Carbimazole: Hi, I was put on Carbimazole... - Thyroid UK

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Carbimazole

crisathome profile image
45 Replies

Hi,

I was put on Carbimazole1 0mg on 1st July and after 8 weeks I had a blood test and the nurse rang me to say my Tsh had come into acceptable levels and halved my dose to 5mg.

After only a couple of days my symptoms started again: overheating, sweating, waking in the night with pounding heart, anxiety, feeling like I can't bresthe.

It's only six days since I reduced the dose and I can't get hold of the nurse until tomorrow, fingers crossed but I'm wondering if I should go back to 10 mg today, before I speak to her, or will I get in trouble.

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pennyannie profile image
pennyannie

Hello again :

You will not be told off by the nurse for taking extra Carbimazole :

All the AT drug does is block your thyroid hormones a little bit more and hopefully leaves you a little more comfortable until such time as you can get medical advice which hopefully will be within a few days.

Do you now have a diagnosis and know why your thyroid has become overactive and any details of antibodies which written usually look like :- TPO : TgAB : TSI : TR ab : ?

Do you have a copy of your original blood test from diagnosis detailing a TSH , T3 and T4 result and range ?

P.S. Have you had your vitamins and minerals levels run - we need to see a ferritin, folate, B12 and vitamin d level and range as these alone if not maintained at good high levels can cause various symptoms of breathlessness and anxiety ?

crisathome profile image
crisathome in reply topennyannie

The diagnosed is Thyroxicosis secondary to Graves.Mildly positive TSH receptor antibody at 0.5 IU/L

Atrial fibrillation (diagnosed Nov 2021)

Anxiety

I haven't been checked for vitamins and minerals I don't think.

I'm pretty new to all this as I was only diagnosed last November after going to the Doctor with breathlessness, it took until 6th June to be seen by the Consultant and then another almost month to get on the Carbimazole as his Secretary didn't send the dosage to my Doctors until 1st July and I started taking the 10mg Carbimazole from then.

pennyannie profile image
pennyannie in reply tocrisathome

OK then - have you taken a higher dose and a little more comfortable ?

You are legally entitled to copies of all your medical records and you can arrange on line access to your medical records if you haven't already.

Do you have the range for the ' mildly positive ' TR ab antibody for Graves ?

It would help to explain things to you if we knew your TSH, T3 and T4 results and ranges at diagnosis and where your T3 and T4 were for the nurse to lower your Carbimazole :

Ok - I've just read further down that you took 10 mcg Carbimazole this morning so hopefully today you will see some improvements in your symptoms.

crisathome profile image
crisathome in reply topennyannie

Investigation 6th June:

TSH <0.01 FREE T4 12.6 FREE T3 6.48 pmol/L

pennyannie profile image
pennyannie in reply tocrisathome

Can you please edit this with the ranges ?

Is this the result at diagnosis or after being on the AT drug ?

pennyannie profile image
pennyannie in reply topennyannie

I'm trying to piece things together :

Blood test at doctors last November is not here :

Investigation 6th June is a new blood test : TSH at 0.01 : T4 at 12.60 and a T3 at 6.48 .

Guessing ranges for T4 as 12.00 -22.00 and T3 3,10 - 6.80 : mildly positive TR ab :

July 1st started on 10mcg Carbimazole a day - were symptoms relieved ?

Advised to drop down to 5 mcg around a week ago - as TSH looked better - and symptoms have returned - so today you have gone back up to 10 mcg and hopefully feel a bit more comfortable

Once on an AT drug you must be dosed and monitored on your T3 and T4 levels and not your TSH reading - so if that was all that was run - it's not acceptable as a TSH seen in isolation means nothing.

TR ab - thyroid receptor blocking antibodies - which are mildly positive 'sit on ' TSH receptor sites distorting the TSH readings.

Does this make sense - so far ?

crisathome profile image
crisathome in reply topennyannie

This is before taking Carbimazole, the Consultant said it wasn't too bad but I must be quite sensitive, as my symptoms were quite bsd.

I don't know what you mean by "edit this with the ranges"but these results were all I had from the Consultant.

Yes! I went back to 10mg this morning, hoping the anxiety feels better soon.

Thanks for your help, I'm sorry I don't understand all the terms, I don't have the range for the "mildly positive TRab antibody for Graves".........I don't even know what a Trab antibody is, or what it means.

It's all so confusing when you're new to this......

pennyannie profile image
pennyannie in reply tocrisathome

Please do not worry and sorry if i sounded harsh asking for stuff you haven't got or understand - I was there once and apologise.

OK - so I think we crossed over Heathrow Airport as I sent a little summary of the details we have and an explanation of what TR ab means - hope this helps and I've understood so far,

crisathome profile image
crisathome in reply topennyannie

Your piecing together is absolutely perfect and explaining TRab, I'm so stressed none of it 'sinks in'.I'll find my November blood results in the App and post at the end of this reply.

I didn't think you sounded harsh at all, very knowledgeable more like it and I hardly know anything about it at all.

Thanks for your help though, I appreciate it....

November Full Blood Count

Serum TSH level: 00.1 mU/L (normal range: 0.35 -4.94).

Serum free T4 level: 11.3 pmol/L (normal range: 9.0 - 19.0)

Serum free T3 level: 5.34 pmol/L (normal range: 2.43 - 6.01)

There are lots of other results but too much to type.

Can you let me know what you think of these readings.

I haven't got the results from the last blood test yet, but when the letter comes I'll let you know.

pennyannie profile image
pennyannie in reply tocrisathome

No worries :

Well apart from your TSH being at 0.01 - neither your T3 or T4 are over range - so it's seems an ' assumption ' rather than a fact last November and probably why you were then referred to cardiology - did anything come of that appointment ?

Your TSH is likely low because of antibodies - are there any referenced on this long list -

TPO - thyroid peroxidase : Tg AB -thyroglobulin antibodies : and or a TSI - TR ab as already explained :

As there is more than one reason for Thyrotoxicosis :

Did you, or do you still have a mild tremor on your middle finger when you hold your hand out :

I say this as my doctor couldn't believe I had Graves as I didn't have ' typical ' symptoms and asked me to hold out my hands, and there it was, so he was cross with himself for not checking this when I first saw him.

Do you have eye issues, like a feeling of dryness and grittiness ?

Are there any ferritin, folate, B12 and / or vitamin D results and ranges there ?

Still thinking :

crisathome profile image
crisathome in reply topennyannie

I can't see any references for TPO, Tg AB etc. but I can bring all this up with the nurse and consultant.I do have a tremor and before going on Carbimazole my hand would sometimes shake quite badly on occasions, one occasion I remember was meeting my Granddaughters new boyfriend at a brunch and finding half way through the meal my hand was shaking so badly, I had to say I was full and leave the meal before I embarrassed myself. I

I don't think I have any dry, gritty eyes, if anything mine are quite watery.

And, I've got no vitamin, minerals been tested, which again I can bring up with the nurse or consultant.

I'll try to contact the nurse tomorrow and let her know I've had to go back to 10mg as the symptoms became too much.

Thanks for everything, I'll let you know how I get on.

Sorry, it's all been about me, I hope you're Hyper is settled and symptoms not too bad.

Christine

pennyannie profile image
pennyannie in reply tocrisathome

Yes watery eyes also links in - I should have included that symptom but my phone rang and I quickly finished what I was trying to say.

pennyannie profile image
pennyannie in reply topennyannie

Just to add - having thought a bit :

Your T3 and T4 are in range on the November blood test BUT the ratio of T3 to T4 is coming in at 2.11 : simply divide your T3 into your T4 result :

Which means your metabolism is running very fast and at around double the rate of someone presumed to be well.

