I received two different opinions from doctors regarding the progression of Graves' disease.

[Jane00123]

Hello everyone, I’m seeking professional advice or insights from those who have experienced Graves' disease and recognize the symptoms.

Background: I have Graves' disease, which began a year ago with a high heart rate of up to 230 bpm, diagnosed in January of this year.

Until June, I was treated with Thiamazole (starting from 25 mg once a day, down to 5 mg twice a day). There was progress in hormone levels, but I had a severe allergy to the medication. Since June, I switched to Carbimazole 20 mg per day. Side effects include: inability to lose weight (despite a healthy diet and daily workouts), hair loss, and extreme weakness.

In September, I had blood tests done (no improvement in hormone levels since June, same with side effects). My endocrinologist and GP decided to increase my Carbimazole dose from 20 to 30 mg per day and to decrease Propranolol to 10 mg per day . A few days after the change in therapy, I experienced severe dizziness, muscle weakness, a cold, and my blood pressure dropped to 100/60 (I am 32 yo).

I urgently scheduled a consultation with a private endocrinologist, whose opinion differed from that of my doctors.

His stance (feels a bit strange to me):

• My hormones are currently normal, and I should maintain them at this level with 20 mg of Carbimazole per day.

• He suggests that I may be mistaken about the low blood pressure and dizziness, stating that the change in Carbimazole dosage does not affect this condition.

• Recommendation: take a cortisol blood test (which, as far as I know, is not very representative because the levels fluctuate greatly) and consult with my GP, as these symptoms should not occur with my condition.

I really need advice, as it doesn’t seem like my hormones are balanced since I feel unwell—lethargic, weak, and frequently catching colds.

Should I reduce the Carbimazole dosage from 30 mg to 20 mg again, or maintain the 30 mg dosage as prescribed by the NHS doctors? Is it normal to have dizziness and low blood pressure?

My next appointment with the endocrinologist is in 3 months, and I don’t know whether to adjust the therapy.

My current medication:

• Carbimazole 20 mg per day, increased to 30 mg per day since late September

• Propranolol: started with 40 mg twice a day, now 10 mg per day since September

• Oral contraceptives: Desogestrel 75 mg

• Vit D – 4000 from January

• Here are some of my lab results:

• 20.01.2024: T3 – 20.45 pmol/L, T4 (free) – 36.38 pmol/L, TSH <0.005 μIU/mL

• 4.03.2024: T3 – 5.42 nmol/L, T4 – 17.8 nmol/L, TSH – 0.01 μIU/mL

• 25.06.2024: T4 – 21, TSH – 0.02, T3 – ?

• 19.08.2024: T4 – 21.2, TSH – 0.02, T3 – ?

A million thanks for the advice and recommendations, as I am feeling quite confused.

[SlowDragon Administrator]

25.06.2024: T4 – 21, TSH – 0.02, T3 – ?

• 19.08.2024: T4 – 21.2, TSH – 0.02, T3 – ?

What’s range on Ft4

TSH is often very sluggish to recover

No Ft3 or vitamin levels

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

presumably you have had TSI and/or Trab antibodies tested to confirm Graves’ disease

Also ideally both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common with autoimmune thyroid disease - Graves or Hashimoto’s

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Jane00123 in reply to SlowDragon]

Hi SlowDragon, thanks a lot for your feedback,

Regarding Ft3, indeed I've had all my recent tests through GP, NHS and they either didn't do these tests or didn't share the results with me, + vitamins there as well. I asked the GP for a general blood test and blood iron, he said everything was within the normal range but refused to show the actual numbers.

Thanks for ideas on where to get additional tests done for a fee, I will do it soon.

Regarding antibodies, the result anti - TSHR start of the study was 27.94 in January (normal 0.0 -1.75) and anti - TPO in January 16.39 (normal 0.00 - 34.00). From what I understand in the indicators, they're the ones that said I had Graves’.

Thank you for your help!

[SlowDragon Administrator in reply to Jane00123]

I asked the GP for a general blood test and blood iron, he said everything was within the normal range but refused to show the actual numbers.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Bloods should be retested 6-8 weeks on Carbimazole

What vitamin supplements are you currently taking apart from vitamin D

Propranolol: started with 40 mg twice a day, now 10 mg per day since September

Propranolol should have been reduced very SLOWLY

Are you taking 10mg once or twice a day?

[pennyannie]

Hello Jane and welcome to the forum :

Graves is an Auto Immune Disease, an immune system malfunction with an unfortunate name but given after that of the Irish doctor who first started writing about it - Robert James Graves.

There is no cure and Graves is considered life threatening if not medicated and the only medication is the Anti Thyroid Drug - of which there are a couple of options if you can't tolerate one or the other.

All the AT drug does is semi-block your own new daily thyroid hormone production while we wait for your immune system to calm back down again - and the question is of course - why has your immune system turned and started attacking your thyroid and / or eyes, instead of protecting them as normal.

There is likely a genetic predisposition with Graves and maybe a family member a generation away from you with a thyroid health issue.

Graves can be triggered by a sudden shock to the system - like a car accident or the sudden unexpected death of a loved one, or for others seems to appear totally out of the blue -

either way it is poorly understood and badly treated AI disease and no two peoples journey are the same though we do know that stress and anxiety seem to be common triggers.

Your body is in a heightened state and there can be something of a brain / body mismatch with your brain telling you to run another marathon- while your body is totally exhausted and very weak.

Please stop this exercise regime and punishing your body any further and as for the weight you need to eat clean and not watching your weight since Graves tends to trash anything in it path - which includes your metabolism - and your core strength vitamins and minerals such as ferritin, folate, B12 and vitamin D and which if low can compound your ill health further than necessary.

The first treatment option is the AT drug / and if appropriate a beta blocker - to try and offset the worst of the symptoms being tolerated while we wait for your immune system to calm back down again with hopefully your thyroid revert to normal without the need for any drugs.

All the AT drug does is buy you time - while we wait for your immune system to calm down -

with your metabolism not being controlled by your thyroid - but by your immune system -raging and out of control - causing these high over range T3 and T4 readings and hopefully the AT drug offsets some of the extremes of symptoms being tolerated and a smoother passage through this first - and hopefully - only phase of Graves .

In the UK the NHS generally allocate a treatment window with an AT drug of around 15-18 months - with the definitive option of a thyroidectomy or RAI thyroid ablation if you can't tolerate the drugs and / or your levels are unable to be controlled and ' finding remission ' not seen as a option/ reality.

We do now have some research that might help in your decision making :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

I found the most well rounded of all I researched that of Elaine Moore - books and website - elaine-moore.com - though too late for me as I was 8 /9 years post RAI thyroid ablation in 2005 and becoming much more ill than I had ever been in all my life -

and with no help nor understanding from mainstream medical, and refused NHS treatment options for RAI induced Primary Hypothyroidism -

with the help of the charity - Thyroid UK and this forum which is supported by this charity and few other websites and books - now buy my own full spectrum thyroid hormone replacement and much improved on how the NHS left me.

P.S. Your T3 and T4 as expected, look to be falling back down the ranges -

March results ' look ' good and ' guessing ' both T3/T4 are in the range ?

Was the AT drug reduced down on these blood test results ?

I read Propranolol needs to be reduced very slowly otherwise you may experience bad headaches and other related symptoms.

Ideally you need to try and get your T3/T4 to around midpoint in both ranges as hypothyroid symptoms will start creeping in when levels are in the low end of the both ranges and hypothyroidism is equally if not more, disabling.

If the AT drug is not working well for you in controlling your symptoms there is also the option of Block & Replace for some patients whereby the AT drug is increased to fully block your own new daily thyroid hormone production - BUT a measured dose of T4 is prescribed so your T3 and T4 do fall too far through the ranges.

There is a lot to read and understand and there is no quick fix for Graves- which of course puts a whole other layer of stress and anxiety on most peoples way of life -

it is a waiting game - something you may feel you are currently very ' short on ' - patience -

your immune system is upset with your whole body agitated and it takes as long as it takes -

given enough time - you and your body will recover from this -

you may not look ' that unwell ' - but you are - be kind to yourself.

[Jane00123 in reply to pennyannie]

Hi, pennyannie!

Thank you very much for your kind words and wishes, I am sure that I will be able to stabilise my thyroid gland as I caught the disease at the initial stage.

