Post exertion fatigue: I'm like a zombie today... - Thyroid UK

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Post exertion fatigue

Jamima profile image
93 Replies

I'm like a zombie today - over the past 2 days, I did quite a bit of heavy gardening as the weather was so good. I had muscle aches and felt a bit wiped out at the end of the day yesterday so took a long Epsom salts bath, and today, wham! it's like a truck has hit me, but with extra brain fog added. Is this adrenal or thyroid related? I recently had a short break abroad and did a lot of walking in a particularly hilly city, it was warm and sunny and I just didn't experience anything like this.I'm currently using adrenavive II and metavive.

Any help would be appreciated.

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Jamima
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93 Replies

hi Jamima, aren’t you on HC? I also remember your thyroid labs being quite bad recently.

Jamima profile image
Jamima in reply to

I’m down to 2.5 HC, I wasn’t comfortable self medicating with it, so introduced adrenavive. Could that be what’s made the difference along with the physical exertion?

Alanna012 profile image
Alanna012 in reply toJamima

Did you find using the HC helped before reducing the dose?

Jamima profile image
Jamima in reply toAlanna012

Well, it’s hard to say, because I didn’t push myself quite as hard as I have over the past couple of days, but I definitely felt generally better.

in reply toJamima

OK, I understand. But I’d have thought you might work on your thyroid as you’d done the hard part re. Adrenals and taken the plunge with HC and found clear benefit. Now you likely have low thyroid and low adrenal again.

Jamima profile image
Jamima in reply to

I’m taking metavive, is that not enough?

in reply toJamima

no I would say that’s not enough at all, barely touch the sides really. But let’s see what others think.

Jamima profile image
Jamima in reply to

Ok, thank you. I just don’t get on with levo, it makes me feel ill, even in very small doses.

in reply toJamima

have you tried T3?

Jamima profile image
Jamima in reply to

No I haven’t but I did consider if NDT might be a better fit.

Jamima profile image
Jamima in reply to

Hi dontforgetcortisol - I’m following your posts because I’m interested in your HC journey. I noticed in your PMR post that your concerned about your results, I found this link when I was searching for info on my SST results, it might provide a little insight. Apologies if you’ve already found it: ruh.nhs.uk/pathology/docume...

in reply toJamima

thanks Jamima 😊 that’s so kind. Yes, the part that is niggling at me is that I actually failed the synacthen test. A low ACTH & starting cortisol point wouldn’t bother me that much, but the fact I didn’t response *that much* to the ACTH stimulation is bothering me and I’m worrying about addisons… but I think maybe this is also a mind that has lived with chronically unresolved and untreated thyroid problems for so long, I guess I have some kind of PTSD, having so little hope that anyone can really help. Anyway, sorry to off load and thank you for the link. It does say that ACTH needs to be over 200 to classify as primary adrenal insufficiency so that’s something! 🤞

Jamima profile image
Jamima in reply to

Yes, sometimes the results can make us more anxious and frustrated than we were before the tests. My SST results were not dissimilar to yours but I responded very well to ACTH so primary was immediately ruled out. My cortisol is still very low until evening and I've upped my HC again, I feel better today. Also wanted to say that your raised anxiety might be a result of the HC, it did that a few times with me, possibly a small drop might ease it? If you google SST, there are quite a few different hospital results sites. Good luck.

Jamima profile image
Jamima in reply toJamima

I think there's further tests that can be carried out to diagnose Addisons?

in reply toJamima

Thanks Jamima :) yes I wish I’d passed the synacthen, then I wouldn’t be bothered at all. Yes, I have read in Peatfield & STTM that HC can increase thyroid metabolism to an extent that it can make us anxious so I am aware that could also be a factor. I am having antibodies tested soon when this endo actually gets around to sorting the tests out. X

Jamima profile image
Jamima in reply to

Ok, good, hope those results are more positive.

in reply to

I think maybe this is also a mind that has lived with chronically unresolved and untreated thyroid problems for so long, I guess I have some kind of PTSD, having so little hope that anyone can really help

I'm also thinking similar about PTSD. I've had so many medics tell me there's nothing wrong with me when there very definitely was/is.

I'm booked to see a new endo and I'm on the verge of a panic attack whenever I think about it. The fear of being dismissed or written off again.

Solidarity! ✊🏼

in reply to

it’s a scandal really… ordinary people just haven’t any idea what this is like. If I had one wish, it would be for every crap endo/GP in the world to wake up without a thyroid and then when they come crying for help we tell them no T4, no T3 and no NDT. Then I’d spend all my free time watching their whole bodies just slowly fall into a balding, freezing, fat, infertile, anxious, depressed, hypometabolic state is disrepair.

Sorry that’s so bleak I just feel black today 😭😂 good luck with doc x

in reply to

I've overdone it the last few days and have spent today in bed/on the sofa to make up for it. I sobbed and sobbed this morning because I'm 3 years down the line and STILL struggling.

I am also feeling bleak today!

in reply to

It feels hopeless. But I’ve seen people get better. I do think for you some cortisol testing will be very important. The endo you’re going to isn’t great with adrenals I don’t think, so don’t be disheartened if she isn’t very moved by the adrenal side. My friend should have messaged you about her?

in reply to

I'm used to doing it all by myself; if it turns out cortisol needs addressing I'm happy to go off-piste if need be. It would just be so nice to have someone capable, that I trust, to just take charge and tell me what to do.

With some luck my cortisol will come back optimal! 🤪

in reply to

I know, the loneliness is so deep. I just got diagnosed with primary adrenal insufficiency and had to ask him to do antibodies because it didn’t even seem to occur to him to do them… it’s pathetic. None of these doctors are able to think for themselves, even the “good” ones. Good luck with your cortisol test. X

in reply to

Loneliness. Yes. I'd not ever really identified it as that but yes, very very lonely.

I have symptoms of low oestrogen both my private consultant and NHS GP dismissed me out of hand because my oestrogen was 9% through range. 🙄

Zero curiosity and 100% dogma. 'you're in range. You're fine'.

I agree though, they should all trial life without a thyroid and see how they get on. Their stance on NDT & T3 would change in a heartbeat.

in reply to

oh no 😞 that’s miserable! Surely that estrogen is not right? I wish they’d use their f**king brains. Yes, you’re just “in range” but you’re sobbing on the sofa feeling hideous. But since you’re “in range” that’s it? They’re meant to be the smartest minds 🙄🫠 it’s criminal. But you will make progress if you are consistent and absolutely dogged. Everyone I know who gets better is those two things in spades, there is no reason you cannot get well xx

in reply to

Humanbean once wrote on here that 50% of doctors got below average grades.

It totally blew my mind.

in reply to

I’d easily believe that. I once had to explain to a GP that T4 is storage… they literally sit and prescribe paracetamol and anti-depressants for 80% of their day (probably for people with thyroid problems that they won’t look into properly.)

in reply to

3 years and £2,500 later I'm inching nearer to health. It will come but at the moment it feels very far away.

in reply to

Turns out, I'm in peri!

Sneedle profile image
Sneedle in reply to

Hello Witchinghour, about your low oestrogen, have you ever been referred to a menopause clinic (they do exist on nhs)? I can see from your bio that menopause would be very early for you, but thought it worth a punt since you mentioned it's very low. And you might get more sense out of them than endos etc. My sister in law had early menopause in her thirties. I got referred by a nurse practitioner who was the one everyone went to for women's issues in my surgery- not early menopause in my case, but my point is I managed to bypass the GPs!

Sorry if I'm barking up the wrong tree here.

Or rather, have you ever come to a conclusion as to what's causing it?

🌸

in reply toSneedle

Hi Sneedle, No, I haven't. I spoke with my GP, mainly because my lack of libido was/is impacting my marriage. GP said my results were worthless and I needed Psychosexual counselling. I've not been brave enough to try again yet.

That was a year ago and I was hoping that getting my thyroid hormones right would fix any other hormonal issue but I'm still struggling with thyroid.

I did mention it to my private consultant in January and offered me beta blockers because 'you just need to relax' and then nonchalantly said 'it might never come back'.

I'm was going to go to a menopause clinic near me but it's £175 for an initial appointment then £115 each one after that. Plus tests and prescriptions.

So I'm between a rock and a hard place at the moment.

X

Jamima profile image
Jamima in reply to

Hi Witchinghour - I feel your meno struggle and it's particularly difficult when trying to juggle thyroid in the mix as they're so inextricably meshed together. I'm now 60 and post meno, I'd stopped HRT because it made me feel more hypo even in very small doses, but I've recently re-started because the night and day sweats/low mood returned. It's really difficult to know which is meno and which is thyroid but the sweats started to ease after starting HRT again so it's safe to assume that's what was causing it. There's a good board on Menopause Matters site where a woman who has been hypo for many years will answer any questions re. thyroid and meno. Would you like me to search her out and pass on the details? In my experience meno/thyroid medics are all useless, I really don't want to deflate you, just save you money. My next port of call may be somewhere like the London Hormone Clinic or Marion Gluck as I know they have knowledge of ALL hormones.

FancyPants54 profile image
FancyPants54 in reply toJamima

Oh please don't waste your money on the Marion Gluck Clinic! They are really not out to help. I started my menopause HRT journey there and spent an absolute fortune and got nowhere. The bio identical hormones they supply are not good or of reliable absorption. You are much better using standardised body identical HRT available on the NHS.

I really, really hope you don't go there. I received very poor advice there for a couple of things.

