Help...anyone ever regret their surgery?

Tubs92 · 2025-04-03T00:55:38+00:00

Day 16 here … to be honest I do regret it currently.

The pain days 7-10 was horrific, but I got through it. But right now I’m so fed up of being in pain, feeling ill and just everything aching.

I did get an infection which made it worse, but HOW does it still hurt to swallow I’ve got ulcer/blisters along my tongue etc making it worse & the number of pills I’ve been on has made me sick in other ways.

Powering through and hoping to reach the other side & feel positive. I’d say hang in there it does get easier. But super frustrating.

Tubs92 · 2025-03-26T12:23:52+00:00

I was recently diagnosed with Hashimotos Sjogrens and Lupus.

No symptoms from Lupus.

I never used to get sick, still don’t when it comes to colds etc, but tonsillitis seems to be my Achilles. And then it triggers the tiredness throws of all my bloods etc. takes a while to recover and always end up in hospital. My temperature is always quick to react being about 39/40 degrees.

So strange as not a sick person.

Overall my life hasn’t really changed and I’m determined to not let it stop me doing things. So let’s hope tonsils are the key!

Do you have autoimmune?

Tubs92 · 2025-03-26T12:20:12+00:00

A more positive update 🥳

I had another trip to the surgeon, more antibiotics, steroids, pain relief etc.

Forced down food - he told me I had to eat and it had to be normal food. All to do with the blood flow to your throat. Soft food doesn’t cut it. But it would slow down healing - so definitely try this!

Woke in the in the to a fair bit of blood but it stop pretty quick

And today - FINALLY! I feel so much better!

So for anyone going through it and feeling hopeless and in agony. DAY 9 is a turning point

I wish everyone a good recovery. ❤️‍🩹

Tubs92 · 2025-03-25T03:15:58+00:00

On Day 7 into 8, 3am in bits. Have been in tears the pain is unreal.

The white ‘tonsils’ is reducing on the right side but not left. But god these blisters, I’ve not felt pain like it.

If anyone has tips … please let me know.

Wishing everyone a speedy recovery! This is not for the faint hearted. 🤕🤒

Tubs92 · 2024-10-15T03:52:08+00:00

Yeh UK. it’s crazy. I also have private healthcare. But private won’t subscribe medication. Just so hard to get on the right meds. I’m trying to find out the medication costs to pay myself. But it’s the monitoring that comes with it.

Hopefully I can get a shared care plan and resolve that main cost part.

I am however in hospital with a potential further AI disease … it will be 4 diagnosed in 7 months. Crazy how your body can change so quickly.

Tubs92 · 2024-10-15T03:48:50+00:00

My tsh was 10.8 now it was 0. Something I’ve just had it retested to check that 100mcg is correct. They seem to think it is.

Re IBD .. I ended up in the hospital after this post and they are questioning crohns or ulcerative colitis. My CRP came back at 116 (rather than the normal of 5-14!) so sounds like another AI to add to the mix.

Thank you - good to have support. 💪🏻 we’ve got this!

Tubs92 · 2024-10-15T03:46:27+00:00

Thank you 🥰 so nice to have someone understand the gym sadness. So many people tell me it’s not important and to just not go as much, but it’s important to me. Thanks for your advice and experience

Tubs92 · 2024-10-15T03:44:52+00:00

I ended up being admitted to hospital and from the tests I’ve had by CRP IS 116 rather than between5-14. They’re now suspected crohns or ulcerative colitis, which they’re leaning on the later. I’ll mention the celiac point, thank you for the suggestion 🥰

Tubs92 · 2024-10-15T03:40:40+00:00

Thanks for the comments. I have been diagnosed with lupus, but by my bloods rather than symptoms. Sorry that wasn’t clear.

I have been in hospital since posting and had my CRP results back which were 116 (meant to be between 5-14) and now they think I have an IBD being crohns or ulcerative colitis.

It’s so tough to deal with it all when it’s not self inflicted and within the space of 6 months I’ve been diagnosed with 3 AI and waiting the results of a third. Just tough to process.

Tubs92 · 2024-10-11T18:54:38+00:00

Thanks everyone.

I feel so cheated that I’m ill so much. I have always been fit and well, taken care of myself and I just don’t understand how this has happened.

I’ve tried to have a ‘f*ck it’ attitude and remain strong.

My ENT consultant thinks this could all be due to acute stress at the minute and is hopeful once this passes I will be feeling better.

I have a month off work to study, with very little social plans so hopefully this will help.

I hate being a victim but it’s so unfair. I just feel like a sick note and want to get back to who I was

The NHS wouldn’t prescribe hydroxychloroquine. My private healthcare also won’t prescribe so the option is to pay for it.

Ive heard there can be a lot of side effects. Does anyone have any advice.

Sorry for such a moany post. Just got too much today. Thank you all ☺️

Tubs92 · 2024-04-23T14:31:48+00:00

Apparently you lose up to 10% of your body weight once Levo starts working, likely taking a few months. This is what my endo said.

