Hi, I haven't been on here for a few months now and anyone who can remember me will know that I have had big issues with trying to lose weight. Diagnosed a many years ago, have had yearly testing, have had thyroxine adjusted, up mostly , but once they put it down. And have been on 150 mcg daily for 2 years or so I suppose now.
Basically ever since diagnosis, I have found weight loss a real issue when anything I tried to do in the diet/exercise line failed drastically.
I would go up a pound, down a pound, up 2 lb, down 12 oz, felt terrible in myself with a general but relentless increase in weight. At my heaviest I was well over 15 stones.
Dr's just kept saying 'calories in have to be less than calories out Sandra, that is why you aren't losing weight!'
The last doctor who I approached early this year- when I was in Stoke, looking after my mother - told me the same thing, calories in have to be less than calories out (you stupid) woman, when are you going to learn! But also told me that my 1 hour a day walk (as fast as I could manage) must be 'pleasant' for me, but I was older now and didn't need too many calories. So the only exercise that I should be doing is one of these programmes where I workout like this - here I promise you, he got on an exercise bike in the surgery and peddled madly for 15 seconds, then reduced it to a slow crawl for a minute or so - and I was told to choose something like that rather than a slow meander around for an hour a day. And of course I also had to reduce drastically my calorie intake, stop eating cream cakes etc I suppose.
I have tried vegan, vegetarian, keto, starvation, (worked very well but unsustainable) . I was convinced it was thyroid related, but no one else thought so. Over the years I have had to cut it out of my mind for long periods, because it drastically affected my mental health, I have never been ready to be happy being huge. I was 10st 4lbs for most of my adult life, always knew what size clothes would fit me etc etc. Since thyroxine I have no idea what size of jeans I might be able to get into today! At my biggest, I wore men's jeans in size 44inch waist!!
I am 68 next month, I have degenerative spine, diagnosed at the age of 42 years as a 'grossly abnormal spine for a woman of my age'. There is no way that I could use an exercise bike. I have tried it in physio, along with traction, plaster jacket, injections into my spine etc etc. 1st time was ok, 2nd time I had to be taken home in an ambulance because I could not walk, never mind drive home. So I sat in that surgery with my mouth hanging open wondering why I had even bothered approaching him or any other GP for that matter.
There have been times when I have lost weight by dieting. 2011/12 I lost 3 stones, kept it off and bought a load of new clothes in early 2013, and promptly started to gain again! Same diet, same activity levels and medication.4
I could not find any way of controlling my weight long term.
My husband and I split up in 2018. At the beginning of 2019 for some reason I began to lose weight again, got down to 12st 5lbs and I was pretty happy with that but was pursuing more loss actively. Weight loss stopped again probably around July/Augustw last yearand gradually rose no matter what I did, or how little I ate. It was at this point when I was still away in Stoke that I went to see this GP. He also told me that I should be 'grazing' through the day by the way, and showed me his box of healthy snacks that he ate himself. I was just stunned I think.
You begin to lose the will to live don't you? I did certainly.
Anyway, back home again in North Wales on March 3rd this year. I was still gaining very slowly and weight was 13st 7 lbs by then.
Up a bit, down a bit still, generally rising. I had very few clothes that fit me, because as I had lost weight I had donated everything to charity shops, so I have a very limited wardrobe.
Corona arrived. My weight battle continued.
Then one morning I noticed that my weight see-saw seemed to have stopped. I was 13st 7lbs most days, strange, I usually went up or down by at least 1lb daily.
The next day,
28/4/20 I was still showing 13st 7lb 0oz.
I began to take more notice. I would weigh myself daily and record it as well as exactly what I was eating.
I had given up dairy when I was in Stoke, gave up my coffee tor tea, no milk, was eating vegan, no oil, occasional soy only, no high carbs bread, potato, rice etc but still hadn't lost weight. I had decided at the beginning of April that I would revert to a more 'normal' diet for me. Still no dairy, but occasional seafood, I even bought a small wholemeal loaf which sat in the freezer goading me whenever I opened the lid! How sad is that?
