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What’s happening to me - feels like I’ve taken amphetamines or something - what is this?!

61 replies

Deathgrip · 05/05/2019 08:26

My health has been bad for years. Endometriosis, adenomyosis, ME and allegedly fibromyalgia. I’ve had all the symptoms of hypothyroidism but levels always within normal range. Nothing has helped. I am reasonably sure I’ve had some sort of hormonal imbalance for years due to the symptoms I’ve had.

A month ago I quit smoking. A week or so ago I got my AWOL libido back. Ever since I’ve had some very weird symptoms I’ve never had before - I feel like I’ve taken amphetamines (which I only did once 20 years ago!)

Feels like my insides are shaking. My heart is pounding. My hands are shaking. I feel sick and dizzy and light headed. I’m getting headaches. My fatigue, which has crippled me for years, is about 90% gone which sounds great, but I feel so shocking that I’m needing to lie down all the time. I’m sweating even when it’s not hot. I’ve had diarrhoea, but now have awful pain like I’m constipated and have trapped wind. I feel anxious and panicky for no reason.

I have no idea what could be causing this. I just bought a fit bit type watch thing so I could check heartbeat and blood pressure when I feel really bad. My resting heart rate is varying between 60 and 115. My blood pressure is varying between 112/75 and 156/100. My bp has always been on the low side.

I have just recently had a nasty infection in my lung but I finished the antibiotics a while ago and that’s cleared up.

I will be seeing my GP next week but I have no idea what to ask for since I had blood tests a few weeks ago and they were normal (thyroid, full blood count and b12).

Any ideas?

OP posts:
Fazackerley · 05/05/2019 14:36

I'm sorry I missed that about the menopause. Hope the doctors find something.

Deathgrip · 05/05/2019 14:41

Thank you - it’s just so strange, I wish I could figure it out, and I wish doctors were more interested in helping. I have been in so many times begging for help - a few basic blood tests get done and that’s the end of it. Considering finding a private endocrinologist but I don’t even know for sure if it’s an endocrine issue.

OP posts:
jacquesjacques · 06/05/2019 05:37

Interestingly I have literally just had an episode like this, the second in a few weeks. I'm 13 weeks pregnant though and it's not constant for me - I had put it down to a hormone surge or slightly too much sugar during the day but will be interested to see if you come up with something else. It's a bizarre feeling so if you have it constantly I really do sympathise OP - I felt like I was having a drugs high! Thanks

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floraloctopus · 06/05/2019 06:00

It sounds exactly like a panic attack to me.

justilou1 · 06/05/2019 06:03

There are other chemicals in cigarettes that they chuck in to keep you addicted as well. Perhaps it's those. Not to mention detoxing from the other nasty, toxins in fags. I'm also dubious about the shit in vapes, tbh. They're supposedly almost as nasty, and in different ways. I'd go to the doctor.

toucantoo · 06/05/2019 06:13

When the thyroid goes wrong it can take a few months before it shows up in the blood. Did the GP get full thyroid check? T3 & T4, free T3 & free T4 or just TSH.

Deathgrip · 06/05/2019 06:49

They only checked TSH and FT4 - I’ve had a lot of private tests done over the last couple of years while trying to figure out what’s going on since doctors haven’t been too interested. My levels are all over the shop - I don’t understand why. Never hyperthyroid type results though. TSH varying from 1.5 to 3.95 (once it was 5.95 but that was never repeated). FT4 usually around 12 but up to 15, FT3 has been from bottom to top of normal range. TPO antibodies have been from 4 to 23, TGB antibodies from less than 10 up to about 18, so well within normal range but am sceptical about “normal ranges” for thyroid antibodies to be honest!

I honestly don’t think it’s panic attacks - I used to have them back in my early 20s after a few traumatic experiences. They felt more like I imagine a heart attack would feel like and also affected my breathing, but they were shortlived. This is there all the time, but is worse at some points than others. I’m using the watch thing to track BP and heart rate so I can show the doctor, and I may keep a little symptom diary over the next couple of days to see if there are any patterns.

