I've been diagnosed with graves disease and put onto carbimazole and beta blockers, I didn't have any blood tests for the first 6 months and started to feel better from my original symptoms, (terrible hand tremors, palpations, anxiety, hair loss, lots of toilet visits) then worse in a different way, the medicine had been very effective but sent me too far the other way into hypothyroidism, I'm getting frequent blood tests now arranged by my local hospital and I'm on half the dose I was, I can see from my blood test results that I am very up and down but at the moment it looks like I'm going to end up with under active thyroid again, I'm not sure who monitors these results if anyone and am feeling very lost with who to go to, my g.p who I approached first didn't think my palpations were a concern, and then when I'd asked for a blood test 5 months after starting carbimazole because nobody was monitoring me... They gave me a diabetes blood test check up, which wasn't useful. The hospital I eventually took myself to are fantastic but I don't think they have a responsibility to monitor me? I'm not sure who to approach now that I can see I'm heading back towards hyperthyroidism, should I ask my G.P or the hospital to see an endocrinologist? The hospital arranged one initially but as my tremors and first symptoms went away, I told him I felt better, so he sent me for a blood test to see where I was at but didn't think I'd need a follow up. I'm not even sure how to contact him as this was all pre arranged by the a&e department I originally presented myself to 8 months ago
Who should I contact?: I've been diagnosed with... - Thyroid UK
Who should I contact?
Welcome to forum.
The specialist should be in charge of monitoring & blood tests until they either leave instructions with GP & they agree to monitor with guidance from specialist or they discharge you.
You don’t need to visit every time. They can telephone to adjust medication. I had a specialist nurse follow up.
The GP also has a duty to watch your health. I found they sometimes would tell me to take everything to specialist, even if it was something very obviously unrelated. But the specialist would do the same & tell me to go to GP as levels were in range & therefore not thyroid related.
Unforgivable you were put on carbimazole for 6 months and not checked. Initially test should be 6 weekly until levels are consistently stable then can consider every 3 months.
Follow up each time and ask when will next next be due & who will arrange it. Chase up the results because doctors / admin miss issues all the time.
Get a copy of blood test results, you are entitled to your results. Many have online access or have printed copies. You must not accept verbal or hand written. As you’ll need the unique lab rabies for each result.
This way you can monitor & track yourself & ensure your treatment is right for you.
Doctors do not always test a complete set of thyroid test. They also diagnose Graves based on high thyroid level without confirming the correct antibodies are positive. Hyper can be transient.
For full test you need
TSH, FT4, FT3.
TPO, TG, Antibodies. Is Graves suspected you must have TRab & / or TSI antibodies Tested. This is often tested once & not repeated.
Also import to test folate, ferritin, B13 & vitamin D.
Gluten issues common with thyroid issues has this been screened?
Nothing gluten related was tested, is this a gluten tolerance test I should try to get? Nor folate, ferritin or vitamin D or b13.
I've had graves confirmed and currently I've just finished two weeks of three times a week T3 blood tests (it seemed like such a lot and I'm not sure if that was a mistake in the system? Perhaps this should have been every 3 weeks) this has ranged from 4.1 - 4.6 pmol/L so is good.. I was also automatically put in for renal bone profile tests, thyroid profile and fbc with differential. This should have been every 8 weeks but the automated system has input this wrong meaning the phlebotomist draws blood and gets these checked every time I come in despite my protests, they've all been great but they have to do what the system requests. The results of these tests from when I got diagnosed to now:
Thyroid stimulating hormone 7.77 - 2.20 mIU/L
Free T4: 54.4- 13.9 pmol/L
Bone profile all normal
White and red cell count normal
RDW 11% - 11.7%
Neutrophils 3.0 - 6.44 x10^9/L (getting high)
Alkaline phosphatase 111- 101 IU/L (bounces high then fine then high)
The trouble is this is all automated since going to a&e and I don't have the name or contact details of the endocrinologist that I saw, I've saved every scrap of paperwork but it doesn't have a name or contact and my G.P has received a copy of all of the above but doesn't want to know.
If you show test, then result and (range eg 12 - 22) we can interpret accurately.
What was TRab or TSI result? Antibodies have (0-X) range or <X ranges.
Usually FT3 is tested along side TSH & FT4. Sometimes lab “drops” FT4 is TSH in range but TSH can be unreliable you need FT4 & FT3 tested too.
Many arrange private tests as NHS do not complete full test & not at sane time, it’s often helpful to have a full picture at once.
GP or specialist should be able test for gluten allergy. Intolerance would not show up on test. So best to test while on gluten diet to full out celiac. Then even if negative trial strictly free gluten.
Contact hospital ask for endocrinology department & explain you need to contact dr - ask who is looking after you?
Practice staff, terrible for recording letters but not auctual reading them.
Another way is to look at hospital website they may show the endocrinology clinics available & who is in charge of them.
Private testing.
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, avoid biotin 3 days before test.
See link for private companies with discounts with many packages & options, from basic function to antibodies & nutrients)
thyroiduk.org/testing/priva...
Medichecks thyroid advanced is as good option.
Hello Sunbeamdapple and welcome to the forum :
Who is currently prescribing you the Carbimazole ?
What paper work do you have there from the hospital who diagnosed you - there should have a contact number there -
It reads as though you are being treated for Graves Disease which is an auto immune disease and something has triggered your immune system to turn and attack your body rather than defend it -
All the AT drug does to put you into a ' holding position ' - much like an aeroplane circling and waiting for a landing slot - while we wait for your immune system response to calm down and hopefully your thyroid reset itself without the need for the AT drug.
The NHS generally allocate around a 15-18 month treatment window with an Anti Thyroid drug such as Carbimazole and all this does is semi block your new daily own thyroid hormones production and slowly your T3 and T4 levels lower and hopefully your symptoms are alleviated.
Yes, this AT drug does need titrating down as your T3 and T4 fall back down into range as otherwise you risk your T3 and T4 falling too far through the ranges with you experiencing the equally disabling symptoms of hypothyroidism - which it appears is what has happened.
Graves carries both stimulating and blocking antibodies and at any time either one of these extremes can be in control of your thyroid and given enough time Graves can burn itself out - as these antibodies exhaust / cancel each other out - with you left feeling pretty horrible and probably exhausted in the process.
Are you having any issues with your eyes - dry, sore, painful, watering, light sensitive - please ensure that all eye drops and ointments are Preservative Free, should be written on the packaging and product, even those prescribed by the NHS.
We do now have some research papers you might like to read/copy for future appointments -
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
I'm with Graves diagnosed and treated with RAI thyroid ablation back in 2005 - just wish I knew more back then - anyway -
Graves is a poorly understood and badly treated Auto Immune disease for which mainstream medical have no answers and the most well rounded of all the research I found when I started in 2014/15 is that of Elaine Moore - elaine-moore.com
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