pennyannie in reply to Michellear

Hey there :

Carbimazole is an anti thyroid drug and one of two drugs prescribed for patients who have Graves Disease as Graves is said to be life threatening, if not treated.

The AT drug blocks your own thyroid hormone production and your T3 and T4 hormone levels from going any higher and slowly over a period of weeks your T3 and T4 hormone levels will drop back down into range and your symptoms reduce accordingly.

However there are two autoimmune diseases that attack the thyroid so it is important to identify which one we maybe looking at.

Initially both Graves and Hashimoto's s express symptoms of an overactive thyroid but if Hashimoto's this is not treated with AT drugs.

The only way to know which, if any, thyroid AI disease you have, is to run the antibody blood test to identify which antibodies are over range and positive.

I believe a thyroid function test is referred to as TFT : just to confuse the patient even further !!!

Michellear in reply to pennyannie

Hi Pennyannie,

Many thanks for your message!

I am so confused as to why the oncall endo didn’t order more tests to confirm. Which autoimmune disease is causing my issues. Bit of a poor show really!!

If I don’t. Get anywhere with my GP (which is very likely) I will look into private testing!

Many thanks for your help.

Michelle xxx

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pennyannie in reply to Michellear

Maybe your results are sitting in the laboratory and the system just needs updating to show the answers.

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Michellear in reply to pennyannie

Hopefully the GP will have all my tests on record from the hospital. Reading my discharge notes and initial blood tests I don’t believe the endo tested for all the different autoimmune types as you listed in your message! Fingers crossed they were all tested will find out later either way!!

I’m really worried, feel

More agitated and anxious than I was lol xxx

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pennyannie in reply to Michellear

I'm sorry to read this :

This forum is meant to inform rather than cause anxiety : but I recognise that feeling as it can be information overload and you start not trusting yourself with anything :

Switch off and have a cup of tea - when with the results and ranges, just post up on the rolling screen and hopefully the missing piece of your jigsaw will be evident.

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Michellear in reply to pennyannie

Hi Pennyannie,

Finally advised by endo I was tested for TSI and TPO antibodies which were both positive. He seems convinced it’s Graves and hasn’t considered Hashimotos disease.

I hope you are keeping well and thank you for your previous messages and advice, very much appreciated

Michelle xx

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pennyannie in reply to Michellear

Hey there Michelle

Thanks for the update - Please do get a print out confirming which antibodies are over range, positive, and the medical evidence, and confirmation, of which AI thyroid disease you are dealing with :

TPO is more likely to be Hashimoto's not Graves Disease ?

Ask for confirmation of the 2 Graves specific antibodies : and can they check and confirm your TR ab antibodies ( thyroid blocking receptor antibodies ) result as well as your TSI antibodies ( thyroid stimulating antibodies ) ?

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Michellear in reply to pennyannie

Hi Pennyannie,

Many thanks for your message.

I have a follow up with the endo next week so I will ask for confirmation then.

Many thanks for all your help 👍 xxx

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pennyannie in reply to Michellear

Good, ok then,

I'm sorry to sound like an old " nagg ' but we have seen several people misdiagnosed and just want to be doubly sure that you are on the right medication and treatment plan.

Always get copies of all the blood test results and ranges as then you have a reference and can look bck and follow your progress.

How are you doing - anyway - have any of your symptoms resolved ?

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Michellear in reply to pennyannie

Hi Pennyannie,

Many thanks for your message.

Still feeling ill, fatigued boiling hot and heart racing up to 150 at times. Keeping me up all night, wake every 30 min to an hour, and still breathless but been told that is due to lung covid.

Upped beta blockers to max now

Hope you’re well and having a good day xxx

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pennyannie in reply to Michellear

Can't say I like the way that reads -

I'm sending a hug instead - take good care -

I remember the insomnia very well -

xx

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tattybogle in reply to Michellear

TFT stands for Thyroid Function Tests (plural) , and includes:-

TSH (thyroid Stimulating Hormone) - a signal from the pituitary(brain) to ask the thyroid gland to make more /or less thyroid hormones . High TSH =make more please . Low TSH =we got enough already.

fT4 (free T4) - the inactive , long lasting, 'storage and transport' form of thyroid hormone

fT3 (free T3) - the active form of thyroid hormone.

If someone describes TFT as 'raised' , it is not easy to tell what they mean. because :-

in hyperthyroidism the fT4 /fT3 are raised while the TSH is low.

in hypothyroidism the TSH is raised while the fT4/3 are low .

The only test that is conclusive for Graves Disease as being the cause of hyperthyroidism is an antibody test called TRab (Thyroid stimulating hormone Receptor antibodies)

-an endocrinologist will usually have to order this , gp's don't usually do it.

Why you need to find out if hyperthyroidism is caused by Graves :-

Sometimes hyperthyroid results (low TSH with high fT4 /3) can be caused by early stage hashimoto's hypothyroidism as the thyroid can sometimes go hyperthyroid before becoming hypothyroid.

Early stage hashimoto's is is not the same as true hyperthyroidism from either graves or a hyper functioning nodule, as these are caused by continuous over production of thyroid hormones and need antithyroid drugs (carbimazole) to reduce the production of hormone.

If it is hashimoto's causing transient hyperthyroidism then carbimazole may not be neccessary and sometimes treatment is just to control symptoms without actually reducing hormone output.

Often in Graves the fT4 /3 levels are several times the 'normal range', whereas in hyperthyroidism from hashimoto's the fT4/3 levels are raised, but not as high as in Graves.

Michellear in reply to tattybogle

Hi Tattybogle,

Many thanks for your message and all the helpful information.

I had no idea Hashimotos could start as hyperthyroidism. Your post has been very helpful :).

If the GP is unable to order the tests I will have to wait another 4 weeks to speak to the endo. I left a message this week but nobody has got back to me!

I believe the endo assumed its Graves as my Aunt has it! He has ordered a scan but not to sure when it will took place.

Have a good day and thank you for your help xxx

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tattybogle in reply to Michellear

the tendency to thyroid issues does 'run in the family' .. but which one you get is pot luck i think . I had an aunt who probably had graves,(she had a 'bit of thyroid removed' then had to take levothyroxine)..... but i got hypo , preceeded (probably) by hyper phase.. just thought i'd gone a bit nuts at the time, but lost loads of weight despite being fed well. then slowly went hypo until diagnosed 3 yrs later

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pennyannie in reply to Michellear

Hey there again :

I was diagnosed with Graves in 2003 from the one original blood test the doctor ran :

As I understand things the laboratory run a TSH blood test, and if this result comes back outside the ranges, the laboratory run further analysis of the same blood sample for T3 , T4 and antibodies.

The result being the medical evidence of what you are dealing with and on which your medication is based.

Considering the current situation maybe the arrangement has changed, but I can't see why it necessitates more blood tests and more appointments .

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Michellear in reply to pennyannie

Hi Pennyannie,

Many thanks for your message and thank you for sharing your story.

How are you coping now, has the Graves gone into remission?

Many thanks

Michelle xxx

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pennyannie in reply to Michellear

Hey there :

Well I had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism ;

I deeply regret this treatment options and have been very unwell with what I believe are the long term consequences of this treatment though have had no help nor acknowledgement through the NHS.

Having been refused both T3 and NDT through thee NHS I now self medicate and am much improved staying away and helping myself, which seems so strange but is so true.

Graves waxes and wanes, and I just believe that most people would be better served if they were allowed to stay on anti thyroid medication long term rather than loose this major gland to an AI disease.

You still have the disease, but are now with hypothyroidism rather than hyperthyroidism. The situation can be even further compounded if not able to access the appropriate medication for someone living without a thyroid gland.

There are details on my profile page as I don't want to write and think about it all again.

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Michellear in reply to pennyannie

Hi Pennyannie,

Sorry to hear about your health issues and long journey. It sounds like you’ve been through a lot.

Considering everything you’ve been through I’m so grateful that you shared your story.

It’s pretty disgusting the way the NHS have treated you. You sound like a very strong, kind and compassionate woman.

Sending love and hugs xxx

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Michellear in reply to pennyannie

Reading your profile page saddens me you’ve been on a long road, glad to hear your getting better ❤️❤️❤️

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shawsAdministrator in reply to Michellear

If GP has to follow-up - always request a copy of your blood test results and they should contain the 'ranges' which permits members to respond. I am sorry you have hyperthyroidism.

The method for blood tests is to make the earliest appointment as TSH is highest then and can stop doctor adjusting your medication as they seem to only take notice of the (Thyroid Stimulating Hormone).

Michellear in reply to shaws

Hi Shaws,

Thank you for your message and sharing with me.

I will make sure I have my bloods taken early in the morning! Xxx

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tromashka in reply to Michellear

Michelle, hi,

be prepared the GP will refuse to test for TSI, TRab. Mine claimed she's never heard of those and that I read too much. Also she claimed she'd mentioned to the lab to test for them ( since I insisted) but the lab didnt do it themselves ( i refuse to believe someone in the lab overrules GPs decision, i suspect she just didnt ask). Ive been on 40mg Carbimazole since my bloods showed T4FREE 47 ( reg 10-22) and T4FREE was 16. After a month on carbimazole t4 went down to 26 ( GP didnt test for T3free .

When I saw a private Endo the other day, the specialist told me to stay on carbimazole for another 3 months at least ...without confirming it's Graves via testing for the antibodies mentioned earlier. She just told me to keep taking 40mg for a month, then 20mg the following month and so on. No blood tests planned by the doctor.

I'll be testing them privately myself.

So what I'm saying be prepared to insist on those ab tests to be done inspite of them saying you dont need them, or find the way to test privately. If I was you I would make sure I have the full thyroid panel of bloods done before I see the endo either via GP or privately. I was trying to do so before my endo appointment but my GP had let me down . So I've learnt the lesson.

I've been dealing with hyper thyroid only since December 2020 but still struggling to get clear answers and proper testing/ diagnosis done.

Best of luck and health and patient- friendly doctors!xx

Michellear in reply to tromashka

Hi Tromashka,

Many thanks for your message and sharing. Sounds like you’ve had quite a journey since December last year.

I’ve had the symptoms since Jan this year! Had quite a journey to get the diagnosis, attended A and E 4 times and only got diagnosed on the 4th occasion.

The first visit was because of abnormal ecg high heart rate and they diagnosed secondary heart attack. On the next two visits I was told they weren’t worried about my heart rate which was peaking at 180 and coming down to 110!

I decided to ride it out, I felt like a hypercondriact ! (However it’s spelt). I was asked if I had a lot of stress!

As for GPs don’t get me started lol I believe I have lupus and have all the symptoms. Have had to beg the GP for a referral. Still waiting to see Rheumo.

I will make sure i nag the GP into submission.

I have private cover through Beneden which kicks in from April so will be utilising it soon!

Good luck xxx

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SlowDragonAdministrator in reply to Michellear

Graves’ disease patients often have high ferritin (though not always)

Hashimoto’s patients tend to have low ferritin levels

Low iron or ferritin can cause high heart rate

Exactly what vitamin supplements are you currently taking

When were vitamin levels last tested

You need copies of last August tests

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.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries 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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet