Brain too fried to think of a heading...

[Guest guest]

Hi Sheila and everyoneSo sorry this is so long and detailed but I didn't know howelse to put it.I've been seeing the same doctor for the last eight years ona monthly basis to pick up my prescription and for one on one counselling sessions.Apparently I don't fit the remit of psychologist or psychiatrists as theydiscovered that I'm not a mental case! I've been ill for along time but more noticeably so since 2006 but kept putting it down to unrelentingstress and life events. I startedgaining weight and couldn't lose it and so in 2007, my doctor suggested I go tothe gym (I've never had to as I have always been a naturally active size 8/10). The more I exercised the more tired I became and eventually had to giveit up as I'd waste days in bed recuperating. November 2007, I had to go to South Africa to sort outmy mother's affairs. She had passed awayand left everything in a terrible state. I noticed that my ankles, feet, hands and fingers were swollen on theplane and this did not go away. I endedup going to a doctor for water retention tablets but they didn't work. I couldn't fit into any of my shoes and sohad to carry out all my business in flip flops. It was a traumatic journey and I noticed that I became easilydisorientated and had to be extra cautious when driving as my vision wouldblur. I was an emotional, physical andmental wreck but had so much to do to set things in motion regarding my mother'sestate, delegating lawyers, dealing with the Master of the High Court, etc. Ihad to keep going. I returned in February2008. By March 2008, I knew something was seriously wrong withme. I became totally bedridden. My arms and legs became dead weights and Iwould break out into cold sweats, drenching my pyjamas, pillows and bed linen. My weight continued to escalate. I told my doctor my symptoms but he said it was a virus andthat many people had it and that it would pass. It didn't pass and I started suffering weakness in my legs – my legswould repeatedly buckle and give way without warning with me ending up on theground. Salt cravings were so bad at thetime and my brain was slowing down rapidly.Then the problems with my mouth started, i.e. dryness, peeling, burning, ulcers and blisters on gums and tongue. I told my doctor my mouth was sore and thatit hurt to eat and for months he ignored my complaints, including the extremefatigue (which he initially put down to a virus that he said would go away!), shoot/stabbing/throbbingjoint and muscle pains and the new symptoms with my mouth.On 29 September 2009, I received an unexpected call from thepractice to say that my blood tests had come back and my thyroid was slightlylow and did I want to speak with my doctor? This was the first I'd ever heard of a thyroid and was confused andworried because I was so ill. He calledlater that morning and flippantly asked what was up? I told him my thyroid was low – what did thatmean? Oh, nothing to worry about, he laughed,and terminated the conversation. That was when I started doing research on the web and foundTPA-UK, Stop The Thyroid Madness, Thyroid UK and other sites which I havelearnt much from. I also bought DrKharrazian's book on "Why do I have Thyroid symptoms when my blood tests arenormal?"The following morning, Wednesday, 30 September 2009, I madean emergency appointment because my mouth was in so much pain. I saw a different(female) doctor. I told her all mysymptoms and said I was positive it was my thyroid but did not know what waswrong with my mouth. She said my thyroidwas normal and that none of my symptoms were thyroid related, in particular, thefatigue and weight gain!!!!! Shegave me the results which were TSH 6.52(.35-5.5) and FT4 15.5 (9.4-22.7). She weighed me and prescribed Bonjellateething gel for babies to rub on my gums and said she would leave notes for mydoctor and contact me if she could think of anything else. She was out of her depth!On Friday, I made another emergency appointment with mydentist as my mouth was burning up. Iarrived drenched even though it was a cold day and my hair was matted withperspiration. She immediately said thatI should see my doctor because I looked so ill and I explained that he knew andjust ignored my repeated pleas to find out what was wrong with me. She gave me a form for the Myofacial Clinicat Queen Hospital in Sidcup and I went there immediately. A & E would not allow me to enter withoutgoing through them first and the doctor I saw was very unsympathetic, said itwasn't my thyroid and that there was nothing wrong with my mouth. He sent me on my way in tears with aprescription for Difflum mouthwash. On Monday, 5 October, having just had something to eataround 4.30pm, the right side of my face started to swell up and the pain wasunbearable. I went to the practice foranother emergency appointment and this time my doctor was on duty and called mein. He thought it might be a stone in myduct and gave me two different types of antibiotics (the first didn't work) andreferred me to ENT. ENT said my symptomswere autoimmune related, possibly Sjogren's Syndrome. My doctor referred me to aRheumatologist. It is now Monday, 14 December. The Rheumatologist looks at my list ofsymptoms and says that no one could possibly be that ill. I was crying and pleading with him to helpme. I asked him for a mouth biopsy toascertain what might be causing my burning, inflamed, dry mouth but he refusedto do such `invasive' surgery for an autoimmune disease which wasincurable. His words were, "why would anyonewant to know that they had Sjogren's Syndrome?" I said, to rule it out as I desperately need to know what was wrong withme. He said, well if you want to knowwhat's