I was diagnosed with Graves’ disease Nov 24 after a long period of ill health including high resting heart rate, debilitating fatigue, eye issues, Palpitations and chest pain.
I was initially put on 40mgs carbimazole.
After a few months of treatment and reducing doses of carbimazole I became hypothyroid and despite my T3 and T4 now being ‘in range’ albeit both at the low end I continue to feel dreadful. With ongoing fatigue, painful joints especially knees, swollen/scalloped tongue and burning mouth amongst other symptoms affecting mood.
I had thought I had a thyroid problem for a while before I was diagnosed but my symptoms then were more hypo rather than hyper although my GPs test of TSH only in Feb 24 was deemed in range.
blood test history is as follows:
Feb 24
TSH 5.2 mu/L (0.2-6.0) with hypothyroid symptoms but dismissed by doctor as results ‘in range’
Oct 24 - medichecks blood test as had signs of hyperthyroidism
TSH <0.05 (0.27-4.2)
Free T4 - 32.4 (12-22)
Free T3 - 15.7 (3.1-6.8)
TPO antibody 210 (0-34)
Vit D - 61.6 nmol/L
Active B12 - 57.9 pmol/L (>37.5)
Folate - 7.4 nmol/L
Ferritin - 153 mcgs/L
Nov 24 - repeat test with endocrinologist pre start of any treatment
TSH <0.05 (0.27-4.2)
Free T4 - 32.1 (12-22)
Free T3 - 13.9 (3.1-6.8)
TRAb positive - 18 (<2.9)
Dec 24 - repeat tests after 4 weeks on 40mg carbimazole
TSH <0.05 (0.27-4.2)
Free T4 - 15.3 (12-22)
Free T3 - 4.5 (3.1-6.8)
Jan 24 - repeat tests after 4 weeks on 30mg carbimazole
TSH -6.81 (0.27-4.2)
Free T4 - 8.43 (12-22)
Free T3 - 3.5 (3.1-6.8)
Feb 24 -repeat tests after 4weeks on 10mg. With ongoing symptoms of severe fatigue, mouth issues, irritability
TSH -4.52 (0.27-4.2)
Free T4 - 12.7 (12-22)
Free T3 - 3.9 (3.1-6.8)
Vit D - 41nmol/L
B12 -402 pcgms/ml
Folate - 4.37 pcgms/ml
Ferritin - 125 mcgs/L
Nowdropped to 5mg of carbimazole but have had to be signed off work due to the ongoing symptoms I am suffering and the debilitating fatigue. Also asked to take Vit D 2000 a day. Repeat bloods in 4 weeks
Any advice as to when I could expect to start to feel better. I feel like symptoms have bounced from hyper to hypo and am utterly drained. I am 53 years old and otherwise fit being a keen competitive runner.
thanks in advance
fastrun
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Fastrun
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Was your Graves confirmed with positive TSI or TRab antibodies?
Doctors often treat those with low TSH & high levels as having graves (where the immune system continuous stimulates thyroid causing hyper) but sometimes it’s turns out the hyper was transient caused by the immune system damaging the thyroid & cell releasing hormone stores.
Ultimately the damage leads to lower & lower function. Your levels are quite low now. The TSH is quite high and often becomes down regulated and appears lower than it should be.
I recommend you check what antibodies were tested.
Eyes have settled down apart from a remaining a bit dry and gritty so just using viscotears as advised by endo. Recent eye exam didn’t find anything untoward. So hopefully ok but will keep monitoring.
Was diagnosed with Graves based on TPO 210 and TRAb 18. No one has mentioned testing TG antibodies so will ask endo about that at next visit
Ah, yes, you do have very high Trab. It may be a good idea to also test TPO & TG antibodies. These tend to be elevated in Graves too but very high level could mean you have both autoimmune conditions occurring.
