish they would just be more honest and say "we don't know", rather then make us feel like we are imagining things. And i think i may have fared better over the years if this is what they'd said to me.

It's very important to protect yourself against the "perhaps it's all in my head , and i'm just useless then" thinking..... when it comes along , boot it out pronto Trust yourself more than you trust Doctors, cos they don't know half as much as they'd like you to think they do.