I’d appreciate a PM if anyone can recommend an Endo who specialises or is experienced in treating Graves’ disease in London or ideally SW London. I’ve been on NHS waitlist to see someone for three months and have only now started to get heart palpitations which are concerning so wanting to commence treatment incase things deteriorate further. I am happy to go private to expediate this.
I also have elevated liver enzymes. I’ve tried GF / DF diet, avoid caffeine and tried taking Bugleweed and lemon balm for about 4 months with little success.
Many thanks in advance to anyone who can help!! 😊
For reference these are my results:
TSH mlU/l 0.27-4.2
0.01
Free T4 pmol/l 12-22
46.5
Free T3 pmol/l 3.1-6.8
18.9
Thyroid
Peroxidase Ab TpoAb IU/ml <5.61
35.99
Thyroglobulin Ab-TgAb IU/ml <4.11
150.9
Anti-TSH Receptor (TRAb) IU/L <1.23
8.72
B12 145-569 pmol/l
548
Vitamin D 50-200 mol/L
66
Folic Acid 10.9-84.5 nmol
32.7
Ferratin 13-150 ug/l
59 was 110
Magnesium 0.66-1.07
0.82
Zinc 11.07-19.03
13.4
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Gravie
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I'm sorry but I have no knowledge of who you should make an appointment with -
Thyroid Uk - the charity who supports this forum hold a list of patient to patient recommended endos and thyroid specialists both NHS and private - maybe contact admin @thyroiduk.org - and get this list sent to you ?
You can also ask about a medical profession on this forum but your relpies will be by Private Messages - which is another screen - as we are not allowed to openly discuss anyone on this open forum - top right on my lap top there are a number of icons - and the PMs come through on the Chat ( paper plane ) icon :
There is no cure for this Auto Immune disease and quite why your immune system has decided to turn and attack your thyroid, rather than defend it, the 64 million $ question.
Your antibodies for Hashimoto's are also positive and over range - but Graves Disease treatment takes precedence as considered life threatening if not medicated with an Anti Thyroid drug.
There's likely a genetic predisposition with a family member a generation away from you with a thyroid health issue and something has triggered your immune system to go on the attack -no 2 peoples journey with Graves is the same though stress and anxiety tend to be common triggers.
Presume you have been put on Carbimazole while you wait for the NHS appointment -
all this does is semi-block your new own daily thyroid hormone production and slowly your T3 and T4 will fall back down into range and hopefully your symptoms alleviated.
There is an alternative to Carbimazole - Propylthiouracil - PTU :
A better blocker can also be prescribed to take the pressure off your heart - Propranolol is generally prescribed as this also slows the conversion of T4 into T3 and can help alleviate symptoms.
The NHS generally allocate a treatment window with the AT drug for 15-18 months and the hope is your immune system has by then had enough time to calm down and your thyroid can revert to normal function without the need for any drugs.
Should remission not be found there is the option of definitive treatment which means loosing your thyroid - which is a very drastic solution - but for some seen as necessary -
However we do now have some research that you may like to read :-
If you would like to read around Graves - I found Elaine Moore - books and website the most well rounded of all I found - though too late for me though as I had RAI thyroid ablation back in 2005 - and became much more unwell some years later and found no answers in mainstream medical and found myself sorting myself out - elaine-moore.com
Thank you Pennyannie for such a prompt and thorough response, I am very grateful. I’m sorry to hear your story, it is very difficult to know what to do and glad you have been able to help yourself through alternative resources. I have been trying to do similar. I was prescribed carbimazole but yet to take it as I was hesitant to commence without being under the care of an endo as I also have a history of low white blood cell count combined with the already elevated liver enzymes since diagnoses and none of the usual Graves symptoms (no weight loss but a little gained, no insomnia, loose stools or heart palpitations, improvement in menstrual cycle). I was worried of experiencing side effects from the carbimazole when I was feeling well and saught to alter my diet and lifestyle in an attempt to bring numbers back into balance. Now things may be changing and not sure this may be the best approach moving forward so appreciate you pointing me in the right direction! Wish you all the best.
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