Hashimotos flare up

[Runner25]

Can anyone help me to understand the ups and downs of Hashimotos? I have just come out of a 10 day period of feeling very hypo - fatigue, low mood, muzzy head, apathy and just a general feeling of being unwell. It went on for so long this time that I really wondered if it was going to be like this forever. Then inexplicably after 10 days it all began to lift. I need to understand more about why this happens? What is happening in my body during these hashi flare ups? Is there anything I can do to avoid? I had a blood test during this and I have an appt with my specialist in a weeks time to discuss. I haven’t seen the results yet. Any thoughts would be appreciated x

[greygoose]

What you've just experienced is not a 'Hashi's flare'. With a Hashi's flare you would feel hyper, not more hypo.

Here's a brief run-down of how Hashi's 'works':

OK, so Hashi's is an autoimmune disease – commonly called by doctors Autoimmune Thyroiditis - where the immune system attacks and slowly destroys the thyroid. It is diagnosed by blood testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

(It's necessary to understand that the blood test to see if your hypothyroidism is autoimmune might not give you any further information, for three reasons:

* What they are testing for are TPO antibodies. Antibodies fluctuate all the time, so one test might be negative, and the next positive. But, if you have one over-range test, it does mean you have Autoimmune Thyroiditis.

* There are two types of Hashi's antibodies: TPOab and TgAB. The NHS only tests TPOab, and they might be negative, but if your TgAB are positive, it means you have Hashi's anyway.

* Some Hashi's people never even have over-range antibodies. They are diagnosed by ultrasound. So, a negative antibodies blood test does not mean you don't really have it.)

There are two types of Autoimmune Thyroiditis: Ord's and Hashimoto's. But, we call them all Hashi's for convenience. The difference is, that with Hashi's, you have a goitre, with Ord's you don't. But, the end result is the same: a dead thyroid.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can try for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed, some say. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the theory is, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

[Runner25 in reply to greygoose]

Thanks for that info, phew it’s all so overwhelming isn’t it! I am already gluten free and have been for about 9 months now. Have also been taking selenium for about 4 months. I try to enjoy the normal times, but it’s always in the back of my mind that the feeling crap times will come back!

[greygoose in reply to Runner25]

Well, no, not always. Once you get onto the right dose of thyroid hormone replacement, you should be ok. What are you taking? And, how much?

[Runner25 in reply to greygoose]

75mcg Levo and 15mcg t3. I also take vit D,B and selenium. I’m worried that my specialist (recommended on here) will want to lower it as in my last results my TSH was less that 0.1. I’ve had this for 4 years now and have never been stable with it. The T3 which I started last September helped, but still very up and down.

[greygoose in reply to Runner25]

OK, so it's a decent dose. But how much of it are you absorbing? The TSH won't tell you that. Only testing the FT4 and FT3 will tell you that. Do you have results for those?

Did this 'specialist' (I strongly doubt he is actually a thyroid specialist because they are as rare as hen's teeth!) did he prescribe the T3? If so, then he should know that taking T3 suppresses TSH. That's what it does. And that doesn't mean that you're over-medicated, nor even that you're on the right dose! Once TSH gets below 1, anyway, it's a very bad indicator of thyroid status. If he doesn't know that then he's not a specialist.

And, he wasn't recommended by TUK. It only takes one member to recommend a doctor, and that doesn't mean he's right for every hypo patient - besides, they change! So, even with the list we have to be careful who we see.

It's very difficult - almost impossible - to be stable with Hashi's until the thyroid has been completely killed off, because of the way it 'works'. You're going to be up and down until then. That's another thing a specialist should know.

[Izide in reply to greygoose]

Thank you for this explanation. Can you please share it with all UK GPs doctors? As it is extremely frustrating of their lack of knowledge and ignorance.

[greygoose in reply to Izide]

You think they'd listen to me??? lol They don't listen to anyone. They're only interested in what they learnt in med school, be it wrong or right. They don't care what patients think. That's the whole problem.

