Advice on my unstable Hyperactive thyroid. My thyroid has been unstable for a while.I had been taking 200mg Propylthiouracil for a while and everything was fairly stable although I didn’t feel that great I had my regular 6 week bloods check and my thyroid was on the 18th May 2022
T4 40.6 (12.0-22.0) T3 11 (3.1-6.8) so I took an extra 100mg propylthiouracil. It came down to to T4 16.6 and T3 4.5 so I was told to reduce to 200mg dropping off the 100mg at mid day med. I started to feel unwell shaky, very lethargic thinking slower not sleeping incredibly hot etc thinking it might have risen again I got in touch with my endocrinologist nurse and got another blood test on Monday just had a quick text from her and it’s remained stable( can’t tell you what it is as she’s ringing at 3 this afternoon. My question is I don’t know what to say I think it’s linked with the thyroid I was feeling great when it was high but now it’s down to 16.6 I don’t feel good. Am I imagine it could the ‘parameters’ that seem to be set in stone no be suitable for me? Any thoughts as I’m not sure what to say.
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Suffolklady
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As I said I haven’t spoken just had a txt as I missed the call and said it was stable on the same level as the last check. I wasn’t checked at 9am this time first time it’s been at 11. 30 best appointment I could get. I asked the endocrine nurse if this mattered she said not at all. I didn’t take my thyroid pills for 24 hours. Not had anything else checked of late but iron levels wouldn’t affect heat I wouldn’t imagine but I’ll wait and see. Thank you for your reply I an ask about the other test.
On your profile it lists Graves Disease - can you give forum members a bit more information.
Do you have a diagnosis of Graves as this is an auto immune disease for which there is no cure - are you ' currently in remission ' or have you received definitive treatment and ' lost ' your thyroid and presumed ' better ' by the medical profession and the Graves resolved ?
I have autoimmune problems, PMR. My thyroid, going back several years, was checked and I was under active so went onto levothyroxine for a while and when my thyroid was stable I came off it. In 2020 I became ill with gastroenteritis and wasn’t able to take any medication including Gabapentin and my predisolone for PMR after three days without going into detail I was hospitalised and extensive bloods were taken. The thyroid test came back with T4 of over a 100 (12-22). Once I came out I was put on propylthiouracil 300mg propylthiuoracil and gradually it stabilised if I come off the meds it would go up so it has been diagnosed as Graves. I haven’t felt well for years but with the other meds I take and the pain from my back it’s understandable.
I have had 6 week bloods for thyroid and for a year or more and it fluctuates but not greatly however in March the T4 went up to 33 so ( I was on 200mg) up the meds again to 250mg then 6 weeks later it went to 40mg so I was put on 300mg at this point I felt okay bit agitated but not too tired. Bloods were then taken in July and the T4 was down to 16.6 so on track and reduced to 200mg revised bloods 6 weeks time. However I started to feel really bad sweating hot flushes tired, thirsty agitated so thought maybe it was on the rise again so after 4 weeks ago I requested another blood as I thought it was going up again but no it was as it says up the top.
Endocrine nurse still very concerned as I don’t feel well at all but her suggested that I book an appointment with the GP and have full bloods done but as far as she can see the thyroid is functioning as it should do with the medication I’m taking. That’s my story if it helps
So do you have a positive antibody test for Graves - either a TRab ( a thyroid receptor blocking ) or TSI ( a thyroid stimulating ) over range antibody test ?
Graves tends to be stress and anxiety driven and considered by medical mainstream as life threatening if not medicated with Anti Thyroid drugs - like Carbimazole or Proplythiouracil - PTU for short.
Most recent research is suggesting that the longer one stays on the AT drug the better the outcome for the patient : pubmed.ncbi.nlm.nih.gov/338...
P.S. I found your reply by chance, as you need to press the reply button to the person as then they get notified and come back on, otherwise your reply is not necessarily picked up and you might feel ignored which is not what we are all about.
Hi Slow Dragon. Yes I agree with you. The medication I took was to bring down the levels as T4 was 40 which had gone up from T4 33 whilst taken an increased dose of PTU so obviously it wasn’t enough, that’s why I took 100mg x 3 a day for 6 weeks. It’s now down to T14.3 which I thought was lowish. I have spoken to the endocrine nurse to discuss it this afternoon. I have to book tomorrow a GP appointment.
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.
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
As an example….when I (finally) got access to my historic test results online….found vitamin D had be tested and was 12nmol (extremely deficient). Was never told or prescribed any vitamin D.
