Do you have any initial blood tests showing T3 and T4 blood test levels and do you have confimation and the medical evidence of positive and over range Graves antibodies which are usually expressed as either a TSI ( a thyroid stimulating ) and or a TR ab ( a thyroid receptor blocking) antibody .
The Carbimazole is an anti thyroid drug and blocks your own thyroid production so your T3 and T4 can't rise any further and within a week or two you should start to feel more comfortable. There is an alternative to this medication if you experience side effects and trust you have been given the Patient Information Leaflet and know what symptoms to look out for.
Graves is said to be a stress and anxiety driven auto immune disease and can be triggered by a sudden shock to the system, like a car accident or sudden death of a loved one, and there can be a genetic predisposition, possible someone a generation away from you who has a thyroid health condition.
The thyroid is a major, very important gland, and the body's engine and regulator of your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Graves needs to be medicated as the symptoms can be diverse, confusing, some odd whilst others considered life threatening in some cases because the thyrod is an integral part of the body system.
The NHS generally allocate around a 15-18 month window for treatment with the AT drug and some endo's talk of finding remission whilst others seem to encourage the more drastic action of thyroid removal at a very early stage in the treatment phase.
There are treatment options and many people stay on the AT medication long term rather than loose their thyroid to an AI disease and it will be in your best interests to read around this subject when you feel better placed.
You might like to dip into the Elaine Moore Graves Disease Foundation website and read up on this poorly understood and badly treated AI disease.
You might like to start reading up of posts no here and also looking into the Thyoid Uk website who are the charity who support ths amazing forum.
I'm with Graves diagnosed 2003/4 and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease, caused by the RAI, and hypothyroidism and became very poorly some 8 years post this treatment which I deeply regret and if I had my time again and given a choice, I would stay on the AT medication.
Well, I remember when my doctor started me off on Carbimazole whilst I waited for the hospital to contact me, he said should I have any issues to go direct to A & E :
Obviously times are very different now, and from what I read on here many people are now being treated by their doctor who is taking instruction from the hospital endo.
Your metabolism is got stuck in " over drive " and you maybe finding it difficult to sleep and turn off.
You may have a faster than norml bowel movement though with a voracious appetite and loosing weight.
Your body is at heightened levels and you may feel nervous, anxious and agitated, just hang on in there as the AT drug will block your T3 and T4 going any higher and slowly you will come back down into a more comfortable place and you will probably be totally exhausted.
When metabolism isn't quite right, and either running too fast or too slow, it's very difficult for your body to extract the nutrients it needs to keep your core strength strong and solid. no matter how well you look after yourself and no matter how nutrious your food choices.
It would be wise to ask if you could have your ferritin, folate, B12 and vitamin D levels measured as you need these at optimal levels to help support you through this phase of the disease.
It might also be sensible to arrange on line access to your medical records so you can start to monitor and understand your blood test readings and what it all means as we support you from this end.
I was never given the option of finding remission and told at my very first hospital appointment I needed to have RAI the following year.
I was given Radioactive Iodine ( RAI ) to drink to disable, burn out, damage and destroy my thyroid in situ - some people are given thyroidectomy.
Either way the thyroid is destroyed and the patient left with primary hypothyroidism - the opposite problem, which is just as difficult to treat.
However whilst being hyperthyroid is considered life threatening and requiring hospital treatment becoming hypothyroid is not considered life threatening, but most probably life limiting and treated in primary care, where doctors can't even access the appropriate blood tests nor treatment options.
I have had to resort to self medicating and buying my own thyroid hormone replacement medication as the NHS doesn't, routinely, offer any treatment options and have put myself back together again, a bit like Humpty Dumpty.
My journey back to better health is for the most part due to this amazing forum where I came asking questions around 5 years ago when very unwell, and why I now try and encourage others to read up and become their own best advocate, feel invested, and have a voice and an opinion in their own treatment process.
Hello, I have graves disease and was diagnosed by my GP in the summer of 2018.I was put on proprananol to help with the symptoms.Racing heart, tremors, sweating, insomnia, weak muscles,weight loss to name a few.This helped until I saw a hospital endocrinologist about 3 months later.I too was put on carbimazole 40mg per day and after a few weeks started to feel better.We initially tried the titration method where carbimazole is slowly reduced to try and find the correct dose to keep thyroid levels within range. However due to waiting times for my appointments my levels kept swinging either too high or too low.I could get my blood test on time( about every 5 week's) but then had a wait for my appointment which meant often the dosage change was too late.We then decided to try block and replace where you stay on a consistently high dose of carbimazole (40mg) but then slowly start to add in levothyroxine until thyroid levels are in range.I started at 25mcg then had a blood test 5 weeks later increased to 50mcg, same again and am now on 40mg carbimazole and 100mcg levothyroxine per day. I am stable on this.They wanted to see if I was in remission , so last September I was told to stop all tablets,but within 2 weeks I felt all symptoms returning, so had a blood test and my T4 levels were higher than before.I had to start again from the beginning and am now on same doses again. I am a bit worried how long they'll let me stay on it before suggesting other treatments. I know I can't have radioactive iodine as I have thyroid eye disease as well which I am being treated for by opthamologist at hospital.This site has been invaluable to me.I've learnt everything I know from here. You can just search a topic and more often than not someone has had experience of it.My tips would be to write everything down so you remember what was said at appointments ,what your levels were,and what your doses are. Also later on my end o would give me a supply of blood forms so I could book my own blood tests , ring his secretary when I'd had them done,she could then pass them onto him to look at and he rang me if there was to be a dose change.You are certainly not alone on here.People have a wealth of advice and information and when you are feeling a bit better have a look on here regarding the various topics and you'll feel better when you know more.I know I did.One last thing is you should really ask to be referred to a hospital opthamologist to check your eyes.I have a mild case but they are very uncomfortable and he prescribed drops and ointment.Your eyes are precious and it's better to be safe.Sorry for the long rambling but unfortunately patience is the one thing you need as things tend to have to happen slowly regarding treatments.Hope this has helped in some way.Best wishes to you.
