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Wrong stockings?

Wrong stockings?

I have lower leg LD, but believe it has progressed, as I have enormous, hard 'muffin-tops' above my stockings? I also have (what seems to be?) a narrower 'band' around both mid-calves, which is narrower than the rest of my legs.

I have the flat-knit, knee-high stockings without the gripper-band, (the grippers gave me itchy spots) and they quickly wriggle into the bands when they're put on, so I'm constantly having to pull them up!

I had an appt. to see my nurse last week. She was not my 'usual' nurse, but a young woman who only seemed to want to measure me, and get me out of there! I told her my fears, but she insisted that I only needed 2 new pairs of (same sized) stockings, as the measurements hadn't changed very much, and also some glue, to last me another year! This was despite my telling her of the horrendous heel/ankle-pain I now get when I put my foot on the floor, and prodding the 'muffin-tops' to show her how hard and swollen they are! She dismissed my fears and sent me on my way - riding my small mobility buggy, as I can no longer walk more than about 30-40yds.

This is before I put my stockings on in the morning. I can't photograph my other leg like this, as a hip-replacement won't allow me to twist the leg into position. I would be interested to hear any comments...?

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oldestnewest

Looks like you need another appointment with the Clinical Lead - not a repeat prescription.

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Many thanks Lynora. Some people just have no idea what this affliction is like!

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Have you got the phone number? Phone now (it'll be the answer phone). Leave a message for an urgent call back or just say you want to try thigh highs. Were you measured all the way up full length of leg?

Do you think they are saving costs because yours would have to be made to measure ? I would ask for a pair of tights. If you don't want tights then politely insist on a pair of full length / thigh high stockings.

Why do you say you have lower leg Lympthoedema? Looks like whole leg ??

x🐥

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Hi Mary.

I believed it because that is what I was told? These are only the 3rd. set of stockings I've had, (the 2nd pair [measurements] were slightly bigger), but I've put on so much weight and thought that was my problem? But my knees have become HUGE and get very firm, and puff over the tops of the stockings. To date, I've only been measured to below-knee. I do believe you may be right when you say they're trying to cut costs with me!

As I was (literally) ringing for another appointment, my SO brought in a letter for me from our mailbox - another appointment at the clinic on the 15th with my original LD Therapist, but it's for 08.30am! As I'm up most of the night (visiting the loo, blocked sinuses,...), 08.30 isn't possible, so I've had to request a later one!

It's rather strange that I've received this appointment, as there was no mention of any 'follow-up'.....??

I also rang the chemist today, to find out if my new hosiery had arrived? They haven't even received the prescription yet, and it's been over a week since my LD appointment!

Something doesn't seem right...?

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It seems whoever saw you had a rethink or the boss did ??

Who told you? We're you referred to LD clinic by GP or Consultant?

It's hard to believe they would not measure you properly - the whole length of both legs ??

When I was measured pen-marks were put all the way up my legs about every 2 - 4 cms. Then the leg was measured at every mark and called out to the other nurse who wrote it done or put straight in computer not sure which.

My first stockings were given to me in my 2nd clinic appointment (first one after being measured). I had to wait a long time as they take time to make - then we're given off-the-peg !!

Also, last appoinment I told them I thought my stockings were slightly long. They checked and I'd been given regular length without being asked or having length measured. I told them I am Short leg fitting. They doubted this & measured my length. Then checked the size range on the computer and yes - I AM Short fitting. So they ordered a pair in Short.

Guess what arrived in post ? Exactly same length ?!?!?!!!

I don't get them from the chemist. The clinic post them to me.

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Hi Mary.

I was diagnosed by a doctor at the practice, who then referred me to the LD Clinic. At my first appointment, the nurse measured me from ankle to knee, every 4"(?).

When my 1st set of stockings arrived (wrong ones - had to be re-ordered!), I had another session, when she explained how to put the stockings on,...

My second appointment was sent 9 months in advance - which I subsequently forgot - so was given another one (this recent one) in 3 months. I begin to wonder if all these extreme appointment times are made on the basis that most people forget, and the Government Spin-doctors use the missed appointments for their own number-crunching (I have an orthopaedic appointment in 12 months!!!)!? It's amazing that by forgetting the 9 month appointment, another one suddenly appeared for 3 months...?

