I'm just wondering if you can give me some idea of your experiences of flares. What happens/ why/ how to best treat etc?
I have been very fortunate and after 4 years of under treatment, I finally found comfort with dosage and added vitamin d. I've felt wonderful since Jan 2019.
This last week however I've noticed increase fatigue and today I've got fatigue levels that have my eyes drooping and my muscles and body aching. I haven't had any change in diet or stress or work or anything. I also feel like someone has put a rubber ring around my neck and pumped it up. It feels tight and bloated.
When I saw my endocrinologist he said that when I was optimally treated and had deficiencies addresses there should be no reason for me to have fatigue or muscle aches.
Can anyone advise how or why I have- when he's said I shouldn't? I have hypothyroidism caused by Hashimotos. I'm on 125 mcg daily and 1000iu vit d daily. I also have Rosacea and psoriasis- both mild.
Thanks, Kate
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K8TE
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Can you add results and ranges and also results for vitamin D, folate, ferritin and B12 too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
I don't have my recent bloods to hand but my t4/t3 were both in upper half and TSH suppressed. This is where I've felt my best after years of tweaking.
The antibiotics for my Rosacea have been used for months now so perhaps it could be that??
It feels like flu as all my glands feel swollen and my arms and legs are tingling/painful/ heavy.
I just wondered if this was normal for autoimmune regardless of whether the hormone deficit was being optimally treated?
What exactly do you mean by a Hashi's 'flare'? Do you feel more hypo? Or do you feel as if you might be over-medicated?
I don't like the term Hashi's Flare, I find it confusing. I think calling it a Hashi's 'hyper' swing is more descriptive of what it is. It's when the immune system launches an attack on the thyroid, and the dying cells release their stock of hormone into the blood. FT4/3 levels rise, and the TSH drops, and the patient can have hyper-like symptoms.
There is no way you can treat it. The levels will eventually go down by themselves, and you will be hypo again. All you can do is leave off your levo for a few days, and start back on a lower dose, slowly increasing again as you go more hypo. But, do this yourself, don't involve your doctor. Because doctors have no understanding of Hashi's, he will be reluctant to increase your dose again if he reduces it. And, you will need the whole dose again, eventually.
Your symptoms could be due to high levels of hormone. But, they could also be hypo symptoms. It could be that you need an increase in dose. Hashi's is a progressive disease, and whatever your dose, it's perfectly possible to reach a point where you need another increase - whatever your doctor thinks. As I said, doctors just don't understand how Hashi's works.
I just feel noticeably more exhausted, achy in my limbs and swollen in all my glands. I also have two mouth ulcers and I never have mouth ulcers.
I just wondered if this was normal for Hashimotos regardless of whether you're properly medicated. I mean, is this just the nature of autoimmune? That you will have wanes of feeling good and bad regardless of medication due to inflammation or whatever is activating an perpetuating the autoimmune response?
I can totally relate to all the symptoms you describe and wonder the same that maybe we just have to put with the fluctuation of feeling good and not so good. Over the last 18 months I have tried to find my optimal levels in Levo, vitamins and diet and certainly much improved but will suddenly get a ‘flare’ out of the blue. Very puzzling and annoying!
Yes, I am the same. Making small changes over the years to see if it makes a difference..then sticking to what works for ages and feeling well only to get a load of old symptoms overnight for no apparent reason.
I know I'm on the right meds as they've worked brilliantly for ages and my weight and mood are stable....but I occasionally FEEL that my body isn't right. Like lethargy throughout my limbs.
I've come to the conclusion that it's my body telling me to rest. In the same way it gives me migraines when I'm over tired but still trying to keep going. It must be that there is more going on under the skin than I know and my body is struggling- hence I wondered if the activity of antibody production or even repair may cause this flu like aching and throbbing all over?
The long course of antibiotics wrecks the gut, wiping out both the good and bad bacteria. Hence, the mouth ulcers. Improving your stomach and gut health will take care of the ulcers. Probiotics (plant based if you are dairy intolerant) should be a part of your regimen daily. Take several hours after the antibiotics. Gargling with diluted TCP Antiseptic Liquid also helps soothe and heal. Warm salt water is antiseptic and healing as well, but offers no pain relief.
I have had issues with swollen glands since I had a serious case of glandular fever as a child. From that point on my glands have been sensitive to everything. If I catch any kind of bug, my glands are always affected, even if that isn't a typical symptom. They basically stay inflamed and swollen to varying degrees. Perhaps your glands are a favored target of your immune system. Autoimmune issues are whole body issues. There are primary targets certainly. But, nothing is truly spared. Unfortunately, every part of you is a viable target:/
I agree with your description of wanes of feeling good and bad. I find that regardless of how "dialed in" your diet is or how appropriately medicated you are, etc. that there are still too many variables. Two hands, two eyes, and physics limit the number of balls we can juggle successfully. All we can do is our best. Autoimmunity is ultimately a game of ups, downs, and lateral shifts......And it can be but quite tiring and maddening at times. I hope you can find what's causing the issues.
2 months ago I had similar feelings almost like flu feelings groin area discomfort, and I had a UTI not treated properly, I had a urine lab test and e coli was high. See if you can see if that is a cause for that feeling.
K8TE, usually when people talk about a Hashi's flare they are talking about extra hormone being dumped into the bloodstream and giving hyper symptoms.
However, antibody levels can go up and down pretty much at random (or triggered by something quite trivial). Doctors will tell you this gives no symptoms, but patients report that they do. I don't have Hashi's, so can't describe to you what it feels like, but can probably be a variety of different ways to feel rotten.
It's hard to tell from experiences on the forum whether hypo people ever become 100% better on treatment. I suspect many people get to more like 80-95% well, which means although they can go about doing most thing as normal, they won't be quite as resilient as a completely able-bodied person.
Fatigue from hypothyroid is quite tricksty, and maybe you've just got a few dregs of that left. Things like pay back fatigue can be difficult to identify. This means you become tired over things you did days or even longer ago. Immediately after exertion you might feel like you can carry on forever, but then find you feel crap for a few days a week later.
I find that rest has a big effect on my fatigue in a way that's not as easy to make sense of as ordinary tiredness. See if resting more for the next few days, or swapping your more energetic activities for the more low energy version (getting a taxi instead of the bus, lying down to read or watch TV instead of sit up, go for a walk instead of a run, etc), for a week or two makes a difference.
I had a job interview on the 17th May and then waited until the 22nd to hear if I got it- which I didn't. I wonder if this is pay back fatigue from the emotional stress?
My Hashimotos was diagnosed not long after my Mum died so I suspect emotional stress is my trigger..?!?
After an interview in March I had a hideous migraine so that all tallies.
Thank you- I think you've illuminated apotential trigger for me
Oh yes, that sounds very much the kind of thing that could trigger it. Emotional and even intellectual things use up energy just as much as the physical, in my experience.
I think that with Hashi's any kind of stress can have an effect. So can an infection or being treated for an infection. I was finally given thyroxine after having a virus infection that continued on to severe brain fog after the fluey feeling went.
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Low Vit D and possibly Calcium 
Lost!
Hashis 'flares'?
Vit D and Magnesium 