Jamima profile image
Jamima in reply toFancyPants54

Thank-you FancyPants, I have a friend who got on very well with the London hormone clinic, albeit she spent a fortune, but I'll take your advice on board. I'm not really interested in compounded hormones, more an explanation of the interaction of sex and thyroid hormones and someone who might have a bloody clue about them! I understand what you mean about the standardised NHS treatments, I have a drawer full of them and tried and tested all of them. I just need an explanation...

FancyPants54 profile image
FancyPants54 in reply toJamima

You won't get an explanation of how thyroid and HRT interact from them. They claim to do thyroid, but their knowledge was no better than average and possibly worse. I was started on Levo there with a TSH just over range. I wish I had never started it. At first I was put on 25mcg every other day. Then up to every day but not on Sundays. Then at 50mcg, again told never on Sundays.

I queried the interaction of HRT and thyroid and was just told that some women needed to increase their thyroid meds a little after starting on HRT and that they would keep checking my numbers.

The oestrogen compounded cream worked for me at first, but didn't last long before the effects wore off. So then they kept increasing the doses and trying lozenges, cream and patches. I was given compounded progesterone cream (which is known to not absorb very well at all because the molecules are too big). At one point I was really upset and stressed (I had mum in hospital in one town with a fractured pelvis, dad in hospital in another town with pneumonia and I lived 25 miles away from both of them and worked full time. I could barely get myself together so I was told to use more progesterone cream. I was told it would calm me and I would be able to cope better and my inability to easily pee would vanish and I'd finally be able to go to the loo properly. The doctor told me I could use as much progesterone cream as I wanted. So I tried that. I got more and more tired and more and more bloated. I could hardly pee at all but it was gradual and it took a while for me to realise. As soon as I reduced the progesterone cream my legs worked again and I slowly peed more.

Marion Gluck was an HRT pioneer in the UK, and about the only place to go privately back in the day. But it's geared up with people with lots of money and there are better options, clinics, specialists out there now.

If you are on Facebook, join the closed group "Menopause Support Group" run by Diane Danzebrink. Ask your questions there. Sometimes it will be people like you who answer and may not know the answers. But you will often get an admin answering and they do know a thing or two. You can have a telephone appointment with Diane too. Very good value for money. She's a lovely person and very caring. She's a qualified menopause practitioner. You would get your questions answered by her in detail and for a fraction of the price of a clinic. She will write to your GP for you too if you want, telling them what products you would like to try and in what doses. She also has a set of very useful videos on YouTube (search for her name) and she has a series of interviews with Consultant Nick Pannay who is the menopause lead at London's Chelsea and Westminster hospital. He's a renowned UK expert and he has given a lot of time to make very informative videos with Diane.

I hope some of that is helpful for you.

Jamima profile image
Jamima in reply toFancyPants54

Thank you FancyPants - there's really not very much I need to know about the menopause and HRT, before MG was a pioneer, Prof John Studd was, and it was him I consulted during the worst of my menopause. What I'm dealing with now isn't menopause although, I understand there are crossovers, and it's the crossovers I'm trying to unpick. I've now realised after several attempts at re-starting HRT that I simply have to get my thyroid numbers in a better place or the HRT brings me crashing down again, I'm not at a stage where I can combine both yet and will just have to tolerate the sweats until I am. I don't profess to know everything about meno, but after 11/12 years of reading, consulting and consuming the products, I know a wee bit more than I do thyroid treatment. Thanks again.

in reply toJamima

radd is v good on sex hormones and ofc thyroid hormones - she could help?

in reply toJamima

I don't think I'm in meno just yet but something akin to it. I don't think I have ovarian failure but a hormonal imbalance but I can't find anyone interested enough to help me figure it out!

I'd be keen to trial HRT but I don't know if it's appropriate yet.

Its just so frustrating to keep spending money to get nowhere.

Jamima profile image
Jamima in reply to

Hi Witchinghour - if your GP isn't amenable, you can get home testing kits for female hormones, specifically for peri/menopause. They also test your testosterone and free androgen index which might be related to why you have no libido, but thyroid could be too. There are tests on medichecks which cover a full range of thyroid/female hormones. The advanced female hormone blood test covers a good range of hormones and certainly some that your GP won't cover. It might be a good place to start as any private professional you visit will want to do these too and will charge way more than a home test would.

in reply toJamima

I did have them tested a year ago. Testosterone pretty low & Free Androgen Index as dreadful as Oestrogen!

But getting anyone to help me act on the results has been nigh on impossible.

Jamima profile image
Jamima in reply to

Yup, definitely looks like peri and your FAI is very low, which probably assumes your DHEA is also low, and a possible link to low adrenal output. I notice from another post that you've just completed a Regenerus cortisol test which will give you a DHEA reading alongside cortisol. Worth waiting for the results of this test and then possibly approaching a Functional Medicine Doctor as the NHS won't help you here, and there are many private practitioners who won't but say they will and charge you crazy amounts for nothing. Maybe put out a post asking for recommendations from others on peri/meno and thyroid specialists - there must be one out there!

in reply toJamima

Did weep a bit reading this. I bloody love this forum! Validation!!