At least getting my stockings through my local chemist, they're checked before I receive them? I wonder at the cost to the NHS of all these 'wrong' orders, yet the lack of further treatments (MLD, etc) through lack of funds?! 😒

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I asked for MLD & I don't qualify - apparently you have to be a certain minimum width to qualify ?!

YET - when I told them my thigh measurement over the phone (before ever being seen in clinic ) she sounded empathetically shocked at size ???

Keep asking - politely but firmly - go in with your mind pre-prepared and determined that you will not get upset !

It's shocking what we have to do to get correct care and yes appalling at the cost of NHS staff errors, negative attitudes, political wasteful rules etc, etc . . . .

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My legs get measured exactly the same way with little pen lines all the way up the leg from ankle to thigh and measured on each line and measurement put in computer.

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Hello, I agree with Mary as you should of been measured from ankle, then knee then thigh. Poor leg being treated like this especially when you are in pain. Also if you have the wrong supports, know you won't, but don't let them anywhere near your leg. Give them a jolly good telling tomorrow, if able to. That nurse was very wrong.

Let us know what happens, take care xxxxxx

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Hi completely.

See reply to above message? It seems I'm being fobbed-off, so I'll have to ask some questions!

And what about your appointment (PM).....? xx

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Ask to try full length stockings

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As others have rightly said, it looks and sounds like you need a thigh garment. Call/leave message for the lead/sr nurse to assess you with a view to getting thigh garments as a matter of urgency. If you are not given an appointment ask them to send you/signpost you to the formal complaints procedure. If you do have to make a complaint to get an appointment then so be it, however they will likely do what’s needed to avoid a complaint.

You know your body better than anyone else, particularly a nurse who’s never before examines you and ignores your concerns.

It is not unusual for the lymphoedema to become an issue further up the leg like you’re experiencing. It sounds like the nurse you saw has little training or knowledge of LE

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Hello, You could do with another appointment with the specialist if you feel that this is a change brought about by wearing the wrong socks or stockings. I know what having venous lymphoedema feels like, as I do still have it to a lesser degree than Feb or March of this year, which is when my activity levels started to rise with packing to move, then dealing with decorating and getting my home ready to move back in to, then moving back and being constantly on the go for weeks sorting my way through the masses of boxes containing my personal possessions. So this stress , tension and activity has obviously done me some good, as I have lost the puffiness that was on the top of both my feet and can now get into my 9 out of 10 pairs of my shoes. I also lost weight during this time and I have since made a deliberate effort to keep doing so, I say this because both my legs are a similar shape to yours and they were described by my specialist nurse as very large legs that were disproportionate to my body. Although, I must say this I have always had this shape of leg but ultimately over the years of weight gain the shape had grown proportionately to their natural shape but not my body. Throughout my life I have always been two different sizes, smaller on the top and at least 1 size larger for the bottom downwards. Even today I am still two different sizes and in my youth it caused enormous problems when clothes buying. But when my feet started to swell and my ankles started to fill up and change shape I knew something was wrong but thinking it was just water retention and having GP's that constantly told me you need to lose weight and the swelling in your feet and ankles will go away. I didn't believe them. I didn't believe them because my father also suffered with Lymphoedema and he was a very thin man in his latter 15 years of life, so saw my problem as hereditary even though dad's problems had started in his late 40's. Other suggestions from my doctors were that I should join a gym, join weight watchers and eat a mediteranean diet based around Jamie Oliver's 15 minute recipes.

i'm sorry none of this helps you, but I would say that some of what my doctors said then I now realise was right, but personal circumstances of irregular teaching work meant that financially I could not afford to Join Gyms, Join Weight Watchers and to take on board the expenditure of eating healthier. I still can't do any of this today as being on UC a benefit that only rewards you if you are in regular work but not if you work is sporadic, means that I am on a serious budget only shopping once a fortnight. So Gyms, Weight Watchers, life insurance , property insurance, up front funeral plans, specialist diets etc are just not affordable. But with having kept myself active this has obviously worked and reduced the swelling in my feet and reduced any pain I used to get at the end of the day, especially after a long day of supply teaching.

