I got a letter from the Endocrinologist last month asking me to come in to see him in person. I got the impression that he had had a call from 'Monitor my health' - as he knew the name of the lab as he was checking his PC, also because I had been dismissed, & suddenly I got a letter out of the blue.
He agreed with me that the T3 in the metavive & the Tiromel was suppressing the TSH & pointed out that the T4 would also be lower from the action of the T3.
He suggested that I dose by symptoms & by temperature using Metavive - as I am unable to obtain any more Tiromel. He told me that he would instruct his secretary to send me the results that (I never got) from previous phlebotomy's.
So I had the blood draw last Tuesday, he just phoned & I asked if he got the results & if the calcium was in range yet, he said it is. I asked if the TFT's were in range, he said they are. I asked if they were optimal, (because the private tests were up & up - in spite of decreasing T3 by 100% )- he said top of range. It was like pulling teeth!
I asked if I had ever had anti-nuclear tests in the past. He said that I had (in 2019) through the previous GP. I pointed out that when I had asked for that test in October 2019 I did not get it, silence, ( in fact she never even requested it).
I let him know that I feel quite ill, & seem to have developed arthritis as well as hypothermia, but he was not interested at all, more silence. I wanted to tell him that I had a bad reaction to a iodinated contrast die when I was 18 or 19, & that was when I developed symptoms of thyrotoxicosis - but I thought what's the point?
My concern is that the Graves disease has returned. I'm 63, & I have not had the graves test done. I'm wondering if I should join the graves forum?
I have so many symptoms of something, but I don't know what. Coughing, sneezing, I can't breathe through my nose. My legs don't work, my knuckles & hands are swollen, I feel exhausted & ill, & when I eat, or do any work, I feel worse, but I don't know why.
One theory that I have is that I had/have the stimulating/blocking antibody. The only way to get clues is to try again to get my medical records, then if my history of hypothyroidism is based on high then low TSH - maybe I could see a pattern. I will now reduce the Tiromel to 6mg & continue with the 160MG of Metavive, & get my will written! I wouldn't be surprised if the T3 continues to rise though, but I will at any rate have to go by symptoms, as there will be no more blood tests. What I don't understand is - if I am hyper, with in range calcium then why am I so cold & slow?
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You might have to do what I have and request your records from the hospital records department. If you do have stimulating/blocking antibodies good luck as I am getting no help at all with it. I would email the records department and ask what you need to do to retrieve your records. Good luck and I hope you get some answers. X
I was trying to find printouts of blood tests prior to the phone call, but instead found 15 requests starting from 22/1/2019 , 15, just a small sample of SAR's over a period of 7 months! But I will not be deterred. I will try again.
I hope you have better success than I have had. Good luck to you too!
Thankyou for reminding me Scrumbler. I will try again to SAR. The Endo seemed panicky when I told him (the other week) that I will apply for my medical records!
When were you first diagnosed with Graves Disease and what treatment were you given ?
I'm 73 and was diagnosed in 2003 and treated with RAI thyroid ablation in 2005 and became hypothyroid immediately and prescribed 100 T4 - Levothyroxine.
I now manage lingering Graves, thyroid eye disease caused by the RAI - amongst other things - and hypothyroid.
I became very unwell about 8 years later when I think my thyroid had finally totally burnt out and disabled but found no help nor understanding within the NHS of the symptoms I was living and dealing with.
I trialled T3 myself with the T4 and I felt an immediate relief of the brain fog :
I also trialled Natural Desiccated Thyroid and am now into my third year with this full spectrum thyroid hormone replacement and am much improved.
You don't need to write on the Graves forum - as most of us are on this forum as well, so if you write again, just head it up mentioning Graves in the title and you will attract those of us dealing with this poorly understood and badly treated auto immune disease.
Hi pennyannie, thanks for asking. I was diagnosed by a first aider where I worked while living in the UK, after having blackouts with very high heart rate. I had started the symptoms in Jersey, & was no longer able to work here, as I was too weak, also very exploited. so I went to England for the 3rd time, & within 2 years I obtained a very good job where my weakness didn't matter. I didn't tell the GP what the women told me. I had to retire on my 23rd birthday before the GP would allow me a blood test. He threatened me with incarceration in a mental home for daring to come back to him. Then he did not allow me the results of blood tests until I agreed to give up "mens work" and agreed to look for a job as a cleaner. I would have done anything to obtain relief from the symptoms. I wanted to die, but I didn't much care for the symptoms in the run up.
