Do you track your symptoms?: As someone who has... - Thyroid UK

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Do you track your symptoms?

As someone who has been actively managing Hashimoto's for three years now I have started to notice when I'm going through a flare up. For me, I start to become increasingly tired despite always taking medicine, vitamins, good diet and exercise. I'll lose a lot of hair in one day (usually just one time) and my brain fog is almost always constant. I takes a few weeks to subside and I carry on.

My question is - is it possible to track symptoms and catch the beginning of a flare up and somehow avert it?

Does anyone track symptoms as a way to anecdotally track overall health? I appreciate periodic testing is the only way to have an accurate picture but I it seems this is something that might be helpful as an additional step to track day to day.

Thanks,

Nacoya.

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Following!

I recently posted about my feeling that my symptoms were cyclical.

I find I am the same, I can be great, almost back to normal and then all my symptoms come flooding back!

Hoping someone else comes along with some words of wisdom.... 🤞🏻

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I concur I have noticed my symptoms are cyclical.

Just before my last period my throat swelled up as well.

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I think the first thing to do is define our terms. What exactly do you mean by 'a flare up'? Because I don't think everyone means the same thing. :)

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This is a good point. I actually searched for a term to fit what I was trying to describe and this seemed to be the closest to what I think is happening. Which I know is not helpful.

In my mind a 'flare up' is when, despite following generally recommended guidance on medication, diet, exercise, sleep, vitamins I feel bad for a period of time, normally a few weeks, then I feel fine again.

Fine for me is good energy, little to no brain fog, no major hair loss, no anxiety, no creaky voice, no pain in my legs etc. I still have dry skin and some other symptoms that never go away (yet, still working to figure things out). But overall - I feel healthy.

Bad is all the symptoms above, but energy, brain fog and hair loss seem to consistent during these period of time.

I will adjust medication, diet, exercise etc to see if anything helps. I don't know what has actually helped because I can't truly associate one action with an outcome.

So far, I have not tested during one of these periods to see if I needed to alter medication or something unusual was happening. I am thinking of how to cope with these periods and even more hopefully, to be able to predict them through accurate tracking of symptoms if possible. I imagine in reality this has to be a mix of testing and symptoms but I am wondering if anyone does this now and if so, does it help?

Thanks!

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In any other disease, that is what a 'flare up' would mean. But, with Hashi's, we don't talk about a 'flare up', we talk about a 'flare'. A Hashi's flare. That postposition 'up' makes all the difference. :)

What most people mean by a Hashi's flare is when the immune system attacks and damages the thyroid, and the dying cells deposit their stock of hormone into the blood, causing FT4 and FT3 to rise sharply, and therefore causing the TSH to drop. But, people tend to have hyper symptoms at that point - if they have any symptoms at all - not hypo symptoms. Your symptoms sound more hypo.

If you have suffered a Hashi's flare, and your levels are high, the best thing to do is just stop your levo for a few days, until you feel hypo again, and then start back on the same dose. Going to your doctor and asking for a reduction in dose can result in under-medication, because it will be hard to get him to raise it again. But, if you needed an increase in dose, it would be permanent, not just temporary. Your 'flare ups' sound temporary.

I don't think 'Hashi's flare' is a very good name, because it leads to confusion. People used to talk about 'Hashi's 'hyper' swings', which is more descriptive. But, when you're having one of your episodes, have you ever tried stopping your levo for a couple of days, to see if that helps? Just until you swing back to hypo?

I'm not sure it's possible to predict these swings, because they are haphazard and without warning. The attacks happen suddenly and swiftly, although the symptoms might take a while to appear. And I'm not sure there's anything you can do to prevent them. It's best to keep your TSH at zero, if you can, to minimise them - although some people find that that doesn't work, either. But, worth a try.

Some people will tell you to go gluten-free - are you gluten-free? Do you find it helps? The theory is that going gluten-free reduces antibodies. But, I'm not sure how that's supposed to help, because the antibodies increase after the attack, so they don't cause or carry out the attack, despite what some people believe.

I'm probably not being a lot of help here, but the sad fact is that I wasn't diagnosed until after my thyroid had been virtually destroyed, so didn't have the opportunity to study hyper swings with full knowledge of what they were. I just knew that suddenly, I would lose weight without doing anything for it, my hair would start growing, and I would have loads of energy. They were good times for me, rather than bad. But only happened about four times, and now my thyroid is dead. So… We're all different. :)

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Very helpful reply (as always 🤞🏻) greygoose but as discussed in othe posts, I would agree with Hashi-Monster and Nacoya, that I (we) seem to have hypo phases and symptoms, not so much hyper.

I personally can’t say that I’ve noticed feeling over medicated at all (at least not as part of this cycle) just that I feel well, and more energetic and motivated for a week or so, then I feel all my symptoms return again, usually for a period of around 10 days to two weeks.

Saying that, I feel like I’ve been going downhill for the last three or so weeks and I can’t identify why. My only thought is that the kids have been on holidays so it’s a bit more full on and my diet is a bit more “carefree” than maybe it would otherwise be. But I’ve had more sleep....

Who knows, every time i feel like I’m getting to know my pattern, it goes haywire again 😩

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No, not everybody feels hyper. Some people don't even realise there's anything wrong until they get a blood test, and their doctor freaks out saying they've 'gone hyper'. And as I said, with me, I just felt extra well. Then went back to being my normal, fat, miserable self. :D

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😂😂 I’d love to say “surely not” to your last bit but I’m so there!

Ok, I didn’t realise that. I definitely have spells where I feel (almost) normal, but more easily tired than before and then spells where I feel very undermedicated.

I wonder if mine is more of a hormone thing as I know mine are all off (despite dr saying they’re fine) as I have endo symptoms now and periods are a bit all over the place. Therefore I wondered if it’s more like a “nesting instinct” thing like you get when you’re pregnant, loads of energy going on!

It’s the only result I don’t have a print out of so I can’t see what my hormone levels actually were... which is weird as I’ve got all the others on one sheet 🤔

Kids go back tomorrow and I will return to the gp for up to date bloods.... boy, they mustve missed me over the summer! 😜

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Of course it's a 'hormone thing'. TSH, T4 and T3 are hormones. :)

What are 'endo symptoms'?

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😂 sorry, I meant sex hormones rather than thyroid ones for a change!

Endo being endometriosis. Not the other kind of endo... oh what a pickle! Sorry 😂

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Thank you so much for this response. Its helpful to understand what is happening and to be able to describe it in a way that is understood by everyone.

I have experienced both 'hypo' episodes and hyper. When I first started to medicate in 2015 I lost a lot of weight in a few days (dropped two or three pant sizes) without changing anything. I then put it back on, again without changing anything. It was very difficult to accept that my weight could change so fast. August last year I was on a hike for four days. It was a lot of energy expenditure but a lot of calories. I came back 5kg lighter. My pants were falling down. I always linked it to the hike but it seemed so much even with the energy expenditure. Earlier this year, another unexpected episode of weight loss. Unfortunately too, I have experienced unexplained weight gain. I just try to eat well, exercise and focus on health and acceptance :)

I wonder then that these episodes are part of my thyroid dying - at time under performing, other times performing 'better'. And given what you say above, there is no way to predict when this will happen (that we know of yet, anyway).

With respect to the question on gluten - I have reduced it. I have also reduced dairy. I feel sad thinking about restricting my diet to that degree. I am coming to accept though it might be needed. At the moment you could say I am experimenting with what helps me to feel well. So for most part I avoid processed foods, high GI foods and am mainly vegetarian (meat maybe twice a month). Vegetarian is a personal choice, I know it's not related in any way. I feel good on this diet. I am about to get tested again (next week) so I am looking forward to seeing if the changes I am making are helping or not. I feel better, but I guess the test results will be the evidence.

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I wonder then that these episodes are part of my thyroid dying - at time under performing, other times performing 'better'.

It's not your thyroid performing better. It has nothing to do with your thyroid's performance. It is the dying thyroid cells dumping their store of hormone. You thyroid will never be able to perform better because it is being slowly destroyed, a few cells at a time. So, after each autoimmune attack, there is less and less thyroid to perform.

With respect to the question on gluten - I have reduced it.

Reducing your gluten won't do anything. It has to be 100% or nothing. Did you feel that eating dairy was upsetting you? Do you feel better now you've reduced it? If not, then no need to reduce it.

I guess the test results will be the evidence.

I doubt it. I don't think that changing your diet will have any affect on the workings of your thyroid. How could it? I know that people say that cutting out gluten (but it has to be 100%) will reduce your antibodies, but I think two huge question marks hang over that idea.

1) How do you prove that your antibodies are reduced due to cutting out gluten? Antibodies fluctuate all the time, so just because you have a lower count at one point, doesn't mean they're not going to get higher again. Plus, the fact that as your thyroid is reduced in size, the antibodies reduce in number because there is less need for them. So, what - if anything - has gluten-free got to do with all that? Probably nothing. The only thing is, a lot of Hashi's people are gluten-sensitive, so stopping gluten improves their general health. But, there's no proof that it improves their thyroid health. I don't believe it can.

2) Even if you manage to get rid of all your antibodies, you will still have Hashi's, because the antibodies are not the disease. There are Hashi's people that never develop high antibodies, they are diagnosed Hashi's by an ultrasound when the damage becomes visible. So, why do we insist that people should try and reduce their antibodies? There is the mistaken belief that it is the antibodies that attack the thyroid. This is not true. What happens is that lymphocytes infiltrate the thyroid causing thyroglobulin and/or thyroid peroxidase to leak into the blood stream, where it shouldn't be. The thyroglobulin antibodies and/or the thyroid peroxidase antibodies are then activated to come in and clean it up, enveloping it and carrying it away to be destroyed. But, these Tg and TPO antibodies do not do the attacking, they just clean up after the attack. So, is it even desirable to reduce them?

I don't have any answers to these questions, but I do think they ought to be asked more often.

However, it's good that you are cutting out processed foods because they usually contain the three things that are bad for you : soy derivatives, processed oils and artificial sweeteners. But, if you are vegetarian, do keep an eye on your B12 and iron levels. I made the mistake - through ignorance - of ignoring them, and it made me very, very ill. :)

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