One's rate of metabolism generally sits somewhere between 1/ 3.50 - 4.50 - T3 /T4 and when well most of us feel at our best when we come in this ratio at around 4 .

At your results in June your T3 was 6.48 and your T4 12.60 so your metabolism was running at 1.94 and consistent with nothing much having changed as you were not on any AT drugs which act by blocking your own thyroid hormone production.

It will be interesting to see how your levels of T3 and T4 were at this last blood test as if on sufficient Carbimazole your metabolism should appear to be slowing down.

I hope that makes some sense :

No, I'm not hyper any longer - I had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism and self medicate to be well.

pennyannie profile image
pennyannie in reply tocrisathome

PurpleNails - please see above - first blood tests from last November - I'm stumped - though that's not too hard to do some days !!!

crisathome profile image
crisathome in reply topennyannie

Sorry that TSH wrong it should read 0.01

pennyannie profile image
pennyannie in reply tocrisathome

HaHa - I misread the typo and made it right - !!

pennyannie profile image
pennyannie in reply tocrisathome

In a nutshell - there are 2 main Graves antibodies - a TSI - ( a thyroid stimulating ) and the a Tr ab ( a thyroid receptor blocking ) antibody :

The NHS generally report back on a TR ab reading - and do not analyse the bloods any further but within this antibody reading there can be both stimulating and blocking antibodies clashing and cancelling each out and causing a range of extreme symptoms.

We sometimes see levels of T4 up in the 80's + so your levels are relatively low but that doesn't for one minute mean your symptoms are no less real and uncomfortable to manage and live with.

At any one time you can have stimulating or blocking antibodies causing your T3 and T4 to go completely hay wire and you may also experience a ' middle ground ' when these 2 extremes of antibodies cancel each other out and leave you feeling relatively well for you.

You maybe eating for England but loosing weight, you may be exhausted doing nothing, just sitting on the sofa, but wanting to run a marathon, you maybe anxious, nervy and jumpy, have extremes of temperature, all over body and muscle aches, feeling like you have permanent flu, and your heart pounding out of your chest, and so the list of symptoms goes on.

You may like to dip into Thyroid uk who are the charity who support this forum and where you will find more about hyperthyroidism and a much fuller list of symptoms to help you understand where you are in the process. thyroiduk.org

Graves is a poorly understood and badly treated auto immune disease and said to be stress and anxiety driven. elaine-moore.com

The thyroid is the victim in all this and not the cause.

The cause is with your immune system and for some reason or another your immune system response has gone on the attack and turned on your body, rather than protecting it.

it is because the thyroid is such an important, major gland, that the symptoms experienced take you to the doctor and the AT drug is prescribed to ' buy you time ' waiting for your immune system response to calm down and stop attacking your thyroid.

There can be a genetic predisposition with someone in your extended family maybe a generation away from you with a thyroid health issue and it can be triggered by a sudden shock to the system like a car accident or an unexpected death of a loved one, or it just occur ' out of the blue '

The NHS generally treat with the AT drug for around a 15-8 month window and the hope is your immune system response calms down within that time frame and you can come off the AT drug and carry on with your life drug free.

However the most recent research is suggesting that the longer the AT drug is taken and better the option for the patient :

There are many forum members who have been on Carbimazole for some considerable length of time and I just wish I knew all this when diagnosed Graves back in 2003 and having had RAI thyroid ablation in 2005 as I knew nothing until 10 years later when very unwell and found myself on this forum looking for help and advise.

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

crisathome profile image
crisathome in reply topennyannie

Thanks so much PennyA for the fantastic explanation above, which I am going to read again later, probably a couple of times so that it sinks in 😂 I will also take your advise and check out Throid UK

Thanks for helping me.

pennyannie profile image
pennyannie in reply tocrisathome

No worries - you likely are in information overload now so don't get stressed - stuff sinks in even with the horrible brain fog :

crisathome profile image
crisathome in reply topennyannie

Hi Penny, Thought I'd let you know, Hospital Secretary informed me Nurse on leave but would pass on my concerns to the Consultants.A Dr called in the afternoon and after asking me to explain, he told me to keep on the 10mg until my next phone appointment with the Consultant at the end of September.