I managed to get a job at WH Smith where 1 of the 2 Women had severe menopausal symptoms, so they were desperate for a 3rd worker as no one could tolerate her behaviour. But I only lasted a day, as I was too weak to push a hoover junior! The manager was very kind & concerned, as were others, they noticed the sweat pouring down my face. I also had eye disease & atrial fibrillation or flutter, but the GP told me that I had a hormone condition, & that it had no symptoms, & that my symptoms were caused by stress, then he found out that 'the husband on paper' that 'owned' me was an alcoholic & blamed me!
Then I got a job cleaning toilets for Boots (chemist) HQ. I was the only applicant, I soon found out why that was! I started on 1st January 1981, only then would the GP allow me a prescription for max dose carbimazole + propranolol, that same day. I only blacked out twice there. The medical people there put me on a trolly & gave me tests. Then they told me that I had failed the medical when I applied for the job -but kept quiet, as they could not get anyone else to work there, & that the women I worked with had been drawn from all over boots in Nottingham to form a cleaning team, as no one would work with them, 'A human toxic waste zone'? & that they had a policy of never sacking anyone, they were very candid.... They also told me that my kidneys were bad,& getting worse & that that was why I blacked out.
Sorry about the ramble, but I have never told anyone that before. Long story short, I couldn't stand it there & came back to Jersey the day after prince Charles married Diana, with a carrier bag of carbimazole & propranolol from GP, who told me that I had thyroid storm & that I could only get cured by "clever Dr's" in Jersey. I lost my career, my house, ( i didn't see a penny from that). I continued to get the jobs that no one wanted, which did not last, had to borrow £ & stay in a guest house, pay for food that I never got, as I had to start work at 5am, then when the bag of drugs ran out I tried to find a GP, but no one would take me on. Then my Mother (who was having flashbacks of her Mum's thyrotoxicosis B4 she died when my mum was 12) asked her GP if he could take me on. He agreed to & told her that he would get me a cardiologist apt. But the only Cardiologist here had just retired. So the private & very expensive GP couldn't find any stocks of Carbimazole, but he got them imported through a chemist that he had shares in. 2 years later - still no sign of my medical notes from UK.
He never once tested me, but when I became very hypo like, I asked him for a thyroid test, only anaemia was tested, which I did not ask for. As I became more hypo, he agreed to allow me tests at the hospital, & I saw a general chest consultant, I was tested every 2 months & eventually they allowed me to stop the Carbimazole. On My last appointment I saw the very 1st Endocrinologist, who warned me that my Thyrotoxicosis could come back, but I was adamant that I wanted to stop, I had so many symptoms of hypo, & was struggling, + my eyes had stabilised & I was able to drive again. But at no time did anyone tell me anything, on that 4.5 year carbimazole journey & until recently after joining the Thyroid forum I never looked into it.
I am appalled at the way you were treated pennyannie! I am though pleased that you are able to source T3 & NDT. I expect you know that selenium helps the TED, I often forget to take it! Yes I do see that Graves is included here, I have found no end of help & support here just as you have. I will discontinue the OTC glandulars gradually, also the T3, & try again to get records. Take care.
OK- so you said in a previous post that when you around 19 you had a contrast dye procedure - was this in readiness for RAI thyroid ablation and did that every happen - as it's just a drink or a tiny tablet usually dispensed in Nuclear Unit of the hospital.
So, were you on AT drugs when 19 and did the hospital; " treat you " and then the AT drug stopped with you being discharged back to your own doctor and for a period of time you felt better ?
Or it could be that you have never been been " treated " with RAI and left on the AT drugs to cope with as best you could with these hyper episodes that have plagued your life.
Hyperthyroid and hypothyroid are the two extreme ends of the same - T3 stick :
Too high a T3 and you may have hyper symptoms - too low a T3 level and you may have hypo symptoms.
The Carbimazole is an anti thyroid drug which blocks your own thyroid hormones T3 and T4 rising any higher - staying on too high a level of the AT drug for too long will cause hypothyroid symptoms -and there is also the risk to other organs within the body.
Generally speaking Carbimazole needs regular blood tests of T3 and T4 and very careful monitoring - as it's a fine line between keeping the patient well and making the patient hypothyroid.
