Anyone have/ had Graves' disease thyrotoxicosis long time ? More than 6-7-8- years ,how you feel now ? Any side effects antithyroid medication ? Propylthiouracil ( PTU) could you please tell me personal experience with Graves' disease thank you .low mood ? Low libido ? Stress ? Low testosterone ?
Anyone here with Graves' disease ? : Anyone have... - Thyroid UK
Anyone here with Graves' disease ?
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Hi Bora, was diagnosed with Graves 20 yrs ago, but I think had symptoms for about 5yrs before that which I put down to menopause, I was 43 when diagnosed and I had such bad tremors I could not even write my name looking back I was hell to live with, kids said it was like living with crazy lady. I was on ,and off carbimazole for 12yrs and did reasonably well no bad side effects, managed to work and run house and look after kids, though did get stressed easily.it wasn't until i had Rai that things changed for the worst I became hypo and am unable to work now, can't stand the stress and haven't got the same energy and your having to fight for right level of medication as gp's don't understand that you need to have suppressed Tsh. So all in all would prefer to be back on carbimazole if I had a choice.
in reply to Raventhorpe
I was on PTU high dose almost 8 years (300 mg ) everyday crazy ! Thanks ....
Raventhorpe in reply to
Have you been on that dose for all of the 8yrs cause wow that's a high dose
in reply to Raventhorpe
Yes it's crazy ....
in reply to Raventhorpe
I was taken high dose but it was strange because my thyroid levels still going up T3 >>7.66>>8.63>>>9.30>>11.66 I didn't know anything about it .February 2016 suddenly numbness start both my hands then my hand start shaking .then GP reduced my tablets 150 mg then my thyroid level was going down l didn't know anything because thyroid specialist and GP didn't warn me
in reply to Raventhorpe
2008 ,2009,2010 2011 ,2012,2013,2014 my thyroid level wasn't very high why they gave me high dose antithyroid medication l don't understand ? NHS ? No idea .....make me crazy ....
in reply to Raventhorpe
Ok thanks ...
My testosterone level is low l don't feel anything but my doctor said : your testosterone level ok how ? Something wrong NHS blood test results
2009 : testosterone level : 27.9nmol/L ( 9.3-34.5)
2014 testosterone level : 23.7 nmol/L ( 9.3-34.5)
2016 testosterone level : 16.8 nmol/L ( 9.3-34.5 ) NHS
2017 testosterone level : 15.9'nmol/L ( 9.3-34.5) this is not normal ..October 2014 was 23.7 >>>>>>2016 August 16.8 ( 22 months)
Serum LH level above range :12.6mlU/L (1.7-8.6)
Hormones
Serum prolactin level :231mlU/L (86.0-324.0)NHS
Serum growth hormone level :0.2 ug/L
Hi Bora I was diagnosed with Thyrotoxicosis due to Graves in 2008 and have taken different doses of Carbimazole since then. I stopped the medication for a few months but had a relapse so my endocrinologist prescribed Carbimazole again. I now take 5mg every other day. On my last three appointments, he has tried to persuade me to have RAI and arguing that if I lived in the States I would have to. I actually saw him last week and his advice was the same, however I feel it isn't the right option for me and have declined. My levels are all stable - TSH 2.08, Free T3 4.3 and Free T4 15. He has discharged me from his care, (now with my doctor) but did say I could consult with him again if there were any changes. My symptoms are all manageable, hand tremors, anxiety, extremely cold, maddening itchy scalp, lack of tolerance which can be destructive in relationships, and those low days when I feel quite tearful. On the other hand, there are days when I have so much energy I can't sit still and everything is done at top speed! I'm sixty now and have decided RAI would be too much of a drastic change for my body to contend with. All the best to you, I recognise it affects us all in different ways but it can be helpful to read other sufferers experiences.
in reply to Tanguera11
Thank you very much l was going to ask you one question l was taking propylthiouracil high dose (300)mg everyday almost 8 years .can propylthiouracil make free T3 and T4 for hormones up ? I'm sure I'm overmedicated my thyroid specialist 8 years never reduce my antithyroid medication suddenly 2016 February my hand start shaking do you think any connection ? Too much propylthiouracil any side effects ? Low testosterone ? Or low mood ?
in reply to Tanguera11
You are ok my free T3 it was 9.30 pmol and İ didnt know my TSH almost 8 years was 0.01 your levels not high !
Tanguera11 in reply to
Yes the Carbimazole has stabilised my levels nicely, so am content to stick with the dosage. I'm told it's not advisable to take it for more than eighteen months, however no one really knows the outcome of long term usage. I've never been prescribed propylthiouracil, so don't know what the side effects are. I still have hand tremors but it's not that noticeable. Hope you feel better soon.
in reply to Tanguera11
Thank you ...
in reply to Tanguera11
My blood tests results since 2008 everything was fine except my thyroid levels ( most important ) first my thyroid specialist was fantastic ! checking my blood tests result between 2008 -2011 and look after me really well Stabilised my levels ! My thyroid levels was ok Then suddenly new thyroid specialist said : take 300 mg propylthiouracil everyday ( 2012) I said to him why high dose ? He said your thyroid levels going up ! Untill March 2016 I was taking 300'mg everyday l made mistake I didn't see any blood tests results .between July 2015 and March 2016 my thyroid levels was going up very quickly T3 July 2015 7.66 >>September 8.63 >>13 january 2016 >>>9.30 and March 2016 11.66 very high ! I think l took too much propylthiuracil it was thyroid specialist fault ! He didn't checked my blood test results ( NHS ) my GP warn me saw my thyroid level he said : your thyroid levels very high and dangerous (11.66)!!!!!!!!! I said to him my hand start shaking after January 2016 he said reduce your tablets 150 mg a day then I was ok but l still have hand tremors ....I'm worry about hand tremors ....
in reply to Tanguera11
My thyroid levels was very high but l was on holiday l didn't feel anything no side effects after holiday back to the uk l went to emergency A&E department ......
