Hello everyone this is my first post and feeling anxious. I was diagnosed with overactive thyroid about six months ago although I felt really unwell for about eighteen months. Quite unwell and exhausted ~big effort to get out of bed. At first I took myself to hospital and I was told I was suffering from fatigue but I didn’t understand and the hospital didn’t enlarge on the subject so I just went back as before. I was getting worse so went to my GP and he advised me my blood tests from the hospital showed thyroid problems. He prescribed carbizamole and I started to feel better. Apart from feeling unwell my anxiety seemed to be getting out of control~horrible! After a few months they stopped carbimazole as it was Interfering with my bloods and started propylthyoricil.i don’t feel 100% and anxiety is high. My worry is I don’t have a follow up appointment and can I ask to see the specialist again. I feel in limbo and I would welcome any suggestions. Thank you.
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shabbyabbey17
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your blood needs to be tested regularly by the GP or Endocrinologist to monitor the effect of the PTU (propylthiouracil... ) and to make sure the dose is correct or if it needs adjusting .
If the dose is not enough it can mean you thyroid hormone levels (fT4 and fT3)go to high.
If the dose is too much it can mean you thyroid hormone levels go too low.
If T4 / T3 are too high or too low , it can lead to increased anxiety and other symptoms.
I have overactive thyroid and have been on carbimazole long term.
Carbimazole can cause issues for some, PTU is the alternative option. How much are you currently taking.
Have you been told the cause of you hyper? The most common cause of continuous hyper is Graves - which an autoimmune condition. But doctors should test antibodies to confirm this.
If you are still unwell it might be you are not on the right among of PTU. Doctors often go by TSH and not FT4 & FT3. This mean the TSH thyroid stimulating hormone which is from the pituitary makes it appear you are in range but you actual thyroid levels free thyroxine & free Triiodothyronine are not at the right level.
It’s really helpful to collect all your results and post on here so we can explain what it mean & you can learn how to track your level are advocate for the right treatment to ensure you are at the right level.
You are legally entitled to your results ask for a printout . Always add ranges they vary between labs.
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.
I see you did try and write something a week ago and yes, you are likely feeling underactive, and tired and hypothyroid.
Both Carbimazole and the PTU are called Anti Thyroid drugs and do the same thing in the body.
The job of the AT medication is to block your own natural daily thyroid hormone production as I presume your very first blood test showed over range thyroid hormones .
Other than the exhaustion and anxiety were there any other symptoms being experienced that have now been alleviated. by taking the PTU - Propylthiouracil ?
Generally speaking once on an AT drug you need regular monitoring and dose adjustments as if your thyroid levels - TSH, T3 and T4 - are now back in the range the dose of the AT drug should be reduced as otherwise your thyroid levels fall too far the other way and become too low in the range and you experience the equally disabling symptoms of hypothyroidism.
To know exactly why you are unwell and prescribed an AT drug antibody analysis will also have been run from this first blood test to identify which antibodies were also over range and positive and the medical evidence and a diagnosis explained to you.
This appears not to have happened so I think you need to ask your doctor what s/he believes you are dealing with and arrange copies of all your blood test results rom the start of your unwellness.
Do you have online access to your medical records as you can probably see for yourself all the surgeries results and actions taken ?
When metabolism is running too fast or too slow the body struggles to function well and it is very important to keep your core strength of vitamins and minerals optimal so ask if you can have run a current TSH, Free T3 and Free T4 along with your ferritin, folate, B12 and vitamin D and just post all these results and ranges on here, in a new question and you will be talked through everything and advised accordingly.
Thank you pennyannie for your advice. I’m definitely not as informed as you and I think I put that down to feeling so unwell at the time I saw a specialist, but I will now speak to my GP again and get as much information as I can. Who do I believe the specialist said blood tests every six weeks as PTU could damage my liver but my GP said NO every year! As for your question re: exhaustion and anxiety I have this awful feeling that is still there of my whole body behaving in a most scary way mostly at night which always wakes me. It’s as though my body will explode. It does pass but very scary at the time. I shall ask my GP if I can see the specialist again as I haven’t got a follow up and feel in limbo. Thank you pennyannie for your advice.
I only learnt of my health issues back to front - 10 years after diagnosis when very unwell - again and thought maybe that Graves had come back - only to read it never wen away !!
All my thyroid health issues happened in 2004/5 and I knew nothing then, was very unwell, and totally reliant on the doctors and trusted their judgement as my brain was totally frazzled and the exhaustion beyond words -
and when unwell and out of ones depth - you go the doctors - simple - isn't this what they are there for ?
The current climate isn't helping but that apart - once on an AT medication you need 6-8 weekly blood tests to monitor how well the PTU is working at controlling your TSH, T3 and T4 levels - as these should be in the range at optimal levels - and your health improved and hopefully some symptoms alleviated.
I have Graves and was monitored by the hospital every 2 months for around 15 months when I was on Carbimazole and my dose of the AT drug adjusted according to how my T3 and T4 levels were and to try and alleviate symptoms.
First and foremost we need to know what your medical diagnosis is and this will be through which antibodies which were found positive in your blood and which should have been found with further analysis of that very first blood test.
Not all causes of ' overactive ' thyroid are medicated with an AT drug - so the medical evidence is crucial -
Graves is treated with an AT drug BUT Hashimoto's is not - these are both auto immune diseases that cause a low supressed TSH and over range T3 and or T4 reading - and we need to know id with Graves - do you have the unique positive and over range antibodies for this AI disease - either a TR ab - a Thyroid Receptor blocking antibody or a TSI - a Thyroid Stimulating antibody reading.
As for the ' danger ' of the AT drug - this is the most recent research we have and put simply the AT drug is safe long term , but yes of course, as with any medication, it needs checking at regular intervals - pubmed.ncbi.nlm.nih.gov/338...
P.S. Quite why your immune system has been ' triggered ' to turn and attack your body as opposed to defend it which it normally does and is meant to do - is the 64 million $ question :
There can be a genetic predisposition to AI diseases that tend to get diagnosed when the thyroid is involved - is there any person in your extended family with an AI disease - aunts, uncles - ?
My Graves was triggered by a shock to my system - i was attacked - and Graves is said to be stress and anxiety driven and can be caused by a sudden shock to the system like a car accident or an unexpected death of a loved one - I'm just scratching at the surface as it is far from simple to explain in a few sentences.
Knowing what I know now, mostly from a few books and this forum I have been Graves/ Hypo from a child- probably birth and inherited this from my father who was medically discharged from WW 2 and I popped out 9 months later.
My birth was very different from my brothers - 4 years older than me, as was my growing up and trying to learn - I'm dyslexic and profoundly left handed - though have to say now I self medicate and run a T3 slightly over range my dyslexia only comes to the fore when I'm tired.
I think you need to contact your specialist and tell him what your doctor said about only testing in a year. Listen to your specialist and get another doctor Jo xx
When my results were through the roof my local endo put me on carbizamole for 6 months and Levo as a replacement. Following RAI nearly a year later it took 18 months to get me on a stable regime of 100/125 Levo alternate days. It does take ages to get sorted. Good luck. PS I'm fine and dandy still 10 years later!
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