Giving up: It's not quite 2am, as I sit and type... - Thyroid UK

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Giving up

Kitten-whiskers profile image
76 Replies

It's not quite 2am, as I sit and type this. Really miserable and full of unpleasant symptoms that never go away. Everything seems to have been made worse by this early menopause and it's going to be well over a month before I get any treatment for that. I take a lorry load of high quality vitamins but start to wonder just exactly what are they doing for me. Had a massive flare up a few weeks ago which has left my muscles all knotted up because of all the stress (I presume) and I can't get that sorted for a couple of weeks as he is fully booked. Wait, wait, wait is all I do hoping that I am going to stumble on something that will work for me, but what's the point, nothing really works for to long, even pain killers don't work. Thanks for listening.

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76 Replies
ChristinaT profile image
ChristinaT

Hi there sorry your feeling so terrible. I don't know your history sorry but aside from early menopause what are your symptoms? (I have had a totally hysterecomy a few years ago) and ive got hormone issues (I know that doesn't mean anything) but I can sympathise

ChristinaT profile image
ChristinaT in reply toChristinaT

Ive just had very brief look at your history (I hope you don't mind) and can see you have thyroid issues aswell as now going through an early menopause :( im very sorry to hear this. I was 27 when I had my op and I have no children. I am not surprised you feel as terrible as you do. Have you been prescribed any hrt for your symptoms? Have they definitely ruled everything else out regarding your low Estrogen?

Kitten-whiskers profile image
Kitten-whiskers in reply toChristinaT

Good morning ChristinaT,

Thank you for your reply. I am very poorly not just low thyroid, but leaky gut, low stomach acid, fibromyalgia, Intolerances so on a very restricted diet, Adrenal problems, unable to sleep and now this early menopause on top of not being able to tolerate much thyroid medication without setting off a major flare up.

At the end of the month I am due to have more blood tests to check chromosone deficiencies and also something to do with the ovaries - then when I go back mid August there will be the descussion of treatment : <

jennygrigg profile image
jennygrigg

Hi kitten-whiskers,

Please don't give up, there are answers out there and help to make you feel better. Many of your symptoms sound like (as well as thyroid) adrenal issues. I am guessing that if you are posting at 2am you cannot sleep, which is a definite low cortisol problem, as is hormonal imbalances, anxiety and the list goes on. I spent 2015 awake all night with my 22 year old daughter and it was absolute hell. Insomnia causes so many additional issues, as if you aren't suffering enough. We found the answer for Georgie was increasing her dose of hydrocortisone and using a sleep restriction protocol. It made all the difference. You can put the sleep restriction protocol in place immediately but the cortisol will take a little time because you need to do a 24hr saliva cortisol test to see how your adrenals are performing. Once you have this you can determine if you need an adrenal cortex supplement or hydrocortisone therapy. We are in Australia so had to have the tests done privately, not sure what it is like for you in the UK. Have a read of the info on this site rt3-adrenals.org. The sleep restriction is torture to start with but it made a difference for Georgie by night two. sahealth.sa.gov.au/.../bedt... this is the link for the sleep restriction protocol. Forget all of the sleep hygiene rules and you basically start with 6 hours sleep per night initially, we went to bed at 12am and got up at 6am no matter what. The first night we only had 2 hours sleep but by night 2 the 'sleep pressure' was really high and we slept all night and haven't looked back. This is after 21 years of terrible sleep for Georgie, because low adrenal function was undiagnosed. I couldn't see any of your previous test results or your medications, so I can't offer any advice in this regard, but for Georgie the only way she started to feel better was addressing her adrenals, iron levels and t3 only therapy. Please don't give up, we are here to help. Hugs to you and take care:)

Heloise profile image
Heloise in reply tojennygrigg

Thanks for posting that, Jenny. I didn't know exactly how the sleep restriction worked but will definitely recommend it to others if you feel it is effective.

jennygrigg profile image
jennygrigg in reply toHeloise

Hi Heloise,

It has certainly been effective in resetting the sleep cycle. Importantly too though is making sure your adrenals are happy :)

Heloise profile image
Heloise in reply tojennygrigg

May I ask which protocol your daughter used with HC? Low dose?

jennygrigg profile image
jennygrigg in reply toHeloise

She used a full physiological replacement dose, 25mg dosed to match the diurnal curve. 6.30am 10mg, 11am 9mg 3pm 7mg - should be a little different but she can't take a bedtime dose so we add it in during the day. This was the starting point and now she needs around 32mg due to the stresses of university exams and placements and work commitments. My understanding is that using anything lower than 25mg will make you feel worse than none as hc therapy will suppress your own adrenal function (to allow your adrenals to rest and recover) and if you don't fully replace the body's requirements exogenously you will feel terrible. Using HC has been a godsend for her and I think she will probably be on it for life, given her life without from a very young age has been awful. :) Jenny

Heloise profile image
Heloise in reply toHeloise

sahealth.sa.gov.au/wps/wcm/...

Kitten-whiskers profile image
Kitten-whiskers in reply toHeloise

Thank you Heloise

Kitten-whiskers profile image
Kitten-whiskers in reply tojennygrigg

Good morning Jenny,

Thank you very much for your reply, I couldn't open the link and when I tried to type it in the message 'this site can not be reached' - would you mind elaborating on this please? as for years I have been only getting around 2 hours sleep a night. I take Melatonin but that doesn't seem to help.

I did have a salvia test done years ago, which showed adrenal fatique (at the time DHEA was fine) and I did have HC for a while, which was essential but came with it's on set of nasty effects so I had to stop it and rely more on Buffered vitamin C.

Thank you very much x

jennygrigg profile image
jennygrigg in reply toKitten-whiskers

Sorry about the link, I am not so good at the technology. For all of the details it might be worth googling sleep restriction therapy steps and click on the (pdf) Bedtime Restriction Therapy-SA Health. We started the protocol with going to bed at 12am and getting up at 6am and repeated this for a week (or as long as it takes to fall asleep within 30 minutes). Even if it takes a while to get to sleep you must still get up at 6am and cannot have any naps during the day. Eventually the sleep pressure builds and you fall asleep quite quickly. When falling asleep in about 30 minutes becomes consistent you can add 15 minutes either end of your sleep. We brought bedtime forward. You then repeat the process over each week until you are getting somewhere between 7-9 hours sleep. I hope you can read the actual document to help with all the details :) I really hope it helps too. Can I ask what sort of nasty side affects you had from the HC? As it really sounds as though you may need help with your adrenals again. Take care x

Kitten-whiskers profile image
Kitten-whiskers in reply tojennygrigg

Hello Jenny,

Thank you very much - I will be trying this out, It will make a big difference If I can get some sleep.

With the HC I got a really nasty sore burning chest, trouble breathing, blazing hot face, migraines, pain all over the body increased, stress increased and dizzyness, Candida would be 100 times worse ( I think that's all the extra symptoms, from memory)

I can't help thinking something else is wrong as all that I have done, isn't making a difference : <

Thank you for the info, this will be really helpful

Best wishes

Debs x

jennygrigg profile image
jennygrigg in reply toKitten-whiskers

Hi Debs,

Wow that is awful! Interestingly candida occurs quite often with adrenal dysfunction. Like you, my daughter Georgie's issues are also really complex. Whilst T3 and HC have made an enormous difference there are still some pieces of the puzzle missing for her to fully achieve optimum health. She has had so many tests done !!!!! Some of these tests have showed copper toxicity (which goes with her methylation problems) . Copper toxicity goes with adrenal fatigue, hypothyroidism and hormone imbalances too. It is like the chicken and the egg, I don't know what comes first. So she is working on slow and gentle detoxing now, via a very restricted diet low in copper, fodmaps, carbs, life and fun!!!!! The last two are a joke, but it feels like it sometimes - I would love for her to be a 'normal' 22 year old. However we just keep going forward one step at a time :) Reading about your intolerances to thyroid meds and many other things is definitely adrenal in nature. What dose of HC were you on? Was it the full physiological replacement dose of 25mg? Have you ever tried adrenal cortex, which doesn't suppress your adrenals just supports them? Take care x

Kitten-whiskers profile image
Kitten-whiskers in reply tojennygrigg

Morning Jenny,

Your poor daughter, I am so glad she is making progress.

Where do you get these sorts of tests done?

I could never get up to 25mg, even when things were terrible, 10mg was the highest I got to but not without miserable symptoms but in other ways it helped - oddly enough.

I did try nutri adrenal and that was great for a week and then i got terrible Diarrhoea and had to stop taking it, if that hadn't have happened i would have been well my now, i'm sure. I did try other Adrenal Cortexs and suppliements but none of them seemed to do any good.

Best wishes

Debs

jennygrigg profile image
jennygrigg in reply toKitten-whiskers

Hi Debs,

In Australia the doctors can test for serum copper, ceruloplasmin and urine copper which give an indication of levels but doctors don't always understand them, so lots of personal research. Debs my understanding of HC therapy is that you have to take a full physiological replacement dose of 25mg, it is not something that you titrate upwards as needed because the HC will suppress your own adrenals and you end up with a plethora of low cortisol symptoms - feeling very very unwell. Diarrhoea is one of the first symptoms Georgie gets when her cortisol is low and she then stress doses. She also recalls having a burning face with low cortisol before starting HC therapy, so I am thinking your symptoms were from adrenal suppression and too low a replacement dose. Cortisol controls blood glucose levels, so if cortisol is low you will experience hypoglycaemic episodes which cause dizziness. Do you use celtic sea salt in your water throughout the day to help your adrenals ? The rt3-adrenals.org site specialise in this area and I feel could really help you. Take care Jenny x

Kitten-whiskers profile image
Kitten-whiskers in reply tojennygrigg

Thank you Jenny, I really appreciate this information. I use pink himalayan salt and that seems to help. I will have a look at the RT3 website.

Best wishes

Debs

Cariad-y-Mor profile image
Cariad-y-Mor in reply tojennygrigg

Hi Jenny, thank you for the information about the sleep restriction routine. Like many hypos I suffer from sleep deprivation so I will definately try this. ☺

jennygrigg profile image
jennygrigg in reply toCariad-y-Mor

Let me know how you go. From my experience adrenal issues are quite often at the root of sleep problems, which many hypo people have. The thyroid starts to struggle, so the adrenals kick in to try and help out, then comes dhea which will show high initially but then it runs out too and then our sex hormones try to help and they get out of balance. Our poor bodies try really hard to help, as doctors misdiagnose or undertreat, and we end up with some complex endocrine issues. But there is always help :) Take care and good luck x

Kitten-whiskers profile image
Kitten-whiskers in reply tojennygrigg

Thank you Jenny, I will bare that all in mind and will certainly let you know how I get on : >

Best wishes

Debs

Cariad-y-Mor profile image
Cariad-y-Mor in reply tojennygrigg

Thank you for your reply Jenny. I don't really know much about adrenals. I only joined this site a couple of months ago - and have very quickly found out there is alot I didn't know about being hypo / having Hashi. I only wish I had found the site sooner. I have been underactive for years and seemed to be fine on levothyroxine. I had a very stressful job but coped - no problem. Then I retired about 18 months ago......then went right down hill -FAST !!. No energy, no interest. Can no longer be bothered to put my make-up on so I continually look like fright night. !!!! . Have had alot of family stress that is beyond my control during the same time frame. As for sleep - I can very often get to sleep but then wake up at about one and a half hour intervals ! So I am hoping the sleep programme will help correct this. I do try and keep positive....think we all know that put a smile on your face and nobody knows you are feeling exhausted. ☺☺☺☺☺

jennygrigg profile image
jennygrigg in reply toCariad-y-Mor

It is good that you have found this site :) Another fabulous site for info on adrenals is rt3-adrenals.org. Have a read and you may find another piece to your puzzle towards the health you deserve. :) As you know poor sleep is a hypo symptom but can also be adrenals, and their problems go hand in hand. From what I know regular waking is a result of low cortisol (unhappy adrenals) which allows blood glucose levels to drop too low through the night so our sleep is disturbed. Feeling low and a lack of interest is your thyroid so it maybe that you have been ok on levo but since retirement the stresses have meant your adrenals can't cope and your levo/t4 is not converting properly to the t3 you need. Instead it goes to reverse t3 which blocks receptor cells and you end up feeling more and more hypo no matter how much t4 you take. The rt3 site explains it all really well. Good luck with it all and take care :)

shaws profile image
shawsAdministrator

Kitten-whiskers, I'm sorry you are having a bad time at present.

I was fortunate and had no menopausal problems but did have severe joint/muscle pain when on levothyroxine and didn't improve until some T3 was added.

I think, for pain in particular, you have to look at your thyroid hormone replacement. You may not be on sufficient for you - or the doctor not increasing due to your blood test results. You may need to try/add another but I know it can be a trial/error situation and our head spins trying to fathom out what doctors appear not understand and when we expect them to solve our health issues.

As regards your "lorry load of high quality vitamins" - we can at times take too much or too many. We assume we are deficient but may not be.

I realise that sometimes when not improving we think "why bother taking anything at all" but our bodies cannot function without sufficient thyroid hormones.

I myself did the round of the all the variations of hormones before settling on what I take at present. One size doesn't fit all.

I can sympathise with you when we've done the rounds of tablets and don't seem to be any further forward and back to square one.

I hope you will feel a bit better now that you have posted as it does help get things off your chest.

Regards.

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Morning Shaws,

Thank you for your reply. I can not tolerate thyroid medication to well, so I am undermedicated - and that is a big enough problem in itself, without everything else.

I think I am taking too many vitamins - i will cut back

Best wishes

Debs

shaws profile image
shawsAdministrator in reply toKitten-whiskers

I know what you mean by not tolerating meds. Would the GP allow you to trial on a 'named-patient' basis a hypoallergenic replacement, i.e Nature-throid or WPure?

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Hello Shaws, I have purchased Wpure myself along with nutri thyroid and they are worse for me than the synthetic ones

shaws profile image
shawsAdministrator in reply toKitten-whiskers

I would have reported your reaction to RLC labs who manufacture it and let them know how you reacted. It's bad enough feeling so unwell and then purchasing your own, being hopeful that they will work best for you and you actually feel worse.

rlclabs.com/

Have you not found one replacement that will make you feel better yet? I couldn't take nutri thyroid with any other thyroid hormones. I felt worse. Of course, any supplements should be taken four hours apart from thyroid hormones and you have to take tablets with one glass of water on an empty stomach but I'm sure you will know this. :)

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Hello Shaws,

Thank you for the link, I didn't report it because I put it down to 'just being me' as I have reacted to all thyroid meds.

The best one by far is the liquid T4 but I can only have a tiny dose once a week - so it's not great and back in January I had a dodgy batch which lasted two months, I haven't really picked up much from that, I did report that to the yellow card but like with everything it seems, nothing ever comes from it.

Best wishes

Debs

shaws profile image
shawsAdministrator in reply toKitten-whiskers

I wonder if you have an defective gene which means you are unable to convert T4 to T3. You may already be aware o fit but just in case:

thyroiduk.org.uk/tuk/testin...

Kitten-whiskers profile image
Kitten-whiskers in reply toshaws

Thank you Shaws - most appreciated.

I don't know how I would have got through all these miserable years with you and all these other lovely people

lucylocks profile image
lucylocks in reply toKitten-whiskers

Hi Kitten-whiskers,

Sorry I do not have any advice for you but thought I would reply after reading how you felt worse on WP Thyroid (Wpure)

I have been taking it for five months now and I have been full of aches and pains ever since, particularly my back and shoulder, I never actually had them when on levo.

Every time I increase my dose I feel O.K. for a few days then feel worse again so have to reduce. It has taken me five months to work up to 2 grains but now reduce to 1 1/2 grains because my body felt on fire and I experience a severe pricking itching feeling.

I am now considering going back to levo. but do not know how to do the transition.

Hope you find something to help you soon.

Kitten-whiskers profile image
Kitten-whiskers in reply tolucylocks

Hello Luckylocks,

My goodness that sounds dreadful, I only took it three days (I think) and never no more, my head was spinning, dizzyness, feeling sick, increase in muscle pain and that pricking sensation.

I have changed from differen't medications lots of time - and I follow the Dr Peatfield way, which is to stop the medication you are taking and let that clear out of the system, then slowly introduce the new medication, slowly and closely monitor your symptoms. I now take Liquid Levo and that's the one I am going to stick with, not going to put my self through keep changing when none of them suite me at all.

I hope you feel better soon

Best wishes

Debs x

lucylocks profile image
lucylocks in reply toKitten-whiskers

Hi Debs,

I was thinking of going back to levo. or possibly T3 only but the change over is putting me off.

When I changed over to WP Thyroid, I was taking 100mcg. levo. which had been reduce two months previously by my G.P. from 125 mcg. I was actually O.K. on 125 mcg. it was when she reduced I decided to try NDT.

I stopped levo. one day and started with 1/4 grain WP the next day, gradually increasing but having to decrease several times.

How long did you leave when stopping one med. before starting liquid levo. and did you start on a low dose and work up again.

Kitten-whiskers profile image
Kitten-whiskers in reply tolucylocks

Hello Lucylocks,

You changed over very quickly, I never done it like that but of course the alternative of going without Thyroid medication for approx 9 days is no fun either.

Did you feel well on 125mcg of Thyroid? feeling ok, isn't quite the same thing. If your doctor cut down your supply, you could always order a little to top it up, it's not expensive, not like the NDT.

It depended how long I was on the medication as to how long i stopped it for before taking the new one. It's hard to be sure but I kept notes so I could look back over the changes - that seemed to work well.

I followed the instructions of the Endro with the liquid T4 and nearly ended up in hospital - so my reply would be build up slowly, just like you did when you were first prescribed thyroxine and go from there, listening to your body a long the way

Best wishes

Debs

lucylocks profile image
lucylocks in reply toKitten-whiskers

I felt O.K. not brilliant on 125mcg. levo. there was room for improvement, maybe I needed an increase or maybe I should have tried to add some T3.

When I was taking 100mcg. levo. I did the Genova 24 hour urine test which showed I was in fact converting the T4 in levo. into T3 but I was just not getting enough of it. In hindsight I should have done what you suggested and bought extra levo. to try

shaws profile image
shawsAdministrator in reply tolucylocks

I think you should report your effects to the manufacturer.

lucylocks profile image
lucylocks in reply toshaws

Hi shaws was this meant for me ?

shaws profile image
shawsAdministrator in reply tolucylocks

Yes, I don't know how it dropped down so far, I suppose because it was in the same thread. :)

lucylocks profile image
lucylocks in reply toshaws

Thank you shaws,

Do you mean I should report the aches and pains or do you mean report the body on fire feeling and pricking ?

The latter only came on when I increased to 2 grains and went when I reduce.

shaws profile image
shawsAdministrator in reply tolucylocks

If you reduced and they disappeared you were on a little too much it would seem. Our body has a good way of letting us know what it prefers :)

Heloise profile image
Heloise

Hi Kitten, have you ever tried hydrocortisone? I know you had trouble taking thyroid hormones so I wonder if that is the reason why.

Kitten-whiskers profile image
Kitten-whiskers in reply toHeloise

Hello Heloise,

Yes I have used HC but had too many problems with it, so having a high intake of buffered vitamin C to sort of compensate

Justiina profile image
Justiina

I had flare up too, last week, after consuming too much dairy and I had awful muscle pain. Very tender and sore knots barely able to walk. I fix it by massaging the knots with a tennis ball, use pain killer creme and hot/cold shock therapy. Takes two to three days and the pain is almost gone.

My worst knots are on just above the knee , hips, under shoulder blades and few cm under armpit so upper ribs. Fixing those knots releases other muscles too.

Is there anything you could do to release the pain on your own?

Kitten-whiskers profile image
Kitten-whiskers in reply toJustiina

Morning Justiina,

that is an excellent Idea - using a tennis ball, you must be rather brave as that sounds really painful, do you have fibromyalgia too?

I am going to give the tennis ball idea a whirl though, anything to get rid of those awful knots.

I do use a pain relief gel but you can't really put it everywhere so I also do yoga and yogalaties - but not as often as i need to

Hope you are feeling better? you sound very poorly to

Best wishes

Debs

Justiina profile image
Justiina in reply toKitten-whiskers

Not sure if I have fibro, tho I do not believe in fibromyalgia lol but I have enough trigger points that some could diagnose it. I just dont talk about it to doctors as over here in finland they still seem to think it is mental illness, sigh.

Yeah it hurts to massage those tender knots but it also helps. If I am pressing those knots on my hips I can feel it all the way down to my knee. I do some yoga too, but aggressive massaging, hot/cold and pain killer creme seems to be the only thing working for me so that it is then. Also magnesium oil works too as you can spray and rub it straight onto the sore muscle.

Kitten-whiskers profile image
Kitten-whiskers in reply toJustiina

Thank you Justiina,

I will give it a whirl. Magensium Oil never worked for me, sadly or bathing in Epson salts.

Doctors don't understand our conditions at all, it seems, that's why we get pushed to one side and told to live with it :<

Best wishes

Debs x

Justiina profile image
Justiina in reply toKitten-whiskers

Unfortunately. They should experience it first to understand. I bet that would make them see its not about imagining things and none of them would dare to treat patients feeling this ill.

Kitten-whiskers profile image
Kitten-whiskers in reply toJustiina

Hello Justina, I think they no more than they are letting on. To proud to admit they don't know and don't really care about trying. Just tell you 'your in range and get you out the door' - it's disgraceful really

Magic777 profile image
Magic777 in reply toJustiina

I have used a tennis ball and i have a foam roller whicj is for post exercise stretching thst hurts but gets better pain is so terrible i sleep as i take melatonin but if you have low stomach acid nothing seems to work as your not absorbi g no vits did tillni took it nor sleep meds

Kitten-whiskers profile image
Kitten-whiskers in reply toMagic777

Hello Magic,

That's a very good point about the low stomach acid, I do have 6 betaine tablets a day, so hopefully that makes a difference, maybe I need to increase it.

Thank you : >

444-4711 profile image
444-4711

Hi Sorry for butting in but have you tried Promensil Double strength it works for a lot of us going through the Menopause .

Kitten-whiskers profile image
Kitten-whiskers in reply to444-4711

Good morning 444 4711,

to be honest I haven't heard of Promensil but I will look that up, thank you very much. I have ordered some natural progestrone cream but that won't be hear for a while

Best wishes

Debs x

farie02 profile image
farie02

hi..dont give up..ive been in a state much the same for 2 years coming 3 an im stil fightin.. have come across a few people who take no thyroid meds after total surgery an ask myself if its really the meds keepin us unwell an been told we need to take them..im yet to feel myself again an i will cos im not given up...u to can do it ive been below the bottom of bottom but have learnin to let go...an it helps so dig deep an keep living xx we will al be well soon

Kitten-whiskers profile image
Kitten-whiskers in reply tofarie02

Morning Farie02,

I really appreciate you replying to me, your clearly suffering too.

I quite agree, Thyroid medication isn't the answer for a lot of us, causing more issues than it's fixing, trying to mask the problem.

I can not tolerate Thyroid medication (of any sort) so have to look at the root causes, I have changed a lot of things but feel so fed up that I feel so bad - I guess the early menopause has caused more problems that I realised. Dr Peatfied said that in the first instance low thyroid effects the hormones but once they are effected then they start effecting the Thyroid - so looks like a double dose of misery

Take care, hope you start feeling better soon x

Katepots profile image
Katepots

:( yes it's shit! I really sympathise as going through a bad bit myself with change of meds.

Re menopause though, I'm having an early on too. Symptoms were awful but I've managed to get rid of them through diet.

No caffeine. Nothing spicy. No chocolate. No alcohol (this is hard so I have limited it) at the same time I went gluton and pretty much dairy free and menopause symptoms have gone.

Also look up sage in a pure form online, this works really well for hot flushes if you're still struggling.

Hope you feel better soon.

What thyroid meds are you on?

Kitten-whiskers profile image
Kitten-whiskers in reply toKatepots

Morning Katepots,

Thank you for your reply.

That's very interesting that diet has helped - my diet is Gluten free and almost vegan, finding it hard to give up my cups of tea but down to two a day : >. I have never drunk Alcohol so I am glad of that.

I will get some Sage, Hot Flushes are quite bad now - thank you very much.

I take Liquid T4 but only a small amount once a week, If I have anymore I get a flare up, sohave to find other ways.

Best wishes

Debs x

Kitten-whiskers profile image
Kitten-whiskers

Morning Annonymous21,

A youngster - thank you : >, i wish I felt it.

I do take amino acids, have used magnesium spray, B12, CO Q10, I do try to do yogalaties once a week, use Aromatherapy oils and occasionally book a massage but with the fibromyalgia the massage can be very painful.

I haven't tried hydrotherapy, swimming or water aerobics but I am happy to try these things to get some relief - thank you x

janeb15 profile image
janeb15

Hello, I understand your desperation entirely. 3 years ago my daughter was in a very similar situation. After searching for 20 years and having seen countless specialists and so-called experts including thyroid doctors her health was still declining, ever more rapidly. Her last thyroid doctor had her on a cocktail of numerous vitamins/minerals, thyroid replacement and several different adrenal medications. She was NOT getting better - quite the opposite in fact. Then a doctor in the USA was recommended to us and he checked her for numerous things unconnected with endocrine problems. He discovered that her methylation was extremely poor and her nagalase levels indicated that she was EXTREMELY ill. He found that she had complex chronic illnesses that were causing her endocrine disruption. These included mycotoxin illness, HHV6 virus, Lyme Disease and candida. Over a period of 10 years NONE of the thyroid specialists she saw (or anyone else) had tested her for any of these infections, but they continued to take our money and lead us to believe they had the answers for her. They did not!! I am glad to say that her long road to recovery is progressing well thanks to her current USA doctor and the difference in her health and well-being is remarkable. The pain she was experiencing is gradually dissipating and her periods of activity and energy are increasing weekly. Don't EVER give up. We wondered if we would ever find a solution for my daughter and we have. PM me if you need more details and links. Jane x x

Magic777 profile image
Magic777 in reply tojaneb15

Just so glad you found someone i know that most of us have very complex issues on just one thing its a terrible life well its so appali g ive spent 9 mths in bed myself with cfs and had more and more tablets and nothing teally worked i hope that yourvgirl grows more well every second of each day she will be so proud of you to have such a very brave and determined mum 💖

janeb15 profile image
janeb15 in reply toMagic777

Thank you for your kind words. She was originally diagnosed with cfs in the UK, but we're past that now thanks to her amazing life-saving doctor. Jane x x

Magic777 profile image
Magic777

The magnesium spray has helped me and ive just realised that im taking iodiral and felt good when i 1st took it now im feeli g terrible worze than ever the b vits esp b12 my diet is strict too i wish you all the best and a big hug 💕paleo did help alot for me im sure you need more oils if you can have you tried betsin hcl for stomach acid increase ive found it really made my digestion better but go low and slow its very hard to feel well with all this and no the pain meds are crap .i had terrible pain with the fibro its come back lavendar oil can help and lemon balm smelling them if you cant put them on massage too if you can do some

Kitten-whiskers profile image
Kitten-whiskers in reply toMagic777

Thank you Magic, it seems impossible to get well, doesn't it

Take Care

Debs x

Magic777 profile image
Magic777

Good luck👍

JanW profile image
JanW

Hi sorry to hear if all your problems, have you tried Voltarole gel for aching muscles and joints it really is very good.

Kitten-whiskers profile image
Kitten-whiskers in reply toJanW

Hello Jan,

I haven't but I will give it a try, anything to ease this awful pain

Best wishes

Debs

Kitten-whiskers profile image
Kitten-whiskers

Good Luck Annonymous, take care x

Sonya73 profile image
Sonya73

All I can say is keep going. Don't curl up in a ball, talk to someone and don't stop! I had a horrible week last week. Agitated, depressed, horrendous. The doctor says that it's not the carbimazol but just me. Wasn't like this before my hyperthyroidism though. Now I cry at the ads on TV, get upset, angry and frustrated. I understand but I also know, it'll all work out. Standing by you and hoping you find the answers...

Kitten-whiskers profile image
Kitten-whiskers in reply toSonya73

Thank you Sonya, I admire your optimism, that is very impressive, you sound in a bad way too. I hope you find answers, I get some hyper symptoms and they are dreadful and frightening, I can only imagine how bad it must be to be hyperthyroid. You are coping so well.

Best wishes

Debs x

Corny67 profile image
Corny67

So sorry your feeling so miserable with it all. I started the menapause age 29 and I'm now 49 so I understand completely what it does to you. I felt so much better for six years on hrt but then they took it off me because of the risks and I was back to square one. I don't think any natural remedies make any difference, at least it didn't with me. I have fans in every room and go in. It's literally the only way I can survive the sweats. I would advise a good one for your bedroom as you can escape it during sleep. Ring Drs every day see if you can get a cancellation. I'm hope you get some help. Big hugs x

Kitten-whiskers profile image
Kitten-whiskers in reply toCorny67

Oh corny, that's terrible, 6 years on and your still suffering.

I have a fan on the top have of my body and a heater on my legs because they are always ice cold, no matter how hot the top halve gets - crazy I know but the electric company love it.

I did order some natural progesterone cream, in the hope that helps, I am very reluctant to have HRT, didn't your doctor offer you an alternative? surely they have something to replace it with, don't they.

Sadly the doctor is on hols, so I just have to wait (nothing new there)

Love Debs x

Corny67 profile image
Corny67 in reply toKitten-whiskers

No sadly that was my choice patches or tablets. They explained the risks but I was prepared to take them just to feel like a human again. I still sweat like crazy but just been diagnosed with graves so I'm feeling hopeful that it might eventually stop. I was told 10 years ago I had fibro but now they are telling me that graves causes joint pain and a lot of the fibro symptoms too. I'm just looking forward to a day of normality and to hug someone without wanting to cry with the pain. I'm hoping your having one of those wonderful days I've heard so much about X X

Kitten-whiskers profile image
Kitten-whiskers in reply toCorny67

Oh dear Conrny67, that is terrible. I was reading the other day that if early menopause is caused by the thyroid, then HRT or Natural Progestione cream just won't work - maybe that is the case for you, no doubt it will be for me as well.

Lots of things can feel like Fibro but there are things that can be done, my fibro used to be unbareable, I could barely move - I purchased a book by Leon Chaitow (I think he is wonderful, he has been the only person to help with my horrendous case of candida) this book is just about Fibro, one thing that helped a great deal was giving up potato's - they are part of the knightshade family and can cause inflammation. I do have flare ups that make it worse, but like every area of me health it is work in progess.

Doctors will diagnose without any firm evidence, because I had terrible stomach trouble (for many many years) the doctor said I probably had Crohns diease, said there was no treatment and that was that, I found out it was low stomach acid and leaky gut and now things are alot better.

They like to label us with things that have no cure, so we don't keep going up to the surgery looking for answers.

I send bigs hugs and really hope you get well

Best wishes

Debs x

Karolly profile image
Karolly

Hi There kitten-whiskers,

I totally sympathise with you Iam struggling with sleep it just doesn't come, I'm going through the Menopause and I can't loose weight. I am constantly Hungary but don't want to eat. It's awful.

Please speak to your GP and us on the his website. I felt so alone until I joined this website. Have you tried a nice relaxation CD that you like to listen too? I really hope you start to feel better soon.

I'm looking to get a dog in the hope that the dog will help like a Therapy dog. I no its not for everyone but I just thought I would share that with you,and everyone

Karolly 🙋🏻😊🐶🐾

Kitten-whiskers profile image
Kitten-whiskers in reply toKarolly

Hello Karolly,

I think thats lovely idea, getting a dog. My beautiful cat went to heaven in October and that was awful for me, she was so lovely, I would curl up with her, have her purring in my ear or rubbing up at me - we were very close and when she went I did feel quite lonely, no furry friend, who was always pleased to see me.

I do have relaxation CD's and those Binural CDs, have you tried them, sometimes they help a bit.

I always used to be constantly hungry - I believe that to be more an Adrenal symptom

Best wishes

Debs

kayw profile image
kayw

Dear Kitten whiskers, I read your post and rushed to see if you had posted this morning, I was so worried about you. I know you have a lot of physical issues going on, one of which would be enough to cope with, never mind all together. I have recently been diagnosed with underactive thyroid, and have had some good advice and support for HU. I have had awful mental health problems, not related to physical health issues, and recognise what you wrote in the wee hours as a place I have been, and understand that black place you are in. Please get some help, ring your GP or your local health authority, and ask for the phone number for the emergency mental health team. Call them, they can help. I know that thyroid issues can cause stress and depression, but that doesn't mean they don't need addressing as problems themselves. It doesn't have to be medication, there are lots of talking therapies, but please contact someone.

Take care Kitten whiskers, sending you positive thoughts

Kitten-whiskers profile image
Kitten-whiskers

Hello Kayw,

That is really very sweet of you, thank you. I have contacted doctors before and they really aren't interested - everything is labelled as thyroid issues so take more levo and get out of the office, so to speak.

I

t's true I do feel a bit depressed but who wouldn't be, in pain all the time, have lots of other symptoms going on and now my health is becoming really effected by this under treatment of my thyroid and things have been getting unbareable.

It is a black place for me and I am really trying to be more positive but until the pain subsides a bit, its going to be very difficult. My life is whizzing past and all these years of misery and suffering could have been me achieving my goals or helping others.

I feel useless and worthless I guess, but of course your right I need to focus more on the positives, maybe then things will improve.

I hope you are feeling better x

Take care

Debs

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