I'm going to mention about having my vitamins and minerals tested but I don't think that they are actually trying to find a cause of my Hyper just yet, I remember the Consultant said they were going to put me on Carbimazole for 12 months and then take me off it and 50/50 I would be ok and if not, then they would go back to the drawing board.

I'll come back after I've spoken to the Consultant next month.

Christine x

PurpleNails profile image
PurpleNailsAdministrator in reply tocrisathome

If you had TRab test and uptake scan there should be no ambiguity of the cause, presuming your doctors can interpret the numbers and recognise different images. I believe the computer calculates the exact % of uptake making it conclusive, as well as the difference of distinct images.

Seems your doctors aren’t interested in the cause. It may a simpler to treat with carbimazole for limited time then move the RAI (or surgery) but that 1 approach for all may not be best for you.

18 months is standard aim for carbimazole. They seem to be rushing it even further by saying carbimazole for a set 1 year.

If your levels drop too low it isn’t appropriate to remain on carbimazole.

Stopping carbimazole if your level rise again isn’t appropriate either.

There’s lots of research showing longer term, low dose carbimazole gives better outcomes & is safer than stopping & restarting.

You need carbimazole at the right level until you don’t.

You’ll need another thyroid function test before next consult. Try to have nutrients including.

pennyannie profile image
pennyannie in reply tocrisathome

Hey there Christine :

I hope the is 10 mcg of Carbimazole is now resolving your symptoms ?

From memory I had follow up blood tests every 6-8 weeks with the hospital liaising with my doctor as to any dose adjustment of Carbimazole deemed necessary.

It is essential that regular blood tests are run and you are dosed and monitored on your T3 and T4 readings and not a TSH :

Ask your doctor to also sanction the ferritin, folate, B12 and vitamin D blood tests as when metabolism isn't running exactly right these core strength vitamins and minerals can nose dive through the ranges and simply compound your health issues.

It reads as though they see you as a watch and wait patient :

Please be aware that 12 months may not be a long enough period on the AT drug :

The most recent research is suggesting the longer the patient stays on the AT drug the better the outcome for the patient :

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

I was diagnosed Graves in 2004 and on Carbimazole for around 15 months - and told at my very first hospital appointment that I couldn't stay on the AT drug long term as it was too dangerous and that after around a year I would have RAI thyroid ablation.

I was compliant as I didn't know any different back then and had RAI thyroid ablation in 2005 and I deeply regret this treatment option.

I now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.

I had 1 health issue and now I have 3 :

Routinely for hypothyroidism the NHS prescribe T4 Levothyroxine medication.

I became very unwell in around 2014/2016 - and when refused both T3 and Natural Desiccated Thyroid I started self medicating in 2018 and buy my own full spectrum thyroid hormone replacement to try and be as well as I can.

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

crisathome profile image
crisathome in reply topennyannie

Hi Penny, Been back on 10mg for 3 days and feel better already.I'll have a blood test before my next phone appointment with the Consultant and the nurse did say that I will have regular blood tests while I'm being treated.

I'll let you know what's been said by the Consultant at the end of this month.

pennyannie profile image
pennyannie in reply tocrisathome

Okey doke then - thanks for updating us all :

How often are regular blood tests ?

Is it 6-8 weeks and sooner if your symptoms change and you feel more unwell ?

Please ensure that you are dosed and monitored on a Free T3 and Free T4 result and range and NOT A TSH.

Please make sure your ferritin, folate, B12 and vitamin D levels are tested :

You can run these tests for yourself if your doctor isn't able to and forum members can advise if you start a new post with the results and ranges.

