newbie facing many challenges

[TracyGWill]

Oh dear, hon, I really don't know what to say other than please don't give up! Your health issues are obviously making it harder for you to lose weight, so you really do need proper medical advice, which hopefully you'll get. The PCOS diet definitely sounds worth trying, but again it's not something I know anything about. But please keep coming on here and venting to us - even if we can't offer a solution, at least you can get things off your chest! xx

 

[caz78]

Caz, I'm really hoping the answer to this question is "yes", cos it would be quite shocking if it were a "no"...

...but have you ever been tested for hypothyroidism?? And more specifically, the autoimmune form of hypothyroidism, known as Hashimoto's?

I've just read what you added. That's concerning, it describes me to a T except for the decreased sweating and I have no lumps or bumps. I've had my thyroid checked many times and nothing has ever shown.

I've wondered for many years just what is wrong with me. I have never been well since my surgery as a child but they have never found anything physical apart from PCOS, asthma, a bit of dermatitis in recent years, arthritis and my skin condition.

M.E. was diagnosed but I seemed to partially bounce back as I grew up. It's still lurking there I think, but I manage.

They are concerned about the recurrent oral thrush but have put it down to 'one of those things' and stress. Truth is, they just don't know.

we have often joked that I need to go in for a full MOT cos something's going on. I think if it was anything serious they would have found it by now though, I hope so anyway!
Maybe that's what I need to do to get to the bottom of it. Let them see how often I am fighting infections and things.

They're obviously aware something's not right or they wouldn't have tested for HIV. I think money has a lot to do with it and I must say that despite some of the nightmare situations I've had I am very grateful to the NHS.

They are terrible sometimes though. I suffered 20 years with HS before they finally referred me to a dermatologist. GP's can be great but they can also be a barrier to the treatment you need sometimes. I now have a lot of scarring that could have been easily avoided.

Caz x

 

[caz78]

Thank you so much Tracy! I'm so glad you said that cos I was just thinking as I typed, hmmmm, this is a weight loss forum, they don't want to hear all this woe is me stuff.

Thanks for the support!

Caz x

 

[TracyGWill]

Thank you so much Tracy! I'm so glad you said that cos I was just thinking as I typed, hmmmm, this is a weight loss forum, they don't want to hear all this woe is me stuff.

Thanks for the support!

Caz x

You're very welcome, hon - I just wish I could offer more concrete advice, but yours obviously isn't a case of just giving the usual advice about calories etc., as it's complicated by the health issues. Interesting to see you mention ME - can't remember if I mentioned that I've had it for 25 years, which affects my ability to exercise, so it all has to be about diet for me. xx

 

[caz78]

I'm so so sorry to hear that Tracy, it's a flat out horrible illness. How do you manage? Are you badly affected? I hope you don't mind me asking but it varies so much doesn't it.

Mine was triggered by major surgery aged 9/10. I had my appendix out and developed severe complications resulting in bands forming around my intestines and effectively strangling them. I had a fair bit removed and they weren't sure if I would need a bag or not. Then I got a deep infection that took a year to heal. You don't just bounce back after something like that. I was in and out of intensive care for quite a while. I continued to see a paediatrician for many years. I was never really well again for many years.

At first it was post viral syndrome, then the name changed to chronic fatigue syndrome (do you remember the horrible term 'yuppie flu'? I detested the title!) and later M.E.

With me it's unclear with me how much is that and how much is bipolar as they are actually very similar for me.

I know for many sufferers though depression doesn't come into it at all though and it's entirely physical.

Bipolar 2 is mostly depression and occasionally hypomania = bouncing around trying to fit as much into each day as possible, high mood and being speeded up. For me ME was (is?) all the same symptoms as depression plus light sensitivity, feeling cold all the time and not being able to tolerate noise. Then on good days I would rush around trying to cram life in while it lasted. As you know , that's the worst thing you can do! After hypomania comes a crash of depression, just like with ME the physical and emotional crash that follows a good day when you have overdone it.

There are many similarities. Both are horrible.

Around age 14 I spent 6 months bedridden. They thought I had glandular fever or something, I was too weak to even get to the bathroom alone and struggled to sit up and feed myself some days. My arms felt like lead weights. But I was also extremely depressed so it's hard to tell, depression or ME? Then I was very up and down before a spell in hospital when I was 17 where they did all the tests to rule out anything else and decided it was definitely ME. Over the next few years I gradually improved until I got to the point where I was mostly well and could lead a normal life. I'm 36 now.

Even now though I sometimes get symptoms but it's not easy to tell if it's mental or physical with me now. The two have always overlapped for me.

It's different for everyone though isn't it. I'm lucky I had it young as I had a better change of recovery. I'm so sorry you have struggled with it so long.

Bloody hell though, yay you! Losing all that weight AND fighting ME - wow that takes some inner strength mrs!!

I take my hat of to you!

Caz x

 

[Winterjasmine]

Honestly, you've got all the precursors to autoimmune probs described right there in your history. Surgery, glandular fever, chronic fatigue... I'd be astonished if your thyroid function is ticketyboo (though very happy for you if it really is ). I suspect your levels might be in the ranges doctors laughingly describe as "normal", rather than optimal. A TSH of above 2.0 is not normal (but the usual range here in the UK describes anything up to 5.0 as normal). In the USA, anything above 3.0 is treated. The easy way to find out about Hashimoto's and whether it might be a possibility is to ask your doctor if your thyroid antibodies have ever been tested. If they're raised, that would be conclusively Hashimoto's and might even be contributing to your bipolar issues, as what happens with Hashimoto's is that sometimes your thyroid is over active and makes you a bit hyper, and then it swings back the other way and makes you feel knackered and depressed. Eventually, most people with Hashi's end up with underactive thyroids. For some reason, doctors are rather bad at spotting and treating thyroid problems - not just here in the UK, but all over the world, it seems.

I won't go on about it, because it sounds like you've got enough to worry about, lovely. But it might be worth querying the next time you have an appointment with your GP. As for the metformin, of course they should put you back on it. If you have insulin resistance then you're going to have a really tough time losing weight.

Props to you for coping with all this and still staying strong. I know you probably don't feel you are, but it shines through in everything you write. x

 

[TracyGWill]

I'm so so sorry to hear that Tracy, it's a flat out horrible illness. How do you manage? Are you badly affected? I hope you don't mind me asking but it varies so much doesn't it.

Mine was triggered by major surgery aged 9/10. I had my appendix out and developed severe complications resulting in bands forming around my intestines and effectively strangling them. I had a fair bit removed and they weren't sure if I would need a bag or not. Then I got a deep infection that took a year to heal. You don't just bounce back after something like that. I was in and out of intensive care for quite a while. I continued to see a paediatrician for many years. I was never really well again for many years.

At first it was post viral syndrome, then the name changed to chronic fatigue syndrome (do you remember the horrible term 'yuppie flu'? I detested the title!) and later M.E.

With me it's unclear with me how much is that and how much is bipolar as they are actually very similar for me.

I know for many sufferers though depression doesn't come into it at all though and it's entirely physical.

Bipolar 2 is mostly depression and occasionally hypomania = bouncing around trying to fit as much into each day as possible, high mood and being speeded up. For me ME was (is?) all the same symptoms as depression plus light sensitivity, feeling cold all the time and not being able to tolerate noise. Then on good days I would rush around trying to cram life in while it lasted. As you know , that's the worst thing you can do! After hypomania comes a crash of depression, just like with ME the physical and emotional crash that follows a good day when you have overdone it.

There are many similarities. Both are horrible.

Around age 14 I spent 6 months bedridden. They thought I had glandular fever or something, I was too weak to even get to the bathroom alone and struggled to sit up and feed myself some days. My arms felt like lead weights. But I was also extremely depressed so it's hard to tell, depression or ME? Then I was very up and down before a spell in hospital when I was 17 where they did all the tests to rule out anything else and decided it was definitely ME. Over the next few years I gradually improved until I got to the point where I was mostly well and could lead a normal life. I'm 36 now.

Even now though I sometimes get symptoms but it's not easy to tell if it's mental or physical with me now. The two have always overlapped for me.

It's different for everyone though isn't it. I'm lucky I had it young as I had a better change of recovery. I'm so sorry you have struggled with it so long.

Bloody hell though, yay you! Losing all that weight AND fighting ME - wow that takes some inner strength mrs!!

I take my hat of to you!

Caz x

Thank you, Caz! I've had the ME for so long it's a part of who I am really, weird as that sounds. It kind of simmers away in the background and then flares up into a relapse episode every now and then, especially if I get a bug. I get a lot of the things you mentioned - light and temperature sensitivity, mood problems (anxiety, depression, panic attacks), fatigue, muscle twitching and pains, palpitations etc. But I manage it by basically being a lazy sod when I'm not at work, lol. The first thing I do when I get home is go to bed for a while, and make sure I get loads of rest at the weekend. I just take lots of painkillers and antidepressants and plod along!

I do indeed remember the term yuppie flu - I was diagnosed in 1989, and that's exactly what it was known as. Because I was a young accountant, I fit the yuppie bill perfectly, lol. xx

 

[caz78]

I've just realised we were pretty much diagnosed in the same year, how bizarre is that! I may have been a year after you (ish) but I find that very spooky lol.

I managed it in just the same way as you. I have always struggled to work full time due to the fatigue so when I went to college they extended the course for an extra year so I could go on every other day and do a lot of work at home. When I'm working I try and work mon, wed, fri - consecutive days are tough. I used to sleep til noon at weekends too.

It's the norm now and because I'm usually ok if I'm not overdoing it I don't really see myself as having it anymore but sometimes i'll get a week or two that are very hard and that's when I start wondering if it really has gone or is just vastly improved.

Oh you yuppie you lol. The term was pretty ridiculous for a pre teen kid though lol. I hated it so much as I was visibly ill and people would ask what was wrong. My mum would say I had pvs or cfs or me, whatever, and they would look blank as they had never heard the terms - so invariably she would sigh and say yuppie flu. It was the only thing they would have heard of. It made me cringe lol.

Caz X

 

[caz78]

Weigh in today. Half a pound as expected, it's the right direction anyway x

New diet as of today. It's meant to be high fibre - all carbs must be wholegrain. Low sugar. A small amount of fat and lots of protein. Should be lots of fruit and veg but I can't do that bit.

B/fast - 2 weetabix with semi skimmed milk (no sugar)
Snack - yoghurt
Lunch - fishcakes and beans OR poached egg on wholemeal toast, spag hoops OR chicken and mash OR soup and wholemeal pasta
Snack - 2 ryvita with low fat philly OR 1 slice wholemeal with peanut butter OR 3 krackerwheats with bit of cheese OR 20g pretzels.
Tea - wholemeal sandwich - cottage cheese OR tuna OR chicken. Fruit smoothie.
Supper - one Weetabix.

So I have kept the diet the same but changed all my bread and pasta to wholemeal. Dropped the crisps with my tea and reintroduced morning snack and supper.

I get very hungry mid morning, afternoon and before bed which I never understood but apparently it's a blood sugar thing and it's better to eat regular small meals than 3 main ones.

We shall see what happens. It should stop the constipation at the very least lol.

Caz x

 

[caz78]

She said yes! I've got my metformin!!!

I have everything crossed that with the new diet and these pills I will get along a lot better, if not - at least I'm trying, and I will get other health benefits from this medication.

I've got a good feeling though :fingerscrossed:

Caz x

 

[wafflewaffle]

She said yes! I've got my metformin!!! I have everything crossed that with the new diet and these pills I will get along a lot better, if not - at least I'm trying, and I will get other health benefits from this medication. I've got a good feeling though :fingerscrossed: Caz x

I'm genuinely excited for you, I hope it helps with the loss hun and well done on the half a pound it's still a loss im proud of you that despite everything your still determined to do this! Well done how's the sleep going have you kept off the smokes? Xx

 

[caz78]

Aw thanks hun! It has been a rocky ride so far but I'm still pleased I have lost something. The constipation and sudden slow down of weight loss has got me down so I'm kinda proud of myself that I haven't given up.

I haven't smoked anything at all in 3 weeks! Nor have I wanted to. I will admit I have been vaping more but I have been pretty stressed and it's not as bad as lighting up.

Zero binges, in fact I haven't cheated AT ALL!! I'm amazed at that. Not a nibble of cheese or a square of chocolate, nada. I will start to incorporate treats once I'm losing a bit more and I think enough time has passed that it won't send me into a full on binge. I don't really want to wake my taste buds back up to that stuff tbh. I can't believe I have gone 3 weeks with no chocolate!

I think it's going to have to be a lifetime rule for me to never eat junk food in the evenings at home cos I know how easily I will fall back into old habits, just one more night, i'll stop tomorrow, i'll just finish what's in the house etc etc. If I do have treats it will be in the day or when I am better, if I'm eating out. I stopped everything when I was pregnant, I never managed to stop the cigarettes and I am very ashamed of that, I cut down to 5 a day instead, but I stopped everything else. Even the junk food. As I had gestational diabetes I ate quite well. But as soon as I stopped breast feeding the craving for old habits came back and by the time DS was one I was right back to all my old ways. It's something I need to watch carefully.

So even though the weight loss pattern has been upsetting I'm still achieving in other areas! And it's not like I haven't lost weight, 5lbs is nothing to sniff at. I was just so worried the way it slowed right down so fast.

Sleep is going so well! Last night was the easiest I have dropped off so far. I think it's getting better all the time. I've changed the times I take my meds and that may be helping too. To think of all the times in the past when I have laid awake until 4am practically pulling my hair out with frustration. This time has been so different. It's never taken longer than 3 hours to drop off and now it's mostly within and hour! I did order some melatonin on line out of desperation at first but by the time the arrived it was starting to get easier. Then when they did arrive I decided to carry on toughing it out as I felt my body was learning to sleep again and I didn't want to interfere with that. They are a comfort to have though, just in case.

So yeah, I may not have lost quite as much as I had hoped but look at all the other stuff I'm doing great with! That's really hard for me to say cos I was brought up not to be pleased with myself or brag but I'm learning that there is no harm in being proud of yourself when you've tried so hard.

Even if the metformin doesn't make a difference to my weight loss it's still a good idea as it will help my other PCOS symptoms. I feel like I'm finally looking after myself properly.

Caz x

 

[TracyGWill]

She said yes! I've got my metformin!!!

I have everything crossed that with the new diet and these pills I will get along a lot better, if not - at least I'm trying, and I will get other health benefits from this medication.

I've got a good feeling though :fingerscrossed:

Caz x

That's great news, Caz, I'm really happy to hear that! You're sounding much more positive, which is wonderful. xx

 

[caz78]

Thank you!

Caz x

 

[PrincessSparklePants]

Well done on your loss love I really hope that the tablets help too.

Has the poo fairy visited? That won't be helping your loss either if she hasn't x

 

[caz78]

lol yes she visited lol. I took my last orlistat on Wednesday lunchtime. I just couldn't handle it anymore. The way I was losing so slowly and so badly bunged up. Plus I got this weird rash, lots of red flat spots on my chest and legs (not necessarily related) I just felt it wasn't good for me.

So I decided to make my diet more PCOS friendly and see if that would help and to try and get the metformin. Even if she had said no I wasn't going to continue the orlistat. You can't be going so rarely and need laxatives for that. Even laxatives were taking a couple of day to work.

So last orlistat wed lunch, first fairy visit thurs aft and another this morning. Says a lot I think! I also suddenly feel slimmer, I wonder why!! I clearly can't lose weight on Orlistat, I just stop pooping lol.

So, hopefully my bowels will be functioning normally from now on

Took my first metformin with lunch today. It's a case of wait and see now. Maybe the more PCOS friendly diet (all wholemeal and no added sugar) will help, maybe the metformin will. Maybe i'll continue to lose slowly. Let's wait and see

I will keep you updated but I'm only going to weigh once a week now so I don't panic over fluctuations.

I still have to go for my weigh in once a month so the dr can monitor my weight loss. I'm there on Tuesday.

Is there a way to alter my thread title? Seems silly now I'm not taking Orlistat.

Caz x

 

[PrincessSparklePants]

Hope so lovely I'm so glad you sound happier

I think if you go to your first post in this thread you should be able to change it? If not you can contact admin

 

[caz78]

Thank you

Caz x

 

[PrincessSparklePants]

No worries hun You'l have to press the 'go advanced' button though x

 

[caz78]

Thank you very much

Caz x