Hi there, my name is Heather and I'm 29. I was diagnosed with hashimotos 7 years ago. Things just seem to be getting worse and worse... I'm really struggling.
I think I'm experiencing a flare up?
I will try to be brief and i hope this makes sense (brain fog argh) but my symptoms seem to subside in extremity for a couple months and then one day I'll feel like I'm hit by a truck. I get severe terrible fatigue, brain fog, slight nausea, depression, anxiety, aching tired muscles, pale skin, dry hair, etc, etc.
During these flares I find life incredibly hard. I have a 2 year old and my energy is at almost zero.
I used to get months between flare ups but now I only get weeks.
My question is, does anyone else experience these flare ups? Where you feel ok (ish) for a while and then have a few weeks of feeling bad again?
Any reassurance and support would be hugely appreciated. Thank you SO much.
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Heatherlancaster29
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I haven't no. My Dr won't do it, they all seem to know very little about thyroid problems...
I was considering getting it done privately, but I'm just confused as to what that will tell me and what can be done if my T3 isn't in range. My Drs will only prescribe levothyroxine... I'm in Scotland and on the NHS.
I'm not sure that's a flare-up. A Hashi's flare comes just after an autoimmune attack, when the dying cells dump their stores of hormone into the blood, and the levels for the Frees rise - about 35 for FT4 and about 12 for FT3 - and the TSH drops. You become 'hyper' for a while, as far as your blood tests are concerned. But you may or may not have hyper symptoms. Very often people only know when they have a blood test. Having a few bad days with increased hypo symptoms is not a Hashi's flare.
With a TSH of 150 your severely hypo not hyper! I always have private bloods to see exactly what my levels are including vit and antibodies I think being 100% gluten free and dairy and soy need to go too usually to.lower antibodies and reduce attacks/flares taking selenium can also help. It's kind of impossible to know what's going on without full blood results which NHS just won't do if TSH is in range.
Yes, a TSH of 150 is not a Hashi's flare. And, as I said, most people don't even get hyper symptoms with a flare. And I said a couple of days after what Pink1123 said, above. Sorry if I got it wrong. But, with a TSH of 150, you are not having a Hashi's flare.
My TSH shot up to 150 after being normal for months. Alongside terrible severe hypo symptoms. Then it gradually went back down was fine for a few more months. Then my TSH went down to hyper level another time with terrible hyper symptoms.
How is this not a hashi's flare? I've read that during a hashi's flare up your immune system attacks your thyroid and part of it gets released into your bloodstream therefore causing a worsening of symptoms and changes in TSH levels.
So what qualifies as a flare then?
Because it makes complete sense to me that when my levels go this extremely out of range, that my immune system is on the attack.
Well no, I read it 14 months ago when I was doing extensive personal research into hashimotos. Well yes, but by the time you get to a TSH of 150 it's obviously been a flare and you are still suffering the symptoms of said flare. Just because you're not in the hyper stage of it, you can still feel crap. Anyway, I don't even know what my TSH is currently. The 150 was an example I was giving from last year. Right now I feel on deaths door, and I can't function properly, I feel like I have the flu.
But, I don't see how you can be still suffering from the symptoms of the flare, you're suffering from the symptoms of hypo. You need an increase in dose.
In fact, you need enough of an increase - or increases - to suppress your TSH because that's the best way to even out these swings between hypo and hyper.
The less gland activity there is, the less immune system activity. When the TSH tries to stimulate the thyroid, it stimulates the immune system to attack.
Unfortunately, doctors just don't understand that, so you might have a bit of a battle on your hands. But that's what you need to aim for : a suppressed TSH.
Apologies if I seem short, I'm just feeling pretty damn depressed today about this whole thing. I just feel clueless and my brain fog is so bad today. I do appreciate all the help and advice you're giving me.
So do you mean that if I am on too low a dose of levothyroxine, my thyroid will have to work harder and therefore causing more symptoms and flare ups? That is very valuable information! I didn't know that at all.