I absolutely agree about all the nasty crap in cigarettes (and possibly vapes too, although I’m using the best quality liquid I can from reputable sources) and if this had happened closer to quitting smoking or starting vaping I’d be more suspicious of that being the cause but the timing seems odd.

I will definitely see the doctor and see what they think. I’m not expecting much to be honest, have lost a lot of faith in them over the years, but I guess they can rule out anything sinister.

OP posts:
665TheNeighbourOfTheBeast · 06/05/2019 08:25

You don't say if you are on any medication.
Smoking causes vasoconstriction. I wonder if any current medication has been prescribed based on your physical response, ...when Vasoconstricted. Then your not , so the response may have changed?

Or you could just be getting more oxygenated blood more easily around your body. ( Feeling fitter) which you wouldn't have untill the lung infection cleared up. Hence the timing ?

MIA12 · 06/05/2019 08:33

Hope you feel better soon OP. As a fellow sufferer of ME I’m amazed your fatigue has vanished, but sorry to hear you’re feeling so unwell having gone the other way.

Deathgrip · 06/05/2019 09:10

That would make sense 665. I have been a smoker for a very long time, although I did quit twice for nearly a year each time and I don’t remember feeling like this. Both times I was on the same medication I’m on now (morphine, that’s it, dose has been consistent for two years and it’s much lower than it used to be - I used to be on nearly 10 times more than I am now, but that was 3 years ago)

I’m amazed too MIA but then at the same time I have always been sure I don’t have ME or fibro. I have always been pretty certain it’s linked to something else as I’ve had so many symptoms that aren’t related to the diagnoses I have - I fear many people are misdiagnosed because it’s easier. That’s not to say that ME and fibro aren’t real, they absolutely are - I just think that lots of people have the diagnosis because they can’t find anything else.

I spent years completely housebound and right now I have no fatigue at all which is weird - but then I feel so unwell there’s no benefit to be felt, which is deeply annoying!

OP posts:
Sowhatifisaycunt · 06/05/2019 09:18

Get your thyroid checked ASAP. Also, consider going on a low carb diet to stabilise your blood sugars. Good luck.

Deathgrip · 07/05/2019 22:43

Thanks all - soonest appointment I could get is next week, but I’m not getting any worse so I don’t think it’s urgent. I will of course get seen sooner if things take a turn for the worse.

Going to sort out a thyroid test in the meantime so that if there is a marked change I can bring that up - the change in my symptoms could definitely be a thyroid issue from what I’ve read so I just want to make sure.

I’m monitoring heartrate and BP via a clever watch thingie - it’s recording my blood pressure every ten minutes and it’s really variable. I don’t know if this much variation is normal? Lowest today has been 100/67 which is the low end of normal from what I can tell, but the highest has been 151/101 - I’ve always had BP in the lower normal range, even when I had borderline pre-eclampsia (high protein in my urine, twin pregnancy so high risk for it) I was only going to 140s over 90s. I’ve never seen a reading like this but I’ve never regularly monitored it before.

From looking online it seems that high blood pressure is considered as readings exceeding 140/90 on a regular basis (or one or the other) - but I don’t know whether this amount of variation is normal and everyone has little spikes through the day. I’ve just totted it up and I’ve had 15 readings today that have been classed as high but it has taken nearly 100 readings.

I can’t get my head round the change. Today I started deep cleaning the kitchen - I can’t remember the last time I could do that because of my fatigue. But then the dizzy, sick, headache, drained feeling worsens and I have to lie down. I guess I should be taking it easy but it’s hard not to take advantage of having less fatigue - even though I feel drained it’s so different. I don’t get it at all - I’ve had an ME diagnosis for 12 years.

