Flares of fatigue and brain fog

[BestWatcherInTheUnit]

For about the past three years I’ve been experiencing flare-ups of fatigue and brain fog, and it feels like they’re getting worse.

It’s starting to really affect my life. When I feel “bad”, I need two naps in the day and still can’t concentrate properly. I’m a lawyer, so I need to be able to think fast and usually this is fine. However, when I have these flare ups I make stupid mistakes and take ages to do anything, which makes me worry about holding onto my job. It also makes me very frustrated and bad-tempered. Today I had to take a nap at 11am for 90 minutes because I couldn’t keep my eyes open and then couldn’t concentrate on a simple draft letter which took me all day. I felt like I could have slept all day instead. It also makes me very clumsy - I knock stuff over and misjudge space badly, walk into doorframes etc. It basically makes me feel completely useless.

I also get random pains - there is a particular part of my scalp where I sometimes get a creeping pain that’s hard to define. I tried migraine medication (it is only on one side of my head) but it didn’t help. I also sometimes get random stabbing pains.

I also used to have a really good memory until this started, but now it is terrible. I put that down to having a stressful job and also being reliant on smartphones, Google etc. but I wonder whether there is more to it.

I have Ehlers-Danlos Syndrome, so have been putting it all down to that, but I don’t actually have that many problems with joint pain or the classic symptoms - really the fatigue is the worst and the most frequent thing. The brain fog episodes are less frequent but they are really debilitating.

I would love to know what is causing it so that I can sort it out, I eat well and do a sensible amount of exercise, and am a normal weight. I had full blood tests last December which came back fine except for low vitamin D and slightly high TSH (6.2). I took a vitamin D supplement and tried to have a healthier lifestyle, and in June my TSH was 5 and vitamin D levels were good. I know that fatigue is a symptom of hypothyroidism, but I don’t have ANY other symptoms of that. My hair and skin is fine, as is digestion and periods, and I am naturally slim and don’t find it hard to lose weight. I gained a couple of pounds on holiday in August but it just disappeared when I got home and went back to my normal routine. The doctor said in June that my TSH could be “normal for me” and said I would only need to think about medication if I got other symptoms besides fatigue.

I have an appointment with the GP on Monday to talk about it, but I was wondering if anyone had any advice or ideas about what it might be.

Oh and get tested as early in the morning as possible.

@SirVixofVixHallI I did also have the antibodies. My last test results were TSH of 5, T4 of 15.2, T3 of 4.8 and thyroid peroxidase antibodies of 86.2.

I had the test first thing in the morning.

That isn’t a high antibody result I don’t think, but do you know your ref range ?
Having antibodies plus a higher TSH plus symptoms means that your Thyroid is struggling, and will get worse. Your GP should let you try a low dose of thyroxine, 25mg, and see how you get on.
Take vitamin D, make sure your B12 and iron are also within range as all these have an impact on thyroid.
With active thyroid disease you want your T4 to be in the top third of the range and your TSH to be at the bottom end of normal, around 0.5 to 1, to feel well.

@SirVixofVixHall ref range is apparently 0-34 for antibodies, so they are high. I discussed with my GP, and I am getting another thyroid blood test and then we might try medication if levels are still out. She said it doesn’t signify that I don’t have other symptoms - fatigue is enough, and people don’t always have weight gain etc.

Yes, they are really high then ! Mine were in the hundreds, maybe a different ref range , that was what made me unsure.
So you have Hashimoto’s thyroiditis, don’t get fobbed off being told your levels are normal. They will almost certainly still be out a TSH over 2.5 is a sign that your thyroid is struggling, and yours is well above that. I felt ghastly when my TSH was at your level so I sympathise. As it is an auto-immune condition you may plateau for a while, then have another flare-up and need increasing amounts of thyroxine. My dose has had to gradually increase as my thyroid gets more damaged.
You may find that even on medication you still feel tired or spaced out, particularly at certain times of the day. Auto immune disease is tiring in itself. Take thyroxine on an empty stomach first thing in the morning and don’t have anything to eat or drink for at least twenty minutes to allow it to be absorbed properly.

Thanks @SirVixofVixHall another chronic condition to add to the Ehlers Danlos Syndrome!

