Following on from my post yesterday, I have been encouraged by Pennyannie to share my story to the wider community.
I have some questions listed below and am very grateful for anyone’s contribution.
I was diagnosed late last year during annual blood test and was mostly asymptomatic. I didn’t have any of the usual symptoms of Graves. At that point I had some new skin issues with occasional rash like heat rash and some changes to my nails (pitting and a dry nail). I had put on about 6kgs which had never occured before other than pregnancy and then lost 3-4kg so currently weight 2-3 kgs more than before diagnosed. Periods became more regular (previously irregular) but heavier.
As I was asymptomatic and have history low white blood cell count and newly elevated liver enzymes, I was hesitant to commence medication in case it made those issues worse. The doctor allowed me time to try making some changes to diet to see if it helped.
I saw a functional medical practitioner (was overseas at the time) who recommended gluten and dairy free diet. My free T3/T4 and TpoAb and TRAb antibodies decreased (although not enough to be in range) but TgAb increased. I don’t understand why TgAb was the anomaly.
I has a gut test called GI360 which looks for imbalances parasites bacteria etc and no issues there, it came back great. Except borderline low stomach acid and was given bitters and pancreatic enzymes.
I moved to London early this year and went for private blood test at GP and I think there was a mistake as my T4 came back over 100!
I felt fine but was rushed to hospital and then test was repeated and nowhere near as high coming in at 29. I had an ECG, thyroid scan and was supposed to have an Endo appointment but the hospital cancelled it and said I was now on wait list.
My symptoms were minor and I still felt fine and, without an endo overseeing, I was still hesitant to commence medication. GP was ok with this. During this time I had also experimented with Bugleweed and lemon balm tinctures as well for about 4 months but stopped this as found I was getting very hungry and tired. These symptoms ceased once I stopped, although still have a good appetite.
Lately I have had permanent bloating despite using digestive enzymes and being gluten/ dairy free. Yesterday started getting sudden heart palpitations so started the Carbimazole I had been prescribed at the hospital ( 20mg / day) yesterday. I had stopped taking magnesium citrate at night a few days ago after taking it for a few weeks so not sure if that contributed to the palpitations.
Questions:
Does this dose 20mg/day sound right for my current numbers? The GP at the hospital said they weren’t sure and “guessed” at the time of prescribing and I was supposed to see and an Endo to confirm but that didn’t happen.
Also how soon do I need to repeat bloods to see the impact? I obviously want to avoid going hypo and will try make a private endo appointment as soon as I work out who to see to monitor and confirm but interested in what timing I should aim for.
Does anyone know what would cause TgAb to move in opposite direction (worsen) compared to other antibodies which improved.
Has anyone had a similar experience without the usual symptoms or did I just catch it early? Any other thoughts about my results?
Thank you to anyone who is able to help for their time and knowledge 🙏🙏😊
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Gravie
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Hi Gravie , sorry you haven't had any replies yet. i'll tag PurpleNails or SlowDragon for you , hopefully they can offer you some reassurance .Purplenails has experience of using carbimazole.
I don't know enough about starting carbimazole to say anything else useful, sorry x
it perhaps looks like you could have Hashimoto’s and Graves’ disease together
You may find you end up on block and replace
Block with Carbimazole and …..if /when Ft4 and Ft3 drop low ….replace with Levo
You probably need to see a thyroid specialist endocrinologist
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
starts at the end of the first reply from tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "
and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.
meanwhile work on improving vitamin D and increase iron rich foods in your diet to maintain ferritin over 70
Thank you SlowDragon. This would explain my weight gain then! And possibly why I haven’t had too many symptoms. I had only been told I had “full blown Graves”
I had downloaded the list of specialists but was still narrowing it down so this helps very much thank you.
My Ferritin has dropped considerably since diagnosis despite improving diet/ removing gluten dairy and increasing leafy greens and red meat so I might be having absorption issues now.
Vitamin D I had been taking 1000iu a day for past two years but having moved to UK this year maybe should have increased as this has also dropped a lot. I am now taking 2000iu a day since the last test hopefully this is sufficient? I’ll try get more sun exposure too.
I would update your NHS doctor who will update your records and the hospital Endo department and you should now have regular TSH + T3 / T4 blood tests every 6-8 weeks as you go through this first phase of Graves.
The AT drug will semi-block your own new daily thyroid hormone production and once your thyroid hormones start to fall back down - the AT drug must be titrated down - thereby releasing a little more of your own thyroid hormones back into your blood stream so your levels do not fall too far through the T3/T4 ranges.
If you still have symptoms putting pressure on your heart please talk to your primary care doctor who will likely suggest a beta blocker - Propranolol is generally prescribed as this tends to slow the conversion of T4 into T3 - as it is the T3 level that generally causes the most worrying symptoms.
Whether you choose to go private or not - I believe at this point in time - the treatment will be the same - though maybe the follow up and maintenance slow within the NHS as I read O/P appointments are somewhat backed up - and in many areas - under hospital endo advice - management of this first phase of Graves under taken by your primary care doctor.
As for your TSH - this may never recover -
currently your immune system is in control of your TSH as the Graves antibodies in your blood are getting ' stuck ' on the TSH follicles -
pushing these TSH follicles down which in turn ramps up thyroid hormone production -
and why you are where you are - with the high T3 and T4 levels and diagnosed with a thyroid health issue.
As your immune system calms down again - the Graves antibodies should reduce in your blood and those antibodies suppressing the TSH follicles will lessen and hopefully your TSH recover and move.
Do you have any issues with your eyes - dry, gritty, streaming with water, light sensitive - please just be sure any eye drops you maybe prescribed or buy OTC are all - Preservative Free.
Just for some reference i know now I need to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.
Thanks Penny very helpful! My heart has calmed down to normal after resting all day Thursday and taking it easy since so I didn’t need to go to A&E. Hopefully I continue this way. My eyes have felt totally fine although I feel they look a bit “wider” than normal so I do feel it’s time to treat medically. I had felt this the last week or so so maybe this was a wake up call! Funnily enough I can recall several instances over the last 20 years where I have had watery eyes and been sensitive to light but not for about 5 years. I never knew the cause of that.
Thank you, I’ll get on to the doctors. I have less than a months supply of carb so will need a new script before testing too!
The eye issues could be Thyroid Eye Disease - and this evolves independently of Hashimoto's or Graves though tends to only get diagnosed after diagnosis of either or AI thyroid health issue.
Just ensure anything you may use to ease any discomfort is Preservative Free in the future.
Q)“Does this dose 20mg/day sound right for my current numbers? The GP at the hospital said they weren’t sure and “guessed” at the time of prescribing and I was supposed to see and an Endo to confirm but that didn’t happen”
A) 20mg is a very moderate starting dose. However it’s always guesswork when starting carbimazole because everyone responds differently, and it’s individual at what rate the thyroid levels are being over produced. It’s also individual how levels drop naturally ie how fast your body uses up existing stores of hormones.
Q) “Also how soon do I need to repeat bloods to see the impact? I obviously want to avoid going hypo and will try make a private endo appointment as soon as I work out who to see to monitor and confirm but interested in what timing I should aim for.”
A) Initially blood test should be every 6 weeks with carbimazole being adjusting by FT4 & FT3. If your doctor is focusing on TSH this can drive you hypo. TSH isn’t reliable.
Q) “Does anyone know what would cause TgAb to move in opposite direction (worsen) compared to other antibodies which improved.”
A) In short, no.
Antibodies can have huge & mysterious overlap in terms of Hashimoto’s / Graves. Antibodies confirm autoimmune activity has previously occurred. The immune system is now clearing up. Or still stimulating thyroid.
Symptoms don’t always correlate to antibody number or to what levels are doing & medics don’t have methods to treat the autoimmune aspect. The treatment is to alter thyroid levels. There are holistic approaches which can be tried.
Q)“Has anyone had a similar experience without the usual symptoms or did I just catch it early? Any other thoughts about my results?”
A) I had typical hypothyroid symptoms although I’d likely been hyperthyroid for about 4/5 years by time I was diagnosed with hyper nodule. It’s very individual & diverse. Sometimes if thyroid levels changes are gradual, you self compensate & symptoms develop unnoticed. In others small fluctuations can trigger severe symptoms.
Hi there - I was diagnosed end of May 23 with Graves and my freeT4 and T3 levels were almost identical to yours at around 61 and 25 respectively and TSH <0.01 . I’d done a Monitor my Health blood test on the recommendation of my optometrist brother as he thought my eyes looked like I had thyroid eye disease. Symptom wise other than that the only other symptoms I’d become aware of was facial sweating after a short period of gardening or walking briskly in hot weather. In addition my previously stable weight had begun to increase by a few kg.
