Thyroid

Perfect thyroid levels… so why am I still struggling?


A few weeks have passed since I last blogged. I managed to eventually get my bloods done! I booked an appointment with my GP so I knew it would be in and out. My daughter beahaved beautifully which made it even easier. 

I had a phone call today from my lovely trial nurse, Karen who told me my bloods were perfect. So pleased so be on a dose which my body seems to love. 

But with me and my body there is always a however. 

If my bloods are so good then why am I struggling so much? Headaches are back ๐Ÿ˜ฉ Iโ€™ve been keeping a diary as asked by my GP and there is no pattern to them. They just turn up whenever my body decides to piss me off. The insomnia… oh the insomnia. Hello again my worst enemy. My body aches… physically aches for no apparent reason. If i have a busy day, I will pay for it afterwards. We had such a good weekend with friends, shopping and ikea with lots of walking and a few lates nights which I am now regretting. I feel like an 83 year old trapped in a 33 year old body. 

My irritability and anxiety have come back too, started to get used to feeling normal! Iโ€™m still convinced America was my medicine ๐Ÿ˜‚ 

I just feel generally ergh all of the time. 

Iโ€™m pleased that my thyroid levels are so good because whenever Iโ€™ve been to the doctor before they have palmed my symptoms off as part of that, so this time I can say that my levels are fine.

I will be ringing my GP tomorrow to try and get an appointment. I wonโ€™t hold my breath for any luck. 

Xxx

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Thyroid

We did it! ๐Ÿ’๐Ÿฅ‚


We are now Mr and Mrs Griffin โค๏ธ 

We had the most amazing 8 days ever. We were married in Red Rock Canyon, just a 20 minute drive from the craziness of Vegas. It was beautifully perfect. 

We flew into Vegas on the Friday and arrived at 3pm their time and 11pm our time. Anyone who reads my blogs knows I am in bed by 9pm most nights so I knew this would be a challenge! I tried to sleep on the plane as normally I could have a cheeky nap anywhere! But just couldn’t seem to drift off. 
By the time we had checked in, got car and bags and found somewhere to eat, we had been awake for 27 hours straight. This is insane for a ‘normal’ person haha let alone me and my old lady body! It was the worst feeling ever, I felt sick, emotional, angry, I never want to feel like that again. 

Holiday excitement is a drug in itself and should be bottled as I felt great nearly all of the time. We walked around 15 miles one day in 43 degree heat and it was bearable. At home the school run does me in! Maybe I am secretly American. 

With the walking and the heat I lost a whole stone in weight too! A stone ๐Ÿ˜ฎ that is crazy. I weighed myself on 2 separate scales as I didn’t quite believe it! 

My body seems to love being in America, every reason to start planning our next adventure… for medical purposes… obviously ๐Ÿ˜‚

Vegas was insane and definitely and experience but LA, Hollywood and Laguna beach were incredible. 


We flew back on the Saturday but didn’t get home until the Sunday due to time difference so we lost a whole day. So again, no sleep for over 25 hours. Ergh. 

We have been back just over a week and on Saturday we celebrated with close friends and family which was such an amazing night. 

Now back to reality, appointments and blood tests! I waited for 40 minutes this morning at the hospital, waiting to get my bloods done. My daughter has had the devil in her today so I knew she would be testing! She told the whole room that she was having a poo and not to look at her ๐Ÿ˜‚ I took this as my que to leave haha. Had to pay ยฃ2 in the car park forthe privilege too. 

Now we are back at home with the devil child taking a nap, me catching up with Corrie having my 3rd Coffee of the day. 

I’ll try getting my bloods done tomorrow when I have more patience and when the child doesn’t need to poo. 

Xxxx

Thyroid

It’s all coming together ๐Ÿ˜Š


So in 2 days time we fly to USA to get married! I have packed, re packed and even wrote a list about what I still need to pack. It sounds a little like I’m obsessed. Well I am ๐Ÿ˜‚ we have been planning this trip for 18 months and to think it’s finally here is crazy! But I know what my memory is like, I will get half way around the world and realise I have forgot my dress. My memory is not my strong point lately! 

I’m on more tablets now, which I only started yesterday. I have to take them 3 times a day, so rather than be messed up with the 8 hour time difference, I’ve set it up to take them in Vegas time. Which means a rude 4am wakening for 3 days until we get there! Once I’m awake it’s near impossible to go back to sleep, so I’ve been up since 4am for 2 days straight. Urgh. 

One of the joyous side effects of the new tablets is that I’m in agony! So I’m taking a strong painkiller to counteract. The size of my medication bag for the plane is huge, they are going to think I have problems! 

In exactly 30 hours time we will be boarding the plane, hoping I have remembered to pack everything and looking forward to relaxing for 10 hours. 10 whole hours of sleeping when I want, eating when I want and generally being a bum. The best part of the whole trip ๐Ÿ˜‚ 

But until then we still have 2 days to get through. I will probably have to pack one more time, just to make sure haha make sure everything is in place at home, make a few phone calls, tie up a few lose ends and then we will be done. 