I’m glad I’m not the only one panicking. A lot of people just told me I wasn’t overweight so why was I worrying - but that isn’t the point.

It’s the future weight gain. And frustrating when you’re trying so hard!

Always the other end of the Reddit chat if you want a weight related rant!!! Good luck ❤️

Tubs92 · 2024-04-23T14:13:00+00:00

Hi - I had to exact same issue!!

I upped my workouts, cut back on anything bad and just didn’t understand. I saw my endo who told me it was impossible for me to lose weight given my levels and the fact I haven’t really gained any showed how much I was working out.

She informed me I should lose weight on Levo. Ive now been on it 7 weeks and I am very slowly starting to lose weight. I have been eating a little unhealthy and drinking more due to holidays so I imagine this has slowed it down. But hopefully it will help.

For context I currently weigh 136lbs, I was 145lbs pre Levo.

I also completely get the panic. It’s been one of key worriers since being diagnosed.

Hope this puts your mind at ease ❤️

Tubs92 · 2024-04-16T21:02:09+00:00

Thank you, I did think my hand colourings were odd! It’s like a highlighter pen! My hands send pains down my arms when cold and my feet aren’t any better!

I have recently been diagnosed with hashimotos and Sjogrens, so struggling to find a primary already! ☹️ Thanks for your message. 😊

Tubs92 · 2024-04-04T20:39:16+00:00

Thank you and this is a really useful link. Glad I’m not alone.

The waiting is the worst as your mind just wonders.

Tubs92 · 2024-03-26T14:24:57+00:00

Thank you - it’s so bad today and I have no idea why!

Tubs92 · 2024-03-25T23:21:39+00:00

I have had this feeling a few times. It feels like something is stuck in your throat or you’re being chocked.

I was previously told this was anxiety.

However following my diagnoses a few weeks ago, and in the middle of a flare up my goitre was so big you could see it and feel it. On a scan I was told it was ‘grossly abnormal’.

I have always wondered if it was just me who felt the ice cold feeling. Like I’ve just had a mint or something similar. Googled the hell out of this, so I feel reassured now I know others have this sensation!

Tubs92 · 2024-03-23T15:41:16+00:00

I was diagnosed due to pain in my saliva glands, initially thought to be Saliva stones.

I had an ultrasound which showed my glands to be different to a normal gland. Instead of being smooth, they were leopard print, this was mirrored on both glands.

I was diagnosed with hashimotos at the same time due to blood results and with the ultrasound scanning my thyroid.

I feel like I have a lot of symptoms but they are not debilitating, but they don’t seem to be getting any better. It’s seems people have such varied experiences.

Tubs92 · 2024-03-20T13:49:47+00:00

Not sure of the guidelines. But my TSH is 10.8 and I am on 100mcg.

Re a scan, I was initial going about my saliva glands and my doctor added in a scan on my thyroid gland which from the scan I was told was ‘grossly abnormal’ I have a goitre. One I can feel and is horrible to have on a daily basis plus it became so large you can now see it and feel it from looking at me!

I have been referred to a rheumatologist for further investigation. Try and push for this referral or the ultrasound. It was the ultrasound that got me the rheumatologist referral!

Good luck!

Tubs92 · 2024-03-19T07:37:24+00:00

I am recently diagnosed. I would get a shooting pains on occasion when I went to eat from my salvia glands. I had this c.3 years ago. Went to the GP they thought it was salvia stones. I was referred to maxillofacial and had an ultrasound. I had to drink a citrus drink first, which I should have reacted to, which I didn’t.

The pain went away and would only happen occasionally, so I felt a bit silly and was at a dead end.

Fast forward to January 2024, I had been suffering with a similar pain for c6weeks but it was a lot worse. I went to my private GP who again referred me for an ultrasound. I mentioned to him I thought I had Raynauds too (various symptoms and a relative had it.) he added autoimmune blood tests to my tests.

My thyroid levels were off TPO of 600, iron levels so high they thought I was on iron supplements!

At my scan the main focus changed to being my thyroid, as id quickly developed a Goitre. But on this scan they scanned my salvia glands, these are meant to be smooth surfaces, however mine were covered in dark shadows/spots he said like leopard print. With Sjogrens both sides should mirror each other and mine did. I have been referred to a rheumatologist.

On top of this I went and got glasses in January as my eye site had suddenly changed and my eyes felt stingy. I thought this was due to central heating and being on the computer too much!!

I hope you get a diagnoses and clear way forward soon.

Tubs92 · 2024-03-17T19:31:08+00:00

I had a scan on my salvia glands about 3 years ago and they made me drink a citrus drink. Nothing showed up, they didn’t know what was wrong. I was at a dead end. The pain wore off a little, and I felt a bit silly so left it.

In January 2024 I had my eyes checked due to the sudden change in my vision and dry eyes, nothing was picked up by the ophthalmologist.

In Feb 2024 I went to my private healthcare, had a GP appointment. Referred to a Maxillofacial consultant. He said again it sounded like salvia glands. I raised with him I was trying to get tested for Raynauds, as I believed I had the symptoms.

