I was diagnosed with Graves' and they started me on Carbimazole (now on 20mg) and beta blocker Propranol. I have lost much weight and suffer from anxiety/palpitations - although this comes and goes.
My concern is the level of care and supervision I am receiving - there appears to be no endocrynologiust available and my GP does his best - starting me on the treatment above.
So I am a 61 yr old male with no previous health conditions - I have had an initial blood test (Nov 2020) and one subsequently (Feb 2021).
I also have the puffy eyes and constant weeping.
I hostly do not know what to do as this is completely new to me.
Thanks for listening
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samsdice
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I have a lot of information to share. Don’t be overwhelmed. Take your time, it will all fall into place, ask anything you need to.
Was 20mg your starting dose? Has it been lowered?
Ideally, 6 weekly testing is conducted and dose adjusted to prevent thyroid levels remaining too high or falling to low.
How much propranolol do you take? Do not stop propranolol abruptly make sure you reduce gradually when stopping.
Have you had a full thyroid evaluation? Obtain a print out via reception of any blood test you have had or arrange online access with your GP surgery. Don’t accept verbal or hand scribbled notes you need a copy with ranges (ranges vary between labs). They shouldn’t ask why but if they do just say for your records.
TSH
FT4
FT3
Folate
Ferritin
Vitamin D
B12
Was your Graves diagnosis confirmed? what Thyroid antibody test have you had?
TPO ab
TG ab
TRab & TSIab if Graves suspected.
GP often do not complete full testing, sometimes specialist do not either. GPs should consult specialist before commencing carbimazole.
Please report your eye issues to your GP urgently. This may be thyroid eye disease (TED) tedct.org.uk is an informative site about the condition.
Early diagnosis and management of TED is very important. Graves & TED are managed by separate specialists. One condition can worsen while the other improves.
Some areas have urgent eye care via high street opticians. Many find opticians offer helpful advice & a referral letter via GP or (depending on area) can liaise directly with hospital ophthalmology. Might be worth calling around and seeing what services are available.
Recommend you keep a diary of your symptoms and note any new or changing symptoms. Record when you start taking medications or supplements. Make sure you get into the habit of obtaining test results to keeping track of your levels. Once you understand the results and how medication is affecting you will help be your own advocate.
Generally carbimazole treatment is given for around 18 months as Graves can go into remission. Some choose to remain on carbimazole at a lower dose long term.
Medics tend to recommend definitive treatment such as surgery or Radioactive iodine treatment. Such treatment result in hypothyroid and referral back to GP for management. Medics view hypothyroidism as an easily managed condition (and the majority of the time it) but full testing is not alway completed & many on this forum and the main thyroid forum have struggled to find the help they need.
NHS usually offer Radioactive iodine treatment as 1st option which ablates the thyroid, if you have contact with young children, pregnant women or TED this treatment wouldn’t be suitable.
Do all the research you can and don’t be rushed into a decision.
Thank you so much for your reply and information - which I am studying. I will get my results asap - and get back to this amazing forum. So as I understand it I need a test very 6 weeks so I am overdue now - I will conctact my GP tommorow when they re-open.
I was diagnosed with Graves Disease when age 56 and I was suffering with insomnia, dry gritty eyes and exhaustion.
It's imperative that you are confirmed as positive and over range for the antibodies unique to Graves Disease and these are general written as a TSI ( roughly translated as a thyroid stimulating ) antibody and or a TR ab ( roughly translated as a thyroid receptor blocking ) antibody.
There is more than one reason to become hyperthyroid, and depending on which antibodies confirms the diagnosis and the medical evidence and on which the treatment is based.
Do please get copies of all your blood test results and ranges, and if you have the blood test results prior to starting the anti thyroid medication that would be useful to see.
I imagine a low TSH and very high T3 and T4 blood test result:
The Carbimazole is an anti thyroid drug which will stop your T3 and T4 levels rising any further and slowly you numbers should com back down and you symptoms become more tolerable and hopefully the beta blocker Propranolol will not be necessary long term.
Graves is said to be a stress and anxiety driven auto immune disease and it is because the thyroid is such a major gland that when this disease attacks the thyroid the symptoms expressed can be said to be life threatening in some people, if not treated.
You might like to start reading up on Graves as it does appear to be a poorly understood and badly treated AI disease and would suggest the Elaine Moore Graves Disease Foundation website as the most well rounded of all websites, and pays particular attention to the AI component of this disease which current mainstream medical do not understand, and offers options of more holistic, alternative actions to calm down your immune system response.
I'm with Graves post RAI thyroid ablation in 2005 - a treatment I deeply regret - and I now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating.
By the sounds of it your metabolism has got stuck in overdrive, hence the weight loss.
