HypothyroidMom

I am officially a Hypothyroid Mom, probably one of older ones now. It was a long time ago = 5 years! (feels like a lifetime)… This is an old post I wrote but felt it had to be posted somewhere in case anyone is out there looking for help..

Back in 2012 I was diagnosed with Hyperthyroidism because I had Graves Disease! It was a shock initially, a pretty crappy Autoimmune Disease, apparently common in females who’s birth mothers had Type 1 Diabetes – I was text book diagnosis. Autoimmune Deficiencies are rampant in my bloodline – pretty harsh reality! It took a long time from diagnosis to being healed. Eventually I had a full Thyrectomy (thyroid removal), but pre-op I was treated with masses of medications in order to control my thyroid and slow own my heartrate. I blogged about it on a blog I set up at the time and have since deactivated as I never continued with my posts. But I wanted to pull it here because if my story would help anyone I would be honoured to do that. It was a difficult journey – and LONG!

I was thyrotoxicosis (hyperthyroidism) and suffering quite severely with Graves Disease. I was taking 12 thyroid tablets a day to reduce the speed of my thyroid and attempt to control the growing (huge) goitre on my neck and nodules too (propythyroucical), I was taking 4 Propanol (beta blockers) a day plus 4 anti-itching pills (chlorephenamine) too as my skin literally crawled with the itch – yuk! Very sore because I haven’t much will-power so I did like a good scratch (naughty me). I learnt to keep my nails very short so I stopped ripping my skin and causing burns & bruising from scratching so much. I was applying steroid eye drops 3-4 times a day and saline drops every hour or so to help with the grittiness in my eyes and constant watering, I had a steroid conditioning glue at night so my eyes would stay closed and rest and I had some humongous Sty’s that I’d never experienced before – HOW painful??!!!! That was standard, on top of the above I was taking 2 penicillin a day and many painkillers for the varying aches and pains caused from pressure of the goitre in my head, shoulders, eyes and neck and general over-worked body that my overactive thyroid was causing.

 

 

I was a wreck, a 30 year old wife and mum and a complete burden to my family. I was not myself at all, doped up 90% of the time (or asleep – but never asleep when I wanted to be WOE). My GP prescribed me Codeine Phosphate, Paracetamol, Tramadol, Diclofenac, Lanzaprozol (to keep my stomach from giving up on me), Naproxen and once the Cluster Headaches started Immigran (amazing meds). I have no idea how it would feel right now to take such strong tablets (although staggered they were taken in sync) but at the time I could not get enough and would count down the hours to when I could next take a hit, sometimes I’d sit rocking in pain counting to ten 60 times so I knew I was a minute closer, other times I cried and mainly (at night) I’d pace around the house with a duster in my hand or my phone reading random peoples blogs on how they coped (it seems quite common that we don’t cope that well with this condition) – completely psychotic if you think about it but oh yeah – the pain was THAT bad! I don’t believe I was addicted to the meds but dependent – 100% indisputably – dependant!
 
I continued with my monthly blood tests and I saw my surgeon in the November (I was diagnosed the previous spring), who had put the camera into my nose and down into my throat to check out how dominant the goiters were on the inside, were the overtaking my vocal chords, calcium glands and were they compromising my wind pipes (I was struggling to breathe on a night so had to lay on my side all the time because if I tried to lay flat the goiter closed off my pipe). My voice however hadn’t changed much so he was happy the vocal chords we’re pretty safe (and obviously a priority). I had a CT Scan: very impressed with the capabilities of that! 
As a HYPER thyroid patient being HOT is like throwing a vampire out in the sun – we literally melt down, the heat that the injections they use to light up your internals for the scanner is excruciating and it feels like you’re weeing yourself, I would imagine to a ‘normal’ or even ‘HYPOthyroid’ patient the heat and sensations of ‘letting go’ would be quite cool but I just got really agitated to the point I was about to sit up and leave (after convincing myself a number of times to persevere – it would be over soon) I just felt like I was going to overheat and set on fire and then poof – all sensations disappeared (as quick as breathing in) and I was back to normal and aware of the annoying banging that the machine makes. The CT scanner is like a Donut, a round circle your bed is reversed into and it is able to take 3d and 4d photos of your insides which is extremely handy for trillions of reasons like having your Thyroid removed because then the surgeons don’t have to hang around identifying everything inside once you’re on the operating table and under the knife, they already have an idea and a plan of action and the less time they’re inside you, the less bleeding, complications, bruising, risk of scarring and faster healing times – winner winner!
 
