Should I get tested?: Hey there, I have... - Thyroid UK

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Should I get tested?

Glitterypinksam profile image
47 Replies

Hey there, I have previously been tested twice in the last ten years for under active thyroid at my own request, but have always been told everything is normal. However recently within the past 2 months my symptoms have become worse. My nan on my mothers side has the condition and her two sister have an over active thyroid.

My symptoms are weight gain....which I put down to overindulgence and also the fact that I have always been overweight my whole life but always struggled to lose weight.

Feeling low/depressed... I have previously taken anti depressants and seen a councillor which has helped but I've still never felt 'right'

Arthritis.......I have had this since I was about 5 but it always seems to flare up when I get severe tongue ulcers.....which I currently also have now and have had for at least 6 weeks. Some of the ulcers have lasted 2-3 of these past 6 weeks but it's a constant of about 3 at a time with just as they are healing another few pop up. Also my tongue has become scalloped.

I'm cold a lot of the time, whereas I've always been a hot gal, yet I sweat a lot in the night.

My vision is constantly double/blurred or I can't focus, but I have had a recent eye test and he said my vision is borderline needing glasses.

My sex drive is as low as could possibly be, I.e. Once a month

I have also suffered with post natal depression.

My nails are flaky

In the past week i have noticed stabbing pains in my left forearm/wrist

My ears over the past 2 weeks have been popping like there is water in there and struggling to regain usual sound.

Sorry for the long list, I probably sound like a hypochondriac, but each time I've been to the doctors it's almost felt like I have been wasting their time.......well made to feel like that. So before I go again I thought I would ask (in my opinion) the experts as you are sufferers and know better than most.

Thank you for taking the time to read!

Sam

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Glitterypinksam profile image
Glitterypinksam
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47 Replies
Glitterypinksam profile image
Glitterypinksam

I forgot to add I have also been suffering heart palpitations which I have previously had ecgs and been monitored for which has come back clear, and no matter how much I sleep I can't 'catch up' on it.

Clutter profile image
Clutter

Welcome to the forum, GlitterypinkSam.

It does sound as if some of your symptoms may be hypothyroid and if it is 6 months or more since you last had a thyroid function test it would be a good idea to request another. Try to arrange for the blood draw early in the morning when TSH is highest. Make sure to request a printout of your results with the lab ref ranges which you can post in a new question because the 'normal' range is very broad and TSH at the top of the range does indicate you are becoming hypothyroid.

Ask your GP to test ferritin (stored iron), vitamin D, B12 and folate as they're often low or deficient in hypothyroid people and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Mouth ulcers and ear popping can be due to B12 deficiency and hypothyroidism and the stabbing pains in your wrist and forearm sound like carpal tunnel syndrome which is common in hypothyroidism.

Have a look at these links before you see your GP:

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

thyroiduk.org.uk/tuk/diagno...

b12d.org/b12-signs-symptoms...

Ruthi profile image
Ruthi

Its a sad state of affairs, but my advice to everyone is ' Never accept it when your doctor tells you everything is normal' Ask for a print out of all your results, and then, by the wonder of the internet, learn what these results mean.

You may see that although your results for certain tests fall within the ' normal' range, they are gradually changing. I always remember reading about Tom Hanks being diagnosed with Type 2 Diabetes. His doctor told him he had been watching the test results climbing inexorably, and he knew it was just a matter of time. But he hadn't told Hanks!! For heavens sake!!! Why not vtell him to make lifestyle changes while it was easy to prevent this to talk unavoidable disease? In my case my TSH climbed steadily over a period of ten years, and was still 'normal' when I nhad been experiencing debilitating symptoms for three.

Marz profile image
Marz

Ask for the TSH - FT4 - FT3 and the Thyroid Anti-bodies - anti-TPO - anti-Tg. When I was diagnosed in 2005 the first three results were in range ( or normal ) - but the anti-bodies were high and so Hashimotos was diagnosed and treatment followed....

You need the FULL story - not just half of one - and one that keeps you poorly and your GP prescribing unwanted pills for various symptoms you present with. The underlying cause is what needs treating.....

wall profile image
wall

My symptoms are weight gain....which I put down to overindulgence and also the fact that I have always been overweight my whole life but always struggled to lose weight.....those are your words ...Overindulgence....does that mean food I assume ?...they are many places to get advice abut diet..

.well you need to address it very much ....one way or another ...because overweight it causes so many illnesses....many of which would appear you have... it would help you very much and then you could perhaps address the thyroid problem if that is what you believe it is.

I am sorry if I seem tough and blunt but I believe what I say if fact .....you could develop diabetes being overweight ..maybe that accounts for your vision problems due to sugar imbalance .... doctors do not want to help those who do not help themselves that is why they show little or no interest, but to be kind they should get you answers even if blunt rather than send you away ...Kind regards Wall

greygoose profile image
greygoose in reply towall

That was unkind, wall. Don't you think she has enough problems without being blamed for her condition? If her weight gain is due to hypo then diet changes aren't going to help.

Weight-gain and difficulty losing it are typical hypo symptoms and, given the other symptoms, it all points towards hypothyroidism. It's more than likely that she's been hypo most of her life as she's always had difficulty with her weight. Saying that she 'over-indulges' is typical of the effect being hypo has on our self-esteem. So many hypo patients blame themselves for being over-weight, calling themselves 'greedy' and saying they 'over-indulge', when in fact they don't at all. They've been brain-washed into believing that it has to be their fault.

Being 'blunt' has it's place, but not here. This is a thyroid support forum. Being 'blunt' - especially when incorrect - is not supportive.

Sorry to be 'blunt', but posts like that make me mad. It just goes to show that you have no understanding of the condition you are supposed to be here to support.

Angel_of_the_North profile image
Angel_of_the_North in reply towall

No way to know that - hypo people often think eating three square meals is "overindulging". Slow metabolism = overweight (usually). Eye problems can be muscular weakness, early TED (occurs in both autoimmune thyroid conditions) or even, just to scare everyone, early sign of cancer. Or just low B12.

Glitterypinksam profile image
Glitterypinksam

Thank you to everybody for taking the time to read and answer. I will be booking a doctors appointment armed with the information I have learnt. I have suspected for a while that I may have this problem, as I am mirroring my nan in sooooo many ways and she suffers terribly and has done all her life.

It's defiantly not something that should be taken lightheartedly. My mood swings are getting out of control now and I just always feel 'ill'.

I can normally lose 1/2 stone then that's it, no more which isn't right when I am 2/3 stone overweight.

I also find it odd that my arthritis flares up when my tongue does.

I think I will print off the questionnaire on the thyroid uk site and take that too as I have ticked about 50% of the symptoms.

Maybe they will just say I am overweight and that is the cause though

greygoose profile image
greygoose in reply toGlitterypinksam

Maybe they will. They'll say anything rather than diagnose a thyroid problem! But stick to your guns!!! You know your body better than anyone, and you know there is a problem. and it isn't just being over-weight. Insist, politely but firmly, that they do the tests listed above. They have no logical reason to refuse.

Good luck.

Hugs, Grey

humanbean profile image
humanbean in reply toGlitterypinksam

I had dreadful mouth ulcers for a long time. I also had a thick, oversized, and scalloped tongue. Sometimes the ulcers were the size of 2p pieces and they lasted for as long as 3 months. My speech was affected. And I bit my tongue a lot too, because of the size, and that precipitated even more ulcers. I was "cleared" of having oral cancer, but none of the treatment that was suggested actually helped.

I helped myself in the end. I was severely short of iron. I bought my own iron supplements and paid for my own comprehensive tests. (But your doctor should help if you ask.) Improving my iron levels improved my mouth ulcers a lot. I still get them, but I get far fewer of them, they last a lot less time, and they are a lot smaller. My tongue is less scalloped, and is much more normal-sized. My speech is now back to normal for me.

Getting your vitamins and minerals up to optimal levels - which isn't the same as being "within range" - will help enormously.

Do you have problems with your gut? Indigestion, heartburn, constipation? If you do there are ways and means of improving that too. Ask for advice if necessary.

Having thyroid problems and treating them is never about "just" your thyroid. You have to take a look at everything and improve what you can.

Good luck, and welcome to the forum.

wall profile image
wall in reply toGlitterypinksam

Hi arthritis is an immune problem malfunction .(inflammation)..as are many other ailments in men and women ...I wish you luck in your pursuit ..but if you feel strongly about this fight all the way ..Cheers .....Wall

Mummilou profile image
Mummilou

Wow, your symptoms sound very like mine, Ive never thought of the popping ears as I symptom, which I have and drives me mad, I'll add that to my long list! I'm currently under a rhuy for a lupus like condition, but I'm becoming more convinced it's hypothyroid. I've just asked my GP for a full thyroid screen. It's a two week wait for results. I'm desperate for a diagnosis, I'm fed up with feeling so ill all the time. It's been at least 9yrs now and I'm getting worse.

Glitterypinksam profile image
Glitterypinksam

Mum mills, that's what I will ask for. I had a baby 18 months ago and haven't felt right since. I have always felt odd but it's worse since having my daughter. At first I thought the fatigue etc was just down newborn baby. I have always been somebody who is constantly tired no matter how much i sleep, but this is just ridiculous now. I am really fed up and just feel like I am moaning all the time.

Glitterypinksam profile image
Glitterypinksam in reply toGlitterypinksam

Grrrrrr auto correct I meant mummilou

Clutter profile image
Clutter in reply toGlitterypinksam

Glitterypinksam, hormonal changes ie puberty, pregnancy and menopause are all hypothyroid triggers which is why it's so prevalent in women.

MariLiz profile image
MariLiz in reply toGlitterypinksam

My friend's daughter was back and forth to her GP after giving birth, with all those symptoms. GP was telling her she had post natal depression! It wasn't until she saw a locum at the surgery (a lady doctor who had been an obstetrician before working part time as a GP locum), this lady Doctor read her notes, looked at her and said, I know what it is, you're hypothyroid! My friend's daughter burst into tears, just to have someone believe her! Apparently, it is well known for the thyroid to stop working after having a baby, especially if the birth was a difficult and traumatic one. Sometimes this is only temporary, and it will restart in time, but in her case it has been a permanent problem. Good luck with getting it sorted. MariLiz

Glitterypinksam profile image
Glitterypinksam in reply toMariLiz

Thank you for this, my daughters birth was traumatic and difficult which ended in an energy c-section. How many people wish their doctor would say that to them. Thank goodness she is being sorted!!!

Glitterypinksam profile image
Glitterypinksam

Thank you reallyfedup123. I will print the questionnaire off on thyroid uk and then write these on the back also so I know exactly what to ask for. You are all so helpful, thank you

Jodypody profile image
Jodypody

Hi I think Grey Goose has a difficult time accepting that hypos can lose weight. You can but you have to work 25/50% harder than someone with an efficient metabolism. But if you want it you can have the body you are happy with. Depends how hard you're willing to try.

Clutter profile image
Clutter in reply toJodypody

Jodypody, Some hypothyroid people CAN'T lose weight no matter how hard they try. Those who do will be optimally medicated before they were able to lose some weight.

Jodypody profile image
Jodypody in reply toClutter

So you're telling me that a hypothyroid sufferer couldn't lose weight if they ate 1000kcal per day for instance? I find that difficult to believe

Clutter profile image
Clutter in reply toJodypody

Jody, there are people on this forum starving themselves on 500 calories a day, working out like Olympic athletes and unable to lose an ounce. Some actually gain on such a regime. The weight gain is often mucin and water under the skin, not fat or calories. The restricted diet actually works against them, slowing their metabolism further and the body goes into starvation mode and hangs on to what fat they do have.

Jodypody profile image
Jodypody in reply toClutter

You shouldn't go below 1200 and if you train like an athlete the resulting weight gain would be muscle. More realistic to ditch all refined carbohydrates eat clean wholesome foods and up protein and fats. Fact. Oh and resistance training as muscle increases metabolism. Fact. Have a look on hypothyroid Moms website.

Clutter profile image
Clutter in reply toJodypody

Jody, I wasn't talking about me. I can't gain weight but I became hypothyroid overnight and didn't have weight pile on relentlessly for years.

Nevertheless, having made dietary and lifestyle changes many hypothyroid people cannot lose weight.

Jodypody profile image
Jodypody in reply toClutter

I was responding to the comment you made about "people on here eating 500cal training like an Olympic athlete". You couldn't train like an athlete on 500kcal. I occasionally will do insanity first thing on an empty stomach to boost fat loss but you could not do that every day no matter how in shape you are. Your body would adjust to starvation mode and guess what? You gain weight. As I said it's really tough but not impossible. Check out autoimmune Paleo diet.

Jodypody profile image
Jodypody in reply toJodypody

P.s. I'm trying to inspire people and give them hope. You can't just give up. You can lose weight and exercise but you've got to be prepared to work twice as hard as anyone else. I'm living proof and I'll help anyone that wants it. I can't treat myself like other people do. I have to accept the funny looks when I'm declining the biscuits or the pudding that's offered but I'd rather that than have to work my backside off for two weeks to offset the damage. And that's the point. That's what I've learned I've been dished this condition and it's tough going. But, I have two choices. I hide behind it and be trapped in a body I loathe or work like stink (I have 2 small children one of which doesn't sleep) I work so I haven't the time to go to the gym. I do pretty much all the household chores. But, everyday I watch what I eat. I don't cheat I do a workout P90x or Insanity everyday. Upside is I probably cope with everyday life at 46 than someone who isn't physically fit. I realise this isn't everyone's cup of tea but if you want it it's possible that's all I'm saying.

Angel_of_the_North profile image
Angel_of_the_North in reply toJodypody

I lost the weight I gained without doing anything except improving meds and meditation, but it took several years. Stopping dieting was probably the trigger. However, I have bad adrenals now, so forget to eat. Can't win!

Angel_of_the_North profile image
Angel_of_the_North in reply toJodypody

Believe me I used to be a competitive body builder and when my thyroid "died" I could train as though I was about to do a competition and eat less than 1000 cals a day. I put on 2.5 stone in about a month. It's just not "normal". Ok I spent the rest of the time knackered and asleep, but still...

Angel_of_the_North profile image
Angel_of_the_North in reply toJodypody

No. That would probably make them worse. I'm quite slim - my adrenal problems suppress my appetite - so I eat about 1000 cals a day. Sometimes less and my weight stays the same. I'm not even very hypo!

Jodypody profile image
Jodypody in reply toAngel_of_the_North

And that's my point I supppse. I tend to stick to around 1200 to 1500 a day to keep things under control and it took a year to lose the 7lbs Id put on after having my daughter. I started doing Insanity 8 weeks after her birth and even though I was breastfeeding I couldn't eat the extra calories recommended. Being on levo hasn't made much difference yet either I think I'll more than likely need T3 for that as I'm still freezing cold

Barb1949 profile image
Barb1949 in reply toJodypody

Jodypody I think you are very lucky that you have managed to lose the 7lbs you put on. Unfortunately, many, many more of us have put on a vast amount more than half a stone over the years and find it almost impossible to lose much of it. Cutting the calories as far as you have done will make the majority of us actually put on weight, plus as we are also so tired most of the time exercise is another thing that is almost the last thing we can do.

I was diagnosed almost 24 years ago, but looking back I believe my problems began after I had my eldest son 45 years ago. Over the years I have lost and put on weight following all kinds of diets and exercise programmes, which ended up with me weighing in at nearly 30 stone. I managed to lose 9 and 1/2 stone over about 7 years but have now plateaued out at around 21 stone. I have been this weight for 2 years now and cannot get any more off no matter what I try. I have even been to the hospital dieticians and asked for gastric surgery but they won't even consider that.

Since being on this site it seems I will probably find it much easier to lose more weight when I am optimally medicated. I am presently having lots of tests as it has now ben found I am very low in all kinds of vitamins, hormones and have early kidney disease. All because of being hypo.

Please, therefore, try not to inspire us quite so much. It honestly does not help.

Jodypody profile image
Jodypody in reply toBarb1949

With respect, I lost the weight despite being hypo but not on meds. Despite being up all night breastfeeding I would still haul my ass in front of the tv and get it done. I was shattered obviously but being fit helped me cope. I have only been on levo for 3 months so remained undiagnosed for years. Difference is I'm one determined little beggar that's what I'm saying.

greygoose profile image
greygoose in reply toJodypody

Well, bully for you!

Thank you for your analysis of my personality, Jodypody, but I don't have 'difficulties' believing anything to do with this disease. I've had it all my life.