Yes, you could be eating for England at this point time and loosing weight:
With such a fast metabolism it's essential that you try and keep your core strength strong and solid and suggest you ask for your levels of ferritin, folate, B12 and vitamin D and even though these maybe come back in " in range " that doesn't mean that you do not need to start supplementing - again post the results and ranges and you be talked through anything that looks amiss.
Yes, Graves is considered life threatening if not treated because without a fully functioning working thyroid you are not going anywhere, anyway.
However I do believe all patients should be seen and treated as individuals as in some circumstances it does seem as though the solutions offered are that similar to taking hammer to crack a nut :
The thyroid is a major gland, referred to by as some as the body's engine - others prefer the analogy of the thyroid being the conductor of all your bodily parts including the wind section and it's so true.
The thyroid is not the cause in all this but the victim :
The cause of all this is your immune system attacking your thyroid :
Look at what, if anything, has caused your immune system to go haywire like this :
This is, I believe, the start of helping yourself understand Graves and your situation.
Dear Samsdice,I hope you wont mind reading a bit of a story.
I feel your worry about dealing with Graves and frustration that not much help is available.
I faced the same situation not long ago in January this year.
Puffy eyes pushed me to get my blood tested to find out my thyroid hormones were over 200% over the range. GP put me on 40mg carbimazole without explaining much over the phone.
On reading about hyperthyroidism I began analysing my symptoms and ticked lots of boxes : loosing 6kg in 2 months without any reason, feeling hot, hearing my heart, irritability and oh, those puffy eyes..., tinnitus. I never had any problems with my health, so dismissed all the above for a couple of months .
What helped me to push for endo referral is that I mentioned I had been raised in the country that was impacted by Chernobyl otherwise I'd be waiting for a year for a public Endo ( in Ireland).
To tell you the truth though I got seen by a private Endo 2 months later, to my disappointment I didnt get any questions answered. I got referred to an ultrasound as well as an uptake scan. But i never got my antibodies specific to Graves tested just got prescribed carbimazole for the next 4 months without any regular blood testing.
Why I'm telling you my story... I'm not trying to overwhelm you . I do agree with PurpleNails and PennieAnnie , educating yourself about this badly understood condition is important. I wish you luck to come accross a good specialist.
Take a deep breath , lots of them and try to take it easy on yourself. In the beginning it might be too much information but it will make sense very soon. Knowledge of the condition will help you make informed choices.
I do hope your GP will be proactive or at least sympathetic and ready to test regularly. Mine is not and testing every 6 weeks is a problem ( due to some protocols, resources limits, etc). Thankfully, There are lots of private laboratories in Britain available if NHS dont agree to do tests.
All members on this forum are the most helpful and knowledgeable. Please do not hesitate and ask them all the questions.
It helped me a lot to hear the explanation that thyroid is a victim and the root problem needs to be looked for and addressed. Doctors never mentioned that. I personally dont like thinking that my immune system is attacking my thyroid without any reason. I do believe our bodies are very clever and very well designed.
The triggers can be anything from environmental impact , untreated viral and bacterial infections, trauma and/ or stress ( immediately before the flair or continuous for many years) etc... Some connect autoimmune disorders with psychosomatic triggers ( caused by unresolved issues with important people in our lives, unrealised dreams, being too hard on ourselves, controlling too much, etc)
With overactive thyroid I personally found any calming practices helpful ( restorative yoga, meditation, taking it easy, good sleep routine, massage, sound baths, gentle walks).
On other members' of this forum recommendations Ive been supplementing myself with vit D3 + K2, magnesium, B complex , vit C. My GPs stated that my vitamins were in range, hence no need to take any supplements. But in range is a very vague notion. My numbers in fact were in the low range nearly our of it. Graves patients loose nutrients faster due all the organs overworking. I feel so much better after supplementing the above.
Neither GPs nor endo could explain my puffy eyes. I havent gotten a chance to see an ophthalmologist about it yet. If you come across any useful information about this symptom, please let me know.
I wish you best of health! It's ok not too feel ok, hope you get better very soon.
It’s becoming quite common for people diagnosed with Graves’ (did you have a TRAb or TSI test ?) to begin taking carbimazole under the care of their GP, but given that GPS have relatively little experience of Graves’, this should be under the supervision of a specialist and with more frequent testing than appears to be the case.
An endo would be asking about your eyes every visit, at least until you reach the point where they were confident you would spot and report any changes for yourself. It’s peak tree pollen time at the moment, which could be causing some of your eye problems, so you could try some over the counter antihistamine. You could also book an appointment for an eye check with a ‘high street’ optician. Tell them you have been diagnosed with Graves’ so they will know what to look for. If you do have signs of TED, they should be able to help arrange a referral, but for many people, a watching brief or eye drops may be all that is needed.
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