[Izide in reply to greygoose]

I just have no hope in them... Just trying to fight... Suplement and lead a life as best as i can.... The more I know, the better changes I make, however, it would be sooooooo much easier if GPs would be at least tiny bit more knowledgeable and refer us to specialist who ARE specialists in that field... Alas, mine isn't.... I went to med school myself and nevet thought I had to fight with so much ignorance....

[greygoose in reply to Izide]

Did you learn much about thyroid or nutrients at med school? Doctors don't tend to learn much about either. We all wish they were more knowledgeable, but they aren't. They are taught that thyroid is no big deal and they just aren't interested. Which is why, when we're hypo, we have to learn as much as we can about our own disease.

Thyroid specialists are as rare as hen's teeth. I've seen a lot of doctors in my time - I've probably been hypo since I was about 8 years old, but I didn't even get tested until I was 55! - but only one of those doctors could be called a specialist in thyroid. And there were lots of holes in his knowledge.

That's why forums like this exist. There are thousands of us on this forum alone. And, our collective knowledge and experience are far wider and greater than any one doctor could ever have. You may think that some of the things I'm telling you are irrelevant, but my motto is: no knowledge is ever wasted.

[Izide in reply to greygoose]

Unfortunately, we are not tought enough about thyroid and vitamins in universities.... I guess only practice and further knowledge updating can help....My thyroid is being investigated but the biggest help was just me researching and acting on it... And reading in furums like this. I live it

[Mishymoo22 in reply to greygoose]

wow what a detailed interesting response. i have not really been on site for a while due to feeling like crap but so glad i saw this reply . many thanks

[greygoose in reply to Mishymoo22]

You're welcome.

[Bhattinsami in reply to greygoose]

Hi thanks for so detailed info . I have been hypo from 2016-2021 then my ft3 ft4 went up and tsh gone below 0.02. My gp referred me to endo and he told me to stop taking levothyroxine . He continued to monitor my bloods every six week and my ft3 and ft4 keep coming back to normal ranges with every blood test results but my TSH remained suppressed. So he gave me 5mg carbimazole in may saying that it will help raise my TSH levels after using carbimazole for 5 weeks the repeat blood test now showing I’m going back to hypo as now my FT4 is 9.8 pmol/L and TSH IS 3.26 mir/L . .. so It looks to me that this phase of hyperthyroidism was actually a “hashi flare” as I’m now going back to hypo ranges . Now endo told me to take the 5mg carbimazole on alternate days . I’m fearing will it now make me more hypo ,?

[greygoose in reply to Bhattinsami]

If you keep taking it, yes, it will make you more hypo. Your endo should know that TSH doesn't move as fast as FT4/3 so will take longer to rise. That does not mean you're hyper, and carbi was absolutely the wrong thing to give you.

You cannot be hypo for five years and have your thyroid suddenly making too much hormone, making you hyper, it can't work like that. A Hashi's 'flare' is not your thyroid suddenly going into over-drive, as I explain above. And, an endo should know all that.

What carbi does is stop your thyroid producing hormone, it does not get rid of hormone in the blood, and it does not make the TSH rise faster. The TSH will rise when the pituitary is ready to produce it. Reducing your thyroid hormone levels to under-range and making you ill just to raise the TSH is ludicrous. This man has no idea what he's doing, doesn't understand how the thyroid works, and is probably actually dangerous. I think, if it were me, I'd report him for unprofessional behaviour.

[Bhattinsami in reply to greygoose]

That’s what I fear now .. but who should I report to ? They basically have no knowledge how to treat and they doing experiments on people .. since past few days I’m feeling so much hot , like my hands and feet got burning feeling , do you think this is also hashimoto symptom?

[greygoose in reply to Bhattinsami]

Ah, that I couldn't tell you. If he's in a hospital, report him to the hospital management.

I don't think he's experimenting, exactly. He's panicking because of the suppressed TSH, which he doesn't understand, and just feels he has to do something - anything will do!

Burning feet can be a hypo symptoms, not necessarily anything to do with the Hashi's itself. It's the low T3 that causes symptoms.

[tattybogle in reply to greygoose]

"You cannot be hypo for five years and have your thyroid suddenly making too much hormone, making you hyper, it can't work like that. A Hashi's 'flare' is not your thyroid suddenly going into over-drive, as I explain above. And, an endo should know all that."

Hi Greygoose, Bhattinsami had a positive TBII test

healthunlocked.com/thyroidu...

(TBII is older form of test for TRab .. like TRab tests it measures both stimulating and blocking forms of TRab antibodies, but it's better at detecting the blocking form than most modern TRab tests are)

So she has some Stimulating TRab AND / OR some Blocking TRab , but we don't know how many of each.

So there is potential for more going on in her case than just what we normally expect from hashimoto's .

Theoretically it IS possible that she could have phases of 'real' hyperthyroidism due to thyroid continuously producing too much T4/T3 IF she had enough activity from her Stimulating TRab .. AND IF her thyroid isn't already too damaged by hashimoto's to make lots of T4/T3

(thinking out loud here ...perhaps thyroid is already too damaged by hashi's to be able to produce much T4 /T3 in response to Stimulating TRab , but they may still be affecting the TSH receptors in some way .. hence the lower TSH ? )

I do agree that starting carbimazole was an odd course of action , and was probably totally unnecessary , as her fT4 and fT3 results were already back in range when carbi was started , and they had only been very slightly high previously anyway.

@Bhattinsami ...in your position i wouldn't want too continue to taking the lower dose carbimazole with those latest blood tests . (fT4 9.8 , TSH 3.26 )

I suggest you tell your endo you want to stop it completely.

[greygoose in reply to tattybogle]

I do agree that starting carbimazole was an odd course of action , and was probably totally unnecessary , as her fT4 and fT3 results were already back in range when carbi was started , and they had only been very slightly high previously anyway.

I agree, he only gave her the carbi to bring her TSH up, which is so stupid, as if it were the TSH alone that made her hyper. It won't do that, anyway. The pituitary will take its own good time to raise the TSH. That was my reasoning. But, I may be been wrong about the Hashi's 'hyper' swing.

[tattybogle in reply to greygoose]

it's so frustrating watching so many endo's getting it so wrong simply because they don't understand that tsh is not the centre of the universe. Surely it's not that hard to understand that thyroid and HPT is a bit complex ,so you need to look at 'everything' and then make an informed guess... but no ...they just look at TSH without first removing their head from up their own A*** and panic .

Muppets.

[greygoose in reply to tattybogle]

Yup, that's exactly it. The TSH is the root of all the thyroid evil. It has served many, many people, very, very badly. And it's amazing that all these presumed intelligent people - doctors, not the patients, who understand it very well - have not cottoned on yet! How dumb can you get!

[tattybogle]

The term "a hashimoto's flare up " is used frequently without anyone really knowing or defining what they actually mean buy it .. other than "they felt really naff for a while " ... it's not a term that there is really any accepted definition or explanation of .

But to be clear, in case you don't already know .. there IS an understood process in hashimoto's disease (which could be described by some as a flare... but could more accurately be described as a 'hashimoto's hyper swing')

This is where the thyroid is attacked by the immune system and as a result , it dumps a load of ready made T4/ T3 into the bloodstream all at once .. and this causes a period of hypERthyroid blood results and hypERthyroid symptoms.

But this doesn't sound like what you have just experienced .

So you need to be careful when asking online about "hashimoto's flares up's" , because the term 'flare/ flare ups ' is open to misunderstanding and can be misleading when used by some people to describe "feeling inexplicably unwell for a few days at a time" but who have no idea why, and when they use the term 'Hashimoto's flare up' they are not actually referring to any established thyroid or autoimmune mechanism that would explain their feeling worse for that period of time.

[Runner25 in reply to tattybogle]

I suppose it means that for that period I felt flattened by hashimotos and was just wondering if there is anything to stop/alleviate these attacks/periods of unwellness/downward spiral times?

[tattybogle in reply to Runner25]

if you 're already gluten free , and have decent selenium / viit B12 / vit D/ folate /ferritin levels then i suspect you 've already done what you can. Some people will try 'autoimmune protocol' (AIP) type diets . to try and minimise systemic inflammation caused by the immune system activity..... to see if this helps .

but without anybody really knowing what is causing them, it's hard to have much confidence in any suggestions of what might improve them ....it's all just a case of "try something fro a while and see if it happens less often " .

[Runner25 in reply to tattybogle]

I see such extreme diets basically paleo, which may or may not help, but I really feel they are detrimental to other things like heart and bones for example. So is this how it is for most Hashi people, very up and down?

[tattybogle in reply to Runner25]

Probably not for 'most' but certainly for some of us . eg.

ever since i became hypo / went on levo 20 yrs ago ,i've had serious issues with physically/cognitively 'crashing' for a day or so after 'too much' physical exertion , ..... and its a reasonably common compliant to find on here.

I'm more or less retired now ., and it hardly ever happens anymore .. probably because i don't try to do so much anymore ... i largely just potter about which is quite pleasant ..... but if i ever need to go back to work then i expect it will return. . in fact i expect it would be worse cos i'm much less fit nowadays than i used to be a few years ago.

I was just looking back at your original posts when you first came here.

has the addition of T3 led to some improvements from where you were back then ?

how often are you getting these 10 day periods of ' naff' ...and how many days are you feeling ok for in between.

back then it was 2 days of ok followed by 5 days of 'naff' every week

are you balanced your energy expenditure from running any differently nowadays ?

do you think these current periods of 'naff' are related in any way to intensity / frequency of exercise/ running you do ?

..... or do they now seem totally unrelated to your energy expenditure ? .

From a mental health point of view.. for myself , i found that accepting that 'naff' is probably going to happen and knowing you always improve again afterwards... and enjoying the 'not naff' periods for what they are, can be very useful.... it's better for you than focusing on the 'naff' times .

I've accepted it's 'part of being me' now .. and i manage it as best as i can , by doing 'little and often' , rather than 'boom and bust' .. i accept that if i do choose to do 'too much' then there will be pay back and i accept that it's coming, but don't care because i enjoyed doing 'whatever ', and it was worth it .

Sorry .. i realise that's probably not the sort of answer you were hoping for . and my issue it's not exactly the same as your issue .... but it's the truth for me.

What did me the most harm over those 20 yrs was thinking it was 'just me' ... it has helped to realise there are plenty of other hypothyroid people who are slim ,fit ,active ,physically strong, enjoy exercise, really value their physical stamina .. who also have the same problem with 'crashing' as i do.

The medical profession's attitude to fluctuating issues like this is very damaging if you value your physical abilities and they are a big part of who you are ~ "well it can't possibly be related to your thyroid , so therefore it's in your head , and anyway you look well enough at the moment " .

Some people just don't 'get it' ....the fact that some of us actually enjoy exercise , and were really fit , and had loads of stamina ... and we want a proper explanation for why that is broken.. and if they don't have one yet , fair enough , but at least we want them to acknowledge that something physical is still not working as it should despite the thyroid treatment we take.

[Runner25 in reply to tattybogle]

Actually that is a really helpful reply and good to remind me that yes I def did feel worse before t3 and that it has helped a lot. I just run twice a week now at about 3 miles and apart from that I dog walk every day and cold water swim couple times a month (not strenuously). It is good to speak to someone that understands how upsetting it is not to do the thing that you really really loved, which for me was running long distances. I’ve managed to maintain a level of fitness, but so cannot overdo things otherwise I really pay! I’ll post my results from blood test once I’ve got them back. He’d better not suggest lowering anything!! Thanks for the understanding x

[tattybogle in reply to Runner25]

You're welcome . x

[greygoose in reply to Runner25]

No, you weren't flattened by Hashi's. Hashi's doesn't flatten people. You may, for some reason or other, have had a period of lower thyroid hormone than usual. But, it may also have been due to something that had nothing to do with thyroid.