I got these results and those estrogen and FAI and testosterone looked too low and felt I might finally be taken seriously... Oh the naievity!

Jamima profile image
Jamima in reply to

Yes, they're low. They can be supplemented and the weeping is probably the low oestrogen - been there, done that! You may have a menopause clinic in your health board are who are progessive and willing to prescribe testosterone, but honestly, it's pot luck. I haven't approached her, but I've heard Louise Newson has a good approach to HRT including testosterone, although please do remember that any sex hormone supplementation could affect your thyroid meds so it's really important to find someone who knows about both.

Jamima profile image
Jamima in reply to

Additionally, it might be worth testing your sex hormones again as a lot can change in a year during peri.

in reply toJamima

I'd been considering it but wasn't sure if it were worth it. Presumably they could go up again?

Jamima profile image
Jamima in reply to

Very unlikely that oestrogen has increased, but FSH will have, which may meet the guidelines for NHS HRT treatment if that's something you want to try. The regenerus results may give you a better indication of what's going on with libido/cortisol/thyroid so just wait until you receive those then post them here. The problem with HRT is that it can reduce the sweats, but it can also interfere with thyroid meds absorption - this is something I'm currently trying to unpick.

in reply toJamima

Sorry, I rather hijacked your thread. Thank you so much for your help. ❤️

I'll post results as soon as I have them. So determined to get to the bottom of it all.

Wondering if my low female hormones are impacting my thyroid hormones in that while they're low and spluttering, I can't find stability in my thyroid replacement. 🕵🏻‍♀️

Jamima profile image
Jamima in reply to

Oh, please don't apologise, we're all in the same boat just trying to find answers. Please have a look at the "thyroid issues and support" thread hosted by Wrensong on menopause matters, she's a long time thyroid patient and has some good info. In terms of peri and thyroid - yes, Ive heard from some women that optimising HRT has helped, and vice versa. As ever with these bloody horomones and our own individual feedback loops - it's all very individual but I think one rule of thumb for all is to try and stabilise one set of hormones before starting on another.

in reply toJamima

I might try and get my female hormones checked again before I see my new endo. I'm weirdly worried my results will be better because then my symptoms will remain unexplained.

Absurd that I've been so traumatised by the medical field that I dread 'good' results.

I'll pop over to that thread shortly. I think I've got a log in for that website ...

Bloody hormones have a lot to answer for!!

in reply toJamima

Jamima - off the back of this post I bit the bullet at got my female hormones tested again. I have below range estrogen (-8%) and above range FSH (+216%), which confirms perimenopause.

So while I feel a bit cheated that I'm only just 37, I'm grateful as now I might start to feel better again! :)

Thank you for the push!

Jamima profile image
Jamima in reply to

Yes, I thought that’s what might happen. You are young, but at least you now know. I wonder if a dodgy thyroid can induce an earlier meno? Anyway, that doesn’t help you right now. Those results go a long way to explaining why you feel so wretched, so your option now is HRT or not? Personally, at your age, I wouldn’t hesitate. I had many very happy years in hrt and it’s long term benefits for heart and bone health are well documented. The gold standard right now is oestrogen gel or patch and a mirena coil or utrogestan for progesterone. As you’re still ovulating, the mirena is a good idea as it also covers birth control which utrogestan doesn’t. Have you used sex hormones before?

in reply toJamima

I'm certainly not going to struggle through so HRT is the next step!

I have found a paper that says "Thyroid autoimmunity is associated with higher risk of premature ovarian insufficiency" so it's just my luck!

Never used sex hormones before; I'm a bit nervous for the disruption finding the right dose but I can't carry on feeling like this. Now I know it's peri it all makes sense!

Night sweats are very infrequent but have been happening for 3 years or so. First hot flush was 3 years ago. ... but at that point I was still breastfeeding my youngest and undiagnosed thyroid wise.

New allergy to plasters came about around 2 years ago as well.

It's been an intense few years in terms of hormones! Youngest was born 5 years ago and was breastfed for 2.5 years, 6 months later came the hypo diagnosis and then 3 years of dose tweaking, and now we move onto HRT.

I'm knackered. 😂

Jamima profile image
Jamima in reply to

Ok, you’ve been through enough hormone tumult, you need some respite and at your age, even with young children, you should still have a healthy libido and good energy to deal with what young children demand. Your first port of call is your GP, I don’t know what your relationship is or if they’re ‘hrt friendly’ but you’re fortunate in the respect of HRT now being talked about and promoted. Ask if there’s a menopause clinic in your health board area because it’s really, really unlikely you’ll get good care from your GP. There are a lot of options if the GP is useless, but you might be lucky. Essentially you’ll need a sequential hrt ie, oestrogen for 2 weeks, oestrogen and progesterone for 2 weeks, roughly mimicking a natural cycle, stopping progesterone to have a bleed. In many cases a mirena will stop bleeding, if that’s what you’d prefer. Ask as much as you like, I’ve been through all of it.

in reply toJamima

Ha.ha.ha. libido! What's that? It's been a very long time since I've had even a passing interest (My poor husband. 🤣)

I really do feel very old, like I'm 40 years old than I actually am.

