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Lauren from London, Graves diseas eHELP!!!!!!
Hi. Finally my story. So hard to remember all details especially as I feel so upset right now So, here goes....... Diagnosed with Graves Disease 1999. I think I had episodes for many years before diagnosis. Classic symptoms bulging eyes, extremely hot, sweating, nervous, small goitre, no nodules, severe hair loss, fast pulse 160bpm resting. Dont have intial bloods, sorry. had ultrasound said Hot Thyroid. Put on 150mg of PTU. Felt worse. Bloods T4 21.00 (NZ Measurements, I know its different in USA,) T3 12.7, Didnt test for TSH!!!./ Oct 99 bloods T4 18.9, T3 7.2, TSH 0.03 feeling still very ill. Moved to London UK. Nov, Dec 1999 Jan and Feb 2000 feeling better. March 2000 T4 D/k, T3 3.28, TSH 0.1 feeling awful again mentally and physically.Put on Meds (dont know dosage). July 2000- T4?, T3 2.73, TSH ? Feeling okay emotionally but very very hot and breathless. Sept/Oct 2000 felt bad. Nov, Dec 2000 Jan and Feb 2001 felt good on 20mg of Carbinizole I think. March, April May 2001- started feeling horrible, fatigue, anxiety, nervous, mood swings, hairloss , fast pulse. Bloods T4 14.7, T3 1.97, TSH 1.30 . Endos reduced meds to 10mg as bloods were "normal". Mid 2001 felt better but still very very hot all the time. Sept 2001- felt terrible anxious, nervous , crazy Endos said cant be Thyroid, On 5mg carbinazole. Felt very depressed and disillusioned with Endos. Oct 2001 to feb 2002 - dont know how I was feeling but missed Endo appointments. Then blood tests showed Normal plus I felt good. Bloods T4 18.9, No T3 tested?, TSH 0.6. Stopped Medication. Felt normal and relaxed even though in distressing romantic relationship. Stayed okay till Sept 2002 although went through terrible depression and stress after devasting break up with man. Oct 2002 Blood Tests normal- didnt feel that great though. Jan 2003 bloods stilll normal T4?, T3?, TSH 0.1 but I felt I was relapsing as I was soooo hot again and so nervous and anxious. Endos said I was normal. I attributed emotions and pshychology to feeling lonely and lost. Feb 2003 - supposed to get bloods taken. Didnt as I felt like whats the point, didnt like the way they had treated me at hospital before. Mar, April, through to November 2003 started feeling normal again, more balanced, started feeling positive about future, made new friends, started Art course etc. On no medication - missed Endos Appointments deliberately ( I know that is sooo naughty). Nov 2003, started feeling terrible again Bloods T4 54.5, no T3 results, TSH 0.1, put on 20 mg Carbinazole.
Jan 2004 T4 24.6, T3 ?, TSH 0.1 still on 20mg- felt bad still. Then Feb, Mar, April, May 2004 Started thinking clearly, feeling happier, feeling "normal" emotionallly. Bloods were T4 9.4, T3?, Tsh 0.1.Normal. Must add in personal life was starting to make plans for artificial insemination to have a much longed for baby and plans to raise it alone. This alleviated alot of stress I had had after relationship break up as we had planned to have a baby and I had been looking forward and making plans for that for most of my life. April 2004 T4 normal. On 20 mg Carbinazole - felt ok. Went back home to NZ to investigate Sperm donor clinics there. Trip was a disaster. Suddenly realised I couldnt go through with it and was too terrified to raise a child on my own and be dependent on my elderly parents. Felt Shattered.. Felt very depressed, a failure. Oct 2004 Normal bloods- on 10mg carbinazole felt horrible. Went to counselling felt bit more positive. Nov 2004, dec 2004 felt ok. Jan 2005 to April 2005 crashed into deep depression and anxiety but with all the Thyroid symptoms as well, Hot, exhausted, hair loss, shaking, headaches, feeling very very ill and then to boot developed OCD. ( i must add though still managed to work through all of these episodes). Went to Endo praying it must be Graves again. No!!! Bloods are normal - T4 13.8, T3 ? Tsh 0.8. Felt suicidal..... didnt know where to turn, For first time Endo said it was all psychological. Bought Dr Arems amzing book The Thryroid Solution and found mary shamons website. Trawled the web for answers. Foudn Dr skinner in Birmingham. In desperation and crying all the way I travelled to see him. He did thorough check up and diagnosed that i had in fact gone HYPOTHYROID. I was shocked, He put me on 25 mg of Levothyroxine. Well, as well as that there were some positive changes in my personal life - had a summer fling which restored my self esteem but miraculously apart from that within about 1 month of taking thyroxine I felt relaxed, normal healthy and energetic and above all happy!!!!!!!!! Went on a wonderful holiday to Greece on my own and started