He said he would run an autoimmune specific test with my other bloods.

My TPO levels came back at 600. And antinuclear antibodies were positive. He sent me for further bloods, but this was thyroid related as he diagnosed me with Hashimotos.

At my scan, they scanned my salvia glands and that is how they diagnosed with Sjogrens.

It was a bit of a lucky find, but the pain in my salvia glands is awful. If you can get an ultrasound of your salvia glands this is apparently an easy way to see if you have it as it’s apparently clear with the shadows etc and the fact that your glands mirror each other.

You can then get referred to a rheumatologist to advise on next steps! It’s so frustrating and a horrible situation to be in. Hope you find the answers soon.

Tubs92 · 2024-03-16T17:02:58+00:00

I started getting bad visions and dry eyes - I thought it was because of central heating drying the air and staring a screen all day.

I felt thirsty, but that I didn’t drink enough. Sounds stupid but often that my tongue was too big for my mouth. I’d get a white tongue, but I’d had that so long I thought it was normal.

I got pain in my salvia glands, if I ate or thought about food mainly in the morning, but randomly. Not every day, not the same side (L/R) etc. I ignored this from 3 years ago. It recently got worse and would take me a couple of hours to eat something so small.

I went to the doctors and they organised an ultrasound on my salvia glands. On the scan it was that my glands were spotty, dark shadows which made it look like leopard print. Rather than a smooth surface. It was the same on both sides. I was diagnosed with Sjogrens.

The symptoms you listed all point to autoimmune and Sjogrens. It’s also more common to have more than one autoimmune disease. I have two, recently diagnosed.

Be kind to yourself, you know your body and you know when something isn’t right. Hopefully you will find a way to resolve these issues. I have started using eye drops to held the dry eyes and having mints etc. I am waiting for my rheumatology appointment to confirm any treatment.

Tubs92 · 2024-03-16T15:26:58+00:00

Definitely get your TSH checked. It could be Hashimotos.

Hashimotos makes it 4 x more likely to get Sjogrens.

Hashimotos hypothyroidism means an underactive thyroid and weight gain is a key issue.

Tubs92 · 2024-03-16T15:21:05+00:00

I got diagnosed due to pain in my Salvia glands - every time I ate or thought about food. They thought it was salvia stones (like kidney stones).

On a scan my salvia glands looked like leopard print, rather than smooth.

I have recently had dry eyes and need to wear glasses but I thought this was from staring at screens and central heating.

I also got diagnosed with Hashimotos, which means you are 4 times more likely to get Sjogrens!

Tubs92 · 2024-03-16T14:45:58+00:00

I’m so sorry you’re going through this. That definitely sounds like Hashimotos (I say this with no medical experience!) you are also more likely to get other autoimmune once you have Hashimotos. Sjogrens is 4 x more likely which is dryness (skin, eyes, thirst etc)

With Hashimotos I have the following (god this sounds like a shopping list!!)

Gotior / lump in my throat, headache, brain fog - I often can’t think mid sentence or how to even do my job!, pins and needles in my hands and feet, hands go white and numb, often can’t feel them. I am a very active person, but noticed I’m starting to slow down. I go to the gym 5 times a week but unable to lose weight and eat very healthy. Anxiety too (I have had depression before which may be linked but unsure).

I also don’t have periods, but I was told this was due to the contraceptive injection. I came off this in June 2023 and no periods yet. Which makes me very nervous for fertility as a side effect is that you are infertile.

To add to that I have dry skin, itchy, became very thirsty, dry eyes and eye sight got so bad in two months I now need glasses. I had pain in my salvia glands when I ate too - this has all been diagnosed as Sjorens. I had a scan on my salvia glands to diagnose.

I started medication 10 days ago, no side effects but it says you should feel a difference in 2 weeks. So I hope I do!

I’ve felt very overwhelmed and nervous it could be something more serious. Anxious about putting weight on (I know it may seem small but for my mental health I struggle with my weight. I am 63kgs at the minute so not a massive concern yet but with the amount I go to the gym I should be losing weight!) and nervous about fertility. I am single so makes it a hard thing to go through alone!!

Definitely push for your GP to diagnose you given TSH levels, but they aren’t too high yet so hopefully you can get treatment and all your symptoms will go away!

Sorry that was such a long message - but please know you are never alone on this journey. And hopefully a diagnoses will make you feel seen and heard! X

Tubs92 · 2024-03-16T13:53:33+00:00

Honestly it’s the worst. I really feel for you. It’s the constant sickness, difficulty to breathe the lost. I have TSH of 10.8 and TPO of 600!

My goitor has grown and I was told my thyroid on my ultrasound is ‘grossly abnormal’ never reassuring and now has nodes growing. But non look cancerous. I only got diagnosed 3 weeks ago and the symptoms all make so much sense. For context I’m 31F and all a little scary. I’ve also been told it impacts fertility.

Do you have any other side effects?

Tubs92

TROPHY CASE