So back to the surgeon, Mr Watson – amazing gentleman – love him! He was extremely helpful and empathetic and so very clear and concise in his people skills. He would have liked to have removed my thyroid ASAP and the next available date was the 18th December but he didn’t find it appropriate for me with having 2 little boys, my husband and the family and Christmas within the same week, he wanted me to get through Christmas for them and then take the time after Christmas for them to be there for me so we arranged the date for the 22nd January, the week before my 31st birthday (27th). I had an aim, I was so super relieved – everything was fitting into place I only had to get through Christmas and I would be fixed and then I had a week to get in, have the op and get home to celebrate my birthday with my boys, it was THAT simple – if only eh?!!!
I had done my research into having my Thyroid removed from the second my Endocrinologist (Mr Kang) had hinted at it and I knew I wanted to keep part of my Thyroid to not become dependent on Thyroxin (a synthetic version of the thyroid hormone essential to the body’s daily functioning management). I found this link useful:
http://thyroid.about.com/od/thyroiddrugstreatments/a/thyroidsurgery.htm  and read many blogs that you can search here: 
Don’t be frightened that the main search to find you on Google is related to Thyroid Cancer, no one is trying to tell you anything (unless those words come from your doctors mouth) It just seems to be rather common (according to Google).
So, I was prepared I knew I wanted to keep some of my thyroid and was completely shot down by both consultant and surgeon No, No, NO! Totally non-negotiable for many reasons:
1.    My goiter was far too big
2.    It would not cure the Graves Disease
3.    My eyes would not heal with the thyroid remaining present
4.    The Thyroid can grow back
5.    The Hyperthyroidism will return within years of the surgery meaning I will have to go back under the knife for the job finishing off
6.    It’s an olden day myth; the whole thyroid is removed 100% of the time these days except in extreme circumstances to be discussed at the time.
7.    Thyroxin: Synthetic Thyroid Hormone is 100% as effective as the hormone produced by the body so the impact is minimal
8.    It’s actually safer for the patient for the whole thyroid to be removed due to how intricate and fiddly of an operation it is
9.    So on and so on, you can learn more on the debate here: http://www.youtube.com/watch?v=Xxe7f5OruF0
Remember: Each patient is different, you must discuss this in detail with your specialist and surgeon, have your homework to hand – its your body, your decision, it should be your interest and priority. Work with them, they will appreciate your involvement and opinion – trust me!
Cluster Headaches: have you heard of these? OH MY GOODNESS, if you haven’t heard of cluster headaches you should have a quick peek here:
I can promise you the WIKI-description is NOT an exaggeration I really did not believe (after having 2 children and various broken bones etc) that it was possible for the human body to experience such pain without dying. The pains started so abruptly, the headaches started and then never seemed to end, they merged into 1 and then the level of discomfort increased rapidly to a point I wondered if I would be able to keep my own head supported at times – it seemed impossible. The Dr’s ran various tests and it was diagnosed that the goiter was adding extra pressure to nerves and muscles in my neck and in turn my skull and then causing these migraines – great!
 
 
 Some days I didn’t leave my bed and my little boys bless them were saints, they played and ate sandwiches and cucumber until daddy got home and laid with me in bed watching films just because I was incapable of nothing else. We would snuggle under the covers and watch Ben10 and Friends and loads of Disney movies, they loved it really but I longed to get out of bed and play with them, I just wasn’t physically able. But, I had a goal, I only had to get through to the 22nd January and everyone kept reminding me of that so I sauntered slowly and painfully on towards my goal…
I was prescribed Radioactive Iodine to DRINK diluted with milk 3 times a day for a full 10 days prior to my surgery, the logic behind this is that the Iodine kills off the Thyroid and the bloodstream gushing through it which is obviously more heightened with the thyroid being so powerfully overactive and the goiters being so enlarged so the Iodine reduces this allowing surgery to run smoother plus I was classed as high risk of requiring blood during surgery so as well as having blood on standby for transfusion this pre-medication would give me a better chance of a less complicated surgery. 

It wasn’t so bad, I have drank worse but don’t get me wrong it was still bad. It tasted like soil and iron and coal and all things really dirty and it left a really crappy sticky layer in my mouth that just hung around removing your appetite and making everything that followed taste like milky Iodine. It was effective, almost as if you could feel it working at the thyroid and over the next few days I grew more and more lethargic, extremely lethargic in fact and life became very, very difficult. Eating was a chore, cooking didn’t happen much (not to my usual ‘Domestic Goddess’ standard anyway), we ate lots of pasta, frozen prawns, peas and tinned beans (the boys loved it). Sleep became my friend again, I was sometimes in bed by 8pm, dragging myself up at 7am, back to sleep at 9.30am and up at 2.30pm for the school run and even then it was forced, I had nearly 12 months of sleep to catch up on or so it seemed – all really surreal until I realised (was told by my GP) that this is what is expected of the Iodine. ‘It’s killing the thyroid, these symptoms are what a person with an under active thyroid would start to feel initially’.. How very clever! My surgeon just blew me away – who knew?

