Not all they are cracked up to be?
Fine if you can find a thyroid specialist but the huge majority are diabetes specialists, no glory in thyroid problems. Wonder if thats because the majority of sufferers are women?
Since I had my hemi the endo doesn't want to know me :-( I've called a few times to see if he can address my ongoing problems and he assures me my weight and hormonal issues are to be addressed by my GB and other specialists. Meh.
A lot of you here seem to think that treatment for hypo is better here in the US than it is over there in the UK. But I have been doing more research and I've found where endo doctors are not all that they are cracked up to be. First of all, I had to be referred to 3 before I would find one that treats hypo. (Sorry, I'm not up to typing all those big words. Being on the computer is now exhausting I find where I used to be on it 10-13 hours a day and think nothing of it...it was how I made my living.)
A big name here in the US is evidently Dr. Kent Holtorf. He says thyroid function has been oversimplified in an attempt to be able to use a simple test (i.e. the TSH) to define "normal" thyroid levels. Dr. Holtorf doesn't agree. He considers a TSH above 2 as clear indication that there is low tissue thyroid levels. Says Dr. Holtorf: "A normal TSH does not rule out thyroid dysfunction and a low TSH is shown to be an indication of excessive tissue thyroid levels only 20% of the time (80% of the time that is not the case). The TSH becomes an extremely poor marker for tissue thyroid levels if there is any inflammation, depression, chronic illness, chronic dieting, obesity, stress, chronic fatigue syndrome, fibromyalgia, diabetes, insulin resistance, leptin resistance present." To read more about him and his opinions, just Google him. You'll get lots of hits. Just remember that this guy also wants to sell his own product.
Then there is Mary Shomon, thryoid patient advocate for over 20 years. She says that many endo docs don't agree on how to interpret even the TSH test. A patient with a TSH of 3.0 with thyroid antibodies would merit hypothyroidism treatment for some, yet some won't diagnose hypothyroidism until the TSH rises above the "reference range" (i.e., 4.5 to 6.0), and yet others think that no one should be treated until the TSH exceeds 10.0. If these docs can't even agree between themselves on the realities of hypro, how do you know which doc to rely on, because most of us do rely on the doctors. To me, Mary makes a lot more sense than some of what I've been reading put out by doctors.
utterly hopeless...don't go anywhere near them! even my GP warned me off! they just inc or dec your thyroid meds have no idea about modern alternatives and will mess you up big time...want shooting i suggest!!!!!!!!!!
look at all the advice out there eg thyroid uk have a web site ...try boosting with supplementaion if low...look at your iodine levels...have a urine test for that and make sure you get T3 and T4 measured as well as your TSH via GP also vit d levels and mag and pottas ...you can do a lot to take charge x
I was always taught that if there is an alternative between an old medication and a new one to take the old one, which at least has been tried and tested!! Many new medications (levo for instance) have been shoehorned in because they are cheap, have had NO medical trials to see if they work and are useless long term!!
agreed...cheap being key!
thanks cookie ...lets keep these exchanges going ...we'll puzzle it out!
what readings have you got for us....plus clinical symptoms?
That is so true ,most do not want to know & few know how to treat us Thyroid patients properly.I have seen two now,the first would not discuss NDT that I asked about because Levothyroxine was not helping me,the second one said she did not mind me using it but would not prescribe it.I am now self medicating & feeling much better & will not be travelling 36 miles again to be ignored.I will save on petrol money & put it towards what makes me feel better NDT
Here in the USA a prescription drug cannot be released for patient use until they have passed extensive medical trials and also passed by the Food and Drug Administration, a national government body. So evidently Levothro had to go through this same process in order to be prescribed here, unless you are partaking of a clinical trial. That is why so many US people cross the border to Canada to get their medication, it is cheaper and they can get there what is not available here. That doesn't necessarily mean that there are no harmful side effects to these approved medictions. Some people just react differently. I had an arthritis drug that was just super for me but someone had a heart attack and died, even tho that was listed as a slim possibility, the person choose to take it anyway. His family seued the manufacturer and it was withdrawn. I had another drug prescribed by a rhumatologist and it made me so dizzy I fell and had to call the paramedics to get me up off the floor. My knees are so bad that once I am down I cannot get up by myself. So now I have to find another way to help with the pain. So there is no "shoehorning here." Even with the Ebola killing it's way through Africa, there was a vaccine still in the testing process and had not passed FDA yet, but a special exception was made to get as much as this trial drug out to patients over there. And since it was still in the testing phase, not being manufactured for the medical market, quanities were very limited and they had to decide who should get it. It went basically to medical workers. Here it takes years of testing and passing through FDA requirements before a new drug is ready for the market.