I will see what my new bloods say but I bet it won’t have gone down. Incidentally I did manage to decrease my TSH from 6.3 to 5, and antibodies from about 132 to 86 with just lifestyle changes, which is fairly positive. I suspect I will need to focus on those alongside medication.

@SirVixofVixHall just got my test results back and TSH is now down to 2.62! But antibodies still around 80. Not sure what to think now...

Vitamin D, B12 and iron all well in range

Did you rule out hormones?

Over 2.5 is the point where I start to feel tired and spaced out. What was your T4 like ?

My levels were up and down for a few years but the basic trajectory was upwards. Get it tested again in six weeks maybe ? Or you can get a private test at any point with medichecks, blue horizon etc.

Free thyroxine was 16.6

Just out of interest, what was your b12 level? The ranges are very variable in this country and a lot are set very low at a number at which you can definitely get symptoms.

B12 deficiency can cause lots of neurological symptoms, I used to get crawling sensations in my head and lots of nerve pain. Not to mention the crippling fatigue, brain fog and 'losing' words. I always felt like I could just go straight back to bed as soon as I got up, even if I'd had a good nights sleep.

@Hazelmazel B12 was 150pmol and the reference range was over 35 so that seems ok

Your thyroid is fucked.

You’ve got Hashimoto’s. I feel best with my TSH hovering below 1. Find a doctor that’s happy to treat your symptoms, as well as your numbers!

So your T4 was roughly in the middle of the range ?
I would get tested again fairly soon. First thing in the morning.
Other common symptoms are palpitations, chilliness, a sort of blank inertia ( this is my main one, then I muddle up words and just feel horribly woolly headed) . Some people get more tearful or grumpy.
If on your next test TSH has risen again then I think you should ask your GP to give you a trial low dose of levothyroxine.

am naturally slim and don’t find it hard to lose weight.

It's a bit of an urban myth that you put weight on.

You can gain some water retention but I actually weighed under 8 stone and looked emaciated when I was diagnosed with hypothyroidism around 23 years ago.

I have hypermobilty and have also always found it very easy to loose weight. I've never put on weight when I'm hypo.

You are hovering around subclinical hypothyroidism and it might be fluctuating a bit.

@BestWatcherInTheUnit by the way, if you wanted to conceive, over 2.5 tsh could trigger a low dose of thyroxine, especially with those other scores.
Tsh has to be lower than that for proper fertility.

which makes me wonder why it's not that anyway but hey ho

Most people do put on weight with hypo. My dd hasn’t, but I did, and so did my Mum. I was effortlessly thin my entire life until my thyroid disease.

I think it may also be age? I was only 20 and actually lost weight and shook when holding a fork once. Long term hypothyroidism can cause muscle wastage too.

But I wasn't eating much as had no appetite. I find it a little harder to lose weight that I used to in my 40s but still only a few pounds.

www.btf-thyroid.org/thyroid-and-weight-the-science

There's a shitty interplay of hormones around menopause that make both controlling thyroid levels harder as well as weight gain and other delights.

Low thyroid hormones also upset menstrual cycles and fertility so it's a bit of a game of tennis back and forth trying to get the right balance.

Hmm. Maybe it was a duff test? My appointment was 9.30am, earliest i could get it.

I am not sure my GP will medicate with my TSH as it is now. She wasn’t keen when it was 5...

Goodness, my TSH was 4.5 and I felt dreadful. Brain fog, tired etc. My BMI is 19 so definitely not overweight!

Rare/near impossible to concieve with TSH above 2.5. I was eventually diagnosed by a fertility check, they immediately started me on levo. I felt better within the c. 12 weeks it takes to work and concieved first try, my TSH was around 1. I feel OK when it's around 1 or 1.5.

Post your test results on the thyroid forum on Health Unlocked, it was a godsend to me.

Good luck!

Are you taking anything with biotin in? Multivitamin or something like berocca?

These comments are interesting reading, my TSH is always over 2.5 and has been up to 4.5. And my thyroglobulin antibodies reading is also always high. Multiple GPs and a haemotologist all think it's totally fine.

Anyway, was that an active b12 test you had Best? Otherwise that range seems strangely low, it's usually around 150/160 as the lower end of the range. Anything under 250 could potentially be causing issues.