So there it is, being active does you good.

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Hi Mo.

Sounds like you've been having a rough ride, but I'm glad things seem to be 'levelling-out' for you now?

A lot of what you say rings bells with me - from my teenage years I was always a 'chunky' girl, and in particular, were my legs! My (6yrs older) brother used to tell me that with legs like mine, I should have played rugby (typical sibling taunt), and the memory lingers! I was never able to wear fashionable boots, because my calves were too big to fit.

I'm not aware of it being hereditary, but my Mother's ankles used to swell and cause pain, but in those days it was fairly 'normal' and rarely mentioned!

I was never excessively overweight, so dieting was never considered, but I now have serious spinal problems which cause Sciatica, and arthritis, with chronic pain from almost any movement. My mobility has been SERIOUSLY curtailed, and with the onset of LD, my weight has ballooned to almost double within the past 4 years!! But in particular, my legs have swelled out of proportion, into the peculiar shape I have now. I can't put my (one) foot flat on the ground without feeling as if my ankle is being snapped off, can't walk more than 30-40 yds, can't stand for more than about 5 mins, can't stand unsupported,....., so exercise isn't even an option! I just feel as if I'm just waiting to explode at some point!

Like you, I'm on benefits, and can't afford fancy gyms. I did attempt gym-access/swimming through my doctor, but the gym Assessor couldn't work out a regime for me because of my multiple health issues, and I couldn't even climb the steps to get into the pool! So at the moment I'm at an impasse!

But hey-ho! There are many in graveyards who'd willingly swap places....? x

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If you're allergic to the silicone band, then thigh length stockings won't suit you. It may be worth considering tights. As everyone says, get another appointment and request tights. They will be difficult to get on but there are options with the tights - like adjustable waist bands and zippers, plus variable compression - so you can have a lighter compression as you go upwards, making putting them on a bit easier. Good luck!

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Hi Petra.

Thanks for the info. I'd no idea there were such things out there, and never considered I could ask for anything? I just believed we only got whatever we were given!

I'm certainly going to be making some requests.....! x

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Hello

Petra, have been reading answers to dear Hopalong and saw you mentioned an allergy. Do you have any knowledge about the under socks/stockings that are put on before wraps, bandages whatever is prescribed? As of 3 weeks ago (maybe longer), my nurse measured me etc., and I had a prescription for some lovely soft as soft stockings to put on before the "new" wraps which were from foot to thigh (both legs). When fitted out at the clinic all felt fine, left clinic and we started home. I felt extreme uncomfort and could not wait to get them off so as soon as we got in the door I sat down and my husband removed them for me. My legs were like beetroots (when you have cellulitis) so obviously left them off, told my lymph nurse. There is a possibility that I had an allergic reaction as these lovely new stockings contain some kind of silver in them, but after another visit to my nurse she asked me to have a try with just the old cotton ones on legs , and same with the new softy ones. Even the old cotton ones brought my legs up again and this was without any wraps or bandages. Heaven knows what is going to be suitable as to me it seems like my legs are getting overheated by wearing anything like this close to my skin. I am at a complete loss. Was due to go back to see my nurse but my husband has not been well enough to take me, bless him. Doubt very much if she will know what to do either, I certainly don't, so not wearing anything at moment.

Just wondered if you had heard of anything like this?

Thanking you for any thoughts you may have xxxx

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Hi. I have all sorts of allergies and although Nurses were marvelous in trying to find the right type of creams and open-toe compression stockings, I find that heat is the big problem. Around the house I never wear shoes and just wear sandals outside to keep my feet ventilated. I also keep a square flat icepack in the freezer so that when I sit down and raise my legs on a pouffe I can, if necessary, put a thin towel over my legs and put the icepack on top. At night I remove my stockings. Quick rinse and dab of my legs, light cream. and wear knee length nightie. I have the lightest duvet (5 tog) and a pillow with a cotton pillowcase to go between my legs. If I am chilly I wear a short, lightweight dressing gown for warmth. This may not look very elegant but it keeps my legs cool. I should also add that I have my own bed !