Obviously I went to the GP who repeated bloods and checked my blood pressure (raised but not something he’d treat) and found me to have a pulse of 120. He then asked me to hold out my hands in front of me and lo and behold I had quite a tremor which I hadn’t been aware of.
Agreeing that I had hyperthyroidism he started me on 15mg Carbimazole and 20mg propranolol 3x /day. Referrals were made to endocrinologist and ophthalmologist.
1 week later I returned to GP. Bloods were back confirming a Graves diagnosis and he increased the carbimazole to 20mg as I was tolerating. I also had a raise in one of the liver enzymes. GP commented that this increase could be because of my hyperthyroidism but should go back to normal as my thyroid levels were treated. I was referred for an ultrasound of my liver just to double check nothing else was amiss (All levels and ultrasound in Sept 23 were normal)
I didn’t get to see my endocrinologist until mid Sept but the endocrinologist got in touch with the GP in July to increase my dose to 30mg. By the time I finally saw the endo I was quite hypothyroid so my dose was reduced to 15mg. At the beginning of December I was still hypothyroid so my dose was reduced over the phone by the endo to 5mg and a promise to see me in January 24.
The January appointment got cancelled as there was a Consultant strike. The next appointment I was given was May 24. I was feeling ok at this point so wasn’t too worried despite the lack of blood test since December 23. Fortunately my May blood test confirmed that my free T4 and T3 levels were in the normal range and my TSH was also picking up too. I was still testing positive for the Graves antibodies.
I wouldn’t say my experience has been textbook as regards having regular 8weekly blood tests as they clearly haven’t happened due to NHS delays in seeing the endocrinologist, strikes etc. I haven’t chased things as I have felt well but had I not been feeling ok I would have contacted my consultant’s secretary to arrange a blood form to be sent out to me. Fortunately all seems to be going in the right direction though.
Sorry this post is so long but I just remembered that I only took the propranolol for a couple of months before gradually reducing the dose to stop it.
Other supplements- I take Selenium 200mcg for my eye disease, vitamin B compound and vitamin D tablets
Thank you so much Curious for sharing your story. I really appreciate having the reference point. You are very lucky to have your brother looking out for you!
We sound very similar, I also now remember having sweating on my upper lip last year even from just crossing the road but didn’t make the connection to Graves as was living in a very humid climate then but it only started around the time of diagnoses.
Can I ask have you had any side effects from the medication. I started just on Thursday 20mg per day but already now have dark rings under both my eyes. I’ve never had anything like this before. I know my liver enzymes were already elevated and wondering if this is making them worse. Was already thinking of cutting back the dose.
Thanks for sharing your supplements too. I just had my selenium tested but the doctor commented that there was no correlation with eye disease! I have been eating about 3 Brazil nuts a day since diagnosis and my number was in range but will keep an eye on things.
I’m glad to hear you’ve been able to lower your dose and get your numbers in range so soon as well.
Found a link for you on the selenium recommendation for thyroid eye disease btf-thyroid.org/thyroid-eye... Clearly the Brazil nuts are working to keep you in range though
Carbimazole side effects. No I haven’t had any but my GP recommended that as it can very rarely lower blood count in some people a full blood count should be requested if I developed signs of infection whilst taking it. I have never needed to ask for this. Do you have a patient information leaflet in the box to read about this?
Dark rings appearance - I’ve certainly had eye bags with my thyroid eye disease due to the inflammation you get. Looking particularly bad at my most hypothyroid moments so it’s been a useful gauge of where my levels have been in retrospect.
As I mentioned in my post about my raised liver enzymes at diagnosis was due to being hyperthyroid. I suspect you had probably been hyperthyroid for a while as I looking back I know that I had probably been hyperthyroid for months before I went to the GP. Carbimazole treatment will normalise your thyroid levels and therefore be the solution to getting your liver enzymes back to normal. It is not the cause of them being raised and therefore do not be tempted to cut back on the dosage.
Thanks for the leaflet, I’ll need to show the Dr 😂
Yes my biggest concern with commencing the Carbimazole was the risk of lower white blood cell count as I have always been low as long as I have had blood tests. This can lead to illness if worsens so I’ll need to monitor this. Ok great that liver enzymes would improve as I thought it was the other way around so this gives me hope! I’ve never had an issue with liver enzymes before in my annual check so I believe it’s a side effect of the Graves.
I also didn’t know that about the eye bags also thank you, not looking forward to this, another thing to monitor 😊
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