He did, he knew exactly what he was doing (obviously), kill the thyroid off, reduce the blood flow: less bleeding, smoother surgery, quicker healing, less bruising bla bla – I was very, very  impressed, reassured and relieved. I felt like at last something that I was pumping into my body was actually having an effect rather than popping 12 pills 4 times a day plus painkillers, eyedrops and nasal sprays and not feeling much difference (more worse than better) for the past 12 months. 
 
This was a good thing. I drank my Iodine like a little angel even though it’s terrible at staining EVERYTHING especially white work surfaces and fingers (grrrr)!
 

Due to unforeseen circumstances (my surgeon slipped in the snow and was unable to operate on me, then he contracted the Norovirus so I was delayed again). Eventually, on the 12th February I had to be at Doncaster Royal Infirmary theatre admissions for 7.30am after fasting for 18hours and cleansing in medical wash to ensure I hadn’t got nor would I pass on MRSA (the superbug) in their care. Talk about a sleepless night, I waved the kiddies off at around 7pm the night before and that was when the nerves kicked in, up until that point I had been there before and then the procedure was cancelled (TWICE) so part of me a) expected another cancellation and b) hoped for a cancellation. Oh yeah, the nerves had totally kicked in! I hadn’t even considered the pain post-op or recovery; I couldn’t see past being put to sleep. I was convinced I wouldn’t wake up from my surgery or would bleed out and something would go wrong whilst I was under the anaesthetic. Likewise I was convinced something would happen to one of the kids whilst I was asleep and they’d need to wake me up to go and see to them (yep, I was on the brink of delusional). I kept reminding my husband to make sure if anything happened he’d have to ring up and have them bring me round to help him and then I could go back in another time; ‘ok love’ was his then standard response, he’d gotten past ‘stop being silly’ by this point. I’d even toyed with the idea of writing my boys a letter telling them how much I loved them, what things we did together, those words that go unspoken and how proud I was of them etc ‘just incase’ I didn’t ever recover – something to remember me by – I was well gone! I was super convinced I might not get through the surgery, I guess it was a combination of the illness and what it does to you, the medication and being so out of it combined with genuine nerves and fear of the unknown.

On a positive; because I couldn’t sleep I ran myself one of the nicest hottest bubbliest baths I’ve ever had in my life, it smelt divine ‘a little bit of everything’ went in – might as well use it up if I wasn’t ever going to get the chance again eh? So I spent hours in the bath re-heating it whenever the steam slowed down. It was actually far too hot but it felt amazing! I scrubbed, exfoliated, polished, waxed, re-exfoliated, re-polished, washed, conditioned, cleansed, treated, used a few different hair and face masks, I pampered myself to the point of boredom (and that takes A LOT) next thing I knew it was 5.30am! Time to get out, dry my hair and pack my toothbrush eeeek!! I smelt amazing, my skin looked like I was heading to a catwalk never mind DRI but at least the surgeons would notice my freshly pampered face, manicured nails and pedicure feet, even though I couldn’t apply polish – you could tell they were well cared for – I’m far from vain too but these little things seemed like the most important in the world at the time. I blow dried my hair to the point I looked like I was heading to a wedding, the height and volume I achieved made me proud (I haven’t managed it since lol). I moisturised and moisturised again, packed up my toothbrush and then my husband handed me a cuppa – THANKS! I poured it away (I was fasting remember – nill by mouth) OOPS! I did however still have to take all my medication that morning so sipped an ince of water which had been ok’d prior by the pre-assessment team.

My Dad took me to the hospital, with Greg (our car was at that point off the road too – I HATE cars!!).  I looked and felt like I was heading to the airport with my Cath Kidston matching luggage and my hair and immaculately styled, skin cleansed and body pampered. I bet people were secretly giggling and chatting about me behind my back but I was really quite convinced if I’m gonna go, I might as well go looking and smelling good (I’d even bought lacy new underwear) LOL !!!!