Was diagnosed with thyrotoxicosis in 1981 and 1982 but no appropriate treatment was given.
After several weeks the thyoid was said to have settled down but in 1983, felt exhausted but was told that the x rays showed nothing abnormal. Tests done nowadays are not as thorough
due to cuts, so that the hormones may not be accurately detailed, nor autoimmune responses
affecting thyroid hormones. Can say that mental health sufferers may have an undiagnosed
thyroid with insomnia which can lead to confusional states. if your thyroid is post natal
then it may be erratic with all the hormones but it may later emerge with a detectable goitre
and staring eyes - or it may not show at all. Having read clinical research conducted in England through the British Thyroid Association, a definite link with iodine deficiency
could cause a goitre, or thyroid deficiency. It can even lead to slow development in the
unborn child with resulting intelletual impairment. Now nearly 70yrs old, I am adding sea salt
to my diet for cooking of soups and vegetables, as it contains iodine. It will be absorbed in the
food cooked. Also having milk, and yoghurt low fat or normal, can boost iodine levels
as well as kale sea food and shell fish. Iodine synthesises the t3 hormone - but of course
you may have to take mediation for your condition. Hope you feel well soon - if you have sleep disorder, sleeping pills may not seem a natural remedy but can be very helpful.
in reply to
Ok thank you
in reply to
Yes mentally no one help me thanks .I'm 45 years old now low libido low mood feel awful ....im sure l was overmedicated ....They never show me blood test results or warn me !!
Allyson1 in reply to
I don't think sea salt contains enough iodine, though. Table salt has more. Kale isn't a strong source of iodine, kelp is.
in reply to Allyson1
Don't think the amounts of iodine are shown in British sea salt but it is said
to contain iodine. Kelp is a good source of iodine but from looking at nutrition sites it can be found in most fish products eggs, milk, some vegetables - American moretons salt has iodine as an iodide as research showed in the 1920's that many people have iodine deficiency. Saxa salt has a coarse and a fine sea salt - so as it is a natural source I have started to use it. We are still behind America in endocrine research by about seventy years!
Allyson1 in reply to
I think sea salt contains trace amounts, but not necessarily enough. Iodized salt has more. My doctor has me on an iodine supplement and selenium foods, which has worked best for me, but supplementation really needs supervision to be done safely.
in reply to Allyson1
That's great - have not seen this approach on this site before!
Serum free T3 level 2009 : 9.04 pmol /L ( 3.6-6.5 )
Serum free T4 level 2009 : 20.2 ( 9-19)
Serum TSH result 2009 0.01 ( 0.35-4.94)
................
2008 free T4 11.6
2008 free T3 5.77 (carbimazole daily 20 mg )
............
2010 TSH 0.05 ( 0.35-4.94)
FreeT4 :12.9( normal range 3.6-6.5)
Free T3 5.75( 3.6-6.5 ) 5 October 2010'suddenly start propylthiouracil 100 mg twice daily .....
......................
2011..........
T3 10.04
T4 17.0
TSH 0.01 (PTU) 300 mg
.............
2012
Free T3 : 5.64 ( 3.6-6.5)
Free T4 13.2 ( 9.0-19.1)
TSH : 0.01.( 0.35-4.94) outside reference range 6 January 2012 ..
..............
Serum free T4 level (2013) : 13.0(9-19.1)
TSH 0.01 ....
2014 July .....
Serum free T4 level : 9.8pmol /L ( 9.0-19.1)
TSH 0.20 ( 0.35-4.94) .........
..................
9 October 2014 feel ok no side effects ...TSH 1.3 mul/L ( 0.35-4.94)
...............
1 July 2015
....T3 7.66( 3.6-6.5)
T4 14.4 ( 9.0-19.1)
TSH : 0.01 ( 0.35-4.94)
................2 September 2015
T3 8.63
T4 16.2
TSH 0.01 ^^^^^^ T3 going up no warning from GP or thyroid specialist .
..............
T3 9.30 ( 3.1-6.8) above range 13 January 2016
T4 14.2 (12-22.0)
TSH 0.01 (0.27-4.2) below range 300 mg PTU antithyroid medication .
.........................
17 March 2016
......T3 11.86 ( 3.1-6.8) very high free T3 no warning from GP or thyroid specialist my hand start shaking ......must be connection high free T3 ........
My new GP reduced my antithyroid medication 150 mg a day PTU .....thank you very much to him 👌😄😄 ...........22 August blood test result : T3 5.67 T4 10.0 TSH : still below range 0.01 ........
14 December 2016
T3 : 4.99 ( 3.1-6.8)
T4 13.6( 11.0-23.0)
TSH : 0.30'( 0.27-4.5) thanks to new GP 😀😄 but my hand was still shaking it was like a stroke 😢😢😢😢😢☹️😢😢😢😢😰😰😰 must be connection high free T3 .....
Everything was OK untill 2015 summer no side effects .......everything happened so quickly .....😰😰😰😰😰😰😰😰😢😢😢
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