So, more recently you asked to come off the AT drug after being on it 4+ 1/2 years and were warned you may become hyperthyroid again ?
So, are you being monitored on T3 and T4 levels since stopping the AT drug ?
So, with no obvious help or advice you have introduced T3 and thyroid hormone supplements to try and improve your current health - what does the endocrinologist suggest and why isn't he prescribing and monitoring you ?
Can you have a thyroid scan to assess the current state of your thyroid as to establish it it has atrophied after all this time and AT medication ?
Graves is an autoimmune disease that just happens to attack the thyroid - and it's because the thyroid is such a major gland that the symptoms expressed can be life threatening.
Graves is an autoimmune disease and as such it is for life : there is probably some genetic predisposition and something happened to you to trigger your immune system response.
Graves is in your blood and DNA and the antibodies will wax and wane and read Graves is triggered by anxiety and stress - both of which you have experienced by several bucket loads.
Graves is poorly understood and badly treated and the mainstream medical believe
once the thyroid is disabled through RAI thyroid ablation or surgery, the disease is then seen as " not life threatening " and you are then hypothyroid and discharged back out into primary care and basically seem to just have to get on with it :
I'm sorry - I too am guilty of going on a bit - it's just my thoughts having read the above and your history, and may read a bit all over the place -
So just now pick out bits above that may make sense of your situation and come back on if I got stuff wrong or want to further.
P.S, just to add : you must not be dosed or monitored on a TSH - it is the least reliable measure of anything especially if you have Graves Disease - you need to be dosed and monitored on your T3 and T4 blood test results and your T3 and T4 levels balanced and kept within the top quadrant of the ranges.
I'm self medicating with NDT and I treat myself according to symptoms rather than a blood test.
I feel at my best with a T3 slightly over range with a low T4 - bloods taken 8 hours after medication - had I waited a bit longer- like 12 hours - or eaten - or overnight - or left a 24 hour gap between bloods and medication I would have found my T3 and T4 in range and not " upset " the doctor !!!
Sorry pennyannie, I should have explained, yes I am all over the place right now, Dr's freak me out, as I have ptsd, been abused by them in various ways all my life, plus they killed my husband & mother & covered it up. I am 63, when I was 16 I emigrated to England, but I was homeless or semi homeless, so I was back & forth. While back in Jersey at 18 for (2 years), I had bad kidneys (from age 14). I had been squatting for 9 months, & looked after my niece at weekends in exchange for a plate of chips!, I was bull dosed by father of niece into getting a scan of my kidneys, but I discovered that I had to pay full price, (as I was unable to obtain employment), so I had to borrow the £ to pay the hospital (equivalent about 60 hr's wage) Took me 18 months to pay it back to him, & no address for hospital to send results to, as the building I had stayed in was demolished, so no follow up. We have to pay for Dr's here, & I rarely had the £.
I think the iodine dye for my kidney scan when I was 18 may have triggered latent graves. I also think that the record of my graves while last in England (when I was 22 -23 ) was never passed on. If the GP's records show almost 4 years of treatment with carbimazole here in Jersey, & if I'm right in thinking that the carbimazole that I managed to buy while back in Jersey when running out in the late summer or autumn, then the max dose carbimazole regime may have been closer to 5 years, depending on when the GP was counting from.
I didn't get blood tests till 4 years after start of treatment, at which point I was allowed to cut down over 6 months, & then stop. No hospital ever treated me, only Gp's. The last 6 months ( in the 80's) the hospital had excitable medical students question me. The consultant knew 0 about thyroid, & just stared at me for 5 mins. But while in Nottingham at the start of the debacle - when I phoned surgery, the receptionist said that no one had ever seen such high levels. I didn't ask what of, as I was told by the gp that my symptoms were 'neurotic.' And so I supposed that I was the proven most neurotic person on the planet! I now realise that she was referring to either t3/4 or antibodies, & the Gp lied. In Jersey too questions were never answered, "quid pro quo" was all I got out of them, but they kept quiet. I now realise that they had no records. The 'husband on paper' showed me a clipping from nottingham rag reporting that the 'alcoholic' Nottingham GP was arrested for fraud, along with a chemist. I just didn't rock the boat - as I didn't want to be incarcerated. But I was not mentally ill at any point, just scared, broke,sick & alone without internet.