Theatre admissions is a strange dingy little poky hole, it’s basically like a holding cell where you go and have to sit waiting to be called to be taken to get changed for theatre. It really did feel like waiting to be hung, I had pearls of sweat permanently lining my top lip, it was excruciatingly hot in there – not a great place or a great atmosphere, plus the personal next to me kept ‘nipping art for a fag’ and sharing her story extremely loudly with everyone who she rang on her mobile phone – very annoying! However within 10mins of being checked-in by a lovely receptionist and sitting trying to resist biting my nails I was called into a room by my surgeons registrar, he wanted to have a feel and a poke around the lumps and goitre and check I was ok and aware of what the procedure entailed, he advised me of the possible after-effects that aren’t so nice (adding fuel to the fire raging away inside my stomach chest), that I could lose my voice and might need to go to intensive care and due to the nature of the surgery, location and size of the goitre I could loose my calcium glands too – bit too late to back out now? I was advised there would be a few extra doctors and junior surgeons in on my operation and was asked if this was ‘ok with me’ apparently as my condition is quite rare with the goitre being so enlarged and the hyperthyroidism being so uncontrollable it was a great example for some of the other doctors to be in on, there would be My surgeon Mr Watson, his 2nd in command, 2 other junior surgeons and 2 registrars PLUS my anaesthetist and the theatre nursing team – bit of a party or what?! If only I felt reassured by security in numbers…  Finally he asked if I had any questions to which I had only 1, what the chances of me not waking up are? After nearly pulling his jaw up off the floor and trying his best NOT to laugh he advised me he hadn’t lost a patient yet, he said the chances of me not waking up are slim to nonexistent and I should try to relax I was already and had been for the past 24 hours) shaking like a leaf and trying to suppress my nervous giggle (very annoying). He offered me and my husband reassurance, said later today it would all be over and I would be very relieved and much, much better. PHEW? No, not phew! I didn’t even get chance to go sit back down next to the annoyingly loud smoker before I was called into another room by a nurse who wanted to tag me up, take my blood pressure, temperature, weight, height and ask me tons of questions that had already been asked (I’m sure they do it to annoy you?). I was trembling by this point, the nurse could see and she asked if I was frightened, I was on the verge of tears even a few had snook out onto my cheeks.  As if on cue my anaesthetist a tiny little dark haired lady with freezing cold hands (that’s all I remember of her) drifted into the room. I was given some paracetamol, apparently the quicker they get it into your system the stronger it is to fight your temperature fluctuations during sedation? She asked if I was nervous, I told her it was the only thing I could think about, I was so frightened of actually being put to sleep that I didn’t even care if I woke up anymore, just the thought of being on the bed with the feeling of anaesthetic taking over and the losing control was sending me over the edge. I really needed something to calm me down, my blood pressure was a little increased and I was working so hard on taking deep breaths that I was feeling a little light headed already (totally wussing out!). It was in fact too late to give me a pre-med, it was 8.10/8.15 and she wanted me in theatre for 8.30am but she assured me the first thing she would do when I got in there was to give me something to relax me, she said to stop worrying now it was a wasted worry, I would be absolutely fine and to enjoy the ride, she said I will give you something really nice, make you feel really nice and floaty, you won’t care about loosing control then so what the hell – might as well float away with the fairies and enjoy it, I was way past the point of having a choice, this was happening – in 15 minutes!!!!!

I was gowned up, I remember having a peek in the mirror before I left my cubicle, I wasn’t sure when I was next going to be able to look in a mirror and not be frightened / freak myself out with the wound and drains etc, all I remember thinking was how nice my hair looked and what a good job I’d done (sometimes it’s fun to be a dizzy blonde – the little things keep us occupied).

 

I donned my new Cath Kidston slippers and the most fluffiest flowery Per Una dressing gown (treats from my family awww) and along with my NHS issue anti-DVT stockings I handed my belongings to my husband who instead of looking anything like concerned, to me looked bored (and tired), I got cross. My surgeon was stood waiting for me before I got chance to tell Greg off for not being attentive enough and 2 theatre nurses literally appeared from nowhere as if to carry me off to a padded cell (Nurse B looked just like the kind of nurse who had done that before too, Nurse A donned a reassuring smile that all was going to be ok – I didn’t know at that point which was worse?). Mr Watson introduced himself, said he’d see me in 5 minutes he just wanted to offer a little reassurance and let me know I was in very safe hands before leaving me in the capable care of 2 theatre nurses. This was it; there was no where I could escape to even if I wanted to in my slippers and dressing gown. I was also frustrated because I’d bought a nice new lacy, clean, comfy but pretty bra and I wasn’t allowed to wear a bra for theatre – tut! Still, at least I had my pants on and not those crummy NHS paper numbers they used to give you (I had those when I was taken to theatre to have my children – yuk). Don’t get me wrong I know this was no time for fashion and nice things but still, my Mum always taught me to make an effort at ALL times and if this was the last thing I was ever going to wear I wanted it to be nice.

BUMMER, there wasn’t even time to be cross with Greg or tell him off for being slack and inattentive and looking like he was going to fall asleep when all I could think about was a) if I could/still had time to escape or b)if this was the last time I was ever going to see him.  I managed to wave to him and give him a quick goodbye kiss and then the nurses scooped me up as if we had a train to catch and we were marching down to theatre chatting generally about how dingy it was but that it was ok because it was being renovated and how nice my hair looked. I told them I thought people would think I was daft but if I really do wake up after this I don’t think I’m going to be able to wash it for a few days so at least I know it’s clean and in a decent state (I do ramble a lot when I’m nervous, complete verbal dihorrea syndrome) I could tell they were humouring me but it was nice to generalise and not have to repeat my name, address and date of birth for the millionth time that morning.