A new questions deserves a new post from you and then all forum members can help you and will look back at your previous posts as you go through this process.

Doctors are not taught about vitamins and minerals and they are a crucial part of your health and well being.

There is a whole page of private companies listed on the Thyroid Uk website who are the charity who support this forum and some offer a nurse home visit to draw the blood for you if that suits you better.

You will also find a full list of both hyper and hypo symptoms which you might like to take note of, and compare to your symptoms as go through this phase of treatment with Carbimazole as well as several other pages of ' all things thyroid ' and related subjects.

thyroiduk.org

crisathome profile image
crisathome in reply topennyannie

Hi, just got my letter from the nurse who lowered my Carbimazole last week to 5mg.

"TSH 0.31 and FT4 7.5

The results of the blood test are detailed above and show an improving thyroid profile. I have asked her to reduce Carbimazole to 5mg od."

A very short and sweet letter really but I am going to contact her on Monday to ask her to send another letter to my GP to correct the dosage to 10mg again.

pennyannie profile image
pennyannie in reply tocrisathome

That letter means nothing - use the back as a shopping list !!

With every result you must have the ranges.

In order for the result to mean anything it needs to be put into some form of context :

You must be dosed and monitored on a TSH + Free T3 + Free T4 result and range :

As these 3 need to be seen in conjunction with and to each other :

We need to see where your T3 and T4 sit after 6-8 weeks on 10 mcg Carbimazole and watch the T3 coming down and the T4 going up into a more normal ratio otherwise we are working in the dark and adjusting the AT dose on a whim - which was precisely what happened last time.

Maybe you will need to do these blood tests for yourself -

Please talk to your doctor as these results even when right will be wrong going by this nurse's limited understanding :

crisathome profile image
crisathome in reply topennyannie

I agree, the nurse shouldn't have changed my dosage until I'd seen the Consultant, from my limited knowledge the TSH wasn't even within the normal range and she decided it was fine to halve my dosage.

Anyway, I'm feeling better now I'm back on 10mg and at least I can stay on it until my phone appointment at the end of

the month.

I might change having my blood tests to my Doctors as they put my results onto my Nhs App.

I'll keep you updated ... ........

pennyannie profile image
pennyannie in reply tocrisathome

Glad you are feeling better :

Just make sure your TSH, T3 and T4 are tested so we can track against your previous results.

crisathome profile image
crisathome in reply topennyannie

Hello, I've just had a call from Thyroid nurse who reduced my Carbimazole before going on a week's leave. I needed her to inform the Gp that I had gone back to 10mg, which she is going to do.She asked what symptoms I had on the 5mg which I told her, I then asked why she had halved the Carbimazole when the TSH was only 0.31 and she told me it was getting close to the (0.35 - 4.94) Range but more importantly my FT4 had dropped to 7.4 (9 - 19).

She told me to stay on 10mg as agreed with consultant last week and to discuss with Consultant at my phone appointment on 26th.

I asked why there was no FT3 result in her letter and she said the didn't check for it but she'd request it specially for next time.

I also asked about testing for low Vitamins/Minerals, she said they don't do that but maybe my GP would request it for me.

I questioned why I wasn't getting the blood results to my Nhs App as I do when bloods taken at my Doctors surgery, she didn't know a d suggested I can change to having my bloods taken at my GP next time.

I've already checked with the surgery and there's an almost 3 weeks waiting list at my surgery, so can't do it next time but maybe I'll change after that.

I've also gone back through my Nhs records and found blood tests going back over 10 years showing low TSH and I've been complaining about symptoms for at least 20 years, I wondered why I hadnt been treated all those years ago, she said because my T4 and T3 were in range and then got slightly abrupt and said, anyway let's concentrate on being treated now.

I know I've had these symptoms for a long, long time but left untreated and instead medicated for the last 20 years for anxiety.

Which I've never understood why I was anxious.....

Anyway, long post, hope you can make sense of it.