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Snap about shoe wearing, I really do not like shoes never had, but having this ordeal I just live in a pair of 5E adjustable sandals inside and outside. It is the stockings, either the new softy ones with the silver bits (allergic) or even just the cotton ones. I have had tested both and on both legs for about an hour, could not stand them any longer as legs (up to knees) reacted, red, hot and made the lymph glands more prominent. Still have to tell my lymph nurse but do not know what on earth she will suggest. Legs just react to any heat on them so no idea of how to stop them flaring up, 1 hour roughly and that is it they just get taken off and is such a relief.

Like yourself have to have the minimum amount of bed clothes on them, and just wear thin p.j's otherwise is goes into scratch mode which sometimes I just can not help doing. Know it is a no no but can not help it.

You have given me some good ideas and will try them, but still can not wear any "under" stockings. Nightmare.

Thank you for replying to me PenelopeW, take care xx

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Have edited today's reply x

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I am so sorry to see that your legs have swollen so much above your knee, but thank you for sharing your concerns because for me it is a relief to know that someone else also suffers in a similar way. I have always been deeply ashamed of having large legs and happy to get below-knee stockings about 6 years ago that stopped the pain and swelling. I have fairly regular appointments but they are difficult to get to (I don't drive). My thighs have become at least twice the size they were but I haven't mentioned it at the clinic and never been measured above the knee. My knees are incredibly painful and have been for the last year. I have finally plucked up the courage to see my GP on Monday but I fully expect to be told that it is all my fault and that I need to lose weight. (I am currently 20 stone). Forgive me for hi-jacking your post, but I do thank you for your bringing this topic forward. I hope that you find something that works for you soon.

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Hi , have you :

1) Ever had your Thyroid gland function checked out - and

2) Ever been referred to Orthopaedics Consultant with knee pain ?

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Good morning Mary.

How do you feel today? Being as the clocks went back last night, I guess you were up at 4am....? 😮

I don't think I've ever had a Thyroid function test - only blood tests - and only had ortho-consult for hips and spine? I just know that the weird way I'm walking is affecting my knee - and my whole stance/posture/movements!! As you know, tests aren't done unless they believe there's a direct reason for one? Even then, it's the minimal (cost) diagnostic requirement? RIP the NHS. It's now 'survival of the richest'! 😪

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Or those who keep nagging! !!

Actually I overslept - can you believe it.

Up at 3.25am - took my Levothyroxine. Back in bed to read and dozed off so had extra hour plus !!!

Needed it ♡

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Hello, I am hyjacking today, hope you do not mind.

I too am on the same thyroid medication as you Mary, also up and kind of about (3 mugs of T later) at silly hours, normally 02:20, 03:07 then it could be 03:30, stay up then and forget bed just sit in a chair. Husband up when alarm goes off at 04:00 sometimes though it is 30/40 mins later.

Take the thyroid with other medication about 06:50 or 07:00 depends on husband as he is my carer.

Sorry to have come in between you and Hopalong just saw the thyroid mention, mine came to light during a blood test for something else. xxx

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Glad you "Hyjacked " and I know Hopalong won't mind!

Don't you know that the Thyroid medication has to be taken on its own with water only?

No other meds at the same time? No food or drink for an hour?

My late Mum used to take her's with all her other morning meds too. No one told her. That was many years ago when it was Thyroxine (natural from pigs I understand).

I'm on a PPI (Lansoprazole) and this has to be taken at least 2 hours away from Levothyroxine. I keep forgetting my Vitamin D (which is vital) because that has to be taken at least 4 hours away from Levothyroxine.

I was left undiagnosed and therefore untreated for many years. So lots of damage done.

I stumbled on to Health Unlocked last year and found Thyroid forum. It was only then that I learned to ask GP for blood tests for Vitamin D, B12, Folate and Ferritin because we could have deficiencies. I was found deffficient in 2 of them and low in other 2.

I was so angry I wouldn't go to GP for prescription for a while. When I eventually called in to book an appointment the receptionist produced a prescription! Said she'd wondered why I'd not been in to collect! Wasn't told that over phone just 'make non-urgent appoinment to see doctor" !

Silly thing was, one prescription was left at reception - I had to see doctor for the other.