The theatres reminded me of a reeeallllly old butchers shop, the floors with those old green square tiles and the plastic sheeting doors and dim yellow lighting – definitely somewhere you wouldn’t want to have to be in a power cut or worse – zombie apocalypse. It looked like something off Hostel (have you seen that film? Ewww!) There were what seemed like hundreds of theatre rooms all off this long corridor, how do you find the right one? I was so glad people were around, it was pretty spooky! Definitely more than a little eerie!

I had to repeat my name and date of birth AND address to be allowed in, I considered getting it wrong and making a run for it but I could tell Nurse A wouldn’t have taken any nonsense, Nurse B however I could have easily escaped from (all these things and more crossed my mind on the 3 minute walk to theatre), I was in complete survival mode, my little boys would have been proud of me J … I succumbed to the inevitable and kicked off my slippers and dressing gown as I was told, Nurse B scooped them into a big green bag and assured me she would keep them safe (yeah right!) Nurse A was hooking me up to heart monitors and prodding n poking me here there n everywhere, her hands were freezing cold too. The flitty little smiley face reappeared then – the lady with the fairy drugs – Fab! It took her less than 2 minutes she’d got me laid down (I don’t think she even asked me to she just moved her hand and I did as she wanted – NLP at its best), the cannular was in my hand. She asked me if I had any pets and I told her I had a little dog called Lincoln, as I was telling her and starting on another nervous bout of verbal dihorrea she said I’d start to feel a little light headed and POOF I was gone. I didn’t even get to feel light headed I was straight out, she either gave me too much, I went quicker and easier than she expected or she just said it so I wouldn’t worry or fight it and it did what she wanted it to do. Either way she was right, she did exactly what she promised me, all that worrying and panicking and it was all for nothing, aren’t I a bit daft? Would I be the same if I ever had to go to theatre again? Of course, it’s a natural reaction, it’s very scary and worrying and all those horrible things but really, it’s quite cool, whatever drugs she used were amazing – out like a light!

The next thing I know I was waking up – HURRAY I woke UP!

It took me a few minutes for my life to come flooding back, I had been asleep for a very long time and everything needed to restart, the room seemed HUGE, it was dark and it was sooooo hot and I couldn’t work out where I was but I was awake – PHEW! I’m awake!! THEN the pain hit WOW the pain hit and it grew and grew and grew! I didn’t expect THAT!!! PAIN!!!! OWWWWCH!!!!

Apparently it was 5pm, I had been in theatre ALL day, 7 hours and I’d been an hour in recovery before I came round I wasn’t in the best of states. I was incredibly hot, my temperature wouldn’t drop below 42degrees, the nurses who were looking after me were doing runs with cold flannels to try and cool my burning skin NOW I know why they get the paracetamols inside you as quick as they can, the temperature is a huge issue!

I couldn’t speak or move, I had lots of machines hanging around and I was in and out of sleep but I knew something was squashing my legs and something was holding my head down and my eyes wouldn’t stay open but I was mainly conscious it was such a strange feeling. Most of all the pain was overpowering, goodness me the pain was sooooooooo bad. I hadn’t even imagined waking up never mind what it would feel like but I know I could never have imagined it to hurt like this OWWWCH!! Surgery seriously underestimated – error!

I was being loaded with drugs and pain relief and nurses were coming and going, the pain didn’t seem to let up and you have to remember I’d built up quite a strong pain threshold the few months prior due to the cluster headaches but this was on another level, whilst I’d been exposed to high intensity pain, I’d also built up an immunity to high level pain relief so other than knock me back out under sedation, there was only so much they could do to keep me comfortable, the rest I had to grit my teeth and bear it and grit my teeth I did – Not nice whatsoever! I had taken on maximum morphene, a level that right now would probably knock me out for a week but at that point never took the edge off the pain and the heat, the heat was overpowering it felt like I was on fire, the nurses hands and the flannels were like little particles of icy heaven aaaahhhhhh! I cant decide if I did get more comfortable or just got more and more frustrated because 2 hours later I was still waiting for Greg to appear, but they wouldn’t let him in, I had to be comfortable and stable before he was allowed to see me, poor thing had been sat waiting for me for over 9hours. I said I was more comfortable, I must have been too, or readjusted to manage the pain better because I really wanted to see him although I couldn’t speak I just had to nod and smile and point, I was worried my voice wouldn’t work but that really was the last of my worries. I had also learnt that if I took a breath in and out through my nose I got a huge hit of remaining anaesthetic and it knocked me out for a few minutes so when the pain got really bad I’d sniff some pain relief (weird but it works – you must try that) I’d definitely taken on a lot of anaesthetic, the length of the surgery had aided that too, it took 3 days for the anaesthetic to leave my system fully, it did feel nice though that first day to keep breathing it in, I think it helped, even if it was a placebo I’ll take it..