My GP isn't great. I went last year with the very-low-in-range estrogen and she dismissed me so I've been hesitant to try again.

I see a new endo in a few weeks who also deals with HRT so I'm hopeful she will be good. 🙏🏼 And that once I'm settled on a dose she can refer me back to the GP to cover then prescription.

All I know is that I definitely don't want anything 'permanent' like a coil. I've got a familial history of breast cancer and am considered 'high risk' so I'm not sure where that sits with HRT.

Thank you so much for chatting it through with me. ❤️

Jamima profile image
Jamima in reply to

Great news re. the endo, hopefully she’ll understand the crossover with thyroid/hrt and if she’s open minded, will also prescribe testosterone, although it’s preferred that your oestrogen is at least 250pmol before commencing T, but the endo should talk you through all of that. My private gynae prescribed for me and sent a letter to my GP asking for her to continue prescribing as he requested. I understand that’s standard practice. There used to be an ‘absolutely no way’ approach to HRT for those with familial sex hormone cancers but I’ve read some articles which suggest otherwise, your endo will guide you on that as some believe it’s progesterone that’s the risk, while others say oestrogen. Again, talk this through with endo and if you feel you’re not getting sufficient feedback, come back here. There’s really no need for women to suffer the horrors of meno if they choose to replace hormones. Peri is trickier as you’re dealing with fluctuations whereas post you’re pretty much flatlining, so if you choose to use HRT please bear in mind that the first few months might be rocky, equally, they might not. As with thyroid hormone it may take dose/product tweaks to find your sweet spot. Good luck with the endo, I hope you get all the info you need and please let us know how it goes.

in reply toJamima

Just checked her website and she only prescribes bio identical HRT so I won't be able to get my GP to take over the prescription.

1 step forwards, 2 steps back! 😂

Jamima profile image
Jamima in reply to

Yes you will, bioidentical just means it's not the old style synthetic oestrogen, ie current gel, tablet and patch oestrogen are all bioidentical unless it's conjugated oestrogen, but very few people prescribe that now. You may be confusing this with compounded hormone HRT which is also bioidentical but is made in a compounding lab on a bespoke basis.

radd profile image
radd in reply to

Witchinghour,

If you have low levels of oestrogen, you could be well into peri and almost total menopausal. What’s the status of your periods? 

If you can’t afford the meno clinic why don’t you pester your GP, armed with information about the effects of insufficient oestrogen when aged only 36!  Predominantly declining bone, cardiac and brain health as well as a compromised immune system amid a myriad of other factors. We also need balanced sex hormones to make our thyroid hormones work better. 

Have you had FSH tested for investigating into POI (Premature Ovarian Insufficiency)? 

Louise Newson says ‘Women and non-binary people who have an early menopause or POI absolutely need to take hormones, usually in the form of hormone replacement therapy (HRT), and there are no risks of taking HRT at a younger age’. balance-menopause.com/uploa...

British menopause Society says ‘Women with POI should be advised to take hormone replacement and continue to do so until the natural age of the menopause in the absence of a contra-indication to minimise this risk. The aim of hormone replacement in women with POI should be to achieve physiological levels of estradiol’. thebms.org.uk/publications/...

And by the way I cried every single day for a year (read my bio) before taking the HRT plunge and replenishing oestrogen levels. It solved nearly everything and I haven’t looked back!

in reply toradd

My periods are irregular. Not enough for the Drs to care but enough to be a nuisance. Varying from 13 – 31 days. Although they are more frequently around 23 days,

I am yet to have 2 months the same since my periods returned in 2020 after I stopped breastfeeding my youngest.

Previously had been regular at 28 days. Previous 12 cycles have been: 20 days, 24, 26, 13, 21, 26,

24, 19, 31, 22, 26, 16. Bleeds are 3 days but very light, although getting relatively heavier.

Biggest symptoms are total loss of libido. Husband is patient but I hate the effect it's having on my marriage.

I do weep at everything. Had a couple of 'kitchen floor resets' this month actually which is unusual! Just broke down waiting for the kettle to boil, sat on the kitchen floor and sobbed. Dogs come over to commiserate with me. 🥰

in reply to

These results are from April last year, Radd

radd profile image
radd in reply to

Pretty good except for the oestrogen. Why don't you try some Wellsprings cream?

wellsprings-health.com/page...

in reply toradd

The FAI result concerned me too. I ought to retest really. At time of testing I still had some sliver of libido. Now I have zilch. I'm having frequent migraines and had my first with aura last month and night sweats episode.