wrong with you, it's your thyroid. Get your thyroid treated and your symptoms will go! And will my mouth also clear up, I asked? This is when he said he'd had enough and leftthe room slamming the door behind him.A week later, Monday, 21 December 2009, my doctor prescribed me25mcg Levothyroxine. Seven weeks lateron 8 February, I was still near suicidal – the LevoT was doing nothing so Icalled my doctor in a terrible state (I was in such despair) and told him itwas like taking a sugar pill and could he please up my dosage as I cannot continue this way... so he upped my dosage to 50mcg and said he wouldrefer me to an Endocrinologist. So, previous blood test was: No LevoTTSH 6.52 (.35-5.5) FT4 15.5 (9.4-22.7) 12 February2010 (7 weeks trial on 25mcg LevoT)TSH 5.1 (.35-5.5) FT4 15.9 (9.4-22.7) 15 March2010 (5 weeks on 50mcg LevoT)TSH 6.4 (.35-5.5) FT4 13.8 (9.4-22.7) 12 April2010 (4 weeks on 50mcg LevoT)TSH 3.68 (.35-5.5) FT4 18.2 (9.4-22.7)FT3 3.5 (3.5-6.5) 6 May 2010 (3weeks and 3 days on 50mcg LevoT – Lab test from first meeting with Endocrinologist)TSH 5.25 (.35-5.5) FT4 14.8 (9.4-22.7) 2 July 2010(8 weeks on 75mcg LevoT)TSH 2.99 (.35-5.5) FT4 16.8 (9.4-22.7)FT3 2.9 (3.5-6.5)Since 10 July I am trialling 125mcg LevoTbecause the Endo acknowledges I have a conversion problem. What concerns meis that I STILL have ALL the thyroid symptoms below and more and I am threeweeks into this higher dosage. Thismeans I have to wait another three weeks to have a blood test before he decideswhether to add T3 or not. Surely I wouldhave started feeling better by now? Instead,I remain bedridden and deteriorating fast… THYROID SYMPTOMS· Bedridden – too weak and fatiqued to clean, bath or eat;· Weight gain - (I HAVE GONE FROM A SIZE 8 TO A SIZE16 in FOUR YEARS!!)· Hoarseness /changed voice and at times total loss of voice;· Emotionally unstable – shake, tremble, lose my voice and cryuncontrollably when upset;· So cold I can't get to sleep at times (even witha 13 tog duvet in midsummer);· Stabbing, shooting, throbbing joint and musclepain all over / Crippling back pain; (WOULD THIS BE A CAUSE OF REVERSE T3 ANDIS IT WORTH GETTING TESTED FOR?)· Numbness, pins and needles in hands, arms andlegs when lying down;· Wanting to go back to sleep after consuminganything, even a cup of tea;· Ringing / aching ears;· Shortness of breath;· Ridged, brittle nails / dry, coarse hair andskin / thickening of skin around my chin;· Brain barely functional, short attention span,lack of concentration;· Intolerant / impatient / loss of temper;· Reclusive/ sun sensitive (I love suntanning but no longer can);· Fearful / anxious / irrational reactions / unable to cope with the simplest thing;· Lack of energy / enthusiasm; and much more(brain is seizing up at this point but must finish)I DON'T KNOW MYSELF ANYMORE!!I would just like to add that I had various tests done bythe Endo in May 2010 which I received in a letter but do not have the ranges:Details: 46 y/o,77kg (used to be 52kg), height 1.65m, BMI 28, BP 112/79, pulse 83· 3 x 24 hour urine collections for cortisol werenormal (he didn't give the results)· HbA1C 5.1%· Adjusted calcium 2.30 (WHAT DOES 'ADJUSTED' MEAN?)· Vitamin D normal at 36.6mcg/L on 6 May 2010· Ferritin 116· B12 282· Folate 5.4· Adjusted magnesium 0.85· Creatine 94· Liver function test normal apart from a slightlyelevated gamma GT of 34 (?)· TPO antibodies normal· FSH 1.7· TSH 5.25 being at the upper limit of normal(some people do better with a TSH closer to 1)· 9am Short Synacthen test came back normal (wastold by another doctor in practice)· 8.30am cortisol blood test came back normal (wastold by above doctor)Medication I'm on each day:· 200mcg Pulmicort (for Erosive Oral LichenPlanus), Betnesol (mouthwash), 2x5mg epam, 2x75 Diclofenac Sodium (right wristoperated on four time and due another op), 4x150mg Moclobemide, 2x Adcal-D3Chewable tablets, 1x Fexofenadine Hydochloride (hayfever), 2x Omeprazole, 125mcgLevothyroxine, Vitamin B compound Forte, multivitamins, and more but these are what I'm on now. On 18 June 2010, I had a mouth biopsy at Guy's Hospital intheir Sjogren's Syndrome Specialist Clinic and was diagnosed with Erosive OralLichen Planus, an incurable autoimmune disease, which explains the problemswith my mouth. It has spread to otherparts of my body and I will have to wait till September for furtherexaminations and biopsies. Is itpossible that this may be the cause of my failure to convert because of a badcase of Candida? The Candida is partly causedby the oral steroids but is also one of the many symptoms of EOLP.I have now seen two other doctors in the practice and theyare out of their depth. The last oneadmitted that he didn't understand the terminology I was using and that he wasa General Practitioner and not a specialist and to go back to my first doctor. Problem is, our relationship is so strained I doubt it will work. The second doctor I saw was the senior doctor in the practice and seems not to know what to do with me - I have a long medical history and it's daunting for anyone new! I don't want to leave my practice as I don't know anyone who could recommend a clued up doctor in my area. SHOULD I HAVE A WORD WITH THE PRACTICE MANAGER?I am truly desperate for time as I have to have my home rewired and my loan expires at the end of November 2010. I had to postpone last year as was too ill and so they extended it but I am still bedridden and I was told that I will not get another one! I can't believe this is happening! I live on my own and have no one left for support! I am posting this now as it is much to read and I'mexhausted. I will wait for youropinions. Many thanks to those who manage to plough through this! LoveJacquie x