Hashi's causes hypothyroidism. Hyposthyroidism is defined by low levels of the active hormone, T3. T3 is needed by every single cell in your body to function correctly. So, if there's not enough T3 to go round, the cells cannot all function correctly, so that's when symptoms appear. If, for some reason, you have been through a period when you needed more T3 than usual - such as over-exercising, or unusual levels of activity - there wouldn't be enough to go round to all the cells, and symptoms would arise. But, that's nothing to do with the Hashi's, that's being hypo.

[Pearlteapot in reply to greygoose]

But couldn’t it be that for some reason she couldn’t convert as well as usual, so the consequent shortage of T3 and feeling terrible is actually due to hashis because it is to do with whatever the autoimmune disease has done to diminish her ability to convert ? Eg poor digestion, more oestrogen than usual, some other inflammatory cause. Whether that is technically ‘hashi’ or not, for some reason she has less t3 than usual and should consider the factors that affect conversion?

[greygoose in reply to Pearlteapot]

But we don't know if she has less T3 than usual, we haven't seen any labs.

I've never heard of anyone having a short-term blip in conversion, unless they had some sort of infection, or something like that. I doubt the Hashi's would cause it, although it might cause long-term poor conversion. It does in many people. But, in any case, isn't that covered by the non-specific answer I gave?

[Runner25 in reply to Pearlteapot]

Thanks for your suggestions , that’s along the lines of what I’m thinking too. The trouble is 1 GP and 2 specialists down the line and I still don’t feel well a lot of the time. I have definite periods of wellness, but they don’t last. The more the attacks/flare ups happen the harder it is to stay positive and cope with it. Am I missing something, should I be having tests for other things? Other autoimmune things? I’ve had tests for things like Lymphoma and even had a brain scan, thankfully they came back clear. I can’t say the specialists haven’t tried because they have, but still no answers. I think they’re puzzled too. I’ve gone gluten free, healthy diet, take vit b, d and also selenium but I still bet these bouts of about 10 days where I function in a complete haze, feel depressed and completely fatigued. Then it lifts. There’s no pattern to it?

[Izide in reply to Runner25]

Have you checked your sexual hormones, ferritin, cysts, fybroids?

[Runner25 in reply to Izide]

I’m in hrt as had ovaries out 10 years go. My ferritin was fine a few months back, but might get all that checked again

[BiscuitBaby in reply to Runner25]

Hi Runner25I understand where you are coming from. I too go through periods where I feel what I can only describe as flu like symptoms. These come on for maybe a week every for or 5 weeks. I also get additional pain in my thyroid. I have never been able to identify anything that might be a trigger. My own theory is its the way my body responds to an attack. Others get the "hyper" feelings but I'm getting the opposite! I've never had a "flare" that you hear people talking of so I do wonder if I'm sensitive to the attacks but the extra hormone is not released?!!!? I was ignored by the gp when I asked about it. I feel they are less now than they were but they've not gone away. It's frustrating as I just want to live how I used to but I can't. I have realised that my body just does not perform the way it used to. I used to be very fit but have had to change how I exercise and my goals to accommodate my new body and learn to appreciate what I can do not be so hard on myself for what I can't!

[Runner25 in reply to BiscuitBaby]

I also get a weird feeling in my thyroid. I couldn’t describe it has pain, but it feels strained and also like I have a lump in my throat. Then it goes. I sometimes wish I could just be wired up to a machine to monitor everything that is occurring and then have someone explain it all as it is happening! I can feel all these changes, peaks and troughs, but just want a thorough minute by minute explanation! Never going to happen I know! X

[Runner25 in reply to greygoose]

Hashis, Hypothyroidism whatever. All I know is that since I’ve had it I’ve felt unwell, with periods in between where I don’t. The well periods never last. I’m just trying to find out why that’s all.

[greygoose in reply to Runner25]

Yes, of course you are - aren't we all? But, there aren't that many answers out there. So little research has been done. But I'm trying to explain to you what little I know. Sorry if you don't find it helpful.

And, it could be that these periods when you feel well are the Hashi's 'hyper' swings. That's the way it worked with me.

I wonder, do these unwell periods coincide with your menstrual periods in any way?

You say you're taking vit D, selenium and vit B (which one?), but are you taking their important cofactors, without which they won't do you much good:

* with vit D, you should be taking magnesium, because the two work together. Also vit K2-MK7 to make sure the extra calcium you'll be absorbing from food goes into the bones and teeth, and doesn't build up in the soft tissues. How much vit D are you taking?

* what people often take are just B12 and/or folate. But, all the B vits work together, and need to be kept balanced. So, if you're taking either of those two, you should also be taking a B complex with methylcobalamin (B12) and methylfolate (not cyanocobalamin and folic acid) and no vit C, which will stop the B12 working.

Did you get these nutrients tested before starting the supplements? What about ferritin?

[Izide in reply to greygoose]

I agree about vits

[greygoose in reply to Izide]

Sorry, which bit do you agree about?

[Runner25 in reply to greygoose]

I’m not on here for an argument, but thanks for all the info.

[greygoose in reply to Runner25]

I wasn't aware that we were having an argument. It was a genuine question due to a rather strange response to what I said, and the question I asked. I'm sorry if you interpret it that way. I must confess, I'm confused, but never mind. I won't bother you again. Good luck.

[Hidden]

I have the same thing. If you're on Instagram have a look at theinvisiblehypothyroidism. She talks about the same thing. It's really common.

I also had to give up running; I know only wear my running trainers on the school run. It's such a loss.

[Runner25 in reply to Hidden]

I feel for you, it’s the pits to give up something you love and that makes you feel so good (well, until it started making you feel worse that is). I still manage 3 miles twice a week, sometimes I pay, most times if I keep it to 3 miles I don’t. I’m thinking of trying weights at the gym, although I hate gyms, so keep putting it off!!! I could never run ahead of a busy day that would flatten me! I’ll have a look at that, thanks so much and good luck x

[Lovecake]

Hi, I get periods of fatigue similar to you. I’m on T4/T3 like you. I’m miles better with the T3 added too. But it’s really frustrating when you don’t know when the fatigue etc will hit. I really agree with all the helpful answers you’ve had so far, especially Tattybogle’s explanation.

I also have another theory - it’s that I convert slowly (hence the added T3) and every now and then I use up the T4 available in my body and I have to wait for it to build up/convert again.

Please note - this theory could be complete rubbish 🤪

The answer might be to go onto T3 only………..

My TSH has also dropped to 0.01 my endo asked me to lower my T4 to see if it would rise and I felt like I’d hit a wall. He then said not to worry as my FT4 and FT3 levels are in range and he is treating a person not a number. So I hope your endo will not make you change if your levels are ok.

I actually chatted to my doctor yesterday, she’s fairly good when it comes to thyroid issues (as in she doesn’t make me lower my dose 🙃). She thinks I’m doing quite well, but that I might just have to accept that I can’t do everything I used to or want to. 🙁🫤

[Runner25 in reply to Lovecake]

I too get that feeling that I’ve run out of t4. T4 feels like my base and T3 gives me the little extra that I need, but if my t4 runs out of store I feel very all over the place, flat, fatigued. The one bonus is that since on t3 too the debilitating headaches have all but gone. I don’t know if you saw witchinghour’s post about Invisiblehypothyroidism on Instagram. I’m going to check her out x

[Lovecake in reply to Runner25]

It seems to be something that doctors/endos don’t connect.I get migraines and when my levels are low they kick in and are debilitating. I had many years before diagnosis (and during) when they were dreadful and the doctor blamed it on me being on HRT patches (I had a full hysterectomy @ 44).

I’ve been quite busy for a few days and feel drained this morning. It will take several days to feel ok again, but I’m used to it 😐

I don’t do instagram, so might have to see if it’s posted elsewhere.

[Runner25 in reply to Lovecake]

Hope you start to feel better soon (you will) and can enjoy the sun! X