So symptoms are getting worse but GP made it clear she wouldn't accept any female hormone blood tests so I haven't bothered testing again.

I also don't want them to come back better and then I'm left floundering again.

radd profile image
radd in reply to

Witchinghour,

Yes, I agree the androgens are low (and most likely responsible in large part for libido loss) but you can't have testosterone prescribed until on (O & P) HRT as you have to have sensible levels of oestrogen.

ncbi.nlm.nih.gov/pmc/articl...

The other thing is we need enough thyroid hormone for normal ovarian function.

in reply toradd

Thanks Radd. I'm really grateful for your time.In a bit of a pit lately. Just feel so defeated.

Had some spotting earlier so I'm likely to come on tomorrow... On Day 18.

Might by a few dozen pots of that cream and bathe in it! 🤪

radd profile image
radd in reply to

Witchinghour,

You know blood sugar issues and different foods influence hormones on a massive scale. (I can not drink white wine without night time hot flushes even on HRT).

Two books I recommend are:

Younger You by Dr Kara Fitzgerald. This came out last year and I've read it through twice and am always dipping in and out. Don't allow the title to put you off as it refers to staying young on a cellular level and avoiding disease.

The Hormone Cure by Sara Gottfried. This is an old book now (2013) but a sensation in its time, and seems to have held its worth. Very inspiring if you can get hold of a copy.

in reply toradd

Weirdly, since I got the libre sensor 9 days ago my blood sugar levels look perfect. No matter what I eat I never go above range and never below 5.

It's like the issue just went away.

I'll add those books to my basket and try and gather enough brain power to read them! :D

in reply toradd

Hi Radd,

Have you had FSH tested for investigating into POI (Premature Ovarian Insufficiency)?

I've been pondering this lately. Would you mind talking me through it?

My FSH was 23 (3.5 - 12.5) on day 4 (Average cycle is 22 days). Is that considered high or very high? Or fine? I guess I'm trying to figure out how big a deal this is!

The Post-meno range was 25.8 - 134.8 but does only apply once post menopausal?

I've been looking into POI and have seen that autoimmune thyroid disease is considered a cause of POI so that's something worth noting, I guess.

From what I've read, POI is diagnosed with 2 FSH results in the 'post-menopause' range. In this case it would be 25.8+ but I can see if that's on a set day of cycle?

My FSH has been tested almost at its lowest point and looks like it would be significantly higher on almost any other day of my cycle.

(What's really happening here, is that I'm trying to control the uncontrollable. 😂)

radd profile image
radd in reply to

Witchinghour,

The post-meno range is just that. When you have periods you should fit into the follicular, luteal, ovulation, and as your test was taken on day four your results lie within the follicular phase. Your FSH is very elevated at 23 (4 3.3 -12.5  IU/L) on day 4 but you can’t be diagnosed with POI with regular periods. With POI periods would be non existent or extremely scanty with no pattern.

Many sites say POI is diagnosed after two results of over 25 IU/L taken at different times. NICE state over 30 IU/L, but NHS consider POI as ‘early menopause’ and use post-meno range which as you say is (25.8 - 134.8  IU/L). 

With regard to autoimmune conditions it means POI is more likely when other autoimmune conditions are present. Btw, Isabella Wentz thought she had POI as her sex hormones were so deficient but hers reversed and she ended up managing to conceive.

Your low oestrogen levels will be the cause of (or contributing to) your low mood, night flushes, aches and pains, etc but unless it continued to get worse, you won't get a diagnosis as even if periods lessened, there remains chance they will recover and you certainly have enough DHEA to convert.

I would start logging everything and retest in 6 months, because diagnosis or eligibility for HRT is made on present results and history. If your GP is not interested you could just email your monthly symptoms and any results to be recorded on your NHS record and then at sometime later ask for a meno-test. 

If I was you I would look at the Wellsprings creams which can be very helpful. When you test for GP just come off it for a week, and should it alter base lines then that has to be a good thing anyway as there's no point suffering just so GP can ignore how low your levels are.

Do you know your progesterone levels out of interest?

in reply toSneedle

Hi Sneedle,

I had my female hormones re-tested and they have shown I am probably perimenopausal. I'm so grateful to this forum because I don't think I'd have bothered to re-check my hormones because, as you say, it's very early for me to be peri.

but now I know I am I can do something about it! I feel hopeful again. :)

Sneedle profile image
Sneedle in reply to

Oh gosh I'm really pleased for you - well, not that you're perimenopausal with all that it entails, but it's a big chunk of the puzzle - and yes there is a lot you can do to feel better. I've ended up on mirena coil and 200mcg oestrogen patches and it's relieved not all, but at least the worst of the symptoms.