Thanks, Chris

pennyannie profile image
pennyannie in reply tocrisathome

Well you can get your bloods taken privately if you don't want to wait for your surgery as, even having waited, there is no guarantee they will run the vitamins and minerals anyway.

I was refused back in 2016 and when I'd started reading up on here and learning that there are private companies who can run the correct bloods tests and forum members who would explain what it all meant - I saw a way forward for myself.

We need to see a full thyroid panel which includes a TSH, T3 and T4 plus antibodies, inflammation and ferritin, folate, B12 and vitamin D - it's around 11 tests and then we can see exactly what is going on.

The antibody test included above is not for Graves, but there is a separate test for this - I know Medichecks run one - and not sure which other company does but we have a positive for Graves haven't we ?

You were ' mildly positive ' TRab at 0.5 - but we never had a range - do you have a full reading there and the range for Graves and the results of the uptake scan ?

Thyroid UK the charity who support this forum have a section within their website detailing all the private companies who run the blood tests and some offer a nurse home visit if this suits you better. thyroiduk.org

In the nurse's defence, she saw your TSH coming up into range and a T4 falling out the bottom of the range - so her thinking was to drop the dose of the AT drug a little to allow more of your own thyroid hormones to be released into your blood stream - however one needs to look at the T3 and T4 together to make this decision.

Some people feel better being totally blocked by the AT drug, and if their T4 drops to far down the range - a prescription for a measured dose of T4 is prescribed so to try and keep the T4 in range and this is called Block and Replace treatment.

Graves is an auto immune disease which tends to be driven by stress and anxiety, and yes I too lived for years with stress from a very young age and just thought it normal - very slow to do anything, like walk or talk, dyslexic at school, left handed and bullied and believe I was struggling with Graves hypothyroidism from childhood having inherited it from my Dad.

crisathome profile image
crisathome in reply topennyannie

I don't have any more details for the mildly positive TRab at 0.5 , no range given. What I am getting from the Endo Consultant and Nurse at the hospital, are the letters they send to my GP, with the bare facts and very little detail.

I've had nothing in writing about the Uptake Scan or Ultrasound, although I asked the nurse and she just said they were fine.

I'll ask the Consultant about them at my next appointment about what they actually showed.

I'm so sorry about your stressful childhood, I can remember being described by many people, as "highly strung" , I had a very unhappy childhood and I now think my Mother had undiagnosed Hyperthyroidism, which made her a nightmare......either crying or flying off the handle all the time, which I was usually the brunt of.

pennyannie profile image
pennyannie in reply tocrisathome

Within your mildly positive Thyroid receptor blocking antibody reading -

there will be stimulating as well as blocking antibodies - both extremes of symptoms vying for control of your thyroid and your ' mildly positive ' reading is the net result ;

While the antibodies are still raging you may feel extremes of symptoms and there is also a phase when booth these extremes cancel each other out with you feeling relatively normal for you, though probably exhausted by it all.

The AT drug is blocking your own thyroid production during this phase of the disease and mitigates, hopefully, the extremes of the symptoms that can be experienced.

The NHS rarely test the antibodies again as they can't do anything about them anyway - but it would make more sense to have them run again before there is a decision taken to come off the AT drug in an attempt to find remission.

PurpleNails profile image
PurpleNailsAdministrator in reply tocrisathome

I agree - there are no range & no FT3 result.

Also by most range we see a FT4 of 7.5 is in hypothyroid territory.

Typical FT4 ranges might be:

(8 - 21)

[9 - 19.1].

(12 - 22)

[7.5 - 21.1]

crisathome profile image
crisathome in reply toPurpleNails

Hi PN, can you explain a bit about the ranges and why there isn't just one set range, instead of four as you show above.I'm really trying to get my head around all the terms etc for Hyperthyroidism.

Also, as you mention above, the T3 is missing, the nurse couldn't explain why it hadn't been done and is going to specially request it next time.