May I ask ? Do you have Hashimoto's Autoimmune Thyroiditis too?

It's a nightmare sometimes isn't it.

Back to your Levothyroxine - is there any reason why you can't take it at around 3am - 4am like I do. You'd have to delay your cup of tea though, but could have water ?

🐥

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Hi again Hopalong 🐇

I had only quick glance of your reply earlier and couldn't understand it fully. But now, having looked again my reply was actually to IreneGG.

Having said that I was quite shocked because I thought that you ARE on Levothyroxine also for Underactive Thyroid?

Seems I've managed to get myself misunderstood (nothing new there! 😁). By Thyroid Function Tests (tfts ) I meant blood tests - sorry.

We are supposed to have annual Thyroid blood tests. But when GP requests tfts or TFTs the lab only test TSH. That's OK if you are stable with no symptoms. If we have symptoms then we need full tfts : TSH , FT3 and FT4. We also can ask for a referal to an Endocrinologist if we have Hypothyroid symptoms. It seems that the lab will only test FT3 for hospital Consultants requests ! In some cases FT4 result and TSH result is OK but FT3 is low in range. This is significant and means that we are a poor converter and need T3 prescribed as well as T4 or LT4 (Levothyroxine ).

NHS has been stopping patients T3 prescriptions since the price rocketed.

I think that only Consultants can prescribe T3 now, and even some of them are reluctant.

If we want to get well we have to keep fighting. Rest a while when it's all too much - then go back into battle.

🐥🐦

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Hi Irene.

No apology necessary. I'm glad that you feel more able to talk about this problem now, and hope you get some treatment for it? We're all (on this site) going through similar problems, so it's good to know we're not alone? Hopefully, it gives people more confidence to share information, to know which symptoms should cause the most concern, to find out what help is available, and not be afraid to ask for it? 👏

In reply to another sufferer, I measured my thighs earlier - one is 25.5" and the other is 29"!! I've gone from a size 12, to size 22 in 4 years, and it seemed to begin around the time of a hip replacement? I'm now getting increased pain from the other hip, so maybe that will be my next surgical intervention...? 🙄🙁

I believe that being overweight does contribute to extra wear and tear on arthritic joints (or any joints, come-to-that?), so you and I could probably benefit from losing quite a few pounds...? I don't know about you, but having to give up (most of) my favourite foods is so-oo hard - on top of everything else...? 🤔 But in the interim, I'm sure the doctor could help regarding the pain...? Good luck at the surgery tomorrow. x

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Hi Hop

Why should you have to give up most of your favourite foods? Can't you just cut down on them a little? You know - Reduce portion size and stop hunger by increasing amounts of veg and all the low calorie fruits such as melon, raspberries, strawberries that can be eaten freely ?

All vegetables (apart from potatoes & sweet potatoes ) can be eaten freely on a healthy reducing diet. There are several very low calorie fruits that can be eaten freely also.

Potatoes would need to be restricted to 2 medium portions each day. Other fruit to 3 pieces every day for example : one banana, one apple & one pear each day. (Or an orange, 2 plums, 8 grapes; a peach etc).

It's the loss of mobility that's the snag really. Difficult to slowly increase exercise from 3 x 5 minutes sessions to 3 x 30 minutes sessions every week. Difficult, unless you can get someone to take you to the swimming pool and don't mind using the hoist to get in and out. I used to, but not swimming at the moment.

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Hi Mary.

Cooking is one of the loves of my life, and my SO is a man with a BIG appetite (and girth, if you remember...? 😂). So food is a big part of my day, although standing to prep and cook it is total agony! Eating it is the only pleasure I get nowadays, but I think the calorific value of what we eat may need looking into now, as I'm almost totally immobile? Sadly, everything we like seems to be high calorie - cream, thickened sauces and gravy, butter..., but we do eat plenty of veg (but very little fruit)..... Yet diet seems my only option (or stapling my mouth closed? 😉)? 🙁

I did attempt swimming - going through my doctor scheme - but I can't make the early morning sessions, and the afternoon ones are full of school children! I'm not trying to make excuses, but it is VERY difficult for me, with no help at all?

Why have you stopped swimming lately?

