I have had a Grave’s disease relapse having come off treatment at the end of 2020.
This time the symptoms came on very very quickly (GD confirmed by GP Blood test) and now I find that I am absolutely incapacitated. I can’t walk up stairs, uphill is a massive struggle. Yesterday I couldn’t even step up onto the bus it was so humiliating.
I am back on the carbimazole and propranolol waiting for a pointless consultant appointment but wanted to know if anyone had experience of this and what would help.
To be honest it’s making me feel so depressed. I am self employed and can’t work at the moment.
Thank you for reading
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Portabella
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Have you had a blood test to check TSH, FT3 and FT4 levels Portabella? When did you last check key thyroid vitamins (ferritin, folate, B12 and vitamin D)? Can you share any results with us?
A relapse must be very hard for you to cope with; it’s important to rest as much as possible to give your body time to heal. Has the propranolol helped ease any palpitations/ heightened anxiety?
4 years ago it was advised that you should find out if actually the Graves antibody blood test had been run as you only had over range TPO antibody readings which is generally indicative of Hashimoto's Auto Immune Disease.
For Graves you need postive and over range TSI - a thyroid stimulating or TRab - a thyroid receptor blocking antibody reading and range -
Both Hashimoto's and Graves start off the same way -
but Hashimoto's over range thyroid hormones are transient and fall down back nto the range by themselves -
whereas with Graves, without medication, the thyroid levels rise higher and higher and is considered life threatening if not medicated with an Anti Thyroid drug such as Carbimazole or Propylthiouracil - PTU.
Hello there,I have Graves disease and my legs have been affected.Aching knees and lack of strength in muscles.When I was first diagnosed I was climbing some stone steps while on holiday and my legs just gave way under me.Good job I was holding the handrail.I think Graves does cause muscle weakness.I had a thyroidectomy June 2022 as I relapsed badly within 2 weeks of stopping block and replace.I don't regret it but am trying to sort my levels out still.Wishing you well.
It's no bother - we are here to help and support each other - we do understand and why we are here - so always ask questions - you are no bother - and helping you - helps many others who read but do not write anything -
Do you have access to your medical records as the Graves antibody reading may well in there if your scroll back far enough.
Graves is an auto immune disease for which there is no cure - all the NHS can do is prescribe the Anti Thyroid drugs and beta blockers which put you into a holding position - much like a plane waiting to land -
while we wait for your immune system response to calm down.
Quite why your immune system has been triggered is the 64 million $ question and though no 2 people's journey with Graves is the same - common triggers appear to be stress and anxiety.
We should only supplement vitamins and minerals as needed when we know our individual results and ranges and it is best to buy top grade A1 grade individual supplements rather than multi vitamins that tend to not have enough of any one thing in them and of an inferior quality.
The NHS generally allocate around 15-18 months on the AT drug which semi-blocks your new, own, daily thyroid hormone production so slowly your high T3 and T4 readings should fall back down into the ranges and your symptoms relieved -
the Propanolol also acts by slowing down the rate of conversion to T3 - which is the active hormone that causes all the problems.
You should receive regular blood tests and monitoring as quite where your T3 and T4 need to be in the range to give you back your wellness is down to fine tuning and adjusting down the AT drug as your thyroid hormone fall back down the ranges and level off -
and if your T3 and T4 fall too far through the ranges you risk experiencing the equally disabling symptoms of hypothyroidism.
We do now have some research which may well be of interest to you :-
This first one suggests the longer the patient stays on the AT medication the better the long term outlook for the patient - so conflicts somewhat with the current NHS trend :-
This second one warns of the longer term health outlook for those who are treated with RAI thyroid ablation - and again - somewhat conflicting with what many in mainstream medical see as the first and sometimes only line of definitive treatment :
No worries - don't be alone with all this information - overthinking everything comes with the territory and we can explain anything that you need clarification on and also read and advise on all your blood test results and ranges.
I had no one going through all this with Graves back in 2004 -
Hopefully, once your FT4 and FT3 are back in range, your muscles will be much improved. Don’t allow your Endo to overdose you on Carbimazole as having too low thyroid hormones cause the same issues with muscles, especially thigh muscles.
I know how you feel. I was sick with Graves back in 2012 and felt awful. I couldn’t eat, speak, walk, it was a complete breakdown. It took me ages before I could walk at a normal pace again and climbing the stairs took much longer, months…
I am also self employed so I understand your worries, but what I’ve learned is that your health is the most important thing. Please try to rest and be patient with your body. Let people help you and try not to worry too much. Things will get better, it just takes time.
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