What a wonderful site this is. I have learned more in the past 2 hours scrolling here than I have in the past 6 months.
My story in brief. I had open heart surgery in November 2023 after suffering from a “Widowmaker” heart attack. Afterwards I was given an amiodarone intravenously as I went into atrial fibrillation. I attended cardiac rehab sessions and I thought I was making a great recovery until mid February 2024. I suddenly started getting atrial fibrillation, my muscles became sore, my joints were painful, I felt anxious, I couldn’t sleep, I kept getting hot and sweaty. I visited Accident and Emergency. I visited Walk In Centres. I had upteem GP visits. I was seen by the Cardiac Arrhythmia dept. I was getting worse and worse. I’d convinced myself I was dying. I kept pestering my GP. I was very distressed. Fast forward to an appointment in June 2024 when I saw a locum GP. They took a blood test. Next day, I received a phone call. I had an overactive thyroid, I was immediately prescribed 20mg Carbimazole daily.
TSH <0.05 T3 15.5 T4 42.3
I had an urgent referral to Endocrinology. By mid August, I was told that I had Trab antibodies and Graves Disease. TSH 19.00 T4 8.0 I had swung to being under active and was by then suffering from sore muscles, sore joints, peripheral neuropathy and hair loss but I no longer had atrial fibrillation. I was also feeling less anxious. I was told to reduce carbimazole to 10mg daily.
I was feeling much worse as opposed to better throughout September and October. I finally rang the endocrinologist’s secretary and asked when I could expect a review. I received a call advising I would get more blood tests early December. The results are in TSH 32.29 T4 6.3. I’ve now been told to take just 5mg Carbimazole daily.
I am female, 60 and very fit. I exercise daily despite my fatigue and sore joints. I weight train, swim, cycle and walk. I practice mindfulness daily. I eat healthily - I only eat chicken, fish and lots of vegetables with some fruit. No chocolate, virtually no unhealthy saturated fats and very very little sugar.
My question, is there anything else that I can do to help my body? I now feel like a stranger in my own body. Is there anything I shouldn’t be doing?
Thanks to anyone that takes the time to read my post. And, special thanks to anyone who takes the time to respond.
Toni
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ToniMac
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To have gone so very, very hypo so quickly doesn't sound like Graves' to me - although, admittedly I'm no expert! But it does sound like Hashi's. TRAB are often high with Hashi's so they are not the be-all-and-end-all of tests for Graves'. What you need now are TSI tested to see if it is Graves', and TPO antibodies and Tg antibodies to see if it's Hashi's.
With a TSH of over 30 you should not be exercising so hard. It will make you more hypo. Just gentle walking or swimming until you get that TSH back in range. No driving, either. One is not fit to drive with a TSH over 20.
Make sure you eat enough carbs, too. You need carbs to convert T4 to T3.
And it would be a good idea to get your nutrients tested: vit D, vit B12, folate and ferritin. These could be low, making you feel worse.
Many thanks for your helpful reply. I have been taking 5mg of Carbimazole daily since then. I did try 2.5mg daily but that made me feel anxious within 2 days.
The NHS would not run all the blood tests you suggested but I have managed to have them all done (including minerals and vitamins) except TSI privately.
I have a private consultation to go over my results on Monday, 23rd December. I will then create a new post here.
I will ask again about how I could go about getting a TSI blood test but hopefully the results I do get will prove helpful and insightful.
Going from hyper to hypo in 2-3 months on a 20mg dose carbimazole is quite quick.
TRab) TSH (or trytropin) receptor antibodies - measures stimulating, neural & blocking antibodies. The stimulating antibodies is what result in over production of thyroid hormones. but the test doesn’t distinguish between the 3 different types.
If you have hyper levels & TRab, medics accept diagnosis as Graves & treats as continuous hyper.
There are other thyroid antibodies. Ask for:
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies)
These signify autoimmune, & are often elevated with graves & highest with Hashimoto’s(autoimmune thyroiditis).
Hashimoto’s can start with transient hyper ultimately hypothyroid.
Graves is a poorly understood and badly treated Auto immune disease which generally only gets diagnosed when the immune system starts attacking the thyroid and or eyes -
both major organs and glands that we would struggle to live without.
There 's generally a genetic predisposition with Graves with maybe a family member a generation away from you with a thyroid health issue - and can be triggered by a sudden shock to the system - like a car accident or unexpected death of loved one - or it can seem to appear totally ' out of the blue ' -
no 2 peoples journey with Graves is the same and probably why it's so poorly understood though we do know the stress and anxiety are common triggers.
Graves tends to cause a low suppressed TSH and high over range T3 and T4 readings but must be confirmed with either TRab - a thyroid blocking ab or a TSI - a thyroid stimulating ab - or with a TSH Thyroid Receptor ab reading being positive and o/range -
as there is more than 1 reason for high o/range ab - and basically when the thyroid is under attack - there will be some overlap of other abs but - if Graves abs are found - Graves treatment takes precedence as Graves is said to be life threatening if not medicated.
With Graves the Blocking and Stimulating ab can switch as they both vie for control of your thyroid and this can cause something of a roller coaster of symptoms but without any of the fun. and if given enough time, some Graves can burn itself out - with your thyroid reverting to normal function without the need for any drugs.
The treatment is with an Anti Thyroid drug - either Carbimazole or Propylthiouracil - PTU - and all this does is semi-block your own new daily thyroid hormone production while we wait for your immune system to calm back down again and your thyroid return to your ' normal ' :
The NHS generally allocate a treatment window with an AT drug for around 15-18 months at which time ' remission ' is encouraged and if not found there is the suggestion of definitive treatment - a thyroidectomy or RAI thyroid ablation - and then being classed as primary hypothyroid and on medication, for the rest of your life.
Of all I researched the writings of Elaine Moore - books and website, the most well rounded -
elaine-moore.com - though too late for me as I had RAI thyroid ablation 2005 when I knew nothing - and became much more ill some years later and now I self medicate as the NHS refused to prescribe me the most appropriate treatment option in 2018 which I now buy for myself and am much improved.
P.S. Please stop exercising - there can be heightened brain / body mismatch in expectations - with your brain in over drive and your body unwilling and stuck in neutral or reverse - it reads as though you have been left on too much AT drug for too long and now very hypothyroid -
likely your core strength vitamins and minerals will have dropped and we need a strong core of ferritin, folate, B12 and vitamin D to support us through this phase of ill health -
and we need Free T3 and Free T4 blood test reading and ranges regularly - every 6-8 weeks - with a view to maintaining T3 and T4 at around mid way through the ranges - while we wait for your immune system response to calm down again.
Hi. You can swing to underactive with Graves’. I have in the past and taken ThyroidS during this period I do not have Hashi’s a top consultant has scanned my thyroid gland and told me so She has seen thousands of thyroid glands and is an expert and mine is typical of a Graves’ disease sufferer
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