it’s possible (but rare) to have Hashimoto’s (autoimmune hypothyroid disease ) at same time as Graves’ disease
You need both TPO and TG thyroid antibodies tested
Looking at your results you may need “block and replace “
That’s …..block with Carbimazole
Replace with levothyroxine
Currently Ft4 and Ft3 are very low
See what results are on 5mg Carbimazole
Exactly what vitamin supplements are you taking apart from 2000iu vitamin D
Vit D - 41nmol/L
B12 -402 pcgms/ml
Folate - 4.37 pcgms/ml
B12 and folate are low
only add one vitamin supplement at a time and then wait 10-14 days to assess before adding another
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Regarding your eyes, has your endo/ optician mentioned Thyroid Eye Disease? If this is suspected, I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. If you experience light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head. Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
When the thyroid malfunctions there can be several sets of antibodies found over range and positive in your blood - and it would appear you are dealing with Graves and Hashimoto's - both AI diseases - Graves is considered life threatening if not medicated and takes precedence in treatment terms and is with an Anti Thyroid drug - either Carbimazole or Propylthiouracil - PTU.
All the AT drug does is semi-block your own new daily thyroid hormone production and ' buys you time ' while we wait for your own immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
Graves is a multi organ AI disease but generally only diagnosed when the thyroid and or eyes become involved since these are major organs we rely and need on a daily, hourly basis.
Hashimoto's is a thyroid specific AI disease and systematically sets out to destroy the thyroid and you'll likely experience ' swings ' in symptoms and hyper / hypo type symptoms but ultimately, over time, possibly years, you will become hypothyroid with some loss of your own thyroid hormone production and need to be prescribed thyroid hormone replacement.
Thyroid Eye Disease can occur independently, or alongside either of the above AI diseases.
The NHS generally allocate a treatment window with an AT drug for around 15-18 months with the view that if you do not find remission in this time frame a more definitive treatment and thyroid RAI ablation or surgery and a thyroidectomy performed - both options leaving you primary hypothyroid and needing treatment with a thyroid hormone replacement medication for the rest of your life.
Graves is a poorly understood and badly treated AI disease - there is likely a genetic pre-disposition with 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 a loved one or for some it appears to come totally ' out of the blue ' and though no 2 peoples journey with Graves the same - stress and anxiety are common underlying issues.
So, if with eyes that are dry, gritty, light sensitive, ache and just watering all the time please ensure all drops, sprays and ointments are Preservative Free - even those prescribed - and maybe check in with the Thyroid Eye Disease charity - tedct.org.uk where you can be signposted to your nearest specialist clinic where I believe an endo and an ophthalmologist work together to find the best dose of the AT drug not to increase the behind eye pressure.
Some people with both AI disease are placed on Block & Replace where by the AT drug is increased to fully block your own thyroid hormone production but a measured dose of T4 - thyroid hormone replacement is prescribed so your T3 and T4 do not fall too far through the ranges with you then dealing with the equally disabling symptoms of hypothyroidism.
Ideally your T3 and T4 need to be kept at around midpoint in their ranges so that you are not too incapacitated - which can be a challenge -
With Graves you can have either Blocking or Stimulating antibodies controlling your thyroid at any given time and these 2 extreme of symptom abs can switch places as they vie for control of your thyroid and there can also be periods of relative calm when the immune system calms back down again - either to return or maybe having burnt itself out.
Hopefully this phase of ill health is now coming to an end - but you need to rest as much as you can as there is likely some brain / body mismatch of expectations, your body has been in a heightened state and you need to just do things you enjoy and be selfish with your ' self ' and look after your ' you ' - as with Graves even sitting on the sofa can be too tiring even after what you thought was a good nights sleep.
When metabolism runs too fast or too slow one's core strength vitamins and minerals tend to drop and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further than necessary- so work on these - and see this has already been covered.
The most rounded of all I researched is that of Elaine Moore - books and website - which we now need to access through archive records - though I was around 10 years post RAI thyroid ablation when I started my research and much more ill than I had ever been in all my life -
You can find much more information about all things thyroid on the Thyroid Uk website and the charity who supports this patient to patient open forum - thyroiduk.org
Thanks to you and all other members for your responses and the information you have all shared. It is great to be able to tap into so much collective knowledge and personal experiences of dealing with symptoms and treatments.
As you say it appears to be not a well understood area of medicine with treatments that have not really evolved much over time.
