This is my first post. I have my second endo appointment today and wonder if I could get some advice as to anything I should ask before going in.
I have just received my latest blood test results and they show I have gone into the hypo range. I was hyperthyroid. I am on 20mg of Carbimazole per day and 80mg of propanalol.
I am still experiencing sweating and feeling hot especially as soon as I move about. Not quite as bad as before treatment. But those symptoms had gone away when I first started treatment on May 10th ‘24 (after 3 weeks of meds).
I was diagnosed in April this year and started Propanalol in April after hospital admission for atrial fibrillation caused by over active thyroid.
I attach my blood test result from when i started treatment.
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Catlover2145
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TSH can be slow to react, the fact it’s not suppressed is good news. But carbimazole needs to be adjusted by FT4 & FT3. TSH is too unreliable a measure.
Had you had any thyroid antibody tests? Important to determine what is causing hyper. It can be transient.
Was the FT4 & FT3 repeated recently after starting carbimazole?
My free were very low for TSH to raise from suppressed. That can leave you hypothyroid, but if your doctor is more focused on seeing TSH raise, that can leave you unwell.
Thank you for your prompt response. I meant to post that but have brain fog and was panicking over photo problems.
I am only doing blood tests for my liver, FBC with differential and Free T4 and TSH every 6 weeks since starting Carbimazole 20mg. Have done two lots so far.
The latest Free T4 showed i was slightly hypo (posted above) although I’ve not noticed any symptoms (other than feeling dread/depressed and anxiety which I have suffered from since my 20’s but hadn’t been feeling so bad until recently).
I'm sorry to read you have been dealing with these other health issues for 30 odd years.
Have you had medication and found anything that eased these issues ?
I doubt you will start feeling ' different symptoms ' yet - but if the dose of the AT drug is not reduced down your T4 may quickly fall down the range -
we need to try and keep the T4 at around midpoint - so on that range above at around 15/16 :
I can see the high FT4 from 09/23 but no recent FT4.
Testing TSH, FT4 & FT3 all together is quite important. Sometimes FT4 can fall very low but FT3 stays disproportionately high. Or FT4 is high & something is affecting FT3 levels. These can be treated / tackled with different approaches but first you need the results.
Are you using private testing?
Private testing options:
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00 fast overnight, take carbimazole as normal. avoid biotin 3 days before test.
See link for private companies with discounts with many packages & options.
Thank you for explaining all of that as it was very helpful.
Sorry about the mix up. My recent FREE T4 results are attached.
I had my appointment and mentioned Free T3 and she said she would add that test to my next lot of blood tests in 6 weeks but she felt that my Free T3 was also probably lowered. I am slightly low on funds atm but will test privately if necessary. It might explain why I’m still feeling very hot and sweaty when active (definitely not the weather).
My vitamin D was low in April but is normal now although I am now taking a supplement and my B12 was tested a couple of weeks ago due to tiredness.
Thank you for explaining everything. It was very helpful. I have brain fog which has got slightly better over the past six months but I still struggle with understanding everything to do with thyroid issues and testing even with reading posts here and on FB groups.
My carbimazole dose was lowered from 20mg to 5mg per day today and I’m being reviewed in 2 months.
Your T4 is now back in range so your T3 is likely lower than it was at the height of this phase of ill health -
however it is your Free T3 level that causes all the symptoms - - too high a T3 and you will feel hyper - just as too low a T3 and you will start experiencing symptoms of hypothyroidism.
Carbimazole is an Anti Thyroid drug and all it does is semi block your own new daily thyroid hormone production while we ' play for time ' waiting for this immune system malfunction to calm back down again and hopefully offer you some symptom relief in the meantime while we wait for your thyroid function to reset itself back to ' your ' normal again.
There is more than 1 reason why this may have happened to you - and without knowing the reason and the medical evidence of which antibodies were found positive and over range in your initial blood test - we can't advise on which treatment option should be followed going forward.
These antibodies look like TPO - TgAB - TRab - TSI - readings alongside ranges - and there might be words saying something like a TSH Thyroid Receptor + single number and range.
Do you have online access to your medical records as these antibodies might have been run but just not mentioned to you.
When metabolism runs faster than normal as in hyper type symptoms or too slow as in hypo type symptoms the body can struggle to extract key nutrients through food no matter how well and clean you eat -
so suggest you ask your doctor to run a ferritin, folate, B12 and vitamin D blood test as if these core strength vitamins and minerals are low your health will be compromised further than it need be.
So when you see the endo today - maybe ask if a T3 reading was ever run - and what was result and range - and which antibodies have been found positive and over range in your initial blood tests - and what is your diagnosis and the treatment plan going forward.
Since your T4 is now in range - and AT drug should be reduced down as otherwise you risk your T3 and T4 falling too far through the ranges and then dealing with the equally disabling symptoms of hypothyroidism.
So I can now see a positive antibody for Graves and you also detail over range TPO antibodies and indicative of Hashimoto's another thyroid Auto Immune disease running alongside.
The treatment for Graves will take precedence over Hashimoto's as Graves is said to be life threatening if not medicated.
If your symptoms have not been relieved there maybe there could be the option of trying Block & Replace -
this means the AT drug is increased to fully block your own daily thyroid hormone production BUT a prescription is also given for T4 - Levothyroxine so your thyroid hormones do not fall too far through the ranges.
The treatment for Graves is an AT drug - either Carbimazole or Propylthiouracil ( PTU ) and the NHS allocate a treatment window of around 15-18 months with the hope that this is just a ' blip ' as it can be for very many patients, and that your immune system calms back down and your thyroid resets itself without the need for any drugs.
Graves is a poorly understood and badly treated Auto Immune disease and there is no cure -
there is likely a genetic predisposition maybe with an extended family member a generation away from you with a thyroid health issue and everybody's journey with Graves is different though stress and anxiety tend to be common triggers.
Graves can occur after a sudden ' shock to the system ' like a car accident or unexpected death of a loved one or seem to appear totally out of the blue - there can be something of a brain / body mismatch in one's expectations of what you can do - but can't - as your body is in a heightened state, totally exhausted and you need to rest, be kind to yourself and try and turn off.
We do now have some research that you might like to keep :
I am just back from my appointment and my carbimazole was lowered from 20mg to a maintenance dose of 5mg per day. The doctor was very helpful today and said she would add FREE T3 to me next lot of blood tests in 6 weeks.
My grandmother had an overactive thyroid and her eyes were affected at one point (starey was how my Mum described it) and my Mum also had what I think was subclinical thyroid issues. I have had my thyroid levels tested quite a few times in the past decade as I’ve had chronic tiredness and the GP had asked if there was a family history of thyroid.
But unfortunately my GP retired about 2 years ago and I only found out in April this year because my sleep apnea clinic suggested testing as I was still very tired after starting CPAP therapy.
I had been having bad palpitations but put it down to anxiety. The endo doctor believes my GP’s blood tests from last summer ‘23 showed my thyroid playing up but my new GP never mentioned it to me.
Once again thank for all the information and advice.
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