hi again all, I saw my specialist a few weeks ago but she did not have the results at the time. I got the letter on the 25th that my gp had not tested me properly. She said I would have to rebook bloods and she will get in touch. My mental health deteriorated massively which in turn made me my symptoms worse and I have now had to go on sick. I can’t afford to be on sick so the thought is really stressing me out also.
On Saturday my neck started to really hurt and has swollen and got worse each day. I can no longer eat nothing but soup which with an overactive thyroid is nowhere near close to what I need. Also codeine is not helping the pain and I am struggling to move my neck without it really hurting. This is the first time I have experienced this symptom in the year or so I have been diagnosed.
I went to A&E today and have been sent home with just a blood test done (TSH 0.05 & t4 78). They said to come back if I can’t breathe properly. I can’t carry on like this and I feel like I am going to drop dead. Can anyone please give me advice.
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Chara87
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I started on carbimazole Dec 21. I was on it for quite a while but it froze my joints up and I was in a lot of pain with them and couldn’t walk some days. I’ve been taking PTU since Sept 22 and I have not yet seen any difference and I seem to be getting much worse. The symptoms are becoming unbearable. I’m on the maximum dose of propananol but it doesn’t seem to hit I have a constant nagging pain in my chest from the palpitations. The dr at a&e said it may be because my very high level of thyroid may be cancelling them out x
So sorry, you're having such an awful time. If you can hang on until tomorrow, definitely call the endos office again first thing in the morning, and make sure they are fully aware of how bad things are. Explain that you have new symptoms and existing symptoms have worsened and you need help now.
But if things get any worse at all overnight, definitely go back to A&E.
I will try that definitely. I appreciate they are busy but I’m getting desperate now. I was also worried about weight loss with not being able to eat I am already underweight x thank you for your help x
With a high FT4 (and a low TSH), they really should have done Free T3 as well.
Can you contact your specialist? She might not appreciate quite how much things have worsened. Collect your details (and thoughts) together and call or email or whatever.
this was just the hospital ones I’ve got my specialists version on the 16th with a blood form. I think this is what’s made me worse and stressing me out she is so hard to get a hold of I’ve cried to the receptionist my boss has sent a letter I don’t know what else to do hence why I went to a&e x
Hi Chara, so sorry to hear you are having difficult time. My daughter was diagnosed with Graves few years back and we ended up in a&e, her t4 was 48 and t3 26. We were told that's very high and they called endo straight away to examine her. She was immediately put on carbimazole. I am shocked they let you go home with such a high readings I feel you need to go back to a&e and tell them that you feel very bad and you need to see endo immediately. They have to do something with such a high results.
I am based in Bradford north of uk and they are well known for having a less than average NHS. I am struggling even more today my heart rate feels a lot and I’m just exhausted with it all: my partner is coming to a&e with me today he’s a lot more forward so he won’t let them send me home x
You are not responding well to the AT drug and your thyroid now swelling up and sore :
These symptoms alone need immediate medical attention -
please go back to the hospital today and make the medic aware that you are already on maximum doses of AT drug and becoming more ill and need to see an endocrinologist today :
I am heading up there now thank you. My partner is coming with me he’s very strong willed. I am also attending a different a&e where my specialist is so I’m hoping I can get something today. Would they not provide anti inflammatory?
Goodness, this sounds awful! You need a neck scan. Call you gp asap and they should give you a referral for urgent scan or better, go to a&e. Tel then this is progressing very fast! This sounds like my illness that no one could figure out even though I knew with one Google search. Read about Subacute Thyroiditis! Very rare but it happened to me! See if any symptoms ring a bell . It takes ages to show symptoms but first stage is overactive thyroid and that's what you have with TSH 0.05! could be sorry thyroid storm! No joke there! Please go to a&e and they need to scan you. They ibuprofen! It was the only thing that helped for the swelling and nodules! Paracetamol was a saver for excruciating pain though! Good luck and keep us updated!
I am heading up to a&e now with my partner I can barely talk and codiene is taking the edge off. When I went to a&e yesterday they just sent me home with nothing I can’t cope anymore z
Bless you. I know exactly how you're feeling! It took me several months of worst pain even before i was told to try ibuprofen! and then some steroids but ibuprofen helped soothing 5 days. I want taking it in first place because it wasn't helping with pain but it turned to work miracles in the infection in my thyroid. 5 days and my nodules were almost gone but that after 3 months of making me believe I possibly had thyroid cancer and referring me for an urgent thyroidectomy! Which btw, I refused and now so endos are telling me was the best decision made! Just tell them about possiblity of Subacute thyroiditis. Mine was triggered by stress and COVID! Don't let them send you home without full thyroid panel bloods and a scan! Honestly! It's heartbreaking to hear that people are so neglected! And such thyroid misbehaviour is serious! Good luck! 💕
I think this is what has led me to be so poorly I have been massively neglected I have had 5 appointments with an endocrinologist only one face to face I have had 6 blood tests during the year or so and never my full blood count so I don’t have a clue how my vitamin levels etc are. The lack of care has really sent me spiralling. I’ve now had to leave my job which I love and was only mine without anyone else what I worked for. I’m just so upset. Someone advised me to lie when I get there and say I’m struggling to breathe becAuse they are not taking me seriously. You can physically see my thyroid and I have not eaten since Saturday I’m at my wits end 🤦🏻. Thank you For your comment and I am certainly going to mention it all x
This is crazy. Absolutely! Not that you have to, but make it sound like it's even more serious! Terrible to say this but if they are not doing anything, then that's the last option. Don't worry about the job now, you don't need another stress! Thyroid is so sensitive to stress! your tsh is so low! so you are very anxious and irritable which is absolutely normal with such hormone imbalance. I remember constantly shouting at people even when driving. It was horrible! NHS endo didn't even do any good interview with me, she was hung up on the idea it's cancer because I grew up 600km away from Chernobyl disaster. That all she cared for and immediately wanted to remove half of the thyroid. Thank God for my guy feeling and Dr Google!. I was lucky enough to have private care through partners work. I never used it until then and find a really good endi who confirmed my own diagnosis! Back then it helped but for follow ups private care is a nightmare. Anyway. You're important here and to get you scanned and properly checked. They should admit you! If you have thyroid storm this isn't something to ignore.
exaggerating symptoms in A&E is usually very counterproductive .
A& E staff are dealing with people who are 'laying it on a bit thick' to get pain meds etc etc etc , all day~ every day ~ 365 days a year ..... they develop a very robust 'radar' for detecting people who are exaggerating ..and once they get the impression someone is exaggerating they will be LESS concerned about them , not more .
They know from experience to be far more concerned about 'the quiet ones'.
So be firm and be persistent in explaining HONESTLY what your concerns are Chara.
'Thyroid storm' is very specific and very serious condition ...not all hyperthyroidism leads to 'thyroid storm' even if the T4/T3 levels are extremely high ... it takes 'something else on top of the pre existing hyperthyroidism' to kick it off , and it will often end up with being treated in the Intensive Care ward ........so again ~if people go round saying they are 'having a thyroid storm' when they are not ... it doesn't help their genuine concerns to be taken seriously.
basically my thyroid is over riding everything they are giving me they said it’s too high for the iodine treatment and because the levels are so high it’s making it swell quite a bit I’m on steroids for the swelling and pain but nothing seems to be happening yet they’ve stopped the PTU but all my vitamins/white blood cells were extremely low so it’s not surprising how I’ve been feeling really x
I hope they'll try for longer on steroids and supplementation to optimize you before taking it out. I hope you'll feel better soon! Did you mention Subacute Thyroiditis?
I did but I didn’t have a temperature so they didn’t feel it was that. I’ve got an ultrasound in the morning to make sure they are able to. I feel like I’ve been taken seriously this time around x took an admission lol x
ST lasts 2 years. I had temperature only after the initial 6 months of overactive thyroid which was not caught on bloods! Then eventually fever started, pain so bad I couldn't cope and nodules. It's a very rare and complicated illness but after my initial scan I knew what it was. Sadly Doctors pushed and pushed for removing thyroid and after it was treated with ibuprofen and steroids and giving them my own diagnose and changing endo, it was agreed this was ST. Honestly, it was such a battle! They think you don't need thyroid so any issue with it, they are happy to remove! I recently asked my ebdo why he thinks it was my best idea not to remove it. He said that as any surgery, this brings risks, your vocal chords can get damaged so can parathyroid. Also, ST can leave no damage to thyroid which after about 2t years should get to normal function. You'll know if it's ST if they see in scan GIANT CELLS! It's what defines the illness. The only reason why I'm suggesting all this to you, is that I know what it cost me to get where I am now. ST symptoms are very specific. Illness starts with overactive period which can last few months and you'll have no fever etc but typical hypo symptoms, some ppl have no symptoms. Then tsh will normalise but you'll have goiter, nodules, giant cells in scan. Your neck will be very tender and painful. Pain radiates to jaw, ear, back of the neck and head, you can have fever. Pain is very strong but not everyone will get it. It usually attacks one side but I got it first in right half for several months than it also attacked my left side which was even more painful. Pain was so bad I would sleep for 3h at night and wake up in tears and sometimes felt like my jaw is in some painful spasm. I'll never forget this! Only paracetamol would help which I took for 3 months every day. This was a result of covid and it is caused mainly by viral infection. There's a lot of studies now tho prove that COVID has terrible effect on thyroid and in my case, COVID jabs as well. Anyway, I felt like sharing my experience in case you case is similar and you might get different ideas. I know few people who also got subacute thyroiditis post covid. I didn't put those two together at first because it was few months after covid when I realised I'm not well, about 3 months before nodules appeared in my neck, pain and little fever. I'm glad they are taking you serious now and either way, if you have it removed, you'll feel finally better!
your situation was rather different to Chara's .. when they were suggesting a thyroidectomy for you , you no longer had dangerously high levels of thyroid hormone. your T4 and T3 levels at that time were back to normal. They suggested a thyroidectomy in your case because they couldn't rule out cancer of the thyroid , not as a method to deal with dangerously high T4 and T3 levels.
Subacute thyroiditis can have high levels of T4/T3 too , but they don't last for as long as Chara's have .....
Steroids reduce the periferal conversion of T4 to T3 , but they do not stop the thyroid from over producing T4 or T3 .
Chara has had uncontrollable high T4 / T3 levels for over year , and she is not able to take either of the antithyroid drugs that would prevent the thyroid continuing to make too much T4 /T3 .....she has been on them for over a year and they have not worked to lower her T4/T3 levels , and now it looks like she may have had a reaction to the PTU as well , which is potentially dangerous for the liver and means it must be stopped and cannot be used as a method of keeping the thyroid under control .... so removal of the thyroid (or RAI ) is now the only remaining option to lower her dangerously high levels of T4/T3.
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