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Hello Hopalong,

Just a quick one,

Did not know you had a thyroid problem, you have enough to cope with without that too.

Take care, speak soon xxxxxxx

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Hi Completely.

I've been on Thyroxine for donkey's years! I didn't realise it was such a big deal - until now? 😮 xx

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Hi Irene

If your weight gain is unexplainable - this is one of the main symptoms of an Underactive Thyroid.

Take a look on the Thyroid UK website and search 'Underactive Thyroid symptoms ' on that site. See how many you have.

If you're seeing your GP tomorrow be determined that you will not be intimidated or get upset about comments about diet / exercise etc and stand your ground.

I would write a list of symptoms and ask for some investigations. If you suspect that you have a Thyroid problem you could ask for the following blood tests :

Thyroid Antibodies (TPO and Tg )

Free T4 and Free T3

Also TSH (Thyroid Stimulating Hormone ).

Also Vitamin D; B12; Folate and Ferritin.

Some other Hypothyroid symptoms are : tiredness, constipation, hair loss, Facial (chin) hair growth. Lumpy swallowing or intermittent throat problems. There are many others and you don't have to have them all.

Could you also phone the Lympthoedema Nurse and ask for tights?

All the best for tomorrow. x

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I MUST look into this??? I've been on the same dosage of Thyroxine for YEARS (125mg), since I was first diagnosed as 'borderline'? I've been having annual blood tests since, but they're always 'normal', but I have all the symptoms you've mentioned - and some! - so I must do some reading.....!! 😵

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List all your symptoms of Hypothyroidism and see your GP - ask/politely insist on a referal to an Endocrinologist.

Not sure if it will come to much though. Ask Endocrinologist to test FT3.

Your TSH needs to be below 2 and not within 'normal' range. That's for people with a normal Thyroid (Euthyroid ).

You should ask for a copy/ print out of all blood tests results or at least ask for the details (numbers) so that you can write them down. If phoning you can ask for full information and ask them to wait while you write them down.

Everyone in UK can ask for copies of their medical records and get them free of charge now (since 25/5/2018).

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There's no such thing as "borderline" Hypothyroidism (Underactive). You are either Euthyroid (have normal Thyroid function constantly) OR you are Hypothyroid (Thyroid not working as well as it should - Underactive ).

Also - are you saying that you were started on 125mcg of Levothyroxine (note that is mcg and Not mg) because the usual start dose is 50mcg. It's dangerous to start straight off on a high dose, so we start on 50mcg then have follow up tests after several weeks then dose increase till symptoms abate and Euthyroid status resumed.

I have heard recently that younger adults may be started on 100mcg especially if T4 very low and / or TSH very high. I think also that Older people and people with heart problems may even be started on 25mcg.

Don't understand why you went straight on to 125mcg.

Have you ever seen an Endocrinologist?

Have you ever had your Adrenals tested?

🐥

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Hi Mary,

Have you had radio active capsules for yours it zapped mine i have had 3 and couldn’t be near anyone for more than an hour or use microwave and I’m still taking 150mg thyroxine a day.

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No - never heard of them !

x 🐥

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They are called radioiodene capsules.

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They are for treatment of Overactive Thyroid aren't they?

Mine is Underactive. I have Hashimoto's Autoimmune Thyroiditis & Hypothyroidism.

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Yes that’s right, I started with Graves’ disease 24+ year ago now hypothyroidism.

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I didn't have Graves. With Hashimoto's though, I had lots of times when I was Hyper. Just didn't know it was because of faulty Thyroid.

I think the only Thyroid antibody that was actually tested was TPO (Thyroid Peroxidase ). Which, of course, was raised. I had already had the Ultrasound scan of my Thyroid which showed the Thyroiditis / inflammation - I'd asked GP for it. That's how I got referred to Endocrinologist back in 2011.

I'd had Hypothyroid Blood results in 2008 which I hadn't been told about and had severe Hypothyroid symptoms for many years with no treatment so lots of damage done.

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Hi Bev

I've edited last reply. Too tired to finish it last night. 🐥

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Hi Mary.

It's so long ago, that I can't even remember what I was started on, but I remember it's only once been increased to its present dosage? 😮

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2nd November

(this thread is getting long!)