To say I was emotional as a result of the anaesthetic was an understatement I think I told anyone who would listen how much I loved them over the following days, I’m not sure why and always I had a tear in my eye.

Later the first evening I was moved onto a surgical ward, out of theatre recovery and onto a standard nurse managed ward, I couldn’t tell you much about it I was laid flat and not to be moved (I don’t think I could have if I’d have wanted to – which I had no intention of whatsoever).

 

My legs were wired up to this really cool machine that had some electronic stockings attached to them that kept pumping my legs squeezing them, they kept my circulation flowing though the day as I’d been asleep for the majority of it and through the following day and night too because I was to remain in bed.

I had done extremely well considering, I hadn’t require any of the blood for transfusion that was ordered for me (well done me), I had managed to keep 2 out of 4 Calcium glands and I only had 1 drain fitted to manage blood loss so all in all the surgery was a huge success Hurray!

The first night was the worst, I couldn’t move and I couldn’t really speak but that didn’t mean the pain was any less, I laid staring at the ceiling trying to count myself a minute, 2 minutes and so on attempting to gauge 2 hours so I know I could have a new lot of pain relief squirted into my mouth (swallowing still wasn’t easy but I had to keep trying). Trying to count such high levels on that much pain relief is impossible, what seemed like hours was infact minutes and the nurses kept popping in to check on me bless them, they were incredible, the care and assistance made me even more emotional!

I didn’t eat anything for 3 days and didn’t drink anything other than sips of morphene and water to take medication with for 2 days but on day 2 I got up and got dressed with the help of a really lovely nurse who helped me get a quick wash from the surgery blood and smells and put clean underwear on, it really did help me to feel a little better but I still couldn’t face brushing my teeth, my temperature was extremely high and the pain levels were still non-manageable – not good! I had seriously underestimated this surgery and just how difficult the recovery is especially the immediate recover – owch! I’d also given my drain pipe a huge tug and that was a shock too OWCH!

My surgeon popped to see me and was smiling to himself when I told him how I felt, he advised me it was uncanny exactly how many people underestimate this procedure and expect it to be a simple tonsillectomy type pain (I’d have taken a c-section pain over this any day). I was also advised that the size of my goitre was incredible, the surgeon used the word ‘humongous’. A standard ‘normal&healthy’ thyroid should be the size of a walnut; mine was the size of 2 human fists – not much difference then. Although I still didn’t feel ready to look in the mirror (fear of the unknown? I didn’t want it to hurt more if it looked worse than I imagined so my own naive bubble seemed like a better place to stay) my family who came to visit me were amazed at the size difference in my neck and the look of the scar too. My neck had disappeared; it didn’t look like it could hold my head up anymore.

They don’t dress the wound, it’s sprayed with a clear antiseptic dressing and left so they can see it at all times for leaking, healing and all other purposes – very strange but very, very clever the scar looks fab!

Night 2 was a difficult night because I’d forced myself out of bed all day trying to remove the anaesthetic from my system as the last thing I wanted onto of everything else was a chest infection from left over meds causing additional pain and illness – imagine needing to cough? OWWCH!! But that mean when I got back into bed I couldn’t get comfy, I couldn’t relax my shoulders because it felt like my head was going to fall off so I was sat / laid constantly with a turtle neck and my shoulders wedged up high and I couldn’t rest my head back because the pain in any slight stretching was excruciating PLUS the drain site was uncomfortable and I’d tugged it a few times trying to get comfortable so it was an extremely restless and painful night – lots of morphene required!

I’d had a tingly nose, hands and feet since my surgery but hadn’t really had chance to notice it properly, plus I was quite ‘wired’ with all the medication and still attempting to control my pain so I could at least think about something else for a while other than how much it STILL hurt, but on the morning of day 3 this incredible feeling overtook my body I felt like I was leaving my body behind the tingling and pins and needles were so intense I am struggling to put it onto words to explain. I couldn’t look at my hands because my brain wouldn’t accept that they were mine. Within seconds doctors and nurses surrounded me and a drip was inserted, literally less that 5 minutes and I wasn’t left alone for 1 second of it. Once I started to feel less tingly it was explained to me that I had gone onto calcium shock, my calcium glands still hadn’t recovered from the surgery and I wasn’t able to control my own calcium so my body had taken a bit of  hit. I was linked to a 24hr calcium infusion and to be tested daily looking for an increase back to a standard ‘safe’ level. Oh yes, I’m not the kind of person to do things by halves am I?!

http://en.wikipedia.org/wiki/Parathyroid_gland

http://thyroid.about.com/od/thyroiddrugstreatments/a/complications.htm

http://www.livestrong.com/article/338179-side-effects-of-calcium-shock/

I was a sight and half, drain in 1 hand, calcium drip in the other pushing along my bag of fluid linked to my arms attempting to get to the toilet, I really hit rock bottom that day. That day was also valentines day (14th February). Loads of people visited my including my little boys and as much as I really, really wanted to see them and chat to them a) I couldn’t really speak,  b) I couldn’t hold my head up c) the pain was increasing and d) I was too sad and tired and just generally not with it to even realise they were there. My baby boy wanted to go and find the person who’d ‘cracked my mummy’s neck’ and beat them up iron man style bless him and that made me smile and my husband had some flowers shipped to me which also made me smile but other than that I returned to my drug induced state staring out of the window – it snowed all day long! I also pleaded with the doctors to remove my drain but it was still collecting too much excess fluid but they did promise me they would check again the following day – hope – yay!

 

The next week merged into one long blurr, a sad, quiet, loooooong blurr. I did have my drain removed on Day 4 by a really incredible nurse who’d turned out to be one of my husband’s friends wives (it’s a small world we live in) and I know I was feeling a little better because all I could think about while she was removing it was how I was certain my breath would smell because I’d still not managed to brush my teeth (I made a mental note to brush my teeth by hook or by crook regardless of pain it was 4 days now!!). Once the drain was removed I instantly felt a little better, I think the fear of pulling on it and it hurting like it did on Day1 when I’d given it a very hard tug had haunted me and having that removed, for that split second I felt like doing a little jig, even my toes wiggled in delight!

I still couldn’t speak, my scar was starting to dry up and I’d even taken a look in the mirror – it looked incredible, compared to how I felt I looked like a different person, even my hair had stood the test of time! Temple Spa facial, Soap and Glory body wash, Dry Shampoo and tons of YSL Paris Perfume not to mention 3Xdifferent toothpastes and mouth wash, clean NHS standard issue stockings, freshly laundered pj’s (my husband was brilliant at keeping me in stock of clean pj’s when he visited) and I was back on the ward feeling a whole heap better, I even turned on my phone and checked into my facebook and twitter account and the messages I’d received from all my friends and family were so heart warming – THANK YOU all XXXX

 

I remained confined to the ward, my calcium levels were dangerously low and my heart was at risk if I didn’t improve so daily I was encouraged to nibble on egg omelettes, milk, hot chocolates, cheese, rice pudding and millions of calcium supplements – nothing worked. I was another 9 days before my calcium level reached a point where I was deemed ‘safe’ to leave the hospital. By that point I was pretty much comfortable, I was still in pain but after day 5-6 the pain was much more manageable on anti-inflammatory pills and an incredibly effective drug called ‘tramadol’ that really does make you itch but it really works alongside paracetamol at keeping that burning, tearing flame at bay – PHEW!

 

My niece made me the best card EVER!!!!

 

I was discharged from the hospital on day 11, I was to have my stitches removed the following morning and it probably would have been easier if I could have stayed but I leaped at the chance to leave and have my aunt remove them at home as she’s a district nurse – winner! MY stitches were 2 little beads and 1 ling line of surgical wire, she literally snipped 1 end of the wire and fed the remaining end all the way through. I didn’t feel a thing

The scar instantly relaxed a moved into a long straight line instead of a bunched up crusty wrinkly crinkly.

It healed incredibly as you can see from the photo’s. (at week 2 it looked like my section scar looked at month 6 – very clever!)

 

 

 I remained on a very high dose of calcium supplements (which I am still on 2 months later) as my calcium glands really have taken a turn for the worst and it’s incredible just how dangerous it can be for your calcium levels to be low, the pressure and risk to your heart is extremely dangerous I have never seen dr’s worry or move as quickly with the nursing team as they did, I am grateful I was cared for so well and by such a fantastic team. My surgeon visited my daily and when he couldn’t he made phone calls to check my daily blood tests, he kept a constant eye on my and we built up a really lovely relationship, he reminded me each time he saw me that once I was discharged I was to go home, put my pj’s back on a SIT and that’s exactly what I did, I was just sooooooooo grateful to be home and with my family and my little dog that I didn’t dare bend the rule I was the perfect little patient (although my husband would probably disagree). I had a few minor moments of OCD kicking in but mainly I slept and rested and couldn’t speak much so I just sat, happy and headache free embracing the life that I have become extremely appreciative to have.

I have learnt a lot about myself on this journey and I appreciate the smaller things in life a LOT more. I have learnt to take life at a slower and less urgent pace, ok so there are times were I still need to crack the whip but if my boys leave their shoes out once in a while it won’t really hurt anyone will it?. I still can’t shout (2 months on) so my boys are very grateful of that (I’m NOT), if I try and shout a really silly noise comes out and they end up laughing at me so I guess it kind of defeats the object.

I was readmitted to hospital for a week a few months after because my calcium glands STILL refused to work and I’m STILL waiting for them to kick their little butts back into ‘safe mode’ (almost 4 years later) but a week on drips and strong meds seems to put me back into the land of the living again. It’s not the amount of calcium you consume that can control the illness it’s the amount of calcium your calcium glands will allow your body to accept and process and mine just won’t hence I am a slave to 6 supplements, 4 pills and a very high calcium and vitamin D supplement for the indefinite future but, it keeps the tingling at bay, it means I can be home and around my little boys and let’s face it, after what I’ve just been through it’s like a walk in the park!

The reduction in my meds is incredible, I’ve gone from taking over 30 pills a day to 1 thyroxin tablet and then of course the calcium ones I’m whining about. Once my calcium glands start working I will be on just 1 pill for the rest of my life, compared to an overactive thyroid and those cluster headaches – I’ll take that!

I am on the electronic NHS database just like the millions of other people without a thyroid or those with an underactive thyroid and will be managed with a simple 6 monthly blood test to ensure my ‘levothyroxine’ is producing enough of the synthetic hormone that I require and I guess I can gauge that myself in how I feel and in my weight management. I initially gained weight but over the years have managed it well.

I have been told a few times to stop trying to run before I can walk and to take things slower and the more I’ve allowed myself to do that the more energy I have found I have. I’m back out with the dog 2 hours a day, hopefully increase to 3 as time allows, I walk everywhere again instead of never leaving the house, my home is clean, kept and nothing seems to be too much of a chore. I am getting the spring back into my step and it feels good. I still need to find me, this may sound really silly but I look in the mirror and I don’t look like me, it’s not so much the scar but the eyes, the face shape, the movement and maybe addition of a little excess timber? I’m not sure but I don’t feel like me, I’ve changed my hair a few times, I’ve played with different make-ups but still I don’t feel like Rachel anymore. I feel less caring and emotional and more blasé to others who never really bothered with me (which isn’t like me because I’ve always cared for everyone even if I knew they didn’t give me a second thought – weird – good move? Dunnno?). I just feel like I’m not quite myself and I’m not sure why or what to do about it. Maybe this is me and I just haven’t been myself for so long that I’ve forgotten who I actually am? Either way I am still searching, soul searching – I’ll keep you posted on that one!!

My body still can’t control its own temperature properly, I’ve gone from spending a year too hot, really too hot to the point I couldn’t even have a quilt over me in the winter to being soooo teeth chatteringly cold in April and the heating hasn’t been off EON will LOOOOOVE me!! Hopefully this will start to settle as my calcium does too..

 

My Graves Disease will never leave me. (finding this out HURT). I will always have GD, removing the thyroid aids the disease but there is no cure. I have to help myself on this one, simple lifestyle changes. No Smoking, Limited drinking (not a problem). Cut out salt (tick) White Bread (tick) and Heavy Cardio exercise (tick). I have to keep my eyes protected as much as possible, glasses most of the time from the sun, wind, grit, rain. Anything and everything will upset my eyes and trigger an attack causing them to puff back out (they have retracted a lot – almost normal). I have a lifetime supply on demand of drops, steroids and medicated lenses and wrap around glasses – lovely but if that’s what it takes so I can see properly and not have to live with permanently achy, gritty and watery eyes then I’ll take it – wouldn’t you?. My standard converse shades are working for now though J So if you see me walking down the street in the wind and rain or on a cloudy morning with my shades on I’m not vain like most people have wondered, or I’m not doing it as a fashion statement. It means I can see and will continue to see and preserve the life of my eyes and that my friend is more important than how I look, or how I worry you think I look. However, it does mean I have free reign on building up a very cool, very varied collection of sunglasses, I have over 10 pairs already – check me!!!

On a Positive I haven’t had 1 single headache since my surgery now that’s impressive! Every time I think about it, it makes me smile – HORRAY!! Those headaches were soooooo bad I am soooo grateful I am now on the other side and heading towards the rest of my life with positivity and gratitude.

I took (my husband did) LOTS of photo’s through my surgery and recovery and I have included them in this blog for you to see and it should help you prepare for your surgery / what to expect of a family members journey.  I really hope you find them useful and please, if you have any further questions or worries you can email me or leave me a comment here and I will respond to you I promise. I am sure I have missed tons of important / useful bits to blog for you but there has been that much as it’s all happened so quickly on the post-op side that I haven’t had time to sit and evaluate yet but I do know in the future I will look back and be grateful for whatever lessons I still have to learn from this – I’ve learnt lots already!!

I wish you luck and am sending you hugs through your journey, I sincerely hope it’s as speedy as mine was (12 months from diagnosis to removal and recovery), I know some people have this battle for most of their lives, I guess it’s the bitter sweet with just how quickly you deteriorate.

So I will leave you here and put this to bed, I just wanted there to be a record if it somewhere because it was a huge chapter in our lives at the time.

Rose ❤ xx

 

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