I’ve been diagnosed with Graves’ disease and TED, currently not seeing anyone for the TED and under a endocrinologist for the graves.
My initial result were very high TS3 And TS4, my TSH continues to be less then .02
My last bloods show T3 in range and T4 9.8 which is now under range
I’m really struggling with low mood and extreme fatigue, and my eyes are sore and twice been blood shot and swollen.
I seem to between a rock and hard place as GP cannot do anything without Endo advise, and the endocrinologist secretary has a letter to send out but won’t tell me what it is and can’t say how long it will take to send as they are short staffed.
I understand NHS is overwhelmed but I’m suffering and it just feels like it’s not an issue for them to sort between themselves.
I’ve given up one job due to stress and long hours and now have a new employer which is less stress and hours but I can’t afford to start taking time off.
I would like to know which blood tests would be good to get done from my GP as I never know which ones they are doing, and then what to look out for apart from the ones above.
What can I do to help my symptoms and be able to actually live my life instead of just existing.
I have looked at a AIP diet but it’s too restrictive with working in a office.
Any help or advice would really be appreciated
Thanks
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Gabanna
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Hi slowdragonMy endo said I had graves diseases as I had antibodies but apart from the TSH t3 and t4 they haven’t shared any other results.
TSH Jan >.02 (endo said this was the lowest result nhs reports) not moved since then.
T3 jan 11.2, april 11.0 Jun 4.6
T4 jan 39.2 april 25.2 Jun 9.8
Currently on 40mg carbimazole and 40mg propanol .
I can ask for my full results, but since jan only these and liver function tested.
As been out of work do not have lots of money for blood tests, and need new glasses as struggling to see computer at work again.
Have asked endo to refer me to ophthalmology, I thought she already had been waiting since mar for an appointment and now told she hasn’t referred me. Will ask GP to refer asap as well.
Currently seeing cardio as well as breathing is not as it should be.
the jun results on my post were just over a week ago, they are testing them every 6 weeks but only liver function and thyroid. I wonder if should be more often as I am swinging one way or the other within 6 weeks. I had them done after 4 weeks in April as I had really bad hyper symptoms again, and I had gone high in T4 again, the low result is after 6 weeks on 40 mg.
Had chest tightening for the past few week so does suggest reduction in meds. But as I said in first post dr will not normally reduce until endo has advised and the secretary has a letter to type put and but can’t tell me when it will go to go or me as they are behind. ! I asked whether it would be a week or month and she said she doesn’t know.
Waiting for GP to call me but just having to chase them or the endo at the hospital all the time.
I’ll ask about testing for iron etc but that’s as normal back in Jan (I think)
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Graves is said to be a stress and anxiety driven auto immune disease and can occur through a sudden shock to the system.
There is general a genetic predisposition with someone in you family, maybe a generation away from you, dealing with a thyroid health issue.
It can occur simply out of the blue or maybe if you look back you experienced a sudden shock, like a car accident or the unexpected death of a loved one, or living through an extremely stressful period in you life.
Your thyroid is the victim in all this and not the cause, as the cause is one of your immune system having been triggered to go on the attack.
When Graves attacks your thyroid it is because the thyroid is such a major gland that the symptoms experienced are considered life threatening if not medicated.
The NHS generally allocate a 15-18 month window for treatment with anti thyroid drugs, like Carbimazole and it is common that a beta blocker, like Propranolol is prescribed if you experience symptoms involving your heart.
This first phase of the disease is to try and control / block your own thyroid hormone production rising any higher, alleviate symptoms and have your T3 and T4 in range.
The hope is that your immune system calms down, and this immune system response a one off , your antibodies reduce, and you will be able to stop all drugs within the time frame allocated.
Your TSH will be very low as this is the nature of the Graves antibodies as they tend to cling onto, ' sit on ' , TSH receptor sites driving down this TSH reading :
A bit like one's foot being stuck down on an accelerator pedal.
You can't do anything about this and the TSH may never respond in a ' normal ' manner after Graves Disease has been triggered.
There are two main sets of Graves antibodies - a TSI ( a thyroid stimulating ) and a TR ab ( a thyroid receptor blocking ) antibody and one of these two sets will have been positive and over range and the medical evidence of your diagnosis and treatment plan.
At any one time one set of antibodies will have dominance over the other, and there is also a middle ground where these two extremes of symptoms outweigh / offset each other and in this middle ground, you might feel quite normal - for you - at any given time.
It seems to me that the AT drug needs titrating, adjusting down, so not to block as much of your own thyroid hormone production as was needed at the beginning of your treatment.
The AT drug is a bit like being put on automatic pilot as it's controlling your thyroid hormone production and it needs fine tuning as you risk going from hyperthyroidism - over range T3 and T4 to hypothyroidism under range T3 and T4 levels which is equally disabling.
You may find it quicker to contact the Thyroid Eye Disease charity as they can signpost you to outpost clinics throughout the country where you may in fact be monitored and dosed by an ' on site ' endocrinologist as well as be seen by an eye specialist.
In the short term please ensure that whatever drops, lotions or potions you may use, to ease your eyes, are Preservative Free.
I found the most interesting and well rounded website on Graves is that of Elaine Moore and it will be in your best interests to read up, and have some understanding of this poorly understood and badly treated AI disease.
Rest, be selfish with your time, and try and find ways of relaxing and doing things you enjoy.
I'm sorry you have had to resign from your job, that in itself can be stressful and brings a whole other layer of stress - could you not be ' off sick ' and claim some benefits until better placed health wise to return to work ?
I received great advice from TEDct so well worth phoning their advice line for a chat & to get an information pack. They helped me to find a TED specialist ophthalmologist in my area, which really helped. They also have a Facebook group and hold webinars.
Preservative free eye drops such as HycoSan or Hyloforte are great (use as often as needed). It’s recommended to take a 200ug selenium supplement for 6 months (reducing to 100ug when symptoms ease). I also take lutein and zeazanthin for overall eye health . sleeping with your head on 2 pillows can help reduce overnight eye swelling. I wear sunglasses or reactive lenses as light sensitivity is a big issue for me. For eye pain, I was recommended ibuprofen, but remember to take this with food if you choose this pain relief option.
Keep posting if you need any further support. Very best wishes to you.
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