always poorly?! Hypothyroid

[Ceer]

I have just been diagnosed with autoimmune hypothyroidism

But I am constantly POORLY! I feel like I am catching a bug/flu every other week! My energy levels are on the floor

Does anybody else feel like this?

I don’t really understand the impact the condition has on my overall immunity, is there a link?

I have tried to look online but I can’t seem to find anything?

Any help/tips/answers would be amazing

[greygoose]

Hi Ceer, welcome to the forum.

Feeling as if you're constantly coming down with flu is a typical hypo symptom. I don't think it has much to do with your immune system because you aren't really coming down with flu, that's just the effect the disease has on you.

Thyroid hormones are needed by every single cell in your body to function correctly. So, if you are hypo - which means that you don't have enough thyroid hormone to go round them all - then symptoms can occur anywhere and everywhere.

Have you been put on thyroid hormone replacement yet?

[Buddy195 Administrator]

Welcome to the forum Ceer

So we can offer better advice, can you tell us more about your thyroid condition, eg when you were diagnosed, ongoing symptoms (other than tiredness/ flu like symptoms you mention), current medication & dosage, plus blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

Many members here (myself included) will testify to having many adverse symptoms before thyroid medication and key vitamins were optimised.

Keep posting & asking questions. We are a friendly forum & are here to help! 🦋

[thyr01d]

Hi Ceer, I've been wondering about something similar. I'm one of those people who gets a chest infection after a simple cold, and then feel awful for weeks. I read recently that the chest infection is triggered by irritation then inflammation caused by our own mucus. It made me wonder if this is an autoimmune response as well. To cheer you, most of us feel much, much better once properly medicated. Good luck.

[Obsdian]

Feeling like the start of a cold before I realize it's a cold is definitely a feeling I get a lot as part of my fatigue... But I actually rarely catch things going around.

[FallingInReverse in reply to Obsdian]

Well said! Pre diagnosis and pre treatment I was convinced I was getting chronic sinus infections/headaches. I went to lots of doctors and tried everything.

Now, 10 years later and 2 years into treatment I know it was just early early hypo.

I have actually been remarking to myself just recently that despite living life, going public places, public transportation- even getting a little too little sleep (a real day killer for me - I’m useless when I get even an hour or two less than I need) figuring the lingering fatigue would correlate to my picking up some bug.

But I haven’t.

So I give credit to my near-optimal Free Ts… and my optimal D as an immune booster probably helps too.

[klr31]

Yes, there is a link. I caught no end of viruses before I was optimally medicated. It does get better so hang on in there.

Karen

[Ceer]

hi all,

Thank you so much for all of the replies!

One of the responses asked for my test results and reference ranges - ranges in brackets

My TSH is 7.89MIU/L (0.55 -4.78)

Free T4 9.6pmol/L (11.5-22.7)

thyroid peroxidase antibodies >1300 ku/L (<61.0)

I don’t get my T3 tested

I have been medicated around the last 10 years on levothyroxine in different doses over the years.

It was only recently for the FIRST TIME EVER my GP decided to test my antibodies! I’ll add I have been under the endocrinology team since I was diagnosed with “hypothyroidism”. It’s only now it’s been diagnosed as autoimmune.

I currently take 125mg of levothyroxine daily and get blood tests every 6 months to check the dose is still correct.

However I have always suffered from the cold/flu symptoms every other week, and when I do get a cold it quickly becomes a chest infection

I had a period last year where I suffered with a headache constantly for months and had MRI scans and nothing ever came back abnormal

I appreciate all the comments saying once medicated it gets better, probably my own fault for not mentioning I am already medicated - but it really hasn’t for me, the last 10 years I’ve suffered, and it’s beginning to take a real negative affect on my life and my work

[FallingInReverse]

You are quite under-replaced, it’s no wonder you feel like garbage.

What are your options to ask for and get an increase in your Levo dose?

If the doctor who knew you had a TSH that high and a FT4 that low sent you on a wild goose chase to find out why you had headaches, then it’s likely you’ll need a good strategy to get the appropriate level of Levo, as if they knew anything about it, you’d have an increase already.

The broad and general guidance is 1.6 mcgs Levo per kg of body weight. It’s an average and we are all different, but I bet you weigh more than 1.6*125

Ps, I suffered from headaches for 8 years. Diagnosed 2 years ago, and finally close to optimally replaced. Headaches are now rare.

[Ceer in reply to FallingInReverse]

oh my dose was literally just increased about 3 weeks ago from 50mg to 125mg😬 and my blood results were after this! and even at that, my gp wrote to my endocrinologist for them to increase my dose and that’s what they put me at!

I know the NHS is under extreme strain at the minute, but both my gp and endocrinologist are pants! Whenever I call the doctors when I’m feeling extremely poorly (I don’t call for a common cold, but when I feel really really poorly), I’ve always been fobbed off with “it’s viral nothing we can do” before they even see me so I stop calling,(this was before the autoimmune diagnosis) but then moan when I do see them that I don’t inform them of how sick I get so often, I can’t win!

Don’t get me started on the endocrinologist, lucky if I get an appointment every 2 years by the time they cancel and reschedule (supposed to see them every 6 months according to them) I have my blood work done for them and they never mention my thyroid (always phone appointments).

I’m just so over feeling so rubbish all the time, it’s really getting to me now.

[FallingInReverse in reply to Ceer]

Ah yes I now I see your follow up post.

Bottom line… welcome to the forum. You are about to feel more camaraderie with us fellow forum mates , and about to learn the equivalent of a thyroid specialist medical degree just by reading these posts and the advice you get from the collective wisdom of us fellow hypos!

Jaydee pointed out how you need to wait 6-8 weeks after a dose change before you test again.

Also - I hope you’re ok with that huge increase!

[Ceer in reply to FallingInReverse]

I’m extremely grateful for all the comments and advice. It’s crazy to realise how uneducated I am about my condition, what’s best for me and what not to do/take.

I have had large increases and decreases over the years with my Levo, it’s only recent that i had my antibodies tested and that I started to look into it a bit more, but google doesn’t have a lot of information, so nowhere better to learn than from other people going through it too!

I haven’t ever had an issue with the dose change, I don’t tend to feel any different between smaller and larger doses. Maybe I do, but I don’t actively notice any difference