On 29/3/20 plus 4oz - 13.7.4oz
I began to weigh everything I put into my mouth and continue with my diary and meticulous recording of calories. Nothing unusual, I recently threw out many years worth of diaries which I have been keeping sometimes meticulously, sometimes less meticulously, since I have been trying to get back to a size that I can live with again.
30/4/20 - 6Not Weighed I was scared to death of getting on the scales!!
1/5/20 - 13.6.4oz And I began my graph, which I have used before - think of the graphs that we see daily in the daily coronavirus updates. If they are level and not climbing, those lines are good news. Mine had gone ever so slightly downwards.
2/5/20 13.6.0oz Again??????????????????
3/5/20 13.5.4oz ?????????????
Am I dreaming? If so I don't want to wake up! Going mad today, had a salad sandwich using my little loaf which had been taunting me for so long.
4/5/20 13.5.0 13stones and 5 lbs zero ounces!!!! OMG
Now I have been puzzling - why this is happening. The only thing different is that I am recording calories more carefully, between 800 - 1,100 max I set myself.
Then I went to look at my thyroxine. I have had various makes of thyroxine over the years and to be honest, I had wiped thyroxine out of my mind for many years. It was too upsetting to continually keep trying to work it all out, try this, try that. I seemed to be destined to be very large. Everyone, family, GP's, hospital, husband, everyone thought I was crackers, I suppose they still do.
I just took the tablets and tried to find something else to think about, to fill my mind with.
I looked at my thyroxine and it is a new one on me. It is Accord. I don't ever remember taking Accord before. That doesn't necessarily mean that I have never used it before, but I didn't recognise the name of Accord.
The first thing I did - after I had written my weight down and filled in my graph of course - was to ring the Chemist and ask if they could please arrange for me to have Accord thyroxine only in future? I explained why.
I was told that it is difficult at the moment to be able to guarantee that I can have one particular make of any drug, because at the moment they had no control over what brands came in any way, but that they would save 2 months supply for me of the Accord thyroxine, which is all that they have left of that batch of thyroxine.
I know that Teva doesn't work well for everyone, I have heard the stories, but I never saw any change in my life when I had different brands of thyroxine regularly. I assumed that the brand didn't matter as far as I was concerned, I never noticed any difference. I never checked what brand I was using previously when I had had success in losing weight, it never occurred to me when I lost that 3 stones in 2012, or what I was taking in 2019 either!
How on earth am I going to carry on getting the Accord brand in future, if it does carry on and I really do seem to do well on it? Because I am not daft, I know that 3 or 4 swallows - ie days of losing - don't make a summer, I might be wrong, but I have had a weight lifted from my shoulders ever so slightly. And I have also eaten 2 small rounds of wholemeal bread for God's sake and still the graph line is showing a very satisfying, though very slow, decline!!!!
Happy days!!!!!!!!!
I hope you are all well and as pleased with life as I am today. Got to go & get gardening now everyone!
Written by
BrynGlas
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Accord is just Actavis! They have, at last, changed the branding (Accord-UK took over the but of Actavis that operates in Barnstaple some time ago now.)
Good to read of a real positive!
UK Levothyroxine Tablets
➖➖➖➖➖➖➖➖➖➖➖➖➖➖
Last updated 30/04/2020.
This is a list of currently marketed levothyroxine tablets in the UK.
Please note that re-branding (whether by a manufacturer or as an ‘own label supplier’ - which has happened with several products) does not mean any change to formulation.
🔹 Advanz – branded both “Mercury Pharma Levothyroxine” and “Mercury Pharma Eltroxin” which are identical (marketing authorisation holder)
🏭 Custom Pharmaceuticals Ltd. (manufacturer)
🥛 contains lactose
25 PL 12762/0016
50 PL 10972/0031
100 PL 10972/0032
—————————————————————
🔸 Almus – (an ‘own label supplier’ brand owned by Walgreen Boots Alliance – Boots pharmacies and Alliance distributor)
50 – This is repackaged Accord – formerly Actavis.
100 – This is repackaged Accord – formerly Actavis.
