Hi babsi , sorry to hear of your experience and that you are still struggling with awful symptoms. Like most of us it is never straight forward, it takes time to see what is right for us. I have no experience with erfa thyroid but the first step is to get all your most recent blood test results and post them here with ranges. TSH, T4 and T3. Also Ferritin, Folate and Vitamins B12 and D. People here really can't be of much assistance without those. There is a lot of advice about adrenal fatigue and testing here so just keep asking the questions. Vitamin C is good for adrenal support, supplement 1000mg daily. You'll get there, there's a lot of help here
I also live in France - I assume you have spoken to your 'GP' about this? Are you in the health system here? If I need my B12 jab I can go straight to the local nurse, without speaking to the doc, and he will just do it for me. If I want a blood test, I just contact the doctor who arranges it and I then get sent the results at my home ( normally within 2 days) although I must admit I haven't tried to get Adrenal tests done. I hope you get it sorted x
I am sorry you have had a distressing time being left to get on with but am glad you are now on Erfa.
When you get your blood test for thyroid hormones it should be the very earliest possible and don't eat before it but you can drink water.
Allow 24 hours approx between your dose of Erfa and the blood test and take it afterwards.
Always get a print-out of your results and make sure the ranges are stated and post them on a new question for comments.
Also get your Vitamin B12, Vit D, iron, ferritin and folate tested at the same time as well as thyroid antibodies if you haven't had antibodies tested before.
ERFA is NTH from canada, I buy it in germany, large boxes of 500. comes in 30, 60, 125 mg maybe even more, and costs about 120 to 150 euros a box, according to strength. i find it quite reasonable
it is made since 4 generations by the same family, the present boss being the pope of anti ageing medicine , dr thierry herthoge.
he is pushing his knowledge of hormonal interaction a bit further then your everyday endo.
Could I ask how and where in Germany you buy it? I have also Hashimoto since it has been diagnosed by accident some years ago, as endos in Spain don't want to look on antibodies! I had been prescribed levo and was very bad until I changed on my own to Erfa 2 years ago. I buy it in Andorra but it's increasing price for every order. I am native German living in Spain and would like to give a try to buy it in Germany. