Fatigue is back with a vengeance - and low mood as well now

[Josephineinamachine]

Hallo all

Really struggling with fatigue at the moment. Think it might be the worst I've had although I'm not sure because I also seem to have lost my memory and my marbles as well!

I feel like I've turned into a wannabe couch potato - and my mood is really low a lot of the time.

It's really distressing. I seem to be getting away with doing very little work at the moment (it's a quiet time really) but feel incredibly guilty about this, because this is not me!

I increased my Levo from 75/100 to 100 a few weeks ago (can't remember when). I'm not sure if this is related to that - but in recent NHS blood test TSH was not flagged (couldn't see the number over the consultant's shoulder) but it's not been commented on as a problem so am assuming that it's okay.

Also now have 'something not right with my gall bladder' (scan tomorrow) and am now apparently at risk of developing primary biliary cirrhosis at some point in the future. Yay. Maybe this news has tired me out?

Fatigue is worse in the afternoon. I can usually get to about 12 noon and then I'm done for.

Has anyone split Levo or taken Levo at night and found that this sorts out the fatigue and helps with mood? Just wondering if this might help?

Or maybe I'm still acclimating to the increase in dose?

Thank you all

[Hidden]

Any kind of stress fatigues me. A big stress like a health one such as yours would make me almost bedbound.

Don't underestimate how much a hypo body hates stress!

[Josephineinamachine in reply to Hidden]

I wondered if it was stress…they’ve had me on a ‘cancer pathway’ (nothing found) for about 3 weeks which has been efficient (NHS have moved SO quickly) but deeply scary…so yes I don’t seem to manage stress very well anymore. And that will cause fatigue?

[Hidden in reply to Josephineinamachine]

Absolutely. At least, it does for me.

In my experience any kind of stress will make me immediately tired. If its a prolonged stress then I have to be really careful how I manage my time and what i try and do.

I was on a cancer pathway at the beginning of the year and I couldn't function well until it was over.

Give yourself time and grace. Your body is doing the best it can with the resources it has.

If you had a friend in your position what would you say to them? I very much doubt you would insist they get up and washed and dressed, do chores before work, cook 3 healthy meals from scratch, do a full day's work, do more chores, walk the dog, see friends and go to bed. And repeat ...

You would tell them to be gentle with themselves, that things will improve but you must give your body time to heal. Resting when you are unwell isn't doing nothing. It is healing.

Do what you can to help yourself when you can but don't put any extra pressure on yourself. If you manage to cook dinner tonight, wonderful! If not, a microwave meal will sustain you and is good enough.

In a years time you won't recognise yourself but you have to be patient with your body in the meantime. You've got this.

[rhenrick in reply to Hidden]

I am taking a lot of comfort from your wise words also. I will listen to my body more and if I am fatigued I will rest and not feel guilty.

[Hidden in reply to rhenrick]

You mustn't feel guilty. (Its so easy to say it and terribly hard to do it!) But you didn't chose this. You aren't chosing to be tired so you have nothing to feel guilty about. ❤️

[Josephineinamachine in reply to Hidden]

Aww THANK you for sharing and your lovely kind words. You take care too - I’m sorry you went through this as well x

[Staffsgirl in reply to Josephineinamachine]

Yes...it does for me, Witchinghour’s post, above, is spot on. Wise words. ( It could have been my own response but Witchinghour beat me to it!)

I, too, was on cancer pathway at start of year, (but not now), and still feel the effects of the stress.

[Josephineinamachine in reply to Staffsgirl]

Glad it’s over for you… it’s a scary time! X

[fizzybee in reply to Hidden]

Sorry to jump in but I am wondering what stress is I know that may sound daft. I have a perfectly comfortable life everything I could wish for . But I have a niggling little voice in my head most days over a personal slight that cut me deep. I tell myself it is nothing but can't let it go , I also hate my body now ,I maintained my weight through out my life until my late fifties now I hate seeing myself and that is constantly whirling round in my head. This all seems trivial to me when I compare myself to others with real personal and health problems. Writing this as made me cry is this classed as stress or am I a self absorbed . I should say my levels are okay T3 could be better but the fatigue and low mood is really bad .

[GrowingVeg in reply to fizzybee]

Hi Fizzybee, it sounds like your struggling. This is such an invisible health problem to others, but we see the changes in ourselves and how we used to be. I seem to feel well for a while then I'm knocked off track again. I'm struggling to get up and go to work today, been like this for about a week now. Looping thoughts about things I've said or done, uncertainty about sending emails, it is all very draining and seems to take forever to do simple things. Foggy old brain, and slow aching overweight body. It's been a stressful few weeks so it seems that's taken its toll. I was feeling much better!

Try not to compare yourself to others... Be as kind as you can to yourself.

[Josephineinamachine in reply to GrowingVeg]

It definitely affects my self image this thing - and my confidence has drained. I feel a constant state of loss. Yes, that in itself is stressful!!

[arTistapple in reply to fizzybee]

Stress can be something that would make anyone stressed. Death of a loved one for example. However we all have our individual patterns. For women (and I don’t mean to be sexist) have a lot of issues around what on the face of it might be considered vanity, but ask any woman on chemo and loss of hair is a big deal. I worry about this too, even although it’s not happened. Watch Hannah Fry on BBC Catch up. This incredible young woman has been so open about lymphoedema after cancer treatment. Hypothyroidism (for me) means I can’t deal with things that would not have given me the slightest bother before. I hear myself saying how fortunate I am so why do I feel so stressed/Sh1t? It’s a symptom. I had a consultant say to me “You are obviously not unwell” in a totally deprecating manner. Frankly rude. I have had it said in different (more positive ways) whilst I was at some of my lowest ebbs. With this illness we can’t even have our illness in peace because we look ok? Hypothyroidism hides a lot. It’s another difficulty, people just don’t know what we are dealing with. It piles on the stress and even guilt. In my view these are symptoms, not hypothyroid exclusively but they are symptoms of hypothyroidism.

[rhenrick in reply to arTistapple]

Your words are so true. I have Hashimoto's and no-one can see how I suffer because I look ok on the outside. The fatigue and depression have been very bad since April and I am forcing myself to walk every day when all I want to do is lie down. So many of us are suffering with this and doctors and endocrinologists do not understand. But I am getting much comfort from all the posts. Thank you.

[arTistapple in reply to rhenrick]

Rhenrick I get so much from the posts too. I felt so alone before discovering this forum. I think it is a vital lifeline. It has helped so much. No-one should feel alone when they are ill but the support and knowledge here is critical, especially when we just can’t think straight. Others (wonderful strangers) are helping us.

[BetterDayzAhead in reply to rhenrick]

It really is bewildering in 2022 that the "you look ok" thing is still going around. I recently had 2 practically back to back operations 1 removed a 25mm colonic polyp and the second to have a hernia removed Laparoscopically, the appendix came out instead and hernia is just a huge scarred over internal scar. I come through the airport in my wheelchair, I'm 44 and look trendy with make up and clothes, the ladies always always need to search me, swab me, the wheelchair. I had to say please don't touch my stomach I have three incision words post surgery. "You don't look sore, wow" I'm use to living in pain my fave doesn't look like 😫 this permanently and yes, I make up and dress up as otherwise I'd have no life and no self expression. We are all needing a lift mentally or spiritually or physically at times and we are valued, we matter, our confidence matters. Seek out everything to help yourself and keep at it. Keep on their toes and we will keep pushing their expectations and stereotypes of sick people.

[Hidden in reply to fizzybee]

Fizzybee, this sounds more like anxiety to me. I consider stress to be from an outside source; bigger ones such as a horrible boss, a bereavement, or a health scare. As well as smaller ones; finding last minute childcare, my husband not filling the car up with petrol and I'm already running late!

When I am anxious I spend a lot of time ruminating on social interactions. Spiralling on 'did I seem weird?' 'Why did I say that?' 'Why can't you just make conversation like normal people' 'I wonder if when they said that what they actually mean was this and they actually only tolerate my presence. They don't actually like me'.

You sound more like you're anxious. It's a horrible place to be but you can help yourself. Mindfulness can be really helpful; it was a game changer for me. But also, being properly medicated took away 80% of my anxiety.

[arTistapple in reply to Hidden]

Wow. That is a fab description. I salute you. However what you describe is most definitely a symptom. A symptom which manifests itself as stress/anxiety. I hasten to add not a symptom which would necessarily be recognised by the medics as being particular or peculiar to hypothyroidism. Could be a symptom of many diseases. But your descriptions of the thyroid related symptom are pretty nigh on perfect in my own experience. Doesn’t matter if they are manufactured internally. You say yourself that 80% goes when properly medicated. I totally agree.

[Hidden in reply to arTistapple]

100%. I wasn't trying to imply anxiety was something you do to yourself!

I absolutely agree that anxiety is a symptom, not a disease. I just didn't want to overwhelm fizzybee.

[arTistapple in reply to Hidden]

Your thoughts for fizzybee are off course absolutely commendable. I too don’t want to overwhelm fizzybee and I am far from being out of step with you. On the contrary, your description was explicit, brilliant, perceptive AND brave. I feel your explanation is very much at the heart of the matter re: thyroid associated problems. Well especially for me and I thank you.

[fizzybee in reply to arTistapple]

Thank you for your thoughts between you and Witchinghour I have a better understanding of stress and anxiety. Never bought of myself as either.

[GrowingVeg in reply to Hidden]

That sounds exactly like the spiraling thoughts in my mind too... I never thought of myself as an anxious person...

[fizzybee in reply to Hidden]

Thank you for your response , I have never thought of myself as an anxious person but it is a better fit than stressed . To be honest I think I am more angry than anxious I am sick of feeling not quite right and doctors not understanding and if anyone suggests weight watchers or some such I feel I could find myself talking to the police 😁

[Josephineinamachine in reply to fizzybee]

🤣 brilliant! People just don’t understand and it’s very hard to articulate. I currently ricochet between anger, frustration, anxiety, sometimes fear as well, and just darn flat. Desperate to make room for something more positive!

[Hidden in reply to Josephineinamachine]

I also watched an interview with Michael Rosen who said hypothyroidism dulls your emotions. He said he wasn't that sad when his mum died and just felt like his emotions were dulled. I hadn't recognised this a symptom until he said it.

2 years ago, almost to the day, I got my first levo script. Now I'm almost entirely well again. Not quite but very nearly. I honestly can't remember the last time I felt as well as I do. Years and years. I had counselling to help manage the feelings of grief I had for all those lost years and the time I lost with my children when they were babies.

It's up and down but before you know it you'll be skipping through town extolling the joys of spring!

[arTistapple in reply to Hidden]

I obviously lost track of this post. I am so pleased you are feeling so much better. I just wanted to add to the story. The money spent on counsellors; us, taking care of what we expect doctors to spot. Time spent knackering ourselves at the gym. Money spent on physios as the NHS just can’t come up with the goods. Private endos. Private prescriptions. Has the NHS already gone private when we were tied up in our illnesses and we did not notice? I have spent a fortune having this illness and I appreciate many others can’t. It’s an expensive business being hypothyroid. This was recognised many moons ago and it’s why anyone diagnosed got all their prescriptions free! Pity there is not the same care shown any more. Rants again.

[Hidden in reply to fizzybee]

I think language around this matters. You're not 'an anxious person'; you're a person with anxiety at the moment.

I hear you with the anger! I was filled with anger, which ultimately was disppointment and sadness. I remember getting off the phone with my GP furious that I had been dismissed once again. I rang my mum to decompress a bit and ended up hysterically crying because the doctor "stopping me getting well".

The anger galvanised me not to take no for an answer and keep pushing to get well. I hope you can turn your anger outward - it is a righteous anger!

[fizzybee in reply to Hidden]

I am trying, because face to face appointments are scarce I am sending my GP my latest Medicheck results along with a letter explaining my understanding of the condition and what I think is the thing to try , all because of this fantastic site. Hopefully she will read it fully and we can have a two way conversation.

[BetterDayzAhead in reply to fizzybee]

Everything is relevant and immediate in your own circle of life, never compare, never feel like you are not worth the fuss or worry. Like GrowingVeg said you sound like you are struggling. Are you in your 60's now as you referenced your good kept weight in 50's. I'm sure hormonal changes like depleting estrogen can affect your mental, cognitive abd weight. Im a Surgical menopause patient since 39 so know how key it is to have good hormone health accompany thyroid treatment health. Are you in a HRT or menopause clinic they cab be a massive help. I use both add back estrogen and testosterone bio identical gels. They help tremendously. I'm also a chronic pain patient and need alot of resources like those above plus my B12 injections. Unfortunately as we get older and want to stay relevant and more like our old selves we seem to need more resources/supplementing to do so. Please be proud of your body its getting you so far and its probably deficient in a few things and chugging along doing its best. Good luck and try to get hormones and vitamins/mineral checks and referal to menopause clinic may help? K.

[Lalatoot]

Josephine, Try splitting your dose to see if it helps. Dosing is such a personal issue that you don't know until you try!There was discussion on here about splitting levo doses. The proposed theory is that when some folks take their levo dose in one go the spike in T4 levels is too high for them so the feedback loop converts a higher percentage of the T4 to Rt3 to protect the body from being overmedicated. Splitting the daily dose does not give such a spike in T4 levels so in those folks more can end up as ft3.

[Josephineinamachine in reply to Lalatoot]

Thank you. At least if I do this I’m not changing the amount…I keep thinking about it. I saw a big discussion a while back with people reporting that it helped. Hoping it helps with the fatigue and mood because the leg and foot pain has improved a lot - just need my head to be better now… 😊

[Litatamon in reply to Lalatoot]

Do most people do the second half at midday? But it would still have to be four hours away from food correct? Thank you.

[Lalatoot in reply to Litatamon]

1 hour before eating or 2 hours after, I believe. I used to take my afternoon dose at 3:30pm. I did at one time split my levo into 3 doses - first thing, 3:30ish and bedtime. I now dose twice - first thing and bedtime.

[Litatamon in reply to Lalatoot]

Thank you!

[App1]

Can’t assist you re the Levo question but can identify with your anxiety and stress levels. I had a couple of goodish days recently, followed by yesterday, which was downhill with fatigue and today also, despite nothing having changed in my eating/tasks/ habits/meds. Hope you manage to get a bit of sleep tonight and let us know how you fare with things.

[Josephineinamachine in reply to App1]

Thank you… 😊 I wish it wasn’t so up and down…well mainly down at the moment… and there isn’t t always a reason why.

[Levo50]

👋

Bless - really feel for you, the gall bladder issue will be draining you no doubt, hopefully all will be fine, try not to worry until any diagnosis, you could be just fine!

I’m certainly far from experienced enough to pass comment although from experience and being around this forum for some time I do believe it takes time (minimum 8 weeks) for your body to adjust! Personally I wouldn’t make any changes to T4 as yet! Took me a while to try 100 and settle.

Getting your vits checked may be worthwhile?

HRT massively helped with my low mood but again it’s all hormone related so I always make one change at a time and stabilise before changing - frustrating but your body needs time to adjust! So maybe this is worth exploring later in this journey?

Hugs - keep that chin up and if fatigued go with it, it’s all part of the process x

[Josephineinamachine in reply to Levo50]

👋 hallo! aww thank you! Yes I think you’re right… here I am rushing it again and I was so determined to NOT rush it this time. Right…going to give it a few more weeks… thank you!!! 🙏🤗 hope you’re doing okay? 😊

[Levo50 in reply to Josephineinamachine]

Sounds like a sensible plan to me - worry is exhausting so that won’t help your body adjust!

I’m doing well thank you, preparing for a much needed holiday abroad to switch off and reset! X

[Josephineinamachine in reply to Levo50]

Good!! Enjoy, rest and relax 😊

[Starling87]

Have you checked your vitamin levels? I always underestimate them until I'm taking a break, and lo and behold! Fatigue.

Sudden stress and anxiety makes me incredibly tired as well, especially when I haven't experienced it for a while.

[Josephineinamachine in reply to Starling87]

Hey Starling87 (starlings are my favourite birds) I’ve had one stressy thing after another since about February so I guess this could be a contributing factor… my vits were good at the last medichecks although D a little lower than usual so I’ve upped that recently. Good to keep an eye on them! Thank you 😊

[Popoff]

Sorry to hear about the problems that you currently experience. I also tend to have fatigue after lunch whenever I am overmedicated. In fact for me that is the first sign. So it is worth reducing your morning dose by say 12.5 mg (by splitting the 25 mg tablet if possible) and see what happens. If you cannot split the 25 mg tablet, may be worth going down to 75 mg for a couple of days and see if you notice any difference. Or even split the dose between morning and late afternoon. There is a bit of trial and error in this process. If two days after you reduce the dose, the fatigue does not go away, try to split the dose say 75 mg in the morning and 25 mg mid afternoon. This has worked well for me. I hope that this helps and good luck.

[Josephineinamachine in reply to Popoff]

Thank you - I think I may try this…did you tolerate the 25 in the afternoon okay? Did you still manage to sleep and what time worked for you? I know we’re all different but it’s good to know what works for some! 😊

[Popoff in reply to Josephineinamachine]

As first I tried 25 mg at 3pm and I did not sleep well. After two days, I reduced the afternoon dose to 12.5 mg and felt very well and also slept well. So for me, this is working well. I also tried a later dose and again that did not help, so for me a lower dose at mid afternoon seems to work well. Worth trying and see what works for you. Good luck.

[Josephineinamachine in reply to Popoff]

🙏 thank you this is really helpful 😊

[arTistapple]

Don’t know if it is worth mentioning here but we seem to be having a short run of good weather. Whilst I like the sunshine and warmth, I find that it can make me feel not so good. For me it’s not being able to make the most of it, through being unable to adapt to it quickly enough to enjoy it. I need a few days to do this but in the UK the good spell disappears before I can get to that stage, leaving me annoyed with myself etc etc. I am the same on holiday abroad but normally the weather lasts long enough to adapt. When I can adapt to it, I enjoy it. It’s called homeostasis and my view is hypothyroidism interferes with this natural process. We like warmth but can’t handle quick changes. Our metabolism can’t respond quickly enough. Same happens at the other end of the thermometer. Find ourselves deeply cold when we did not notice a change in temperature.

[arTistapple]

Forgot to mention particularly the fatigue that good weather creates for me. I can have a short burst of energy before it is ‘all used up’ as the weather stays. Then boom. Fatigue.

[Josephineinamachine in reply to arTistapple]

Well all this makes sense…! I used to find every excuse to be out in the sun, but now I hardly make it outside and find myself just staring at it from indoors. Then it’s gone and I’ve missed it and feel cross with myself. I’m going to research homeostasis now, thank you!

[FancyPants54]

Why did you increase your dose? Could it be too high for you? I find over dosed makes me exhausted.

[Josephineinamachine in reply to FancyPants54]

Hey 👋 How are you? I increased because I’d overmedicated on T4 and T3, then stopped T3 and went lower on T4 and then held it but became more ‘hypo’. Had bloods done which indicated under medication so increased and then hey presto I think you’re probably right - I’ve gone over again. My RHR is not as bad as before though in terms of being too high. But yes this fatigue is different to the under medicated fatigue. Think it’s probably over… I think my sweet spot (if there is one) must lie somewhere between 75/100 alternate days, and 100 every day. I was going to try and hold this but it’s getting worse every day - feel like a Zombie and permanent out of body experience. Now trying to figure out what next…drop dose, split dose…? Drives me nuts this!

[FancyPants54 in reply to Josephineinamachine]

It's really hard if you are very sensitive to it. I think you need to drop your dose a bit and see if it improves.

I'm not too bad. I think I got over medicated (I have very few reliable markers for it now because of my atrial fibrillation giving me a high erratic heartbeat. But the RHR had risen and so had my temp. I was floored with fatigue. Unable to walk without looking at the ground in case I tripped. I felt much better this week on a lower T3 dose until the heatwave hit yesterday and wore me out. Feet and ankles like balloons. And today is hotter and worse. I feel over again, as I could be if it's hot. I'm due to go to a small party tonight so I've left things as they are today but might try a small decrease again tomorrow.

[Josephineinamachine in reply to FancyPants54]

I hear you with the heat! I’m floored too and it hasn’t helped my brain with work today. It’s taken way longer than it should. I hope you feel well enough to enjoy your party later and that a further decrease helps you 🤞 🤞🙏 x

[Batty1]

I split my levo and find it helps with fatigue but it took a little bit of time for my body to adjust.

[Josephineinamachine in reply to Batty1]

Hi Batty1 thank you - how long did it take you, and how do you split the dose please?

[Batty1 in reply to Josephineinamachine]

It took about 2 months for me and Ive been doing it for 3 years now and yes at times it can be a pain splitting dose because everything you do comes to timing around thyroid meds.

[Josephineinamachine in reply to Batty1]

I can imagine but I’m going to give it a go! I’m reducing for a couple of days then will slightly increase with an evening dose added. Thank you!

[Partner20]

Stress can be exhausting, and can also cause a rise in TSH. You need to give yourself sufficient time to recover from these recent unsettling events before adding to your worries. FYI one symptom of pbc is absolute fatigue, which may be something to look out for. The British Liver Trust group in HU is an excellent source of information, help and support if you need it. 🙂

[Josephineinamachine in reply to Partner20]

Thank you Partner20 the consultant Gastro bloke said I’ve got the antibodies for PBC but don’t have it yet because my liver function is okay. Said there is a probability I’ll get it in the future so that’s something to look forward to 👀 really hope it stays away…he said antibodies won’t cause fatigue but who really knows? So stress makes TSH higher? I didn’t realise that!

[Partner20]

I have a similar situation with a lupus/ctd diagnosis which is lurking in the background, although three rheumy consultants believe that my current symptoms are more likely to be connected to hypothyroidism. Hope that your latest diagnosis stays like that too! Regarding fatigue and low mood, another well-known culprit can be low Vit.D. I know that I and many others only feel their best with a level at the top of the range. Might be good to get this checked out.

[Josephineinamachine in reply to Partner20]

Thank you and I’m sorry you have a similar situation. It’s right rubbish at times trying to work out what’s going on! Have increased D Vit so hope that helps. Thank you - take care 😊

[Partner20 in reply to Josephineinamachine]

You too!🤗