—————————————————————
🔹 Aristo – (marketing authorisation holder)
🏭 Aristo Pharma GmbH (manufacturer)
100 PL 40546-0159
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🔸 Northstar – (an ‘own label supplier’ brand owned by McKesson – Lloyds pharmacies and AAH distributor)
25 – This is repackaged Teva. ❗
50 – This is repackaged Accord – formerly Actavis. ❗
100 – This is repackaged Accord – formerly Actavis. ❗
—————————————————————
🔹 Teva – (marketing authorisation holder)
🏭 PLIVA Croatia Ltd (manufacturer)
12.5 PL 00289/1971
25 PL 00289/1972
50 PL 00289/0038
75 PL 00289/1973
100 PL 00289/0039
—————————————————————
🔹 Wockhardt – (marketing authorisation holder)
🏭 CP Pharmaceuticals Ltd (manufacturer)
🥛 contains lactose
25 PL 29831/0130
➖➖➖➖➖➖➖➖➖➖➖➖➖➖
🔹 – identifies marketing authorisation holder.
🔸 – identifies ‘own label supplier’ products.
🏭 – identifies manufacturers (where known).
❗ – Take particular note of the actual product which varies by dosage.
—————————————————————
Numbers refer to tablet dosages in micrograms.
Only products which definitely contain lactose are identified (🥛 contains lactose). Please check other products. Where products are ‘own label supplier’, check the marketing authorisation holder.
If there is anything inaccurate in this information, please let me know by Private Message:
This document is updated whenever I am aware of any changes or enhancements are needed. Please check the Last updated date. The current version is available as a PDF here:
Oh, you are all so good on here. Thank you helvella.
Any idea where I might be able to get the Accord brand if my chemist isn't able to source them regularly? He says that they have little control over what brands is supplied, especially at the moment.
I could have words with local Health Board - and they would quake in their shoes if I did that, because we have history between us about rubbish Neurologists here and I most definately won. I got funding for referral to the Walton Centre in Fazackerly for my epilepsy and ended up getting a satellite Walton Centre Clinic at Bangor Hospital here. The neurologist who was working in Bangor was well known as rubbish and I refused to see him when my epilepsy recurred many years ago. Thank God, Neurology treatment in North Wales suddenly got happy patients with a great Neurologist!!!
So I will do it, one way or another, I will do it, just hope it isn't a fluke. I don't think I could take more disappointment.
Actually waking up in the morning, stretching in my bed, putting a hand on my stomach and feeling something not quite as gross as normal, wanting to run into the bathroom and onto my scales is absolutely fabulous I can tell you. It is all coming back to me thank God.
So do you think that I could source them somehow directly if the chemist here can't get them for me? I know that he will try very hard for me, but whether he will get anywhere is another matter,
You have to remember that I am in North Wales, we are very much behind the times when it comes to medical progress. Can't access records digitally or anything else which is thought if as 'progressive' therefore must be completely alien!!
I do have a Boots in Caernarfon 30 mins away, but would have to ask surgery for Thyroxine to be prescribed separately, because I want to keep my pharmacy in the village open. Llyr took over from his dad Graham when he qualified about 8 years ago now and they are so helpful I don't want the village to lose him and his staff that would be my last resort.
I think we have "spoken" before. I am also in north Wales, on the coast.
I have had Accord - under the name of Actavis - for donkeys years, supplied by Rowlands Pharmacy and it's marked on my pharmacy record to only give me Actavis. The recent rebranding to Accord resulted in a little note attached to my medication bag by the pharmacist that Actavis has now changed to Accord, so they're on the ball there. In all the years I've been taking this brand I have never had a substitute.
I think the name AAH is on the van that delivers the medications to my pharmacy, they are the pharmacy wholesaler.
I'd just say two things about your weight.
1) It's not a good idea to weigh yourself every day. Our weight will vary on a daily basis by as much as one or two pounds, so you could get excited or despondent depending on what you see. I'd suggest you weigh yourself once a week (twice at the most) and for consistency I'd do it when you get up, naked or in your nightwear (same every time) before your shower/wash or whatever.
2) Have you ever had FT3 tested? Low T3 makes weight loss difficult, if not impossible. So you need TSH, FT4 and FT3 all tested at the same time. If your surgery wont do it, consider doing a private test, Medichecks do Thyroid Monitoring Test (current £41 which includes a Tracked24 return envelope) but they have regular special offers, and if not on offer you can use code THYROIDIUK for 10% discount.