OP posts:
Hecateh · 07/05/2019 22:58

Symptoms sound like hyperthyroid,

Doctors (not all) generally prefer us not to go with suspected diagnoses. Just go with a list of symptoms and as long as your pulse is elevated or there is some other quantifiable symptom s/he may well go for thyroid testing

Deathgrip · 07/05/2019 23:17

Oh I know, they hate it - but I’ve been rather pushed into a corner because my health has been terrible for over a decade (can’t work, was housebound for years etc) and there’s been very little effort made to actually figure it out or help me. It’s been labelled as ME, then as fibromyalgia even though most of the symptoms I have don’t fit either diagnosis (and once those diagnoses were made, there’s been even less interest in helping me). So I’ve had to do my own research rather than just lying down and letting life to pass me by.

I paid for my own thyroid tests because my symptoms were so typical of hypothyroidism. After a private test showed low FT4 and a TSH of 5.95, they agreed to retest me but the results were totally normal. As thing worsened I paid for tests again and took back in two almost identical results from different companies a month apart where I was just on the borderline of subclinical hypothyroidism. She wasn’t happy and very reluctantly agreed to test me again - this was about a month ago and again it was completely normal.

If I go in there and say everything has changed and I now have all these symptoms which are potential symptoms of hyperthyroidism, she’s going to think I’m certifiably insane. And although I can sort of understand that, I can’t control what’s happening and I don’t actually care what it is - I just want to feel well and know what’s going on.

I really hate this - I just want to feel better, I’m so fed up with feeling so awful, even if it’s a different kind of awful!

OP posts:
RagingWhoreBag · 07/05/2019 23:22

Doctors (not all) generally prefer us not to go with suspected diagnoses. Just go with a list of symptoms and as long as your pulse is elevated or there is some other quantifiable symptom s/he may well go for thyroid testing

I agree with this. It sounds like over active thyroid so just go in and explain all your symptoms without referencing any previous appointments or tests. Your GP should hear all that and think “hmm could be thyroid”. If they don’t then they’re pretty negligent!

It’s so hard having to battle for your health, I’ve had the same and it seems that you need to be your own advocate when you least feel like it. Being clued up is essential when you feel that you’re being fobbed off.

Keep plugging away and getting tests done privately when they won’t. It’s the best way to find out what’s going on. I recently had to pay for private tests when my GP told me he suspected something and then sent off a blood test which will take 6-8 weeks instead of a more useful specific test which I had back within a week!! I’m grateful for the NHS in some cases but there are some major limitations on what they can/will do.

GarlicGrace · 08/05/2019 03:52

I've had endocrine problems all my life so instinctively agreed with your thought that you have something hormonal going on. I've got an ME/CFS diagnosis and have definitely not felt your energy surge - but the inner thermostat failure is very typical of menopause.

Perimenopause starts kicking in at around 40 for most women. (I'm now past menopause, but am currently boiling: the sweat/chill cycle never stops for many of us.) You shouldn't assume that your natural change will be the same as the artificial one you experienced. Feeling like you're in a sauna for an hour or more is actually more usual than 'burning'.

There are lots of other things it could be, of course. Stopping smoking will change the way your body metabolises drugs, and you really need to discuss that possibility with your doctor. Could the morphine be clearing out faster, and would this provoke your symptoms?

But I'm worried about your blood pressure. Smart watches are notoriously bad at blood pressure, don't rely on its readings. Your symptoms are typical of heart disease in women, especially dizzy, sick, headache, drained feeling.

I'm reluctant to add to your list of health concerns! Sorry. But please do consider this possibility.

MarinaMarinara · 08/05/2019 04:13

Is there any possibility you could be pregnant? I felt very very weird for two or three months in early pregnancy each time. Buzzy and kind of high, weird heart palpitations or thuddy heart, sick, dizzy and light headed. Libido all over the place at random (sometimes high sometimes zero). I also have endo and one of my pregnancies was a wonderful but very big surprise...

MarinaMarinara · 08/05/2019 04:15

Plus pregnancy broke my internal thermostat (not in a hot flush way just in an always boiling way).

GarlicGrace · 08/05/2019 04:21

Ooh, that's an exciting thought! I'll have to come back tomorrow and see what OP says!