So if I get my TSH to a lower level with a levothyroxine increase it might help?
Do you think it's worth asking my Dr about t3 medication? Or NDT - I know what the answer will be, but maybe I could buy it myself. If it would help...
It's not a case of your thyroid working harder. Your thyroid cannot work harder - I doubt if works at all if your TSH reaches 150. But, the TSH trying to stimulate it to make it work, will also stimulate the immune system. So, yes, your TSH needs to be a lot lower - it needs to be zero.
I don't know your doctor, so cannot say how he will react to a request for T3 or NDT. But, if he's like most doctors, it won't be worth it. But, before you think about buying your own, you need to know all your levels :
TSH
FT4
FT3
vit D
vit B12
folate
ferritin
And, if your doctor won't do them all, you need to do them privately. You can't just launch out in the dark. It could be that all you need is an increase in levo - certainly in the short term, you need to bring your TSH down to at least 1 with levo, before you think about T3 or NDT.
When did you last have a test? How much levo are you taking?
Definitely you're feeling bad because of your thyroid - or rather lack of a thyroid - and not being on enough levo. Your TSH is too high. You need an increase in dose, and you need your FT4 and FT3 tested at the same time, to see how well you convert.
I will speak to him tomorrow and hopefully he'll agree to an increase. I also got told he wants to speak to me about my b12 levels tomorrow so maybe they're low and that's why I've been feeling so exhausted...
I'm currently on 100mcg of levothyroxine.
My GP won't test my t3 so I've ordered my own and I should get the results back next week some time.
A good level of what? TSH? Zero. You don't need any TSH because your thyroid cannot respond to it.
Doses have to be increased by not more than 25 mcg every six weeks, so it might take you a while to get it down. But, I suspect that your FT3 is low, and that's why your TSH is high. So, levo alone might not do it. But, we'll cross that bridge when we come to it! For the time being, you need to go up to 125 mcg.
*sigh of relief* Honestly thank you! It is so unbelievabley fantastic to find someone I can actually talk to and get informative answers and information from. Thank you SO much. I know it might not make me feel better, but just knowing where to start is very helpful and I feel so much less alone in this struggle.
If TSH is 0, what would the level for hyper be? 0.01 or something?
Being hyper is having an over-range FT3, not a low TSH. If the FT3 is over-range, the TSH will obviously be low. But, you can have a low TSH without having an over-range FT3. If you see what I mean.
I have a week or 2 that I feel pretty rough and then 2-3 months of feeling relatively normal. I can tell when Iām leading up to a flare up when my shoulders and neck start aching, feel anxious for no reason and the odd palpitations. This then carries on for a week or so some days bad and some not so bad. I normally feel better in the afternoon than I do in the morning but it could be that I use some of the excess T3 in my system which my thyroid has kindly dumped during the antibody attack which eases the hyper symptoms.
It really is quite frustrating knowing that at some time you may feel crap again but you donāt know when.
Hiya- from my own experience I can certainly say low b12 will be causing havoc with your body (google b12 deficiency symptoms ) fatigue and brain fog being the most common.
Iron folate b12 and vit D are all needed for good t4 to t3 conversion so if ur not converting properly due to low vitamins it could certainly lead to increase in tsh levels despite good t4 levels.
I feel so brilliant after correcting vitamin and hormone levels without too much adjustment to my thyroxine so I would definitely optimise them as much as possible.
Get your doctor to test for pernicious anaemia! The autoimmune cause for low b12. U may not have it but damn well worth investigating as risk is higher in thyroid patients. (Check the PA forum on healthunlocked for valuable advice)
Regardless- make sure if u have symptoms of low b12- especially neurological symptoms (including palpitations and nerve issues brain fog! Etc) they may not all be thyroid related but b12- therefore he should give u loading doses via injection until symptoms subside. It was the best thing I ever did x
Thanks so much I will definitely push to get checked for pernicious anemia! I'm feeling relieved that it could just be some injections and I'll get some of my energy back! I'll find out my levels tomorrow and keep you all posted!