feeling optomistic about my future without a baby or a man. It was such a relief. I was meant to go back to dr Skinner for check up but did not. It was as though I had found the magic answer and just wanted to pretend that I was well now and that was that. I was really content for 1st time in my life. This remained like this for two years!!!!!!!!!! Although, admiitedly in summer 2006 I started getting very very hot( it was a heatwave here in London) but i was seriously overheating and I was very energetic and my left eye satred bulging and my right eye started closing a bit. But I really wasnt bothered, i was sleeping well , and above all felt calm, happy and normal. The disaster, at a routine Asthma check up on 22/3/2007 my GP was concerned about my eye and insisted on a blood test. I was so worried about what this would mean. Bloods were T4 35.2,( range 10.50 - 24.5) T3?, TSH 0.02 ( raange 0.3 tp 4.0), He said frankly youre very thyrotoxic, i was crying when I told him Id never felt healthier. Tested again 13/4/07 T4 37.1, t3 4.10 and TSH 0.02 still feeling good but he took me off the Thyrroxine as he said he couldnt prescribe them if my bloods were showing HYPERTHYROID. until I went to see Dr Skinner again. Then a decline started gradually started feeling weird again, nervous, uneasy, panicky, very peculiar. Still managed to go on a planned holiday to Las Vegas which went well. But when i came back rapidly went into a weird anxius depressionand had awful jetlag and flu. Staryed feeling very bad indeed. Felt like Id had some brain damage. Felt very depressed and anxious. Ocd kicked in again was heading for breakdown. Bloods T4 24.5, T3 3.10 , TSH still 0.02. Desperately tried to get appointment with Dr Skinner to get back on Thyroxine but he was going to GMC trial for malpractice ( he has since been totally cleared and is now back in full practice). So I couldnt see him for ages. Finally got to see him Mid July 2007 T4 24.5 , T3 3.10 and TSH 0.02. He felt clinically I was still Hypothyroid despite low TSH and prescribed 50 mg of Thyroxine. Made no difference, I was bereft and destroyed, What now!!!!!! Went to see a Dr Peatfield in England who was very good and thought it was adrenal fatigue causing HYPO symptoms. Did saliva tests for Cortisol and DHEA. Cortisol was normal but HDEA was not. So he prescribed Adrenal support formula. Didnt feel any different. By this time I was seriously suffering a breakdown. Felt like I was going mental and had to hold down my job as well as I couldnt bear being by myself and all my thoughts for one minutes. Started self medicaiting with alcohol. Felt like I had fear in my very soul. The I got a new Gp who was very supporitve and put me on Antidepressants, Propanaolol and Diazepam to settle my symptoms down All this time I was trying to organise attending family Xmas reunion in NZ . Felt like I was losing my mind ( still do). Holiday was a success and managed to relax a bit and felt more secure being near my parents and sister who were very kind and caring. I was then back on 25 mg of Thyroxine. Saw a therapist in NZ who thinks I have severe anxiety disorder and I started working through his Anxiety relief programme. Running out of room will post more info in a minute
Love Lauren
Jan 2004 T4 24.6, T3 ?, TSH 0.1 still on 20mg- felt bad still. Then Feb, Mar, April, May 2004 Started thinking clearly, feeling happier, feeling "normal" emotionallly. Bloods were T4 9.4, T3?, Tsh 0.1.Normal. Must add in personal life was starting to make plans for artificial insemination to have a much longed for baby and plans to raise it alone. This alleviated alot of stress I had had after relationship break up as we had planned to have a baby and I had been looking forward and making plans for that for most of my life. April 2004 T4 normal. On 20 mg Carbinazole - felt ok. Went back home to NZ to investigate Sperm donor clinics there. Trip was a disaster. Suddenly realised I couldnt go through with it and was too terrified to raise a child on my own and be dependent on my elderly parents. Felt Shattered.. Felt very depressed, a failure. Oct 2004 Normal bloods- on 10mg carbinazole felt horrible. Went to counselling felt bit more positive. Nov 2004, dec 2004 felt ok. Jan 2005 to April 2005 crashed into deep depression and anxiety but with all the Thyroid symptoms as well, Hot, exhausted, hair loss, shaking, headaches, feeling very very ill and then to boot developed OCD. ( i must add though still managed to work through all of these episodes). Went to Endo praying it must be Graves again. No!!! Bloods are normal - T4 13.8, T3 ? Tsh 0.8. Felt suicidal..... didnt know where to turn, For first time Endo said it was all psychological. Bought Dr Arems amzing book The Thryroid Solution and found mary shamons website. Trawled the web for answers. Foudn Dr skinner in Birmingham. In desperation and crying all the way I travelled to see him. He did thorough check up and diagnosed that i had in fact gone HYPOTHYROID. I was shocked, He put me on 25 mg of Levothyroxine. Well, as well as that there were some positive changes in my personal life - had a summer fling which restored my self esteem but miraculously apart from that within about 1 month of taking thyroxine I felt relaxed, normal healthy and energetic and above all happy!!!!!!!!! Went on a wonderful holiday to Greece on my own and started feeling optomistic about my future without a baby or a man. It was such a relief. I was meant to go back to dr Skinner for check up but did not. It was as though I had found the magic answer and just wanted to pretend that I was well now and that was that. I was really content for 1st time in my life. This remained like this for two years!!!!!!!!!! Although, admiitedly in summer 2006 I started getting very very hot( it was a heatwave here in London) but i was seriously overheating and I was very energetic and my left eye satred bulging and my right eye started closing a bit. But I really wasnt bothered, i was sleeping well , and above all felt calm, happy and normal. The disaster, at a routine Asthma check up on 22/3/2007 my GP was concerned about my eye and insisted on a blood test. I was so worried about what this would mean. Bloods were T4 35.2,( range 10.50 - 24.5) T3?, TSH 0.02 ( raange 0.3 tp 4.0), He said frankly youre very thyrotoxic, i was crying when I told him Id never felt healthier. Tested again 13/4/07 T4 37.1, t3 4.10 and TSH 0.02 still feeling good but he took me off the Thyrroxine as he said he couldnt prescribe them if my bloods were showing HYPERTHYROID. until I went to see Dr Skinner again. Then a decline started gradually started feeling weird again, nervous, uneasy, panicky, very peculiar. Still managed to go on a planned holiday to Las Vegas which went well. But when i came back rapidly went into a weird anxius depressionand had awful jetlag and flu. Staryed feeling very bad indeed. Felt like Id had some brain damage. Felt very depressed and anxious. Ocd kicked in again was heading for breakdown. Bloods T4 24.5, T3 3.10 , TSH still 0.02. Desperately tried to get appointment with Dr Skinner to get back on Thyroxine but he was going to GMC trial for malpractice ( he has since been totally cleared and is now back in full practice). So I couldnt see him for ages. Finally got to see him Mid July 2007 T4 24.5 , T3 3.10 and TSH 0.02. He felt clinically I was still Hypothyroid despite low TSH and prescribed 50 mg of Thyroxine. Made no difference, I was bereft and destroyed, What now!!!!!! Went to see a Dr Peatfield in England who was very good and thought it was adrenal fatigue causing HYPO symptoms. Did saliva tests for Cortisol and DHEA. Cortisol was normal but HDEA was not. So he prescribed Adrenal support formula. Didnt feel any different. By this time I was seriously suffering a breakdown. Felt like I was going mental and had to hold down my job as well as I couldnt bear being by myself and all my thoughts for one minutes. Started self medicaiting with alcohol. Felt like I had fear in my very soul. The I got a new Gp who was very supporitve and put me on Antidepressants, Propanaolol and Diazepam to settle my symptoms down All this time I was trying to organise attending family Xmas reunion in NZ . Felt like I was losing my mind ( still do). Holiday was a success and managed to relax a bit and felt more secure being near my parents and sister who were very kind and caring. I was then back on 25 mg of Thyroxine. Saw a therapist in NZ who thinks I have severe anxiety disorder and I started working through his Anxiety relief programme. Running out of room will post more info in a minute
Love Lauren
Dr. Skinner sounds like a quack who should be in jail. Giving someone who is hyperthyroid medication for hypothyroidism is criminal, not cutting edge thinking.
I don't suppose that's why the medical board considered taking away his license to practice?
SSRI meds (anti-depressants) are not a good thing for thyroid patients to take. They affect your hormone levels. Stopping anti-depressants should be done slowly, or you can suffer a worsening of symptoms.
Anti-anxiety medication would be helpful. It won't treat depression, but it would make you less nervous and might clear up this fear of being alone.
I feel sorry for you with all you've gone through. You should have gotten a clear diagnosis years ago. You really haven't been very helpful as far as managing your treatment. Ignoring it for a year here and there didn't help you at all.
I can't make any sense of your T4 tests without lab ranges to go by, so I assume they reflect what your TSH has been measured at along the way.
Have you had any imaging done of your thyroid? An ultrasound and an uptake scan?
My TSH has bounced up and down in the past. I know you can feel one way and test another. there is a lag time between hormone levels changing and symptoms appearing. There is also a lag time with symptoms going away after hormone levels are brought back in line.
I don't think you are mentally ill, but I think you are suffering depression and anxiety because of your thyroid problem. I think you are physically stressed and more ill than you realize. Hyperthyroidism can be dibilitating, and working yourself to the bone for the next six months is a very bad idea.
You need to be careful or you will end up sitting at home for a year or more recovering.
I don't suppose that's why the medical board considered taking away his license to practice?
SSRI meds (anti-depressants) are not a good thing for thyroid patients to take. They affect your hormone levels. Stopping anti-depressants should be done slowly, or you can suffer a worsening of symptoms.
Anti-anxiety medication would be helpful. It won't treat depression, but it would make you less nervous and might clear up this fear of being alone.
I feel sorry for you with all you've gone through. You should have gotten a clear diagnosis years ago. You really haven't been very helpful as far as managing your treatment. Ignoring it for a year here and there didn't help you at all.
I can't make any sense of your T4 tests without lab ranges to go by, so I assume they reflect what your TSH has been measured at along the way.
Have you had any imaging done of your thyroid? An ultrasound and an uptake scan?
My TSH has bounced up and down in the past. I know you can feel one way and test another. there is a lag time between hormone levels changing and symptoms appearing. There is also a lag time with symptoms going away after hormone levels are brought back in line.
I don't think you are mentally ill, but I think you are suffering depression and anxiety because of your thyroid problem. I think you are physically stressed and more ill than you realize. Hyperthyroidism can be dibilitating, and working yourself to the bone for the next six months is a very bad idea.
You need to be careful or you will end up sitting at home for a year or more recovering.
So once I got back to London decided to go back to New Zealand to Recuperate and be looked after a bit adn that has kept me going for last three months exept that I reallly need go now but its no that easy as the fare is so expensive, dont know if I can manage working while Im back and will need to pay up my rent on my flat here in London so I dont lose it. Which means Im working so hard and will have to for another six months. My GP is now going to refer me to another ENDO who he really recommends but once again I have to wait for appointment. I ran out of the Thyroxine so I am on no meds at moment been for 6 weeks, Also stopped the antidepresants as they had horrible side effects. Now wondering if thatw as the wrong thing to do. I am so nervous all the time, not hot though but now my hair is thinner than ever before and has even blocked the shower!!!. Im so worried that I am seriously mentally ill but GP dosnt think I am at all although he does want me to see a pshcychologist for emotional distress Im under and underlying issues regarding anxiety and low self esteem. Im working all the time as ive now developed a fear of being alone ( this is the woman who travels alone all the time, when well). Has my bloods taken last week and here are the results T4 16.3, T3 1.80 and TSH 0.02 (again). I just dont get it, By the way I have antibodies as well. i think they are about 225. So I know I have an Autiummune disease but its never been confirmed whether its Graves or hashimotos. Im am soooo scared and isolated at moment. I have lovely friends and family but they too are at wits end as they dont know how to help.
SO there it all is my sad tale. I must say though I do realsie after reading these posts that there are those of you out there who are far worse off that me and my heart and love goes out to you all. Its just that i feel so wretch emotionallyl
So any light that anyone can shed on what you think is happening to me would be soooo appreciated as I feel so confused. Why did I feel so good when my bloods were so bad and vice versa???
Am i really just a basket case.
Oh by the way they never did RAI or because at that point I was still planning to ahve children, plus I was scared of the idea.
So if anyone out there can help with any advice and support that would be wonderful. Its the only thing really keeeping me going that I will feel better one day as i cant go on like this much longer.
Very best wishes to all the community
Love Lauren
SO there it all is my sad tale. I must say though I do realsie after reading these posts that there are those of you out there who are far worse off that me and my heart and love goes out to you all. Its just that i feel so wretch emotionallyl
So any light that anyone can shed on what you think is happening to me would be soooo appreciated as I feel so confused. Why did I feel so good when my bloods were so bad and vice versa???
Am i really just a basket case.
Oh by the way they never did RAI or because at that point I was still planning to ahve children, plus I was scared of the idea.
So if anyone out there can help with any advice and support that would be wonderful. Its the only thing really keeeping me going that I will feel better one day as i cant go on like this much longer.
Very best wishes to all the community
Love Lauren
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