Yes SeasideSusie, we are 'known' to each other on here, remember the row about me not being able to get my blood test results from a surgery I used in Stoke on Trent where I was staying while caring for my mother earlier this year? That was February.
I have finally got those results and need to post them asap I know
I do exactly that. I weigh myself naked first thing after the loo, and before anything to eat or drink, every day. If I am gaining I might miss a day or so, but generally every day.
I understand what you are saying about every day weighing, I understand the fluctuations etc, but it is how I have done it since about 1989 now. I am comfortable with it and understand the drawbacks, I will carry on doing it my way. Same as I say to people who say that I have to have breakfast every day - do as you like, but I will do things my way! Sorry.
Anyway I would be wondering all day what my scales might have told me! LoL And if I hadn't been weighing myself everyday I would not have noticed that my weight wasn't fluctuating like people on a seesaw! I can cope with normal fluctuation, it is the abnormal ones that I can't cope with.
Before I forget again, can anyone tell me the best thermometer to use these days?
I broke my last mercury one this year and have bought 2 different mercury free ones, but the highest temp in the Barnes test - in bed, before stirring, in arm pit, 10 mins basal temp - I can only get up to 36.1. In fact I would say that that is a generous result, really it is barely off the 36 degree mark.
And I was taught how to take a temperature when I was doing midwifery training aged 19 years! I don't trust these new thermometers.
Apparently not, fortunately for me. I did finally get those results greygoose, only in the last couple of weeks in fact, they were taken on February 18th if I remember rightly. I will post them asap, but I have been so down that I couldn't cope with thinking of all of that again.
I can't make out exactly what is what on them except that there were a couple of queries on there, one being cholesterol. Never had raised levels of that before but it didn't worry me because I had given up dairy anyway and rarely ate red meat when I was eating meat at all. Couldn't afford to! LoL No antibodies shown at all from the quick glance that I gave them.
I had a raised liver result in the previous test that I had had done only a couple of weeks previously, but that had gone down in the Feb 18th test as well.
I will post them asap and you can all tell me what's what after that. They may not be all shown, because I asked for everything, vitamins, full thyroid, diabetes, Hashimoto's you name it, I asked for it. But I do remember thinking that they didn't all appear to be there, but couldn't stand to think of challenging them again and asking what the hell was still going on, or even posting them on here. I do tend to want to forget about it when it all gets too much, not just health issues either.
I still have the NHS complaint going on, though it has been rightly put onto the back burner because of Corona.
The GP surgery say that if I had agreed to sign the release form I could have had my results there and then, which was a complete lie. Practice manager told me on the phone that even if I signed the form, (which I was very happy to do, I just wanted the opportunity to sign the damned form) that I would have to wait another 30 days to see the results anyway.
That was why I complained to the NHS, asked for telephone recordings of my phone calls to them about it, etc etc which I have heard no mention of still.
Anyway, I had had enough, decided to come home and forget about it for a while. I had been in Stoke for 90% of 2019 and constantly between November 9th & March 3rd this year and I couldn't take any more.
Then Covid came along with a vengeance and couldn't go back there if I wanted to. My brother in law came and stayed here for 4 weeks, arrived on the day that lock down was announced and went home 4 weeks later much against my advice, but he is a stubborn so and so and I am not a jailer! God, he was hard work, never stopped, got tons of stuff done for me, but I never had chance to draw breathe!
So I have got to get down to it all again, just need to gather ny wits again.
Sounds like you need a good rest! Also sounds like that surgery is being very evasive, and makes you wonder what they've got to hide. But, next time a doctor starts dishing out advice about diet etc., stop them in their tracks. Just say 'I never take advice on nutrition from a doctor because you do not study it in med school, and basically don't know any more about it than me - perhaps less!' Well, words to that effect, anyway. You wouldn't believe some of the 'advice' doctors have given me about losing weight! All you can do is sit and stare at them in disbelief.
I can't make out exactly what is what on them except that there were a couple of queries on there, one being cholesterol. Never had raised levels of that before but it didn't worry me because I had given up dairy anyway and rarely ate red meat when I was eating meat at all.
Cholesterol levels have nothing to do with diet. Been discussing that this morning:
The GP never discussed any if my test with me, it was a receptionist who told me that in the first place.
I might have known all that stuff about diet and cholesterol was wrong, everything is these days!
I am not going onto Statins - am I remembering rightly, it is statins that they give you for cholesterol isn't it?
Yes you are right, I do need a good rest, been looking after my mother for over a year more or less rarely was in my own home and now struggling to get my veggie garden back into commission for this year, all it grew last year was weeds! I love my vegetables.
And got the whole house upside down, desperately needs decorating, but that has to wait a while, garden first.
GPs tend not to like discussing blood test results with patients, because they're not really very good at understanding them, and the patient might ask awkward questions.
Yes, it's statins they've been brain-washed into giving you if your cholesterol is high.
You may not be converting the storage hormone T4 to the active hormone T3, you may need a change of dose or you may need the addition of T3....full results will help.
Thanks DD our posts passed in the ether so, I think that you will now be able to see that I am pretty sure that it can only be thyroid related.
Trying to tell GP's that, when they see an elderly very large person asking about weight loss in front of them, is another matter.
Basically that is all that they have been taught, so I can't blaim them exactly.
However I do object to them assuming that I have to be the only low thyroid patient who is stupid enough to sit on my backside all day eating cream cakes and watching tv, then go to his surgery and complain because I can't lose weight.
It has been this way since I was diagnosed over 23 years ago now and I have tried very hard to get to the bottom of the reason why I can't lose weight after trying everything and taking my thyroxine religiously, having my blood tests etc etc
I was thrilled to be diagnosed all of those years ago, look, I am going to be given a little white pill and I will get back to my normal size again!! Yipppeeee
It just never happened. Hopefully things might improve with the right little white pills! LoL
Been there.... lost over 2 stone recently once I was on the correct thyroid medication!
I felt like screaming every time I heard, "increase exercise and eat a healthy diet"
Did they ever diagnose Fibromyalgia or Chronic Fatigue Syndrome? Their go-to diagnoses when they run out of ideas!
The poor thyroid and nutrition education that medics receive is shocking. They watch their screens and forget about clinical evaluation. The decision makers have their heads stuck in the sand and leave us with poor diagnoses and treatments...I think they fear change!
It turned out that I have a complicated thyroid hormone problem that I would never have discovered without the first class guidance of experienced members here. I've had to learn a lot!
Sorry you have had such a rough trot....when it comes to nutrition and the thyroid I give GPs a wide berth now. Their advice and treatments left me barely able to function
I'm 74 so never too late to grab the reins.
Glad you have been tested....they will probably show low FT3 which GPs don't usually test now. T3 is usually the key to the mystery! Post the results and excellent help will come, I can vouch for that.
There is light at the end of the tunnel.....feet up for a bit.
I completely sympathise with you and feel frustrated at slim people who still believe that its calories in, calories out.
Before I was diagnosed last year I starved myself for 7 days, twice, in an effort to lose my steadily gaining weight and I could not understand how I managed to put weight on both times.
I was obviously slowly going Myxoedemic ( if there is such a word).
I put on 20 kgs. I have lost 15 kgs but in big jumps and 6 month long plateau’s in between, no matter what I did - once when I started Levo - once when I got up to 150mg - and once when I went on NDT and actually NDT is the only one that I am consistently losing a couple of 0.2 kgs a lot of days though I AM eating an icecream most days 😄 and not dieting now.
I have also gone Gluten/Dairy free.
I think its most important to maximise vits and minerals and think my efforts to starve myself will have made my deteriorating health worse. But I didnt know anything was wrong at the time. Or rather I knew I didnt feel well but my GP kept assuring me if was all in my mind 🤯
I also think some of my weight loss is muscle loss as I no way have the same body at the same weight.
So I think its like the experts on here say that you have to be on the right medication and right dose and maximise nutrients to help the bodies processes x
Thank you Michelle, nice to hear that someone else has had same problems, although I would not wish it on anyone not even my worst enemy.
I agree with you, I am sure that some sort of oedema is causing the weight gain problems.