Would it make sense to ask to be tested for Hashimoto antibodies as well? Would that change the treatment I am currently receiving if it was found that I had both?
Well - you do have both AI diseases as I think I saw over range TPO abs in the October 24 results - there is no cure for an AI disease anyway and it's more a case of managing your ongoing health issues accordingly.
It will not change your treatment plan - and historically once diagnosed Hashimoto's there is no immediate treatment as the hyper phases are transient and the T3 and T4 fall back down into range themselves - whereas with Graves the T3 and T4 levels - can keep rising higher and higher and eventually if not medicated with an A drug - kill you.
With Hashimoto's alone the immune system attacks your thyroid and possibly years down the road, the thyroid output gradually becomes reduced with you then becoming ' naturally ' hypothyroid and then T4 - Levothyroxine - thyroid hormone is prescribed to replace what your own thyroid gland has stopped producing.
With Graves Disease the TSH is generally low suppressed - this is because these antibodies circulating in your blood have got ' stuck on ' TSH thyroid receptors causing these fine hair like follicles to be ' unnaturally pushed down ' - which in turn is a signal for the thyroid to increase its thyroid hormone production - which in turn causes over range T3 and T4 thyroid hormone levels and you becoming unwell and needing to see a doctor,
A good sign that this phase of Graves is over - is when the immune system relinquishes control of the TSH - and this has happened as your TSH has now bounced back into range and responded to dose adjustments -
it's sensible to stay on the AT drug as long as possible as it also dampens down the immune system response -
but your T3 and T4 are now much to low - so we now have a find as low a dose as possible of the AT drug to try and keep you as comfortable as possible while we wait out your treatment plan and your dose of the AT drug has now been reduced to 5mcg daily - so hopefully your T3 and T4 will recover a little further up into the ranges -
It is too low a level of T3 that causes all the symptoms -
and hypothyroidism is found in the low end of both the T3 and T4 ranges -
Some people chop the 5 mcg into 2 and reduce their dose themselves - but let's see how things shape up after the last dose reduction of Carbimazole -
If your T3 and T4 do not increase with this dose decrease in Carbimazole I guess there's also a question of asking if a small measured dose of T4 could be introduced alongside the Carbimazole so to immediately increase your T3 and T4 levels while staying on the AT drug longer term - this is called Block & Replace - and generally only started at the very beginning as a treatment plan for Graves Disease.
I can't believe you haven't been signed off from work until now !!
Interesting to hea your thoughts on Hashimotos and Graves and having antibodies potentially for both. Will see how I get on with the 5mg dose. The endocrinologist was originally going to go with 10mg one day and then 5 mg the next but decided on 5mg based on continued symptoms to see if this will bring my T3 higher in the range more quickly.
Have to say it has been a relief to be signed off work as I try and manage the symptoms and recover a little.
Yes I think the lowest manufactured dose of Carbimazole is 5mcg - and it's best to take the same dose of the AT drug every day and dovetail taking the dose into the natural circadian rhythm of the body and your own body's release of thyroid hormone production.
Ideally you need to be on the lowest possible dose of the AT drug to keep your immune system in check - and for you to be as symptom free as possible - which in reality probably sees both your T3 and T4 at around 45/50% through the ranges with the T3 tucked in slightly behind the T4 in percentage terms.
Yes - it's now time for you to be selfish with your ' self ' and rest as best you can and no more Fastruns for the time being - and try just a walk for 15 minutes tops - twice a day. :
Hi. I went through exactly the same thing. Couldn’t stay stable at all. Eventually had radio iodine treatment. Now worse then even ever. It you can, go private, I’m afraid NHS and thyroid issues are appalling. All I can advise is keep your system fluid, plenty of water and sleep and whatever you do, do not have radio iodine treatment !!!
Sorry to hear that. I am seeing a private endocrinologist as have healthcare with my job. Hoping that things stabilise as I must admit I don’t like the sound of the alternatives.
Will keep educating myself on the condition and using this wonderful community to help advise.
Daft thing is I now have a 14 yr old cat with Graves’ she is better treated at the vet , than I have ever been at either the go surgery or the hospital !!
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