Deathgrip · 08/05/2019 06:39

Thanks so much everyone - I so appreciate being able to talk about this stuff because I am just so confused by it all.

Firstly, I’m afraid pregnancy is highly highly unlikely. We did have sex once last month which was around ovulation time (since that’s when my sex drive came back, for about two days). We stopped ages before he was even close to finishing because we hadn’t had sex for over a year which meant it became painful quite quickly (also common for me, endometriosis and adenomyosis coupled with - apologies for TMI - being quite small in that department).

I then had an extremely heavy and very normal (for me) period - 8 days, extremely heavy, large clots, on time, etc. I would be extremely surprised if a pregnancy could withstand that (I know some women continue to have periods but I’m not sure they’re that heavy). I’ve only just passed my fertile window this cycle, and I’m reasonably sure I ovulated because I had the usual signs - ovulation pain, change in CM, etc. Also, when I was pregnant all of my early symptoms were an exacerbation of my existing issues (mainly fatigue so bad I couldn’t move). I know women can experience each pregnancy differently of course. However I think pregnancy, while not totally impossible, is really unlikely.

I don’t know what’s been going on with my health for so long but I am as certain as I can be that there is a hormonal issue going on - the symptoms just tie in too closely with major hormonal changes in my life, it can’t be a coincidence.

Having said that, I just don’t think it’s perimenopause. I totally agree that perimenopause will probably feel very different to the drugs I was on which created such an extreme and rapid change (they essentially turn your ovaries off at the brain - not quite as simple as that, but that’s basically it). But it just doesn’t feel like typical perimenopause symptoms. The only way I can describe it is like having done intense physical exercise (but minus any effect on my breathing and muscles) when not having eaten properly. Neither of those is the case though.

My average heartrate actually seems very normal now - averaged 75-80 even when I did some intensive housework yesterday, the half-hourly average only went up to 100 once but that was during rest. Today I’ll try and check it during those times where I feel worse to see if there’s a short spike I’m missing - just checked it now as I feel crappy again and although I’m resting it’s gone up to high 90s.

If it is perimenopause then it must be very early days - like I say, apart from my oestrogen which I believe has been low for years (ever since that medication), LH, FSH, SHBG were all in the middle of normal range a few months ago. I can’t imagine things changing so suddenly in terms of symptoms but maybe it’s possible.

I’m not sleeping well, waking up often and waking at 5:30 every day so the reduced fatigue is even more strange.

Having looked at perimenopause symptoms it seems that I’m more likely to feel more fatigued, more mood swings, weight gain rather than loss, less sex drive etc. I am peeing more often (or rather it feels like I’m struggling to completely empty my bladder when I do go, so I always feel like I need to go) and obviously I am sweating more, but otherwise not much seems to fit with perimenopause

I’ve been on opiates for a long long time - I have been through a couple of reductions over time (once very slowly, once by immediately halving the dose and then decreasing). I’ve also been cold turkey in the past. It doesn’t feel like either of those things but obviously as it’s the only medication I take I don’t want to rule it out.

Ordinarily I’d agree to go into the GP and pretend like previous appointments/ tests didn’t happen and base it on how I am now. Unfortunately the last appointment I had with her was not pleasant, very confrontational in fact - I took DH in with me for moral support and basically laid it out (over 10 years of feeling like absolute shit with the accompanying other factors screwing up my marriage, fatigue making it very difficult to take care of my children as they need and deserve, etc). I’d done my research. I had my private test results. I’d printed some studies (including some links between the drugs I was on and ongoing thyroid issues but unfortunately there’s next to no information about the longterm effects of this drug - there are huge communities online of (mostly) women who’ve had severe health problems for years afterwards which closely mirror the problems I’ve had, but doctors aren’t reporting these as potential side effects and no one seems to be investigating it).