Essential to test vitamin D, folate, ferritin and B12 at least annually…..privately if necessary. Use Medichecks or Blue horizon
Low vitamin levels are almost inevitable with Graves’ disease and Hashimoto’s
Thanks for the advice I can get a print out and have done on most of my blood test. Never dificient on vit D B12 either but had full bloods done yesterday see the doctor Tuesday but never seem to have anything wrong with the bloods. That means I don’t know where to go from there when the doctor says there’s nothing showing up wrong. I have reduced the PTU by 50mg as per instruction of the endocrine nurse on Thursday but if I go any slower I’ll be going backwards. My sweating is terrible which is characteristic to over active but I’m certainly not that with the latest stats. Surprisingly for the last two years maybe more my hyperhidrisis a lifetime of hand and foot sweating disappeared when my thyroid went over active a total mystery unless having the PTU had something to do with it but I was taking higher dose than now. It’s now back with vengeance. I’m so sick of this not feeling remotely well while life passes me by. Sorry feeling a bit sorry for myself atm.
Reduce PTU by 50mg so it doesn’t get any lower (now on 150mg) It doesn’t explain the excessive sweeting dry mouth drinking tiredness. Full bloods taken on Friday results to discuss with GP Tuesday. Thyroid check in 6 weeks time.
Thanks Slow Dragon it’s in hand with blood not thyroid again only been a few days for that. I looked at my stats over the year and when my T4 was down to 14 bearing in mind the perimeter is 12-22 I felt rough. Also in the last 48 hours with the sweating I’m getting hot flush type internal heat and my BP is 150 over 97 which is way to high. I wondered if I’m into the hypo zone. Back in July I was T4 -40 and within 4 weeks I was T4 -16 so came down massively wondering with just a small reduction of PTU it wasn’t enough as it’s now 14 could be lower still now. Just a thought. Got a terrible headache too which is high BP I guess (btw I don’t suffer from high BP normally 115 over 85. Thanks for all your advise.
Unfortunately you can’t do that the NHS it will reject my bloods at the hospital because it was only a week ago I will have to wait for at least 5 weeks. It’s done at my GPS they all go through my local hospital.
It’s names has merged TSI & TRab. TRab measures blocking, neutral & stimulating antibodies whereas TSI measures stimulating only. So the test name is confusing but I believe it’s Trab not TSI. (both are biomarkers for Graves)
To confirm Graves either Thyroid-Stimulating Immunoglobulin (TSI) & or TSH receptor antibodies (TRab)- which measures stimulating, neural & blocking antibodies should have been tested.
TPOab (Thyroid Peroxidase antibodies) or TGab (Thyroglobulin antibodies) confirm autoimmune but not unique to Graves.
Your levels were very high. Doctors give higher doses to bring levels down quickly but that can leave you feeling symptoms - of the sudden fluctuation in levels - even if at the time of the test your results were within parameters.
When adjustment are made with levo it’s usually by small 25mcg adjustments (or half that every other day) but the same logic isn’t applied to antithyroid - often as levels are high - as that’s considered dangerous - it’s brought down urgently (often by a great margin and too much) “adjustment symptoms” are considered less important.
Ideally testing as consistent as possible is best - but it’s not relevant with anti thyroid when the medication is taken. It’s really suggested that those taking replacement do not take a dose before draw as will show a high FT4.
Did you start on PTU and not carbimazole (carbimazole is 1st option antithyroid) wondering why you have PTU over carbimazole.
How long have you been taking PTU? Doctors suggest further treatment after around 18 months. Has this ever been discussed with you.
Hi PurpleNails I’ve got a letter somewhere to say I have Graves so I guess I had the relevant tests. I’ve had that many blood tests I’ve lost count. I never take any meds before my blood draw. I can only go by what my consultant says who is very good and atm my very involved endocrine nurse who is so on the ball. I do have bloods every 6 weeks unless I call her and say I’m struggling but 4 weeks is the minimum time. I tried the carbimazole and made me sick and nauseous so have taken the PTU for a couple of years maybe a bit more. Yes it has to be controlled if I don’t medicate it will go up.
With the fact that I am still having symptoms of an overactive thyroid eg intense heat and sweating dry mouth (with a metallic taste) excessive drinking and peeing drinking water extreme tiredness, when the stats are within the mid range, I’m thinking outside the box. I haven’t been checked for diabetes, just a thought as it’s another endocrine defect. Making an appointment tomorrow for my GP. I have to do something feeling wretched for months even years on end is getting beyond what I can cope with. Thanks for your input most helpful.
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