I don't know exactly where it came from, but there are 2 hypotheses: 1) heredity through one of my parents' lines (but not proven conclusively) , 2) prolonged stress and huge overworking, which I unexpectedly leached into autoimmune disease. I realise that this is a long process, but as a hyperactive person it is still very hard for me to accept this constant fatigue, dizziness and the feeling that you have no energy even for the simplest 30-minute workouts, I try not to exhaust myself, but also not to let life take its course.

As for the beta blockers, we have been going from 80mg to 60mg, 60mg to 40mg and now quite abruptly to 10mg (within two months or so we went from 80mg to 10mg a day), it may have been quick but GP was worried that my heart rate was 50.

Thanks for the resources I will be familiarising myself with everything as soon as possible.

I also wish you good health and a successful fight against AT.

[tattybogle]

did you lower the propranolol from 40mcg to 10mcg in one go , or had it already been reduced gradually from 40mcg over time ?

I don't have any experience of taking it personally , but from others experience it needs to be reduced extremely slowly ... so just wondering if that is part of the problem.

[Jane00123 in reply to tattybogle]

Hi tattybogle, thanks for your reply,

As for the beta blockers, we have been going from 80mg to 60mg, 60mg to 40mg and now quite abruptly to 10mg (within two months or so we went from 80mg to 10mg a day), it may have been quick but GP was worried that my heart rate was 50. And if I don't use beta blockers (I tested it on myself for 2 days) my heart rate starts to go into space from just walking down the street (175 bpm).

This may well have been the problem in worsening my symptoms, but time and further tests will show hopefully where I am now on this long journey and what to do next.

[PurpleNails Administrator]

Looking at your last FT4 in august (T4 – 21.2) is that in the lab range? (Ranges differ between labs) It’s quite high by most ranges. As you don’t know where your FT3 is - that could be out of balance & you won’t know unless you test.

Some are sensitive to changes in propranolol doses. Carbimazole might not have a direct affect on blood pressure but it’s affect on thyroid hormone will & propranolol will definitely affect blood pressure. Propranolol also has mild anti thyroid element in lowering FT3.

If you arrange a current test you can make small adjustments to medication based on results.

[Jane00123 in reply to PurpleNails]

Hi PurpleNails,

Many thanks for your feedback. Actually, I don’t know what the lab range was. I did it through the NHS system and only received a conclusion from the doctor stating that it was "high." In my previous results, the normal range was between 10.80 - 18.00.

I’m having tests done at a private clinic soon and will get back to you with a clearer clinical picture.

Thanks

[KatieG12]

Hi Jane, I have taken carbimazole at different doses for a number of years and never experienced any issues with blood pressure or dizziness. And I always think I get less colds when I am on it!

Carbimazole works fairly slowly. So usually 6 weeks from changing the dose before you notice any change.

I’d go back to your endocrinologist and speak to them. You could always do a mid dose 25 until you see them. Try your gp if you’re feeling rubbish incase something else is going on.

Good luck.

[Jane00123 in reply to KatieG12]

Hi Katie,

Thank you so much for sharing your experience with taking carbimazole.

Yes, I’m waiting for an appointment with my endocrinologist and also planning to do the missing tests privately. I hope this will clarify this condition better.

[Zoey92]

Someone can correct me if I’m wrong, when I first started carbimazole I frequently had my WBC checked because a side effect of the medication can be it dropping your white blood count making it easier for you to catch infections and fight germs! I had a fair few illnesses when I first started and this was a warning / side effect explained to me by my endocrinologist before starting the drugs.

In regards to your BP / dizziness, from experience I’m thinking that is down to the propranolol rather than the carbimazole. The propranolol should be decreased every slowly rather in one go due the side effects also.

Hope that helps! Graves is a long hard battle and it’s been 25 months for me, only just starting to feel a bit more human!

[Jane00123 in reply to Zoey92]

Hi Zoey,

Thank you for sharing your experience. I realize there’s still a long way to go to stabilize the condition. We’ve been on propranolol for about 8 months, and over the past 2 months, we’ve reduced the dose from 80 mg to 10 mg a day. Maybe that’s too fast, but my doctor was concerned because of the 50 bpm heart rate and said we needed to reduce it more quickly. We'll see how it goes from here.

I wish you the best of luck as you continue to fight this disease.