Yes, sorry, I forgot to mention that if you have dry gritty eyes you need to see a specialist but in the short term you can relieve these symptoms, should you wish.
There are a multitude of OTC eye drops, lotions and potions to choose from BUT please make sure whichever you choose it must state on the product that it is " preservative free " .
I recommend you start a diary of any new of changing symptoms, medications and any supplements you take. Make notes of things you plan to discuss with your doctor and get into habit of obtaining test results and learning how to understand them. This is the best way to see your progression and help yourself ensure treatment stays on track.
Medics rarely do a full thyroid function so you need to check through your results to ensure the right things are being tested as well as checking the actual results are optimal not just somewhere in range.
You are legally entitled to obtain your own results. Request a printout of your results via reception (don’t ask doctor). Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. Or if possible arrange online access for GP records of your practice offers it, It’s really useful.
You can also contact hospital department directly for recent results or most hospital website list hospital record department and you can email for forms to obtain older records.
Full thyroid function>
TSH
FT4
FT3
Thyroid antibodies TPO & TG
Trab or TSI if Graves suspected < very often all hyper treated as Graves so essential to confirm.
Folate
Ferritin
B12
Vitamin D
You mention you have eye issues. When you see your doctors ask for a referal to an ophthalmologist who can assess you for Thyroid eye disease. As early diagnosis and management very important.
TED & Graves both stem from the immune system attack on health tissues although they can act as separate, independent conditions & treated by separate specialist.
Complications are very rare with TED, so don’t google worst case images and panic.
200mcg of selenium supplements are recommended, Check the label for absorbable forms, selenium l-selenomethionine and yeast bound selenium are best, avoid selenite and selenate.
If you weren't given a Patient Information Leaflet (PIL) by the hospital you can find various versions of it here from different manufacturers - although they should say much the same no matter who made them :
The reference to SmPC that you can download is to the "Summary of Product Characteristics". It contains information very similar to the "Patient Leaflet" (PIL), but you should read that too just in case there is any extra info.
The Risk Materials are about problems that may occur with the medicine being taken. For example, women taking Carbimazole should completely avoid getting pregnant because the risks to a baby of developing malformations are very high.
Another risk with Carbimazole is that the patient may be at greater risk of getting acute pancreatitis. If the patient has a history of acute pancreatitis before they develop hyperthyroidism they must not be prescribed carbimazole.
There is only one alternative to Carbimazole licensed in the UK and that is Propylthiouracil otherwise known as PTU. Doctors usually prescribe Carbimazole. I don't know the circumstances in which they will switch to PTU.
Hi. I have Graves diagnosed May 2020. I am on PTU the alternative to carbimazole. Welcome. I’m sure it’s a club you don’t want to belong to. It’s a hard disease. Emotionally and physically draining. You have received good advice here and u are welcomed here as well. Any questions you have you can put a post here
I have underlying graves I don't know if that is different or just not as severe. As yours was picked up in hospital it sounds like you are the referral stage so they do normally start you on a higher dose of Carbimazole, and then slowly reduce. When you do have a follow up appointment you can request and make sure they send a letter/blood test. My consultant and endo nurse send out letters after appointments which is really helpful, I didn't have to ask for this, but some people on here seem to not have this so do ask when you have an appointment.
I can log in to view blood tests my GP sends me on their online portal but the ones the hospital do wont show on the GP system which is why it is important to ask for them separately. When you do have an appointment they would go over the results on the phone with you too! When you speak to your GP I would check has the hospital already referred you to a endocrinologist or if the GP is managing this
I am now down to 5mg after slowly reducing each time when I've had the blood test every 6 weeks. The Carbimazole tends to get to work quite fast, you should start to see some improvement in a few weeks
Totally agree with PurpleNails re importance of selenium if thyroid eye disease is suspected. Also recommend preservative free eye drops like HycoSan or Hyloforte; use as often as needed if your eyes are dry. I’ve found TEDct advice line really helpful in finding a TED specialist ophthalmologist in my area. I’m very sensitive to light & wear sunglasses a lot & need night vision glasses to help with driving. One tip I wish I’d listened to; don’t overdo it on Google images…. They show worst case scenarios and the swelling does reduce with optimal medication/ treatment. My eyes now are nothing like they were 12 months ago. & I’m over the moon about that! Do keep posting if you need further advice or support.
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