You did a good thing checking your hormones!👍💪🌸

in reply toSneedle

I was pleased too! Despite being symptomatic still I do feel like my thyroid hormones are sorted. So it had to be something else...

I'm glad I've figured it out ; I can start to improve again now! :)

Sneedle profile image
Sneedle in reply to

...watching their whole bodies just slowly fall into a balding, freezing, fat, infertile, anxious, depressed, hypometabolic state

I'm sorry you're having a bad time...but you just made me laugh a LOT

😂thank you!

in reply toSneedle

you’re welcome. If you’d ever like anymore hypothetical scenarios that involve hideous, slow pain inflicted upon all the useless endos/GPs out there just let me know, I’ve a whole bank of them 😇

Sneedle profile image
Sneedle in reply to

...and then when they're on their hypothetical knees, you say 'How's your mood?...I've got some anti- depressants for you'.

Jamima profile image
Jamima in reply toSneedle

I wish I had a fiver for every time I've been offered anti-depressants during menopause. It's alarming. And it's a bandaid.

Regenallotment profile image
RegenallotmentAmbassador in reply toJamima

Dr Peatfield’s book explains how those with low adrenal reserve often struggle to use T4, he says it’s all linked, you are likely to need thyroid hormones to feel benefits but need the adrenals supported to be able to tolerate. Post exertional malaise is now a part of my life and gardening seems to be a big trigger for me. I often fail to notice how much I’ve done and need a ‘read my book’ day or two to recover. He also explains that warmth on holiday makes life easier for us hypos. Everything works better when we aren’t trying to raise our temperatures. 🌱

Jamima profile image
Jamima in reply toRegenallotment

Thank you regenallotment, that makes so much sense, I've reduced my HC down to 2.5mg and tried a few days with thyroid and without HC, there's absolutely no doubt I still need the HC. I've tried adrenavive but just don't get on with it. Maybe when my thyroid numbers are better I can drop the HC entirely, but I'm not too concerned at this dose for now. Yes, that's the problem with gardening, and I have a good sized garden which I'm having to dig quite a bit, you're just so determined to get through it that you probably push too hard. And they say gardening is gentle....

Jaydee1507 profile image
Jaydee1507Administrator

It sounds to me like you have overstepped your energy boundaries. I read an old post of yours here that might remind you of a similar situation you were in once. healthunlocked.com/thyroidu...

It's probably a combination of the background of 'a lot of walking in a particularly hilly city' and then to cap it off 'quite a bit of heavy gardening'. You're actually making me exhausted reading this!

There are just some people that have to be careful around how much they do both physically and mentally. You seem to be one of them and its all too easy when you feel OK to go ahead and make hay whilst the sunshines but there can be a price. Have you ever looked into pacing or know what it is?

All that said you really do need to get your thyroid labs done + vitamins - ferritin, folate, B12 & D3 to see where you really are at thyroid wise at least.

Rest up well, drink lots of water, extra salt, good diet and hope you spring back soon.

Just had another thought. Do you have a smart watch? Tracking heart rate variability can help you know when your system is flagging and give advance warning of a crash.

my.clevelandclinic.org/heal...

Jamima profile image
Jamima in reply toJaydee1507

Thank you Jaydee. I’ve heard briefly if pacing, but I have to admit, it’s really not my kind of thing. Should I expect to be like this forever? Even if I manage to raise my thyroid levels? My vits and ferritin were good last time I checked and I supplement daily. I’ll test my thyroid levels in the next couple of weeks. Yes, I have a Fitbit so I’ll keep an eye on my heart rate. Thank you.

Jaydee1507 profile image
Jaydee1507Administrator in reply toJamima

Pacing was never my kind of thing but my body has forced me to else I will crash and burn. At it's simplest pacing is just building in rest to your daily activities and not pushing through tiredness. This link explains it well. Ignore that it goes on about ME!

actionforme.org.uk/uploads/...

I'm sure you will recover as obviously you did a previous time, but in future you just need to be aware that there is a limit to how much you can do, and respect that to prevent further crashes.

As to the cause is anyones guess and without thyroid results we can't say about that until we see them.

If you asked Dr Myhill she would say it was your mitochondria. Dr Peatfield would say adrenals, but tbh he never helped me when I saw him years ago. It could also be autonomic which is why I said about the smart watch.

It's not your heart rate but something called heart rate variability. I posted a link about it in my previous response. To find it on my Fitbit I go to the general dashboard and then under health metrics. Look for HRV.

Jamima profile image
Jamima in reply toJaydee1507

Thank you Jaydee, I’ll have a read of those, and I understand what you mean by pacing, it’s just difficult to think I have to do that now.

Charlie-Farley profile image
Charlie-Farley

I'm having to pace myself now Jamima

It is that boom bust mentality that's hard to shake when we remember when everything in our bodies worked so well and everything the body needed could be generated internally - supply on demand.