But what you don't seem to understand is that everyone is different. We aren't all as lucky as you. And what I actually say is that losing weight is usually not an option until thyroid hormone levels are 'optimised'. Perhaps you don't know what that means. It means when your thyroid hormones are at the right level FOR YOU. Not for your next door neighbour or your doctor, or the right number on a sheet of paper or a screen. The level at which your symptoms have disappeared - including weight-gain. And that level can be different for everyone.

You may think you are giving people hope, but what you are actually doing is setting them up for failure. And we have quite enough feelings of failure with this disease, thank you very much. People trying to emulate you and failing are going to feel so bad about themselves that it's going to set them back quite a bit. However, if they are told to relax, not worry about their weight, just eat well, walk and swim, and get their levels optimised, they are far more likely to lose weight in the end.

But if they cut their calories to rediculous levels, and exercise to beyond their strength, they are more likely to put weight on than lose it! Calories are necessary for every single bodily function, including conversion. But if calories are in short supply, then conversion is the last in line for a hand-out. You see what I mean? Conversion suffers, so you become more hypo and put on even more weight.

Same with exercising. But exercising not only uses up your calories, it also uses up your T3. So you become more and more hypo and put on more and more weight.

Besides, as Clutter said, it's more likely to be mucin causing the weight gain than fat. Maybe yours was fat and that's why you lost it with diet and exercising. But if it's mucin, that's not going to work. The only thing that's going to work for that is getting your T3 optimised.

As for myself, since we're getting personal, I've been Hashimoto's hypo and over-weight all my life and dieting and exercise has made no difference - oh, except for the times I was on a hyper swing, and then I lost lots of weight. Surprise surprise! But then there was the time when the pharmacist gave me 75 levo instead of 175 and I put on 14 kilos in a month. Do you know that it's physically impossible to put on 14 kilos of fat in a month? So, conclusion? Mucin and water due to hypo. Wow!

But now, my T3 is optimised and I've lost about 50 kilos without changing my diet and without refusing that biscuit or pudding if I feel like accepting it. And without exercising like a maniac, either. Now that's what I call inspiring!

Even so, I know that there are others with high levels of FT3 who still can't lose weight, no matter what they do. Conclusion? We're all different.

So, I'd be obliged if you kept your condescending comments about my character to yourself and learnt a little bit about your disease. OUR disease. Thank you so much.

Hugs, Grey

Jodypody profile image
Jodypody in reply togreygoose

Could you let me know at which point I stated to go dangerously low on calories? Quite the opposite I said you shouldn't go below 1200

Jodypody profile image
Jodypody in reply toJodypody

You have already said that jogging is bad for you which is ridiculous. Did you know humans are designed for distance running. That's how we used to hunt. We couldn't catch our prey on sprinting but we out ran them.

greygoose profile image
greygoose in reply toJodypody

Actually, I think you ought to learn to read. I didn't say jogging was bad for you, I asked a question, I said 'I thought jogging was bad for the heart' or something like that, expecting someone to jump in to confirm or deny. I was opening up a discussion. If you knew, then why didn't you say something. I know I did read that somewhere. Besides, jogging is hardly the same thing as running.

Also, if you read carefully I think you'll find that I didn't say you stated that people should go dangerously low on calories. What I was saying was that people do do that in a desperate effort to lose weight, and it doesn't work.

Jodypody profile image
Jodypody in reply togreygoose

With respect I can read and you said that all that "pounding up and down jarring your spine" was bad for you. Being sedentary is most definitely bad for you. And I say once again I didn't advocate drastically cutting calories. I suggested cutting carbs especially refined and suggested the paleo diet recommended for autoimmune disease.

greygoose profile image
greygoose in reply toJodypody

And I say once again that I didn't say you did!

OK, so I said the spine, not the heart. Goodness! Is it necesssary to split hairs like this just to find something - anything - that I said wrong? The point is that I read somewhere that jogging was bad for you. I don't know, sport is not my subject. I expected someone who does know to comment.

However, I didn't suggest that people be sedentary, I mentioned walking and swimming as being suitable exercise for people who aren't optimised because anything more will deplete their T3.

Jodypody profile image
Jodypody in reply toBarb1949

So you think working my backside off and sticking to a low carb diet for 12 months and only losing 7lbs is lucky? I call it gritty determination

Barb1949 profile image
Barb1949 in reply toJodypody

Jodypody, Please, please get of your high horse and stop lecturing others on here, probably including myself. Grey has told you more than once, WE ARE ALL DIFFERENT! And do not get the idea that you are far more motivated than any/everyone else on here. You know yourself how difficult your weight loss was, now consider how much more difficult it must be to lose 9 and1/2 stone in 7 years and you will get the idea.

You are obviously still quite young and it has to be said, even with Hypo it is a bit easier to lose 'fat' weight when you are younger. Unfortunately, I am now 65 and it gets harder.

As far a exercise goes, Grey is correct, jogging is not good for your heart or your joints, even without our extra problems. Yes running is good if you have the energy and are capable in the first place, walking is really the best exercise along with swimming which are both low impact but raise the heart rate. But I would still take (have taken) medical advice before starting on any exercise programme.

Unfortunately, many people who have hypo, especially those who have had it many years undiagnosed, are virtually bedbound and unable to do any exercise.

I applaud your efforts and am happy for you that you have achieved your goal, but a I said before

Please try not to inspire those of us who already feel bad that we cannot get the weight off. Believe me, it is no fun being large. This disease has changed me from being a very fit, athletic person to being disabled. In my head I have convinced myself that if/when I lose the extra weight I will be fit again and able to walk 20 miles a day, swim 10 miles and ride a bike. In my heart I think at my age it is not so likely but until I try I will never give up. Despite what you have implied I am very well motivated.

Jazzw profile image
Jazzw in reply toJodypody

It is gritty determination. No one would argue with that. But the reason you only lost 7lbs on a low carb diet for 12 months was because you weren't being treated for hypothyroidism until 3 months ago. You've kind of proved the point Grey Goose was trying to make - that when you're undertreated for hypothyroidism no amount of exercise or calorie restriction will make a dent. 7lbs lost on low carb will be lost glycogen ŵeight, not fat.

Jodypody profile image
Jodypody in reply toJazzw

Actually it wasn't. That is the initial effect on low (not no) carb regime but actually I gained a fair amount of lean muscle. Why don't you try googling weight loss for hypothyroidism? There is a really interesting article on ehow to name but a few. And before you get angry with me it recommends cutting carbohydrates as we hypos dont burn them efficiently. In fact all the article recommends is all that I do. Funny that

Jazzw profile image
Jazzw in reply toJodypody

I already eat low carb, thanks, and have done since 2002. I'm wheat intolerant (probably coeliac but can't face reintroducing gluten to find out - being ill is no fun at all!). I am the Queen of Google. :)

I am wondering why you're being so defensive about this - there's no need, not with us. This is (usually) a safe place to exchange thyroid-related experiences.

I'm very fat, by the way. I didn't need to tell you that, but I have because I am unhappy - actually, "offended" would be the more appropriate word - that you're saying I'm fat because I don't try hard enough. You don't know me. I defy anyone to try harder than I have over the past few years. Still, I am now slowly losing weight, courtesy of starting thyroid hormones before Christmas.

I'm delighted you've found something that works for you and I hope your journey back to full health is a speedy one.

Jodypody profile image
Jodypody

Oh and the blurry vision thing. That's a symptom too. I'm lucky (depending on your viewpoint) to have found a doctor after years of complaints that was prepared to trials on thyroxine despite me being low but within range. After the birth of my daughter I too went downhill. Childbirth kills thyroid. I had a car crash cos I was out of it most of the time with brain fog and even checked myself in to a&e one day as I nearly passed out at the wheel. Doctors conclusion? I was pre menopausal. Ha! Yeah right. Anyway been on levo up to 75mcg now and improving. Tsh was 3.28 and t4 9.6 t3 3.9 ferritin 26. Keep fighting

Glitterypinksam profile image
Glitterypinksam

I have just spoken to my mom about this, and I have now found at that not only does my nan have a thyroid problem and her 2 sisters which I new, but also her other sister and 2 brothers, as well as her husband (my grandad). My grandada got so bad he eventually had to have it removed. Surely a doctor can't ignore all this. I really hope they will give me an answer when I go. I am going to make a list of all the information I know about my family etc.

greygoose profile image
greygoose in reply toGlitterypinksam

I'll keep my fingers crossed for you, Glitterypinksam. Let us know how you get on.

Glitterypinksam profile image
Glitterypinksam in reply togreygoose

Thank you x

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