Have you any ideas why I'm drifting into 7.5 Hypo territory as my TSH level comes up?

Is it really bad to be going into Hypo range?

I have a feeling, I'm not typical of most Hyper cases and wonder if something else is going on but no-one seems to want to think outside the Box with the rigid Nhs ranges.

PurpleNails profile image
PurpleNailsAdministrator in reply tocrisathome

There is not a set range and there are many more than 4. Sorry to confuse you, I was giving you some examples.

It vary as laboratory machines can use different testing methods and be calibrated differently.

Often TSH is tested and if that’s abnormal FT4 is tested then if that abnormal FT3 is tested.

The GP requests thyroid function & lab decides what is tested. Sometimes specialist can specify FT3. We say FT3 as this test free triiodothyronine. The unbound hormone a total triiodothyronine isn’t as useful.

The TSH signals thyroid to produce if the body needs more hormone it rises to signal thyroid to increase work.

If hormones are already high the TSH drops to signal the thyroid to ease.

Once the thyroid is abnormal the TSH can behave oddly and can stay low when it should rise further.

The ranges are an average of what normal for most people. Many people say the ranges are too wide. For example in some countries you would be treated for hypothyroidism if TSH is 3 but in UK many doctors say it only requires treatment if it get to 10.

Many people would feel hypothyroid if low in range. Others are ok. Very few don’t feel symptoms when FT4 is below range & FT3 is said to be more telling of symptoms.

crisathome profile image
crisathome in reply toPurpleNails

Thanks for the explanation regarding ranges, this is such a difficult subject to understand but I am trying.

PurpleNails profile image
PurpleNailsAdministrator

What is the cause of your hyper?

I found I was quite sensitive & symptomatic around dose changes more than 5mg every other day was too much.

What were your results? The TSH can be unresponsive & can be lower than expected for a long time after hyper. Your doses need to be adjusted by FT4 & FT3.

crisathome profile image
crisathome in reply toPurpleNails

Hi,

Cause of hyper is Thyrotoxicosis secondary to Graves.

I was surprised to have the dosage halved last week, after only being on 10mg Carbimazole since 1 July, so just over 7 weeks.

I've took 10mg this morning as I can't stand the symptoms again and try to get hold of the nurse tomorrow.

PurpleNails profile image
PurpleNailsAdministrator in reply tocrisathome

Often doctors say low TSH must equal Graves, was it confirmed with positive TRab or TSI? As often they just assume.

Did you have uptake scan? What did radiologist report indicate. Ask for copy of scan report. You a legally entitled to all results.

It quite normal to start on higher dose (to drive down levels) then half dose to stop levels going below range and keep levels even.

However the staring of 10mg reduced to 5mg after 7 weeks is extremely low, more like a transient hyper elevation than what you’d typically see with continuous hyper conditions so that’s why it’s important you verify the diagnosis.

crisathome profile image
crisathome in reply toPurpleNails

You're right about the diagnoses being assumed as the Consultant said my levels were not too bad but my symptoms were very bad, he said some people are more sensitive. He said a lot of people would not have any symptoms with my levels.

Levels at initial consultation 6th June

TSH <0.01, Free T4 22.6, Free T3 6.8 pmol/L

I don't understand any of the above readings by the way.

Thanks for trying to help, I've taken 10mg Carbimazole this morning and hope the nurse won't be angry with me. I'll try to contact her tomorrow and let you know.

Thanks, Christine

PurpleNails profile image
PurpleNailsAdministrator in reply tocrisathome

Levels & severity of symptoms are not an exact science & doctor shouldn’t judge as such. We don’t know what normal for you as a baseline is rarely recorded.

My levels were FT4 23 & FT3 7.8. I had no remarkable symptoms but was described as ‘very’ hyper as my TSH was undetectable. My level had likely gradually risen over about 5 years according to old records. (It was missed by doctors)

Graves levels typically go 3x normal level eg FT4 - 40 & FT3 - 10. The ranges need to be included for accurate interpretation.