I'm still learning and still over do it from time to time as our business demands, but we are adapting and getting help in and alleviating the stress. Slowly adapting but so know where you are coming from.

Jamima profile image
Jamima in reply toCharlie-Farley

Thank you Charlie-Farley. I must say although I’m 60, in no way do I consider myself ‘old’ and the idea of not being able to exercise is rather gloomy. I don’t go to the gym or spin class, I couldn’t possibly manage that, but brisk walking and gardening are activities that make me feel well and fit, physically and emotionally. I know 2 days together is probably too much but should I expect this forever?

Charlie-Farley profile image
Charlie-Farley in reply toJamima

I'm not giving in I want an overdrive back but for now pacing myself until business is sold. Then plan is to live modestly and do more of what I want and put a bit more time into focusing on my wellbeing - I've always put myself last, much to my husbands concern. So we sell up and even if I don't get a full mojo back well at least I will savour what I have 😉

Jamima profile image
Jamima in reply toCharlie-Farley

Yes, that makes a lot of sense. I too always put myself last and would have continued if my body hadn’t said NOPE. Good luck with your plans, I hope they go smoothly for you.

Charlie-Farley profile image
Charlie-Farley in reply toJamima

They haven't so far sale fell through last year very stressful at the time - but that is life afterall. Blooming pain though 🙄😂

Jamima profile image
Jamima in reply toCharlie-Farley

Oh no, I hope that’s a sign that the eventual buyer will pay double that of the original!

arTistapple profile image
arTistapple in reply toCharlie-Farley

Just recently come to the same conclusion. Respecting where I am at but still working towards better.

Charlie-Farley profile image
Charlie-Farley in reply toarTistapple

absolutely 😊👍

tattybogle profile image
tattybogle

Re. pacing .. not my kind of thing either .. i effectively needed a personality transplant in order to do it effectively . (which took several yrs of stubbornness before i got the message)

Nowadays i still do all sort of very strenuous things , BUT .... i do a bit, then stop and have proper rest for a couple of hours ... then do a bit more etc .etc. The hard part is learning to listen to the subtle signals from your body about how much of 'a bit' is enough ... and stop BEFORE it is ' a bit too much'.

For me the early signs are feeling it's too much trouble to stand up to get the right tool and end up using the 'whatever' that is easily to hand.

most jobs i do now go like this... aim to sand 1 floor board at a time~ not the whole floor/ aim to cut a section of the grass ~not the whole garden .

If i feel ok then i might get 5 floor boards done before i realise it's time to stop while i still feel ok,.... but if i don't feel ok after half a floorboard then i pack it in for now now and try again later.

I have really had to struggle to rid myself of the attitude that "i've started ~ so i'll finish"

if i go for a bike ride somewhere , i'm now happy to get off and walk for a bit , then get back on for a bit etc .

For me the key was learning to stop BEFORE i needed/ wanted to... that way i could guarantee that i could continue later /or tomorrow , and the job definitely get's done (albeit slower) Whereas when i don't pace myself properly , i will probably end up in bed for a day or so and that job may not get finished at all.

The only thing that is a real pain about this is things like going kayaking/ hiking etc where you can't just 'stop when you need to' because you're in the middle of the sea..... i miss the ability to go on silly adventures at the drop of a hat ....so sometimes i still do them... but when i do , i expect to pay the price afterwards , and so i clear my diary for the next couple of days just in case.

Jamima profile image
Jamima in reply totattybogle

Oh, that's exactly it tattybogle! I'm very much 'finish the job I started' but I absolutely recognise what you've just explained. I actually know when to stop, I feel weary but the energy from doing the thing, whatever it is, just drives me on. It's incredibly frustrating for someone who is a do-er, but on reflection, the 'do-ing' and not stopping at an age when I should have is possibly what got me into this place. I'll take on board what you'e said, I really can't be bothered with the 2 days downtime, it's boring.

tattybogle profile image
tattybogle in reply toJamima

yes ~ it's not only boring , it's bad for you mental health.

If i do three floorboards a day for a week, i WILL have "done a little room" ~ I feel in control of my life and know what i can expect to achieve ,so i can plan ... I feel success and progress.

if i try to do 'a little room' . i will end up with "a little room with the tools all over the floor and a board up and then life took over and it's still sitting there looking at me in 4 months time"........ i feel i can't manage my life, and am overwhelmed.

Jamima profile image
Jamima in reply totattybogle

God, you're good.

Regenallotment profile image
RegenallotmentAmbassador in reply totattybogle

Similar change of mindset at the allotment, I won't just go and try and do all the endless jobs, I'll plan to do one bed.. (of 7 long thin ones), or pot up the seeds in a particular batch but not all, it has made such a difference. I've applied the same to work and marking, do way less, in smaller chunks and seem to be more productive - hooray 🥳 (party hat party tooter face)

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