So you haven't been on

" same dosage for years (125mcg) since being diagnosed " ??????

The fact that you were given an increase means that your TSH rose above 2 (Target therapeutic level max 2 ideally max 1 ). Or your T4 was very low in range or below range. Hardly "borderline" if there was such diagnosis - which there isn't..

I gave you full info last year and again now.

Not much more info I can offer.

Be mindful to ask about Adrenals check.

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To Hopalong & IreneGG

Other tests people could consider asking about is having Adrenals checked out. Especially if found to have an Underactive Thyroid (Hypothyroidism ). Any Adrenal function issue has to be resolved before starting on Levothyroxine.

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Hello y'all. Sorry to hear about all the troubles going on here. Don't know if I have anything to add (I can relate to the chunky legs as a kid, the odd shaped legs, can't wear boots, ankle/heel pain.....). I'm a physio with lymph training, living in the USA (from Australia). Exercise is really important - even if you can't get to a gym, try to do some ankle/knee/hip exercises at home within your limitations. Keep moving - this will keep the blood and lymph moving somewhat, especially in your legs. Don't forget to elevate those legs when you can (even with compression on, elevation will help ease the pressure on the legs). For compression above the lower leg, have you tried sports compression tights/leggings? They will not be as firm as custom flat knit, but they will offer some support. I'm doing WeightWatchers (well, it's not weightwatchers anymore - it's just WW) at the moment - even when I get to goal weight, I will still have the odd shaped legs (probably lipoedema), but my creaking knees will thank me for getting some pounds off. With WW, I'm essentially eating a whole heap of veg/fruit/lean protein, and low carb (low fat, low carb) and the scale is steadily (slowly, but steadily) going down, without going to the gym to beat myself up. I'm pretty active but not an athlete. And 53 years old. I have chronic ankle stiffness/pain (another reason to lose weight - I'm falling apart at the seams). My legs do swell and my veins are ageing - but I do better if I get my weight down. That's my lot. Hopalong - I am so very sorry that you were treated the way you were by that therapist. I can only imagine what was in her head ("I only have 15 minutes with this patient …. it's all too hard …. I'm just going to repeat the last order for stockings …"). You really need a compassionate and experienced therapist, and a good long hour consultation to look at the whole you, and how to get your needs met. Getting compression right is complex - getting the fit and comfort right can take a bloody long time. Working on your home management program is important too (massage, skin care, compression, elevation, …..). Managing your swelling is a small part of your life - your therapist needs to look at your whole situation in helping you to get on top of this condition. I wish you well, and hope that the next therapist can give you the care and compression you need. (PS the names Hopalong and Deadfoot made me smile! I just like chocolate, and my name is Clare).

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Hi Clare - or should we call you Chocolate? 😄 - our international friend.

I imagine that was exactly what that young lady was thinking when she assessed me at the LD clinic, yet I'm glad that I'm being recalled to see my original Therapist, for whatever reason, as she was no help at all! And without the backing of fellow sufferers such as yourself, I would have carried on my way, not realising how her lack of professionalism would affect me?

I admire your resolve to diet (see my prior reply to IreneGG?), and wish I had more of your strength!

In the meantime, damage to my sciatic nerve from an untreated, herniated disc (years ago), Spina Bifida Oculta (complete with an arthritic spinal curvature), and (now) waiting for my remaining arthritic hip to be 'bad enough' for surgery, makes exercise (or even being vertical) a tad difficult.....? 😬

I would welcome a (free) online consult from you - any suggestions welcome... 😊

P.S. I'm a geriatric 65 year old former Counsellor, with a wacky sense of humour that keeps me going...! 😂

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Geri at 65? do not be silly you are a spring chicken, and have a lovely sense of humour. So very sad that you have all these things going on and to top it all lymphoedema. Would not want anyone to have this, well maybe the baddies.

Fingers x that clinic went better??? xxxx

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Hi Completely.

Spring chicken??? I'm just a broody old hen now! But thanks for the compliment... 🐔 😂 xx

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Hi,i know and understand your problem very well as i have the same muffin-tops on both my legs.My new lymph nurse noticed mine and without question measured me up for farrow wraps specially for above the knees.You may need the same.