The friend that has a nurse daughter just phoned to ask how I got on with the phone consult Endo yesterday. I dropped heavy hints about needing a nurse to draw blood. But she didn't respond! I asked her if she would act as witness to my attempts to gain access to records, she said yes of course.
As for the endo, he won't do anything, no scans, no antibody tests, my levels were ignored when I was hypo, & ignored when I was very hyper. & now they are climbing, but I have been supplementing, so I cannot be ill. I have neuropathy, fatigue, exercise intolerance, hypothermia, chills, swollen joints & stiffness, rhinitis, cough, palpitations, hair loss, inflamed eyes & malaise but no one want's to know, & they don't sound like thyroid anyway.
You are doing well, it is best to self medicate isn't it, & you are a credit to the thyroid community. Long may it continue. The endo that dismissed me agrees that Dr's should not go by TSH too, & that I must go by symptoms. But all the GP's I paid ££££££'s go by TSH, & they are the Dr's that bankrupt us, & keep us sick here.
I too thought I would obtain my original medical records but just back to 2003 when diagnosed with Graves.
I found it so stressful, in 2015, just asking my doctor about long term Graves Disease, and should we be testing T3 that this alone caused a rift in the relationship, exacerbating my symptoms, and at which time, I still thought I needed and expected this person to be helping me get better.
I decided to move on and deal with where I was and what I was dealing with then and not worry about the past.
i think you need to establish if you still have any thyroid function and believe the endo can help with that : and then at least you know what you are dealing with.
Your thyroid might have burnt itself out - considering you are now taking thyroid hormone replacement and presume hypothyroid.
The majority of the symptoms you describe are hypothyroid, there is a full list of hypothyroid and hyperthyroid symptoms held on the Thyroid UK website who are the charity who support this amazing forum, and there are some symptoms that can cross over as both hyper and or hypo - so it gets a bit confusing.
You can't change what has happened - but you maybe able to change how you are treated when a diagnosis of hypothyroid is made and then receive the appropriate medication and have some level of support.
It is ironic in that I didn't have to pay for any of the treatment that actually made me more ill - but now I do have to pay to make myself better - as if I stay within the system, I'll not get the care, understanding or mediation that I now need to tick over.
You are so brave! I hear what you are saying, Iv'e been there, so very similar - but then I was never diagnosed with Graves, ( I may have had multi nodular something)? & I was not under an Endo either. Technically I'm not sure I am now either. The Endo I spoke with told me Go to your GP. But she won't prescribe the or investigate, & just foists me onto 'specialists' who bounce me away. The GP that charged me double & told me to get rid of my thyroid based on TSH alone told me that my thyroid had burnt itself out too! How ironic.
I don't need thyroid pills now. I can see that my levels must have bounced from low to high & back again, & that's maybe why I was never allowed treatment for the hypo. But my experiences of endo's who lied to me, & accused me of buying 'sports steroids' because of my very low TSH - (I had to google that term) - for years off the internet has put me off Dr's for life.
I have no wish to prolong this charade, & am only looking to acquire some short term energy & clarity - just enough to write my will & put my affairs in order. No life - much less 'quality of life' & now no possibility of obtaining an equity loan ( ironically - if I were living in another country I could)! leaves me with no motivation.
I hope that your health remains stable, & that you continue to obtain relief & level of support. Good luck!
The standard, yearly thyroid function test, performed in primary care by a doctor, for people diagnosed hypothyroid, irrespective of why , and who are on thyroid hormone replacement is just a TSH :
The laboratory will further analyse the blood sample if the TSH looks out of range :
If your doctor believes the TSH is the bee all and end all of all thyroid blood tests she is sadly lacking in this specialisation, and probably why she seems happy to refer you to all and sundry as her own knowledge base isn't there.
I just had to scan my passport and send off asking for what I needed . No special form or anything but I know it’s not the same everywhere and that there was a name for it I couldn’t remember so thank you. After strong word with the endocrinologist I spoke to last phone consult I’ve been given a different secretary’s phone number. Will it help , who knows 🤷♀️but I will use it if I need to without hesitation
I really hope it will help you. SAR's are not always as simple as they would have you believe - if they are hiding something, as I discovered. Good luck!