All ready to become Mrs. Griffin ๐Ÿ˜ 

See you on the other side ๐Ÿ˜˜๐Ÿ’

Thyroid

It’s the little things โค๏ธ


Last week I had a phone call from my Trial Nurse, Karen. She said she had read my blog and no one should have to put up with feeling like this until January, so she has ordered me bloods to check my levels. I told her I loved her about 3 times during the conversation. Something as little as ordering bloods is massive to me and I’m so grateful. 

So a little update on me. 

My headaches have gone. I can’t even explain how amazing this is.

My insomnia has gone and I actually sleep all night. Lush!

Night times are so much better in this house. Little lady sleeps through… at bloody last! Anyone with a sleep allergic child you know how amazing this feels ๐Ÿ˜‚ it was a long 2 and a half years of being a zombie mum but we are there ๐Ÿ‘๐Ÿป 

So we are a house who sleep! Finally!

This should make me feel on top of the world, refreshed each morning after a whole nights sleep. No chance, that would be too easy. That would mean my body liked me.

I wake up and literally have to prise my eyes open. God it makes me grumpy, sorry Glenn ๐Ÿ˜‚. I take my meds then patiently wait and hour before I can have breakfast and coffee. 

Those few hours between meds and lunch are great. I am able to do anything. 

Then the afternoon comes. 1-2pm is the worst hour of the day. I’m having to even avoid driving at that time as I can’t concentrate properly! I plan my days around it and try and fit a whole day of entertaining 4 children into one morning. It’s crazy. I’m 33 but have the body of an 83 year old! 

We had a nice morning at the beach hut yesterday, but I knew it was time to come home. I gave the little ones a bath, put them into their pjs to save sand covering my house and made the mistake of laying on my bed for 2 mins. I fell asleep ๐Ÿ˜‚ really body?! 

We also had a family BBQ Saturday which has been planned for so long. It was lovely to see family who we hadn’t seen for a while as they live away, but the party started at 2pm. The dreaded 2pm. So I spent the whole time sitting in the living room, hoping people wouldn’t think I was rude! Trying not to yawn when I was talking to people is always a tough one! I don’t want them thinking I’m bored or not listening, but once you let one out they just keep coming! 

But on a positive note my wedding dress fits!! I still look like I’m 6 months pregnant and pretty sure I have an over hang of back fat ๐Ÿ˜‚ but it fits! 

I have also lost 4lbs! Not loads but those 4 stubborn little bastards have gone. 

We have 16 days until we go away. That’s going so fast it doesn’t seem real! 2 years of planning and it’s nearly here! I’m certainly not going to let my absent thyroid ruin it.

But in the mean time I have 4 children to entertain in the typical UK rainy summer holidays and a toddler to potty train. I’m going to need an IV of coffee to get me through the next 16 days! 

Bring it on body, I’m not giving in 

xxxxxx

Thyroid

What’s a bit of rain when you are having fun!

flo

On Saturday I held a Summer Garden Party for the cancer support group I run. It had taken months to plan with so many people helping to make it a success. The week leading up to it had a terrible weather forecast! Rain and and more rain! I am always super prepared and like to have a plan B, C and D, but this time there was nothing. A lovely group member has an acre of land and she offered for us to hold it there. Perfect. I hired bouncy castles, organised a face painter, glitter tattooist, an ice cream van, and lots more. All extremely summery things, which would be perfect in the sun. Don’t ruin this for us now rain!

The night before we desperately scrambled to come up with a makeshift plan B, but we didn’t want to be defeated. We woke up Saturday morning to glorious sunshine and it was dry! Result! That was until 2.30pm came and guests started to arrive , the heavens opened. Not just a bit of rain either, actual pouring! Stupid England!

But we carried on, attempting (and failing) to make shelters out of tarpaulin, erecting flimsy gazebos and trying to cover our lovingly prepared picnics from getting water logged!

But it was a bloody good day! There was so many people, children having the time of their lives on a wet bouncy castle, having water fights, sliding in the mud! It was lovely to watch.

We made a massive total of ยฃ400!! I didn’t even dream of covering the cost of the bouncy castle, let alone making that much! It was extremely humbling. All of the hard work and stress paid off.

Two lovely ladies, who have been coming to the group since the beginning, 18 months ago, helped massively. If it wasn’t for them, it wouldn’t have been as successful. When I started the group I wanted to help others make friends but I never even thought that I would too. I am very lucky.

I have just finished a write up for the local paper and completed an application form for a grant which I think we may be considered for. Fingers crossed.

I’m glad I have stuck to my initial ideas.ย The group is a huge success and is growing so fast. Its exciting to think where we will be in another 18 months!

xxxx

Thyroid

From Hyper to Hypo

It’s been nearly 2 weeks since my thyroxine dose has been lowered and I’m really struggling already. My agonising headaches have disappeared which is an amazing feeling, but being hypo is hard. 

It’s summer holidays and with 4 children I don’t have time to be feeling sorry for myself, they want to be out doing things! But it’s day 5 and so far we have managed one park trip for 20 minutes ( I lied and said we were there longer, time goes quick when you are having fun, right?!) 

The rest of the time we have been indoors. Not sure if it’s related and how it affects your immune system but in the two weeks I’ve had a sickness bug followed by a horrendous cold. Who even has a cold in July?! 

The lethargy is the worst I’ve ever felt. I feel like I don’t even have to energy to hold my own head up and that’s not a Gemma exaggeration haha. I’m like a zombie. It’s not even tiredness, it’s like someone has sucked the life out of me and I’m just a empty shell. Even coffee doesn’t help. 

It’s hard not to let it beat you when you feel this shit. 

It’s funny how one tiny 25mg tablet could make such a difference in how I feel. My body’s norm is obviously somewhere inbetween, but with my next appointment not until January, life has to go on. 

But from now until January I have so much I need to feel better for. I get married in 29 days! We are going to Vegas which is a 10 hour flight, a few days there then to LA another 4 hour journey, then the 10 hours back. The way I feel now I’m worried it’s all going to be too much. 

My consultant was fantastic, like I said in my last blog, but even he doesn’t realise that between my 6 month appointments, my life has to carry on. He told me this new dose would probably make me hypo and that it would take a few tweeks to get it right. So in the mean time, I have to just wait it out.

 But lethargy is something you can’t paint over. I can’t pretend it’s not there, like a lot of my other symptoms. I get cold now, so I put more clothes on. I’m tired earlier at night, so I go to bed earlier. But this? “No kids, we can’t do anything for the next 6 months, because I have to wait for my next appointment” I can’t see that happening. 

So today we are going to the beach hut. Comfy chairs and cups of tea while the kids play. 

But if you see me, I probably won’t hold a very good conversation. I’m sorry if I yawn through everything you are saying to me, I’m not being rude. My kids outfits probably won’t match and will be un ironed, but they will be clean and fed… just about ๐Ÿ˜‚

So only 186 days to go. And I’m counting every single one 

xxx

Thyroid

Some good news at last

 

Yesterday I had my dreaded hospital appointment, the one I have been patiently waiting 6 months for.

I’m so relieved to say it was good news! Tumour marker came back negative! So the nodule must just be a lymph node.

I see a new consultant every time I go which means I can’t build a relationship with the person who I am meant to put all my faith in. Up until now all the consultants I have seen have been rude, rushed and have treated me like just a number.

Yesterday I saw Mr. Balfour for the first time. He is a surgeon who performs the thyroidectomy then sees you for every check up after. Well for other people anyway.

To my surprise he was amazing. He talked me through the results of my scan, explaining what he could see and what it all meant. He showed me my blood results on a graph so I can gain some understanding of what’s going on in my body.

He explained that my TSH has to be suppressed to stop the cancer coming back, which I knew and that it was on the perfect level. My T4 was ‘toxically high’ (in his words) and my T3 was within the normal range. He asked if I suffered with headaches, insomnia, tachycardia, heart palpitations and more. He was describing me to a tea! I told him about my 6 day migraines and cluster headaches and the fact that they get so intense they make me sick. I explained about my GP not giving a shit and giving me sleeping tablets. You could see the empathy in his face, he genuinely cared about how I felt. It was like a breath of fresh air. In one half an hour appointment he had restored my faith in medical professionals.

I ticked about 9 out of 10 common symptoms for hyperthyroidism and annoyingly the only one I didn’t have was weight loss. My body had been in overdrive, like a furness on full steam…but I was still piling on the pounds. Still gaining weight faster than I can get rid of it. Ive gone from always being the skinny one, not having to watch what I eat to the one who now has people saying ‘well you carry it well’ and ‘I think you look better for it’. Although you think thats nice and helpful, its really not.

I have gained 2 dress sizes since my operation 4 years ago. Although that might not sound a lot to some people, to me it’s massive. Pardon the pun.

So because my levels were dangerously high, Mr. Balfour has lowered them. This will mean all of the horrible headaches should go away as well as the other gross symptoms. I actually can’t wait for a day where I’m headache free! But the negative side to lowering my dose mean more weight loss. If my body is not burning the fat on full steam, god knows what it is going to do at a normal pace.

So it’s a choice between headaches or weight loss!

Health has to come first, so thats it, dose lowered. Goodbye skinny beach dream, hello increasing weight. argh.

He has promised me I will see him at my next appointment in January, where he will keep changing my dose until its perfect.

So yes its shit, but my god it could have been a lot worse. I feel like a weight has been lifted at last. 6 months of worry, bringing up old fears and memories all gone.

It’s much too easy to let the bad things in life consume you. I haven’t wrote a blog for a while as I was not in the right place and didn’t want to be that depressive girl who only ever moans about what’s wrong with her. I am not that girl with no thyroid, I’m me. I drink far too much wine, shout at my kids far too much and binge watch way too much Corrie. But I’m bloody happy.

Now I can look forward again. It’s 39 days exactly until I marry my amazing fiancรฉ and celebrate with my family and friends.

Lifes pretty good

 

xxx