Carbimazole works quickly by reducing production of new hormone but the balance of levels can take weeks to balance out.

If you were a car the carbimazole would be like squeezing the flow of fuel entering the tank. The tank level was high carbimazole reduces level & as your engine uses up fuel the level come down.

Your engine uses a steady amount (if you do more you’d need to allow fuel) or the store of fuel would be used up.

What I’m saying is altering Carbimazole today may not correlate to levels & symptoms because the it takes time to alter levels. It reduces production not existing stores.

To explain results.

TSH, the thyroid stimulating hormone is a pituitary hormone which signals the thyroid to make new hormone. When thyroid levels aren’t correct the TSH responds increasing when low, dropping when “high”. The TSH is not a reliable measure of thyroid hormones.

FT4 free thyroxine is the free & available level of T4.

The thyroid makes T4 & a tiny quantity of T3 triiodothyronine.

Some of the T4 is converted more T3 to bring the FT3 to the necessary level.

FT4 can be adequate but sometimes factors affecting conversion to FT3 can cause low FT3 which can cause hypothyroid symptoms.

Patients say FT3 measurement is most important and most linked to symptoms. Then FT4 - the TSH being unreliable is least important biomarker and has no bearing on symptoms but doctors concentrate on TSH then FT4 rarely consider FT3.

crisathome profile image
crisathome in reply toPurpleNails

Let me give you those readings again from consultation 6th June

TSH <0.01, Free T4 12.6, Free T3 6.48pmol/L

Cant believe I sent the other reply with such inaccurate figures, I think I'm actually losing the plot......

crisathome profile image
crisathome in reply toPurpleNails

I've checked the Consultant letter again and he says "I have checked her TSH receptor antibody and have also requested thyroid imaging. I think the differential diagnosis in her case is between Graves disease and a multinodular goitre as the cause of overactive thyroid" .

At the next phone consultation with the nurse to see how I was feeling on the Carbimazole, it was this letter which stated under diagnosis "Thyroxicosis secondary to Graves disease"

But she may have seen the results from the two scans I had, one being an Ultrasound and the other a Nuclear something of other, injected with stuff and wait for scan thing.

I do feel the hospital is being pretty thorough but this being the Uk, very slow.

The Consultant has also told my GP to refer me to Cardiology due to the Atrial fibrillation diagnosed last November

I'm a bit annoyed about this as I feel the Doctor should have referred my last November 21 and now another long wait.....and worry.

I'm considering going private with this as if there's something seriously wrong, say Heart Failure, I could be treated for it.

Doctor did put me on Beta Blockers and Warfarin, so that's something.

Thanks for helping me and sorry I'm a bit hopeless with the terminology etc.

Christine

PurpleNails profile image
PurpleNailsAdministrator in reply tocrisathome

Uptake scans are quite conclusive as it purpose it to plot the activity in areas of thyroid. The pattens are distinctive, With graves the activity trough-out thyroid is markedly concentrated. A toxic nodule or nodules has a specific area, usually the remaining thyroid is inactive.

If there ambiguity after an uptake scan you’ve every right to question why.

The issue is your TSH is suppressed but your levels are not. Are you as person who is well with naturally low level and those level in range are enough to lower TSH?

Has historic high or low levels affected the feedback loop & TSH not responding to lower levels.

The FT4 is low. I have seen examples in hyper where the FT3 is disproportionately high, it happens with Graves & often with toxic nodules. The TSH tends to drop first then the FT3 leads with FT4 rising behind it. Doctors think FT3 is always last to alter but than not what happened with me.

Seek clarification from the TRab result & uptake scan report.

crisathome profile image
crisathome in reply toPurpleNails

Thanks I will ask for clarification of the TRab and uptake scan report when I have the phone appointment with the Consultant at the end of the month.I'll let you know what he says.

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