Already discovered a false diagnosis and got it removed by GPs. Only because I was asked at a gynaecologist how I was managing it. Had no idea what she was talking about and she advised me to request my now gp look into it. They were reluctant to begin but I insisted and told them that I was holding them responsible for any costs incurred if I was taken ill abroad and they refuse to pay because of undisclosed illness. Did the trick
If you are concerned that Graves is an issue , then rather than worrying about getting access to old record's it would seem logical to ask The endo when you go to see him to run a TRab test. This will show if you currently have Graves antibodies
.With access to medical records , if you have a complicated mental health history , (or if they think you have !) then you may never be able to get them ,as they don't have to give them to you if they think reading anything contained in them could 'cause you harm'.
I don't know the exact wording , but the gist of it is.. we have a right to our records unless they think they know better , and as far as i can see , if that is what's been decided by the GP making the decision about what information to redact and what to leave visible, there's not a lot we can do about it.
The last appointment i had in person with Gp involved me losing my cool, and even though i've had full access to record's , most of what he wrote regarding that appointment has been redacted, and i will just have to accept that the chances of me ever finding out what 's written in the " **** ******** " section are slim to none , and probably not worth the effort of doing my head in trying to find out.
I’ve been asking for trab test since June when the were last tested high . At same time needing replacement t4 with a tsh of 41. 5 and both free ts well under range. They have no idea how to treat I find. Requested a thyroid scan this time and nothing said which is why I’ve now sent for my records. I sincerely hope the op gets more luck with treatment than myself
Sounds familiar. I asked for TRabs in October of 2018, when my eyes got bad, & TSH had disappeared. the GP said she would request them, but there was no request on the blood printout.
I find the whole issue of potential Blocking vs Stimulating TRab antibodies very interesting , but it seems hard to get endo's as interested as we are .Even for people without graves , it seems there are about ? 10% of Autoimmune Hypothyroid patients who have some TRab , so you'd think it would be worth doing the test to see what's what.
Although i understand there are technical difficulties with actually measuring the blocking ones separately from the stimulating ones.
But i'd have thought that in people with a history of graves they'd be keen to keep an eye on TRab levels... but what do i know...i'm not an endocrinologist ..lol
My history is hashimotoes 25 yrs. Graves last three yrs but thyroid eye disease last 14 yrs. I’m constantly being told oh your an unusual case and promptly dismissed. I am determined not to go quietly
Stupid isn't it ... i'm not 'interesting' enough for anyone to check mine ... never even got anyone to feel for a thyroid , let alone scan it or do TRab. So i have no idea how much if any i have left after 20 yrs since diagnosed "no goitre , but >3000 TPOab"
And you are 'really interesting' but they still not keen to see why ....
It's no wonder they don't understand much about Autoimmune Thyroid Diseases... they never have proper look at things that they could so easily test.
I have asked, 1 GP said she would request them, but didn't. Endo has dismissed me, he is not interested in my health. I was invited out by an old friend on Sunday, but I had to cancel - as I felt ill. That friend has a nurse daughter, so I will need to try again to see old friends, as I may ask if she would give me a blood test for TRab & send it off to a UK lab, but only if I get worse. I have been slowly cutting out self sourced thyroid meds.
I don't have a mental health history, but GP's believed I have. I was sent several times to Psychiatrist, only for them to send me back to GP stating that my inability to tolerate AD's was physical disease, also that I am mentally sound, the last time it was secondary hyperparathyroidism, which I diagnosed myself B4 blood tests confirmed.
However GP's opinion is law, & the current GP told me that depression is caused by a lack of serotonin. I don't know if I have depression, but I do know that I had thyrotoxicosis,& then hypothyroidism, & that Dr's often confuse all 3. Also I have PTSD & Complex PTSD, which though not acknowledged or treated here, is still a black mark against me, leaving me with no human rights, as though I were really mentally unstable.
That phrase "may cause you harm" to read was used on me a few years ago by SAR's in relation to another matter. They offered me counselling B4 releasing the heavily redacted documents, then withdrew the offer & told me that I had to hire a counsellor to go the the documents with me - & that they would pay afterwards. So the counsellor that I hired charged me full price ( not sliding scale) & confirmed that I would get my £ back. half my well below breadline income each week for 7 months, & she was not interested in the records at all, & actually made me even more traumatised by the end, then I was told that I would not be reimbursed as the medical records to prove that I had severe trauma were not forthcoming.
So the counsellor who believed them & not me, was unhappy to lose her cash cow, I had paid her £1000's, & run out of £, but all she did was have me read fairy stories & rewrite them. At best it gave me a chance of seeing another human being once a week, what was in those records was just so horrific.
But if I could survive that, & the callous cover ups & persecution of me that they brought - quite frankly - I think that a peek at what if any medical records are left would be a walk in the park in comparison to that, mental or not...
As to your experience of seeing redacts galore, do not the medical lawyers have any power over these tin pot gods in the UK tattybogle?
I don't feel the need to pay a lawyer loads of money, and cause myself loads of stress and hard work in a probably futile attempt to see what anyone has written about me.... if they think i'm unbalanced then kicking off legally won't change that opinion whatever they write on paper. (in fact it would probably only confirm them in that opinion)
Anyway . we're all a bit unbalanced sometimes , even Doctors..it wasn't just me that lost my cool.
My medical notes have 'counselling' all over them ... there's no way to remove it ..because i've had loads of counselling , ( and most of it was usefull)
But i do accept that the "**** **** " on my notes could be hiding anything, including the GP's embarrassment at what he said , or an incorrect report of what he or i said, or an incorrect opinion about my sanity, BUT it could also be hiding a genuine medical /mental health concern.
They have a right and a duty to redact certain stuff before we see it, they have a right to insist that we have someone with us when we get access if they feel its neccessary, and if that's what they decide , it won't change no matter how much i pay a lawyer ... you may have guessed i don't 'do ' lawyers .
"They have a right and a duty to redact certain stuff before we see it, they have a right to insist that we have someone with us when we get access if they feel its neccessary, and if that's what they decide"
Whereas you have no rights? The UK sounds as bad as Jersey!
i'm confused now... i thought from what you said at the top of the post the Endo had asked you to go and see him ?
"I got a letter from the Endocrinologist last month asking me to come in to see him in person. I got the impression that he had had a call from 'Monitor my health' - as he knew the name of the lab as he was checking his PC, also because I had been dismissed, & suddenly I got a letter out of the blue."
But last reply to me said:-
"Endo has dismissed me, he is not interested in my health."
If he's asked you to go and see him in person , then he's still on board, so ask him if he'll do a TRab, as part of monitoring your Graves history.
I get the impression from many posts on here that GP's don't/can't order TRab 's easily, but that usually it's endo who order them.
Yes, I saw him, when out of the blue he summoned me. Then he arranged for blood tests of calcium, parathyroid, vit D, tsh, ft3, ft4, & liver. The phlebotomist showed me on the PC screen what he had requested. Then a week later he phoned,yesterday, & that's when he dismissed me. All is fine.
So he said TFT's are 'in range ' and At top of range' ? , but he didn't give you actual numbers ?
What does he say to a direct questions of "what is my fT3 result ?"
"What is the lab range for the test ?"
Can you phone his secretary ?
Doesn't look like he's interested in doing a TRab then... is he private ie. are you paying him ? or is he 'whatever the health service is called in Jersey' ? .
Hi tattybogle, yes! I ask if T3 was in range - as I am cutting down on the pills I buy, & as my last UK finger prick test was over range, he said yes, so I asked him is it optimal? he said yes, so I asked, what is it? he said top of range, I said, may I ask what the # is? he said 9, & the top range is - i know, 8.1. He put the phone down, so I could not ask any more ?'
So from that - I can deduce that - when I was on double the dose - (MMH test )in November my finger prick tests were in range, even though I left a 10 hr gap & (ignorantly) took the full dose all in 1 at midnight, then 7 weeks later,on another FP test & on a further dose reduction they were then over range - in spite of further reduced dose & now the local phlebotomy test that I had last week on half the dose of 1st test & also now - a big gap, on a SPLIT dose (as I had trouble getting the test done within the 12 hr window) - the T3 is the same range, i.e over range as the 2nd test in spite of gaps & half dose. Now I'm no expert - but, shouldn't my levels be well within range & dropping? I am now taking just 6mg of Tiromel, & 2 over the counter supplements. Yet levels have been climbing. The TSH is most likely still 0.01 too.
The specialists are free here, but you only normally see them when you are at deaths door. A 2nd opinion GP urged me to try again to get a referral from my own GP over 2 years ago. The GP's here charge around £30 for the referral, £35+ for phone call to tell you all is fine, or prescription is ready, + £20 for blood tests on top of 10 mins at £50 for a dressing down, & you are supposed to go back to GP afterwards, another £60-£65 to be told that you are in perfect health. No, we can't phone secretaries, or for that matter DR's here.