I echo Sara's post. Especially if you're low in B12. Low levels will floor anyone, not to mention the effects it can have on the brain especially if one has pernicious anemia. Talk to your your Dr about your B12 results, pernicious anaemia may be a culprit depending on those results. I'll find the websites I said I'd look for when I get home.
If you have any results on thyroid & vits then do post them & people can interprete how deficient you are & recommend doses you need to take.
Post your experience with the GP on the forum as people will be able to help you further.
Ok, so I'm back from the Drs with confusing news. Apparently the receptionist read my bloods wrong when I phoned up to check on them, and my vitamin b12 is not low.
The Dr told me today it's fine. He gave me a print out of the results too.
Vitamin B12 557 pg/ml (>200)
Serum Folate 14.3 ng/ml (>2)
Ferratin 21 ng/ml (30 - 480)
So my ferratin is low... I wonder if this could be causing all my weird symptoms???
I'm pretty annoyed it's not b12 as I was hoping that'd be an easy fix...
Anyway, I got my levothyroxine upped to 125mcg daily so I'm hoping that will help too...
I'm glad you got your Levo increase. As greygoose says you need a suppressed TSH preferably zero is best, lots of people feel better at zero.
Remember to make appt to see GP in 6-8 weeks time to get levels checked again. But also good to remember that your body will tell you when you're starting to feel better when symptoms getting better.
They prescribed me iron tablets, I'm going back to the Drs tomorrow to request a full iron panel and ask about adrenals. I'm very nervous though because I think the Drs just think I'm a hypochondriac now. So anything I want to ask I just feel like their going to laugh at me.
Always get actual results. GP would say vitamin D at 50.1 was fine. Most on Levothyroxine need it around 100nmol
How much iron are you prescribed? Three doses of ferrous fumerate per day? Are you taking these with vitamin C each time, to improve absorption and at least four hours away from Levo
Would strongly recommend full private testing of thyroid and vitamins in 6-8 weeks time.
I will get a print out of all my bloods tomorrow, I'm curious to know if they tested potassium and sodium levels too. And I'll find out my vitamin d too.
Yes, 3 doses of ferrous fumerate a day. But I'm only taking one a day with vitamin C, because 180mg of elemental iron a day seems like too much, or am I just being over cautious? When I don't know my actual iron serum levels? I feel so confused, So many questions.
I too am suffering from occasional Hashimoto's "flares" or more accuratley Hypo flares. Ever few weeks a flare will come on making me miserable! It may last 5 days or so. Body aches, feeling bad, almost fluish, dry mouth. Horrible! Then just like that it stops and I feel normal for a stretch. Been going on for about 6 months or so. I started with (yet another) new doctor who is the first ever to test Reverse T3 and it was quite a bit off but everything else in range. So he has supplemented my T4 (Synthroid) with T3 (Cytomel). I have been on the new combination of T4/T3 for about 6 weeks and am SO UPSET to say I am having another flare this week. DREADFUL! I go back to see the doc in a couple weeks but for now, out of sheer desperation, I have started the autoimmune protocol and have been on it only 4 days. The doc thinks my body my still be adjusting to the extra T3 and I read that it takes a few weeks for the AIP to start helping. Aultrasounds shows goiter but nothing bad. Good luck finding help - this is such a challenge!
I get flare ups as you mentioned... I'll lose weight and my hair will get dry looking and feel very tired etc just feel nervous like... like I'll go hyper.....What I do is cut back a little on my Thyroid R Therapy ... I just cut the pill in half or less if necessary... hope,this helps.
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Think I'm having problems with Thyroid 'S'
Hashimotos (I think)
I'm new with Hashimotos and frustrated
Am I having a flare-up or hypo not stable yet?
