aching : hi does anyone else on here ache from... - Thyroid UK

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Baileyleigh123 profile image
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hi does anyone else on here ache from head to foot when they wake up in the morning is this a sign I need more thyroxine and also every now and then have a deep depression thank s x

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Baileyleigh123
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33 Replies
TiggerMe profile image
TiggerMeAmbassador

It could be so many things like low Vit D, magnesium, folate, ferritin, sex/ thyroid hormones...

Have you any of your latest results to share?

Baileyleigh123 profile image
Baileyleigh123 in reply toTiggerMe

My doctor s are a waste of time asked them numerous times for my results but they always say everything fine but I had a blood test other week and I took my thyroxine that morning forgetting your not supposed to thanks for answering

TiggerMe profile image
TiggerMeAmbassador in reply toBaileyleigh123

If you sign up for online access this should make them available to you, if not ask for a printed copy (they are legally obliged to supply)

Worth doing a private full thyroid panel as they probably don't cover fT3/4

Baileyleigh123 profile image
Baileyleigh123 in reply toTiggerMe

Yes I think I will do a private one as I get bad anxiety and ache all over I haven’t felt right for months I’ve been on thyroxine for 30 years on all different doses from 200 mg to 300 mg currently on 175 mg x

Regenallotment profile image
RegenallotmentAmbassador

yes I think it’s a sign of being on too low (or too high) a dose of thyroid hormones and/or vitamins needing a boost. My phrase was ‘it hurts to just be’ only way I could describe it to my husband.

It’s such a relief when it goes. Takes time and small adjustments. I ache when I’m over replaced as well as under 🤦🏽‍♀️

See how the testing goes, if you have the energy call your surgery and ask for a print out of the latest results they ran for thyroid and vitamins. Then you can keep a log of how you feel at different results. 🌱

Baileyleigh123 profile image
Baileyleigh123 in reply toRegenallotment

thankyou for the reply some days I feel like I’ve been kicked all over I was taking a multivitamin but I do something on here that you shouldn’t is that right you don’t know what to do for the best x

Regenallotment profile image
RegenallotmentAmbassador in reply toBaileyleigh123

Yeah multi vitamins are:

A) generally the wrong mix for what we need all at the same time and some interact making it pointless to take them together.

B) the cheapest forms of vitamins so we don’t absorb them well.

C) the wrong dose for hypothyroidism.

Have you ever had your D, B12, Folate and Ferritin tested? 🌱

Baileyleigh123 profile image
Baileyleigh123

I think they did a full blood count so I think they are alright I think it’s this thyroxine what’s not actually 😂 how long would it take to feel the benefit after increasing the dose by 25 mg x

SovietSong profile image
SovietSong in reply toBaileyleigh123

Only way to tell for sure is to do a full thyroid panel, I use Monitor My Health who are very good.There are discount codes available on here for them also.It will give a better picture(tsh,t3 and t4)and then the admins on here can advise.The symptoms of hyper and hypo can overlap so some people think they need an Increase only for the opposite to be the case sometimes.

Baileyleigh123 profile image
Baileyleigh123 in reply toSovietSong

Thankyou will give them a try

SovietSong profile image
SovietSong in reply toBaileyleigh123

As advised on here I don't take any vitamins a week before the test and no Levo 24hrs before also.Best done first thing in morning.I always do mine first thing on a Monday morning and post immediately as I think it's also advised on here to return it Monday/Tuesday.

FancyPants54 profile image
FancyPants54 in reply toBaileyleigh123

Thinking they are alright is the way to not get well. As others have advised, you need copies of your results, with the ranges, to post here. You are legally entitled to them. I just phone up the surgery and ask the receptionist to email me copies of the tests I have had. They always just do it. We don't ask doctors for our results, they just get in the way. I have asked surgery reception for tests going back years and provided they are on the computer system, I get them. If they ask questions, you say that you want them for your personal records. You need to do this for your recent full blood count and the last thyroid test you had done (not the one where you took your meds before).

Baileyleigh123 profile image
Baileyleigh123 in reply toFancyPants54

Ok will do thankyou x

sparkly profile image
sparkly

I always suffered morning aches and pains even on T3, 20,000 vit d a week and hrt. Only when I started on testosterone did this disappear like magic. Also a lot of other things fixed that can be both menopause and thyroid related .

Baileyleigh123 profile image
Baileyleigh123

didn’t know they gave you testosterone for that my doctors are useless just say yes your thyroid test is fine that’s it x

greygoose profile image
greygoose in reply toBaileyleigh123

Never ask a doctor for your results, they'd probably prefer you didn't know! It's rare to find a doctor that likes informed patients. If you don't know, you can't argue!

Ask the receptionist for a print-out. It is your legal right to have one, they can't refuse. If they try to refuse there are steps you can take to force them.

Baileyleigh123 profile image
Baileyleigh123 in reply togreygoose

Yes I will try again greygoose we’ve spoken about this before x

sparkly profile image
sparkly in reply toBaileyleigh123

Testosterone is generally only prescribed along side hrt in the nhs. At the moment it isn't licenced for female use so some areas of the country it it very difficult to get prescribed and usually first by specialist then gp can take over prescribing. You also have to say it is for low libido ( which everyone knows its so much more than that but they are the rules to have it prescribed)

Most specialist/gp will do blood test to check your level isn't over female range to prescribe but it doesn't have to be really low.

For me testosterone was the missing piece and finally feel balanced both with my sex hormones and also feel it has greatly helped thyroid wise as been on stable dose of t3 really since prescribed T.

It doesn't work for everyone but for me and the majority it is life changing.

It rid me of awful brain fog so bad I struggled to drive and felt my brain and eyes were not in sync which each other.

Morning and evening aches and pains disappeared and haven't had any back issues sine starting T

No more severe fatigue that would floor me.

I now have normal energy and started gardening again this year after not able due to aches and lack of energy.

I now exercise, weight training as this is so beneficial to both menopause and thyroid health

Calmer, happier no more low moods and an overall well-being feeling.

Really made that much difference to me.

A lot if these you could blame as being low thyroid or if you're peri/menopause you could blame on that. I think personally thyroid and sex hormones both need to be balanced to help each other. Sometimes we fixate that are symptoms are solely due to one condition when it's actually due to other factors. Ladies of peri/ menopause age should research and learn as much as they can as this can be a factor in our thyroid health too.

Baileyleigh123 profile image
Baileyleigh123 in reply tosparkly

that’s brilliant for you so glad you feel much better I’ve actually gone through the menopause I just did it without any medication it was a pretty awful time but I got there x

sparkly profile image
sparkly in reply toBaileyleigh123

Don't rule out hrt as the health benefits are so much more than just relieving hot flushes and anxiety. Low oestrogen could be reason for you aches and pains. I never intend stopping hrt till the day I die 🙂

Baileyleigh123 profile image
Baileyleigh123 in reply tosparkly

I true hrt patches but I started bleeding again so I came off them as I didn’t want to go down that road again lol 😂 I do lift dumbbells as well as it’s hard to lose weight with under active tyroid and if I stick to them they really do work x

FancyPants54 profile image
FancyPants54 in reply toBaileyleigh123

That just means that you were not on the right product or the right dose for you. I've been on HRT for years. I did bleed on and off a bit when I was trying the different options. I settled on my current regime, including testosterone and I haven't bled since at all.

However I do still have a lot of aches, because it can be from so much more than just sex hormones or just thyroid. That's why we need to have a look at your full blood count.

Fruitandnutcase profile image
Fruitandnutcase in reply tosparkly

Wise move to stay on it as long as you can. Unfortunately I stopped in my mid fifties and although I’ve got osteoporosis now I feel that at 75 it’s probably too late to start taking it again - I doubt if a GP would prescribe it and my rheumatologist is only interested in bisphosphonates.

To Bailyleigh - could you have some form of arthritis that is making you feel so stiff in the morning? I used to waken up feeling as if I’d been run over by a double decker bus that had then gone back and forth a couple more times just for luck. I’ve now been diagnosed and am being treated for inflammatory arthritis. Those autoimmune conditions don’t half like to stick together.

sparkly profile image
sparkly in reply toFruitandnutcase

It's sad we didn't know how important our sex hormones was back then. My mum had osteoporosis and fractured her back for no reason at all. Also had a breakdown in her fifties and died of heart failure too soon. If only we knew then what we know now likely these could have been lessened or avoided. I hope in the future our daughters, granddaughters, great granddaughters have better peri/ menopause treatment as we have come so far in the last 5 years but with more research, learning and improvements in hrt women won't suffer like they have just getting the treatment they need.

All we are doing is replacing the hormones our bodies are failing to make on their own. Like we are replacing our thyroid hormones that our body's aren't making as they should.I feel so fortunate that I'm genned up enough to manage my regiem with the help of a good gp who prescribes what I need.

Fruitandnutcase profile image
Fruitandnutcase in reply tosparkly

Oh I’m so sorry to hear that about your poor mum. I will say if you have children - men can get osteoporosis too then emphasise to them the importance of a good bone friendly diet and weight bearing exercise. Start while they still have time to have an effect on their bones.

The other thing that really annoys me is I was not told about the effect of steroids on my bones. Neither was I told that having an overactive thyroid or rheumatoid arthritis could have on my bones. Or an early menopause. So many wasted opportunities where each consultant treated ‘their’ part of my body without ever asking about my family history. That really annoys me so if you have younger people in your family make it your mission to drive on about looking after their bones 😉

sparkly profile image
sparkly in reply toFruitandnutcase

I get it completely. My mum was on steroids for a time too. Wasn't monitored properly by gp and just kept getting prescriptions. We feel bitter about this as will be a factor in things.

My youngest is a personal trainer who pt's me, he's soo into fitness. My eldest has always gone the gym and weight trains too. Both know lots about peri/menopause as i'm always banging on. Youngest, now understands why some ladies will really struggle to see results even with all the efforts they put in. Also he knows if a women says she can't run, do star jumps, squats etc..not to reason why as I've told him it down to bladder control 🤭Oldest who is a mental health nurse I tell him loads about undiagnosed thyroid or peri/ menopause being reasons for mental health issues.

Fruitandnutcase profile image
Fruitandnutcase in reply tosparkly

Sounds like your family will all understand how to look after their bones. Tell the son whose lady clients are having problems with bladder control to tell them about keggels and get them to sort out their pelvic floors.

We do loads of that in Pilates. A few years ago I was talking to the practice nurse about a dreadful cough that was going around when she said ‘it’s awful isn’t it when you cough and you leak. ‘ I just looked at her and said that no I didn’t have that problem at all - thanks to Pilates. So tell your son to tell his ladies the benefits of having a good strong core and pelvic floor. 😉

J972 profile image
J972 in reply toFruitandnutcase

Hello

Regarding your inflammatory arthritis, does it have a particular name? Do you mind if I ask how it was diagnosed? I’m seeing a rheumatologist next month but the last rheumatoid arthritis blood test I had was negative yet the pain and inflammation is symmetrical, which I thought was classic RA 🤷🏻‍♀️ I appreciate there’s numerous forms of arthritis.

I wake up in so much pain, the outside of my feet are so uncomfortable now that I can no longer bear to cross my feet in the bath. My knees feel different. My ankles are sometimes so uncomfortable that I can’t rest my opposing foot or leg against them in bed. The list goes on. I started T3 last week so hopefully that’ll help at some point……

It’s great you’ve found some relief, I’m really pleased for you 😊.

Fruitandnutcase profile image
Fruitandnutcase in reply toJ972

What I’ve got is called sero negative inflammatory arthritis, when it started I was lucky enough to have a very enlightened doctor who fast tracked me to rheumatology. Both thumbs hurt and I was finding it really difficult to pull plugs out from the wall - by that time I’d bought ‘plug pulls’ from Amazon . The GP held my hand as you would to shake hands only he squeezed and asked if it hurt! It didn’t half. I don’t have the problems you are having though, that all sounds very painful.

You’re right there seem to be a lot of different types of RA. But I don’t know much about the other types - not sure I even know much about the type I’ve got.

I was given a three month ever decreasing course of oral steroids - could have had an injection but I’m a needle phobe. When it was obvious that was helping - I honestly felt like Wonder Woman when I started taking them, it was amazing - I was started on hydroxychloroquine 200mg a day and I’ve been on that ever since. If I’m particularly ‘creaky’ I top up wit a couple of paracetamol and that does the trick. I still feel creaky in the morning but not enough to make me do anything more about it. I developed steroid induced T2 diabetes which has put me right off taking steroids ever again. I loosen off after a couple of hours so I can live with it.

Hopefully you will get some sort of help from your rheumy next month. Did your blood tests not show any sort of inflammation?

J972 profile image
J972 in reply toFruitandnutcase

Thanks for responding, lots of helpful info to gen up on prior to the appointment. By inflammation do you mean CRP? If so, mine’s always low in range.

It’s great that you’re able to manage with paracetamol, long may that be the case.

I’m sorry about the diabetes, I had no idea steroids could cause that.

Fruitandnutcase profile image
Fruitandnutcase in reply toJ972

I don’t know what they mean by inflammation for inflammatory arthritis because when I do my fingerpick tests for my thyroid my CRP is always low but I didn’t start doing that particular test until long after I’d been diagnosed with inflammatory arthritis so I’ve no idea what my results were back then. I had a big flare of diverticulitis last year and my CRP was higher than I’ve ever see it then.

I think I am very lucky to manage with paracetamol. When I fractured my sacrum a hospital doctor gave me Naproxen and that worked well but short.y afterwards a private physio referred me for a couple of private MRIs and he wrote to my GP to ask that I be given good pain relief. She prescribed much stronger naproxen along with omeprazole and I was really ill with it so it was back to paracetamol, I also bought a PEMF (pulsed electromagnetic field therapy) mat that I lay on twice a day for about half an hour each time which really helped my pain. There are a contraindications for using it and also you have to be able to lie on your back it was fine for me.

No, I had absolutely no idea about steroid induced T2. That came as a massive shock. I enjoyed feeling like WonderWoman but I’m not sure it was worth it. I’m no longer T2 - I bought a wonderful book about how to reverse T2 and ate my way out of it but it was something I would much rather not have had.

J972 profile image
J972 in reply toFruitandnutcase

omeprazole has a bad rep amongst those with thyroid conditions due to the prevalence of low stomach acid. I was prescribed it fairly recently, I took it for a couple of days (I was desperate) and had horrible side effects, including worsened pain and blistered lips.

It’s interesting what you say about feeling great on steroids, I’ve had a couple of steroid injections in my elbow (following an injury playing hockey) and definitely had a skip in my step. Doesn’t last though!

I’ve never heard of a PEMF mat, I’m always learning on this forum! Another rabbit hole to disappear down….

Well done for reversing the diabetes! 👊🏻

Fruitandnutcase profile image
Fruitandnutcase

I know, I took the oral steroids back then. Knowing what I know now I wouldn’t take them again if I could avoid it. I used to watch those GP programmes on TV and every other person was given a steroid injection and it was often not their first one so it was obvious that sadly those injections don’t have a lasting effect. Just another way of getting patients out the door.

Yes the diabetes, that was a real shock. A even bigger shock to realise that it wasn’t uncommon. The book I used was by a Dr David Cavan Reverse Your Diabetes: A Step by Step Plan to take control of T2 Diabetes. That and a blood glucose meter and I followed his instructions to the letter and when I saw the nurse again I wasn’t even pre diabetic.

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