I often feel uncomfortable and heavier somehow for some reason, nothing regular that I could put a cause down to, just now and then.
I also get the 'prickly boobs' feeling as in early pregnancy or pre menstrually. That is generally caused by, or relates to, having eaten high carbohydrates, one reason why I avoid them. White rice was the first thing that I noticed did that to me and I was only in my 30's then and definately not overweight, 10st 4 lbs every time I stood on a scale in those days.
I will interlock my fingers and sometimes cannot do that totally because of the 'podgey' finger, sometimes evident in my legs and ankles too.
I don't know what it is or why it happens but my GP thought I was insane the only time I ever told him about it.
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Why arent we all told at diagnosis to try going dairy free or at least when we see an Endocrinologist as they must know about this as this research was published in their Endocrinology mag.
I know I have always had a senstive stomach and sick easily at least once a month and feel nauseous most mornings.
Been Dairy and Gluten free for 5 months now and definitely my loose bowels of many years are much better but could be that I’m now on Thyroid replacement or could be that I’m on a Zinc supplement as found to be low.
Anyway not enough investigations are done, full stop, to get to the route cause of a disease for most people x
I have never been referred to an Endo, I have always been told here that there was no need for a referral.
Funnily enough, I have been sick a couple of mornings lately. I have Earl Grey, black, but not strong. T bag in cup, boiled water on top, stir, take out the T bag, drink. If there is any hint of tannin in the tea I can't take it and throw up.
I do the same with red wine, discovered that years ago. Again it seems to be that tannin taste that makes me sick. I never did enjoy red wine anyway, so that was no loss
Wales doesn't have a digital platform for access to records though, here in North Wales we don't anyway. Dark Ages Wales!
But my argument was with an English GP Practice, not in Wales. I was down as a temporary patient, although they kept questioning me about how long I was going to be staying there. I even said that if it was going to be a problem to them ie me staying as temporary status, I was happy to be a permanent patient until I came back to home in Wales.
They asked how long I was intending stay (definately snootily that was!) and I asked if they had any idea when any of their geriatric patients might pop their clogs. Because unless someone could tell me when my mother was going to fall off her perch, I could not tell them how long I would be staying in Stoke!
I was asked that on the Tuesday when I was waiting to have blood taken. I was told that it wasn't necessary for me to become a permanent patient - too much work to do for that then?
I knew that I had a legal right to my results and quoted it to them, but it didn't make any difference to that practice, they were not going to allow me to have them. Jobsworth Practice Staff, especially the Practice Manager were to blame I am sure. They had more excuses than enough.
'I can't allow you to access your results until the Dr has seen them.' Blood had been drawn the Tuesday before and I was told to contact the surgery Friday afternoon between 2 -3 pm I think it was. I had had to arrange care for my mother while I went to get my results, all for nothing. Friday afternoon traffic, school kids, early home for many trades etc, the roads were choc a blok!
Following Monday I rang, the excuse was that the GP had still not looked at my results and so receptionist could not reveal them.
Then I was told on either Tuesday or Wednesday that my results were ok except for cholesterol. When I asked for a copy I was told that the GP had to give permission and wasn't available at that time.
Either on Tuesday or Wednesday I had been at the hospital all day with my mother and I couldn't speak to them within that 1 hour slot in the afternoon,
On Thursday when I finally spoke to the Practice Manager, who told me that the surgery was closing in 30 minutes or something like that, in any case I had to sign a form to give them the permission to give me my own blood results and that I could not access them the same day anyway, it would take 30 days to get a print out.
That was when I gave up. I told her that I had fought a surgery befire and I would fight them again. Write everything down in note form & swotted up on complaining to NHS England re: GP Practice procedure. Came home a week or so later and got down to complaining.
Now here we are today.
What a waste of time it was. I was pretty cream crackered.
Got mother fixed up with better carers and came home.
She isn't happy that I have abandoned her and won't take my phone calls.
I can't go back if I wanted to, though I dread that idea. I even had to take my cat with me, he was shell shocked when we came home, God knows how he would cope leaving home again!
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Sorry.
Thyroid cancer
Underactive Thyroid Gland 
Standoff Between GP & Pharmacist