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Hi Galtyboi.

Thankyou. Unfortunately, I have to have closed-toe compressions (Jobst - like cardboard!), because my toes are affected as well, so I don't know if the wraps would be suitable, although they look much easier to put on...? Maybe compressions below knee, and wraps above?

When I get to see my nurse (it will only be the 3rd time out of 5 visits that I've actually been seen by her), I now know what questions to ask, thanks to this site! It really is important that we share info, as most people never come into contact with any of the products in 'normal' life, and is more complicated than it first appears? But I'll leave the ultimate choice to my nurse, as she knows what I need?

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A great way to address knee and thigh swelling when lymph has crept above the below knee stockings is to have an overlapping 'tube' of compression. So you wear the below knees, then over the top, starting about mid calf you have another stocking (basically with no foot piece) that finishes at the top of the thigh with a silicone grip top. They are easier to get on than thigh length stockings and will often be more stable on a large leg.

They have to be made to measure in flat knit material. An experienced practitioner will know how to measure and order such garments.

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Hi Whitesugar.

I received a call from my nurse today, asking if I can attend an earlier (dated), yet later (timed) appointment, as I requested? So my new appointment is on 13th. November at 2pm, rather than 15th at 08.30am!

I discussed my 'new' (duplicated) stocking prescription - citing recommendations from this site - and asked to be re-assessed? She recommended that I do try full length stockings, as tights in flat-knit are notoriously difficult to put on? So I have relented to try full length stockings, and will be measured for them on 13th November.

If they don't work, then maybe your suggestion maybe the next option? Any suggestions are most gratefully received, so thankyou for yours.

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Didn't someone on here say that compression can be graduated?

Wish I'd known that when I asked for tights. I was told if I had difficulty putting syockings on , which I do so can't benefit from them regularly, then I would have even more difficulty putting on tights.

I have suffered and had to go without for decades. Had hoped that would be sorted now. If I have a right to have tights then I think I should have them. Uses too much energy all the arguing, though.

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My compressions are graduated. That's why they're made to measure and can't be passed-on to anyone else... - Jobst Elvarex Custom Fit.

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Surely there is no reason you can't have Thigh highs (which you will be now ) or tights ?

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I could have the tights, but she just wants me to see if I can manage with the long stockings (her recommendation). If I don't like them, I can have tights, but I thought they'll just be so-ooo damned hot, that I'll see if I can manage with the stockings, first?

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Thank you Whitesugar, didn't know these existed/ were an option.

I cannot manage my stockings. Compromised wrists & thumb plus severe neck condition. They also fall down as I have further problems from glue fumes.

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Looks like full leg lymphoedema to me. Can’t understand why you only have knee highs. Insist on seeing the proper person who can re-assess you. Good luck.

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Thanks Marianne.

I will.

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Make sure you do xxxxxx

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Yes Mum! 😂 xx

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I won't tell you again young lady, it is for your own good. xx

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Update:

I saw my (regular) nurse on Tuesday. She wanted me to have the below-knee socks, but I showed her the band around my calves, told her that I thought the socks were making them worse, and asked if I could have the full length stockings? She began to hum and ha about them, saying the stockings were only made with gripper-bands at the tops so may be unsuitable for me (I have to have the socks without), they are difficult to put on,.... So I continued to say that tights may be better, although I'd heard that they were even more difficult to put on? She quickly agreed that I could try the stockings, as "The made-to-measure, closed-toe (as I need) tights are over £200 a pair...!". I was quite shocked to hear my treatment being assessed on those terms, and wondered how many others are being treated purely on a cost-basis, rather than treatment-effective?!!

She gave me a (brand new) pair of stockings which, although open-toe and too light compression, will give me an idea of how well they suit me? I'm to ring her next week to tell her which I'd prefer, and will (hopefully) get an appointment to be measured for new stockings...? 🤞🤞

Since receiving my last pair of prescription socks: I missed my annual appointment as it was made MONTHS in advance, so it was another month before I could be seen... After 13 months, I begin to wonder how much longer it will take to be measured-for, and receive, my next customised hosiery....? Guesses, anyone....? 🙄

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