No, levo has NEVER had any medical trials anywhere!! It was shoehorned in because it is CHEAP!!
ok...that's it!
Guess who I'm being given an appointment to go and see....yes ..an endo!
I asked for a urine test for my iodine levels.... But its beyond my GP's brief....!! Ok so i'll go and see the bugger but should I get ready for a fight? I've asked for antibody and Ig tests too.
I'd also like to know my pottasium and magnesium levles in relation to each other. Anything else I should be going for? Got my TSH that was 5.1 T3 and T4 were within normal levels. Would like my progesterone levels...I may be oestrogen dominant.
anyone listening to the thyroid stuff with shaun croxley of underground wellness? Its brill...we should all be tuned in...sara gottfried is running a class...its fifty quid to do her de-tox programme ...i've signed up. Anyone fancy joining me?
Hi Marey,i have only been to an Endo once & was not overly impressed' she told me to drop my dosage as I was overdosed and to go & have another blood test in 6 weeks.Well went to have bloods done on Monday & got called to go into the surgery today.He said I am still overdosed but when I asked for my results I was surprised to see they had tested for everything so perhaps my Endo visit was not in vane.Going back to see her on 26th so will see if she says I am overdosed.I will lower again if she asks me to but if my symptoms worsen again I will increase my dose regardless of what my blood results say because years ago when they used NDT & there were no blood tests they just dosed by how well you felt.
NEVER let your doctor / endo reduce your meds based on blood tests, you will be extremely lucky to get your meds raised agin if you need it!!
Had a response to posting my blood results on a help group last nightwarning me that overdosing herself on NDT & while feeling fine she suddenly got heart problems & was rushed into hospital.She is saying that this was caused by taking too much NDT.I have been taking it for about 5 months now so dont know everything about it but I do know that I feel better on it than I ever did on levothyroxine
No, its not 'od' ing on NDT that causes the problems but UNDERdosing!! Any doctor will tell you that NDT either does not work or causes all sorts of problems, it doesn't, its just that the huge majority of doctors are too ignorant to discover the facts and they are NOT like doctors in the past who saw you from the cradle to the grave they only have a vested interest in keeping the big pharmacies in money!!
very helpful brewster ....thanks so much!
thats helpful strategy advice....as presumeably its poss to take only part of the med...is it a pill...haven't seen the NDT ? if feeling ok....rather than having dose reduced and thereafter having difficulty getting it put back up...so just keep excess to one side and take per clinical symptoms?
Hi glynisrose,as I have said on this forum previously I had no idea how much NDT to take so was working my way up until I felt no symptoms.On levothyroxine I was taking 125 a day but felt awful which was why I started self medicating & was on 3.5 grains but after dropping half a grain I am now sleeping better &my symptoms have not worsened as yet so I am happy at this lower dose.However saying that I would not hesitate to up the dose again if my symptoms worsen again.What I would like to know if someone can tell me is how do you know when to stop increasing the dose.Also although I have no faith in Dr#s any more there must be a blood level reading that says how well you are .I know that most Endo's will not prescribe NDT but this last one i saw does seem to understand NDT even if she won't prescribe it.Marey the NDT is in tablet form & quite difficult to divide & it also has a short self life compared to levo.It is also much more expensive but for me there is no question of going back on levo,when I need to order more we just have a week eating from whatever is in the freezer & the housekeeping buys my NDT.There are only the two of us at home now & my hubby was the one who decided he would rather have a freezer week than live with me on levo