We don't have private specialists here, so a 2nd opinion is not possible. I spent £1000's of back & forths to GP's - & even changed practices to try & get referrals, & then £100'S to get a different endo, but they are all diabetes pill pushers here, I say "all", but I think he is the only one here now. I doubt if he's ever heard of TRab...
You just reminded me of something tattybogle. When I was very hypo, a few years ago, but FT3/4 were still in range, but right on bottom, I sought a 2nd opinion from a different GP in same practice, on the advice of a friend who was herself hypo for many years. I had taken what I now know was very high dose biotin the night B4, & had just found out (from this site) - that biotin skews FT3/4 to appear higher. So I was advised to get the tests redone without biotin the day B4 with a different GP.When I told the GP this, he attacked me & claimed that my TSH was a thyroid hormone, I said 'no, it's a pituitary hormone that signals the thyroid to step up production. He then said, no, you have thyrotoxicosis, & you need to get thyroid removed. I got no blood test, or prescription, he said I have CFS, & to buy B12 patches, & St Johns wort, & he charged me double for a 10 minute appt,(a weeks income). But no Dr has ever tested TRab to back up their claims that I was hyper when I was hypo, or hypo when I was hyper. I asked for TRab & was promised it, but never got it. I won't ask for it until my eyes are really bad again, if I get no joy, I will get a friend to take me to A& E! I can't go on second guessing. GP's use financial bullying tactics to deter poverty stricken patients, & double down on their ignorance here.
Yes I also find that he who shouts loudest gets the best results lol. I didn’t even mention Sar they never asked why I wanted them so I assumed it was a form sorry
I'm pleased you got there. I tried several times to put in a complaint, but was prevented from doing so. I went to CAB, but they shied away in the end, & so I got nowhere. This time - if they try that trick again, I'll get very mean & mob handed!
Thank you so much Starsw. I have read, & I believe you are onto something there. I take 2 IV bovine metavives in a split dose, the reason being that there are only 15mg? of nucleotides in each new formula , as opposed to far higher N's in the porcine version.
But I never felt well on the Metavive , even B4 the added N's- in spite of higher FT3 & Ft4 bloods, + I put on 2.5 stone - in spite of better levels. Also GP's did lymphocytes twice - early last year, & they were climbing, & were near top of range on last 1, but no more were done since, The only other time they were done was when I was anaemic with shingles about 10 years ago, & they were very low then. Could the nucleotides be pushing these up? I don't know, but I will see how I feel when I stop the metavive.
We must be vigilant, & I really must try to find a way of gleaning if I have ever had autoimmune disease, more than ever in light of your info.
From the medical papers I have read Nucleotides do promote the activity of both Th1 and Th2 lymphocytes and enhanced mainly Th1 cells from there the Th1 cells do activate cytotoxic Lymphocytes and macrophages the Th1 cells are secreting interlukin2 and interferon y those are responsible for pushing the production of IgG2a antibodies usually responsible for attacking thyroid tissues
The T cells and B cells that are also called killer cells they are protecting us from infections but when they are confused they attack our own tissues especially the T cells lymphocytes so by enhancing our immune system we are getting more unwell when we have auto-immune disease. (ofc it is much more complex than that)
I f you had Grave disease it is an autoimmune disease. I also think but not sure that Nucleotides accumulate in the body and the more you take and the longer the more it piles up .
When I stopped Metavive (was taking the Porcine) I felt better with 2/3 days strangely my number were showing good results but I was feeling very unwell going from sleepiness to anxiety and mainly developed a painful thyroiditis and awful headaches (and this is very rare with me) all this is gone after 10 days using Forefront Bovine.
Thank you Starsw, I am pleased to read that you have found an alternative to the nucleotide filled Metavive. I don't pretend to understand the Th1 /Th2, IgG2a interactions, I have not discovered any papers mentioning these, but I don't have thyroiditis. I have just received the blood printout. My white cell count is 6.1 so now much reduced, & Neutrophils now just 55%.
Thank you Jenny the fact you are taking the Bovine one is certainly better I sift through many papers and wrote down a few data's that I thought were relevant to the Nucleotides/ immune system interaction. Hope you get better take care
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Endocrinologist letter - what now?
Just had an awful endo. appointment.
endocrinologist appointment today
Nurse phone call update
Follow on from Sister's results......