She basically said that researching and having private tests done was the problem because I was making myself worry - no, I’m worrying because I’m unwell and I’m doing these tests and research because no one seems to care about helping me (she didn’t take kindly to that either). For example I was diagnosed with fibro about 9 months postnatally, even though the symptoms don’t fit. Referred to a rheumatologist who refused to see me because I’d already been diagnosed.

She basically said that I was asking her to treat me for something I don’t have which is not true - I want the right treatment so that I feel better, I don’t want random things which won’t do anything (she’s more than happy to push antidepressants though - the fact that cry when I’m talking to her about this makes her think I’m depressed, but I’m not. I did try them, just to rule it out but they didn’t help).

I had to beg for tests to be repeated and I know her attitude is going to be “told you so”. I realise that she sounds really bad here - I think she was trying to be firm and actually overall she’s been very nice to me over the years. I could go and see another doctor but then I’d have to start from scratch, and I know she will tell the other doctor that I’ve gone to them because she wouldn’t give me what she thinks I wanted.

Sorry, I’m rambling now. I will definitely ask her to check my heart, just to be safe. I’m going to pick up a BP cuff when I’m out today to see how accurate the watch is (I read lots of reviews saying the readings are very close to those taken with a cuff but who knows) and I’m going to get my thyroid tested again whether she does it or I do it myself. If things worsen or BP or heart rate shoot up, I’ll see someone urgently.

OP posts:
Sowhatifisaycunt · 08/05/2019 13:22

At the risk of sounding bonkers and evangelical, take a good look at your diet and read up on oxidative stress. I’ve felt crap for years with fluctuating symptoms similar to what you describe. I’ve recently reduced carbs and felt better within a few days. I’m now doing Ketogenic and feel like myself again for the first time in years. There might be other stuff going on for you but it’s definitely worth looking at your carb intake as the effects on a cellular level can be immense and wide ranging.

thatmustbenigelwiththebrie · 08/05/2019 17:14

I have an underactive thyroid and once accidentally over dosed on my medication - that exactly how I felt.

I bolted awake about 1am, sweating, pounding heart, like I was coming up. It was awful.

Maybe you have an overactive thyroid?

Deathgrip · 08/05/2019 18:35

My current suspicion is Hashimotos - it would make perfect sense. My thyroid levels have always been up and down (but not to the extremes necessary to diagnose) and apparently hashimotos can cause you to swing between hypo and hyperthyroid.

Smoking apparently suppresses TPO antibodies and TSH and it’s common for underlying thyroid issues to kick off after you quit.

It all makes sense... whether the tests back it up or not is another story!

I was just speaking to a friend today who was over medicated at one point and she said it’s exactly how she felt too.

I’ve ordered another thyroid test today - I know exactly what my GP will say if I go in again and say I still think I have a thyroid problem! My results have never been close to overactive though, so if this one is then hopefully she will see that’s a big change.

I’m just so sick of it all to be honest.

OP posts:
GarlicGrace · 08/05/2019 19:06

I looked that up about hypothyroidism smoking cessation after you mentioned it. It's really common! Researchers said it's the reason people gain weight after stopping smoking - the subjects who didn't gain weight were the only ones who didn't develop a thyroid problem. And they were in the minority Shock

Hormones are little bastards, aren't they? So frustrating that endocrinology's still a side issue to most medical practitioners.

Deathgrip · 08/05/2019 19:40

Yes, I was shocked - six times more likely to develop thyroid problems in the two years after quitting than any other time. It’s crazy.

I’ve been shocked by how little GPs and gynaes care about female hormones, which are so bloody complicated- and if you question whether they could be a factor in your health they look at you like you believe in homeopathy or faith healing. As if it’s so crazy to think that your hormones might affect your health, even though we know what hormonal changes in puberty, pregnancy, breastfeeding, menopause etc do to us. It’s like they think hormones are woo or something.

I went to see my GP saying I thought my oestrogen might be low (common after the meds I was on). She said “so you think you’re menopausal?”. I said no, I think my oestradiol might be low and causing some of my symptoms - she just looked at me like that wasn’t a thing that can happen. So frustrating.

OP posts: