Insight Appreciated: Hi Hidden & all... - Thyroid UK

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Insight Appreciated

Kitti1 profile image
Kitti1
โ€ข52 Replies

Hi Hidden & all knowledgeable brainy people of this forum. SeasideSusie UrsaP Kitten1978 humanbean diogenes

Rapunzel greygoose Hidden

I've had a lot of problems over the years, not just hypo. And wondered if they were connected. Its a bit of a long one so hope your sitting comfortably ๐Ÿ˜€

I was diagnosed hypo at 18 ( now 48 ), but i am sure I was poorly with it long long before. Certainly through secondary school. During my teens I really struggled with my weight, hardly eating for years. Had bad light sensitivity. Brain fog, that at the time I just thought I was thick n slow. Poor at sport especially when it included coordination. Always cold, depressed but didn't know what depression was then.

Before diagnosis, by which time I was very very I'll. I'd had 2 possibly 3 periods, when I was 16 & 17. Running up to & after nothing till I was 19/20. I finally became vaguely regular at 21. By which I mean every 5-8 weeks and they lasted 4-10 hours. Very very light always. I guess I was still struggling with depression through this period but never treated.

When I was 23 & a student, I became pregnant ( not planned ) At about 9/10 weeks I had a miscarriage. I wasn't upset, but this is where my problems really began. I had 2 years of crippling post natal depression. Didn't know it at the time. After a year or so feeling very bad, I took a massive overdose & in a coma for 3 days. A few weeks later I had full nervous breakdown and was sectioned. I was on a mental health ward for about 5 months and during it had 14 treatments of ECT.

Got back on my feet n life carried on. But with definitely increased PMS. Appauling mood swings with great downward spiralling depessions. At 27 I became pregnant again ( never had a problem conceiving ). I was too scared to go through with the pregnancy & had a termination. The same happened again. 2 years of crippling life & mind destroying depression. This time I ended up in full time therapy, Monday to Friday 9-5. It didn't work. Also saw a supposed specialist in female hormones who said I was fine. I knew I wasn't fine

Again in between suffering life limiting PMS which at times made me pretty mental. At 30 same again, pregnant, too scared to go through with it, termination & 2 years severe post natal. By this point it was a case of I've got to have a hysterectomy for my own sanity. I DESPERATELY wanted children. But not only felt I couldnt do full term to myself but also to a baby. And what the hell would happen after ? ?

So hysterectomy I pushed for and finally got at 33.

I did feel a lot better after. But guess I've always been under medicated / low on t3 till recently starting my journey into thyroid education and self medicating.

The question is - is it all linked ? Is my hypo in my childhood / teens linked to what I went through.

Sorry it was so long & thanks for reading.

Its a big thing for me to open up about this sorry

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greygoose profile image
greygoose

Well, my unprofessional opinion is, yes, it is all linked. And, I went through much the same thing - not as severe as you were, but I think I've been hypo since I was about eight. I've had weight gain and bouts of depression since then. Three pregnancies - but I did go through with them - how, I don't know because them make me so ill - and severe post natal depression after the first. And, treated like an attention-seeker, because the doctor had never heard of post natal depression!

And, I've known other people that have been sectioned, and had ECT, when all they needed was a decent dose of thyroid hormone.

Doctors are so very ignorant about thyroid, and about hormones in general. And, one gets the impression, they would rather die than diagnose hypo. I had to wait until I was 55 for my diagnosis. I don't know what more I can say, except, now that you are more aware, good luck for the future. x

Kitti1 profile image
Kitti1 in reply to greygoose

Thank you greygoose . Your thoughts & experience mean a lot. That's one of the reasons I copied you in - your wealth of experience. That and I remember reading you suspected you were hypo as a child / adolescent. I feel for you going through bad post natal, it can be so horrible, but glad you've got your children. That was one of my big concerns - what if hurt my baby ?

greygoose profile image
greygoose in reply to Kitti1

I don't remember having any desire to hurt anyone, not even myself. But it was very hard having to look after him, when I felt so bad myself. I just wanted to crawl into a hole and never come out. But, the worst thing was, nobody seemed to understand - or even care. The attitude was just 'oh, get over yourself!' But, that's a typical attitude when you're hypo - no-one ever understands.

Kitti1 profile image
Kitti1 in reply to greygoose

I know what you mean. This is why it is such a big thing for me to talk about. That I've felt the medical profession has always condemned me as having bad mental health. But to realise it was possibly a physically routed problem makes me feel so much better. Just as the discovery that when I've been told for years that my depression fatigue and weight problems come from my mind was wrong, makes me feel better.

I've spent my whole adult life feeling I was thick because of bad brain fog. Feeling I was a weak person because I couldn't pull myself out of depression. Taking caffeine tablets day in day out to be able to go to work due to fatigue and believing it was all in my mind, my weak mental health.

To know it may all along have been my body helps. If that makes sense ๐Ÿ˜ข

greygoose profile image
greygoose in reply to Kitti1

Yes, I understand perfectly. I often wonder what my life would have been like if doctors had been capable of doing their job.

Kitti1 profile image
Kitti1 in reply to greygoose

Totally ! I feel I've been robbed of mine. That's why I get so fired up about trying to change things. But then have days of what's the point nobody listens because that's what we are use to.

When I was diagnosed I'd just got a place at Brighton poly ( uni's didn't do art courses back in those days ! ) studying graphic design & illustration. Renowned as the best course of its type outside London. 1250 applicants for 62 places n I got in. But guess what I was too ill to cope. Spent my life in crappy poorly paid jobs ever since.

Kitti1 profile image
Kitti1 in reply to Kitti1

At least your in beautiful sunny France now ๐Ÿ‘. We lived in Poitou Charente for 2 & 1/2 years but it didn't work out

greygoose profile image
greygoose in reply to Kitti1

No, I'm in the Oise. It's about as sunny as Clapham. And, it's anything but beautiful, I'm afraid. France is like any other country, there are beautiful bits and there are sh***y bits. I'm in the latter.

The worst thing about my life was my lack of self-esteem (although anyone that knew me superficially, would have said that was rubbish, but you learn to cover up) but it led me to marrying a psychopath - so that really was a waste of a life!

Kitti1 profile image
Kitti1 in reply to greygoose

OMG our lives sound like train tracks, so parallel. I've got a real bully I can't get rid of. I left him under the domestic abuse team last year. Spent 5 months in a safe house but he destroyed me so much I had no choice but go back to him. I ended up with no where else to turn. No family left, he drove away my best friend and lost me two jobs.

Yep still trying to find the elusive self esteem

Even beautiful bits of France can turn out pretty shitty - expensive, lonely, empty. I'll look up Oise

I do hope the psychopath didn't hurt you too much

greygoose profile image
greygoose in reply to Kitti1

Physically, no. Mentally, quite a bit. I've been unable to form another relationship since then. I don't trust anybody.

in reply to greygoose

Hugs x

marigold22 profile image
marigold22 in reply to greygoose

I married a psychopath too :-(

Kitti1 profile image
Kitti1 in reply to marigold22

OMG is this a thyroid thing ? Hope you've got rid of yours now

marigold22 profile image
marigold22 in reply to Kitti1

Yes I have, but he left with big debts

marigold22 profile image
marigold22 in reply to marigold22

Sorry - typo - he left me with big debts

Kitti1 profile image
Kitti1 in reply to marigold22

Rotter ๐Ÿ˜  Mines pretty hopeless with money too. Hope your getting sorted now

marigold22 profile image
marigold22 in reply to Kitti1

Perhaps we should start a commune for hypo's !

Kitti1 profile image
Kitti1 in reply to marigold22

Sounds like a plan ๐Ÿ‘

greygoose profile image
greygoose in reply to marigold22

I'm sorry to hear that. It's hard. xxx

UrsaP profile image
UrsaP in reply to Kitti1

Kitti1 This is exactly what is happening to my son now too - he has already missed out on scholarships and now is having to defer his uni course - so frustrating, as it does not need to be like that.

UrsaP profile image
UrsaP in reply to greygoose

Kitti1 A very sad story. You have been through hell! NO one should have to endure all that. You sound like a very strong person, and to be able to share all this is very courageous of you.

And I agree with grey goose that (again my unprofessional opinion) there has to be a link with hormone imbalances.

I suspect I have had some issues since birth - at about 3 days old - turned blue - Apparently it was a bit of a joke that Mam would forget about me as a baby because I was so quiet and asleep all the time - wouldn't wake for a feed even.

Had loads of problems with TOTM - would conk out regularly, or just go so weak people thought I'd conked out.

I lost weight carrying my first son - much to GP's amazement - but at that time was still undiagnosed.

Was diagnosed sometime after.

Piled weight on carrying second son. Not aware of having anything like PND, just tired and wiped out.

I hope, Kitti that you find the right balance of mediation for you, it is possible and it does make a difference - keep fighting for it.

And greygoose the tragedy is that the outdated attitude prevails!! I wonder if in another 30 years will it still be so? Or will it be the next big scandal - teh next big medical failing!

I'm hoping so, that if we all push together we can make this T3 situation the catalyst to publicise the crap thyroid treatment and the injustice of poor treatment that is leaving so many people so ill for most of their lives.

Kitti1 profile image
Kitti1 in reply to UrsaP

Thank you UrsaP your fab. I so hope your son can get sorted soon so he's not missing out on shaping his future to best of his true abilities. It must be heart breaking for you as I'm sure your going through it too as you do when your a parent.

Yep definitely got to get myself properly medicated soon so I'm fit for this fight ๐Ÿ‘ Things have to change. We can't let another generation go through this.

UrsaP profile image
UrsaP in reply to Kitti1

Kitti1 Here here...that's the spirit...just wish I knew what to do! But think the main thing at this stage it to keep the topic in the limelight...publicity, education, pressure. We need to find a way of showing just how many people are being unjustly and adversely affected, by this condition, and by this inadequate understanding and treatment of all things thyroid.

We have to be like dogs with a bone!! (or in my little minx's case - a piece of paper/a pencil anything will do...anything she shouldn't have...)

greygoose profile image
greygoose in reply to UrsaP

Sorry? What out-dated attitude are we talking aobut? lol Not knowing about post-natal depression? It was nearly 50 years ago that my first son was born, 1968. And it was known about because not long after, someone who'd been through it herself, wrote a play about it, that caused a big stir. Can't remember her name, off hand, but she was quite well-known in the 60's. It was just that my GP had never heard of it - or maybe he was just showing off to his student - look, this is the way you handle these neurotic women patients! Don't take any nonsense from them! I hate doctors with students!

UrsaP profile image
UrsaP in reply to greygoose

Hi greygoose I meant the attitude to thyroids and the lack of wanting to understand it and it's connections to all these other problems - even thought they do know that these hormones affect (nearly?) everything in the body. The attitude of sticking heads in sand and refusing to believe that thyroid issues might be having an affect....

Dismissing symptoms as anything but thyroid related...that attitude.

They were never going to admit PND might be caused or worsened by Thyroid disfunction.

greygoose profile image
greygoose in reply to UrsaP

Maybe, but I was a long, long way off diagnosis when I had my first. I was 23, and got diagnosed when I was 55. So, there was no way of making a connection, anyway. I didn't even know what a thyroid was.

The thing was, I'd just had a baby, and I couldn't stop crying, I knew something was wrong, but the GP treated me as if I was an attention seeker, prescribed valium and told me to get on with it - I should think myself lucky to have a beautiful baby and a good husband! Although he'd never met either, and couldn't remember who I was when I first walked in! His attitude to me was was totally unfeeling and cruel, and he shouldn't have treated any of his patients like that, let alone a vulnerable new mother. That's all. :)

UrsaP profile image
UrsaP in reply to greygoose

Too true, sadly greygoose - That usual chauvinistic attitude too.

It is just so sad to hear what so many people have had to put up with. And worse knowing that nothing is really changing for the better, things seem to be getting worse - how can that be in this day and age, where things are so much more 'open'?? No wonder so many of us do get 'depression' shoved down our necks - yep - Gp's many are make us depressed by treating us so badly!

I hope life is better for you these days.

greygoose profile image
greygoose in reply to UrsaP

Yes, thank you, it is much, much better : three grown-up children, five grandchildren and my own home. And my dog! lol

There are people that have had it a lot worse than I. But that doesn't stop me hoping that karma caught up with these people, in the end.

UrsaP profile image
UrsaP in reply to greygoose

greygoose I'm a great believer in karma these days! Let's hope so... Glad to hear you are in a better place now.

Kitti1 profile image
Kitti1 in reply to UrsaP

UrsaP saw this earlier and thought of you. Now I think ive got the figures right. But I am a bit dense ! Basically it seems to be saying that obesity saves the government 2.47 billion at 2016 prices. What were you saying about population control lol !

iea.org.uk/wp-content/uploa...

Kitti1 profile image
Kitti1 in reply to greygoose

My 3 dogs are my babies ๐Ÿ’• oh and my 7 cats ๐Ÿ˜ฎ Don't ask it just seemed to happen !

Kitti1 profile image
Kitti1 in reply to greygoose

Unfortunately greygoose its not just ignorant male doctors we are up against. After 3rd pregnancy I had a women therapist come to the house. She told me I couldn't have post natal depression because I hadn't gone full term. And she would know as she use to work with women with real PND. She also told me I had no reason to be depressed, but she did. Her husband had dropped dead in front of her a year earlier aged just 50. This was just 16 years ago !

I asked her to stop coming after a few weeks, but didn't have it in me at the time to complain about her

greygoose profile image
greygoose in reply to Kitti1

Yes, people still don't understand that you're not depressed because of something, you are just depressed. It has nothing to do with anything exterior, it comes from within. And there really ought to be another name for that feeling, and the feelings you would obviously get if your husband dropped dead, etc. They are not the same feelings. I'm glad you got rid of her. That was a shameful thing to say to anyone. Such ignorance.

Kitti1 profile image
Kitti1 in reply to greygoose

Its quite ironic that we are having this discussion this week with it being national mental health week. You would think with the amount of attention depression / mental health issues get, combined with obesity issues that are prominent in the media. Both of which are often caused by thyroid problems, more would be done to address the route cause the thyroid.

greygoose profile image
greygoose in reply to Kitti1

Because doctors are incapable of putting two and two together, and because they love blaming the patient for things like obesity - it has to be our fault! And because they get some sort of kickback for prescribing antidepressants, and because the aim of the game is not, and probably never has been, making patients well again. And all sorts of other things that are against their interests.

shaws profile image
shawsAdministrator

I'd say yes. They are interconnected. I shall give you a list of clinical symptoms. Plus another archived site and some topics may interest you. Some links within may not work in Dr Lowe as it is archived as he died due to an accident.

thyroiduk.org.uk/tuk/about_...

web.archive.org/web/2010103...

thyroid-info.com/articles/d...

Kitti1 profile image
Kitti1 in reply to shaws

Thank you shaws I will read with interest.

Just to say I don't like copying in admin because I don't want to demand your time. But very much appreciate your input ๐Ÿ‘

shaws profile image
shawsAdministrator in reply to Kitti1

We don't mind as sometimes we can miss posts etc. If we don't need to respond that's fine too.

silverfox7 profile image
silverfox7

Telling us your problems has been, I'm sure, a very big step to take so thank you for sharing. Have you any recent posts you can share with the ranges? I'm suspectiving they are low and that you may not have had T3 tested. The site recommends Blue Horizon and MediChecks for testing and I understand they have special offers on time to time, MediChecks are usually on a Thursday so keep an eye out for those. Lots of useful info on the Thyroid Uk site I'm sure you will find useful as well and there are also lots to help and support you.

Katepots profile image
Katepots

Hi,

That's a really sad story. So sorry. Very brave of you to share.

Can relate. I had horrendous anger, depression, panic attacks, agoraphobia in my late teens early twenties all definitely related to undiagnosed thyroid issues I'm sure. Had a miscarriage and a termination, but luckily I went on to have two children. Horrendous post natal depression with my second which I know know was thyroid related. so disgusting that we have to go through such horrendous times when properly diagnosed and medicated we would be well.

What are your levels of vitamins like? Now I've sorted thyroid meds and vitamins I'm sooo much better. Cortisol a big one too. I reckon our adrenals really cause anxiety, mood swings, anger and probably were the root of my illness In my twenties. I was just chucked on anti depressants for years ๐Ÿ˜ฉ Bad move, eventually I stopped them myself.

Years later I started to really try and understand my body and with lots of research discovered my hypo (had been hyper) and Hashimotos.

Haven't looked at your past posts but have you posted your bloods on here for people to comment?x

Kitti1 profile image
Kitti1 in reply to Katepots

Thank you silverfox7 & Katepots for your replies and kind words. So sorry to hear you went through similar depression and post natal depression Kate, but in ways its good to know its not just me.

Regards where I'm up to on my journey to health. After seeing the trust me I'm a doc program about t3, that started it all off. Bloods from last year - TSH 5.9 0.35-5.5 and t4 low in range. Doses, i was on 150mg for 25 years, in hindsight never felt well / fully medicated. A 'clever' doc reduced my dose 5 years ago ( don't know bloods ) to 125mg. I was going through a lot of stress then, I'd just lost my mum & dad ( after nursing them ) and not long before that my brother. So perhaps the stress affected the bloods ? Felt really quite under medicated since.

Ordered t3 first, felt I couldn't afford private bloods. But after a lot if reading on this wonderful forum realised I had to get my bloods done first. I've drone two failed finger prick tests, can't get enough blood out. So I'm getting a vacutainer sent and hopefully get that done Monday & results next week. I went for blue horizon plus 11.

To add to the 'mess' 2 months ago the chemist randomly changed me from actavis levo to teva. This ended up making me very poorly and stopped taking them after just over 3 weeks. After 10 days on teva I had my latest bloods with my gp. I think due to teva my TSH had plummeted to 0.4 I think ( t4 still low in range ) . So 'clever' gp reduced my dose to 100mg without consultation ! ! Fuming ! So desperate to get these bloods done so I can hopefully start medicating. I've just got my vitamin b12 1000mcg & D3 1000IU. But holding off till I get my results. I think I'm OK for iron and will address folate if needed also, but have been taking a good b complex with folic acid but the wrong b12.

Katepots profile image
Katepots

Great you are getting bloods done, we will be able to help lots then. Good test.

TSH should ideally be under 1 to feel well so the doc reducing your meds probably won't have helped. They are so stupid and uninformed grrrrr

I struggled with the fingerprick but for future info if you break open the prick thing you then can get hold of the lancet (keep sterile) and do several pricks which then works!

I'd ask the dr to test your adrenals, you've had so much grief and stress I can't imagine that they are not stressed. I've started taking Rhodiola and Siberian ginseng for mine and have started to feel a difference, less stressed and less OCD compulsions. Which is brilliant ๐Ÿ˜€

Kitti1 profile image
Kitti1 in reply to Katepots

I agree, the last 5 & 1/2 years have been very stressful, particularly the last year or so. I was definitely running on adrenaline all last year. Developing panic attacks bad anxiety and agoraphobia which I've never had before.

I'm in the process of changing docs so will try and get my new one to test adrenals. Glad your feeling better on those nutrients, I'll take a look at them thank you.

Re finger prick test. The second one I stabbed it 3 times in the same place and attacked it with a kitchen knife ๐Ÿ˜ฎ ! But it still dried up less than half the way up the capsule ๐Ÿ˜•

Katepots profile image
Katepots in reply to Kitti1

Haha good job you've ordered a vacutainer ๐Ÿ˜‚

I did a stress management course years ago which was really good for ways to deal with stress. Stopped me from being admitted into hospital at my darkest point.

Also tags with meditation is brilliant for destressing.

If you feel a panic attack coming on if you run for a couple of mins it uses up the adrenalin so you shouldn't then feel the affects or have a full blown attack.

Kitti1 profile image
Kitti1 in reply to Katepots

After doing the post last night I later went and lay in dark room with my favorite 7 chakras music. I'm not great at meditating but it does help me relax ๐Ÿ‘

Rapunzel profile image
Rapunzel

Darling how completely awful. I am a full on fruit loop and have been for a number of years.

I've just had another tussle with another f*cking woman in front of my garage ( I know, 1st world problem ) who parked on the white H bar in the road and left both her car doors open if you please to aid her just pre-teen daughter who had, 'a very bad nose bleed.' She, therefore, saw fit to block the road leaving me with nowhere to go. I was bliddy exhausted after a two-hour drive and a 90-minute meeting with a sweet old lady who spent all that time sobbing at me and I just wanted to get home. But I, apparently, am 'very rude' for telling her to please just go away as she tried to justify herself before she got back into her car. I can hear Elsa singing let it go and I'll calm down in a minute but for the love of God where do these rages come from? I managed to resist saying ' Do you want a matching nose bleed you freaking selfish mare?' as I heard her whiny assed moaning to her neighbour, who is parked in front of my husband's garage.

Oy vey. Hypoland eh ? Who'd visit voluntarily ? A little doze, I think, will sort me out. Hugs Kitti1 be kind to yourself xxx

Kitti1 profile image
Kitti1 in reply to Rapunzel

Darkened room, some nice 7 chakras and a very large glass of good wine ๐Ÿท Why isn't wine on prescription ? Free wine ๐Ÿ‘.

When you've come down from the ceiling, pop over to steviecat thread - doctors the world over ( can't do links on my cheap tablet ) we are having a 'slag off the French session' that you may, as a globe trotter, enjoy ๐Ÿ˜€๐Ÿ‘ xxx

Clutter profile image
Clutter in reply to Kitti1

Kitti1,

Can you imagine how medicinal and nasty NHS prescribed generic wine would taste? Bleugh!

Kitti1 profile image
Kitti1 in reply to Clutter

Oh nickers yeah good point Clutter Although there are days when as long its got an alcohol content I wouldn't care ! Me an alcohol problem ? I don't know what you mean ? The problem is when i run out lol ๐Ÿ˜‚

Rapunzel profile image
Rapunzel in reply to Clutter

Chรขteauneuf-du-Bleugh, surely Clutter ?:D

Rapunzel profile image
Rapunzel

๐Ÿท๐Ÿท ร  votre santรฉ Kitti

Kitti1 profile image
Kitti1 in reply to Rapunzel

I've mentioned wine now ๐Ÿ˜  I'm not supposed to have wine during the week ๐Ÿ˜ž. I succumb last night after having the waste of space other half at home all day, enough to drive anyone to drink !

Well it would be rude not to join you in a glass or two Rapunzel so I'll just blame you to make myself feel better ๐Ÿ˜‚

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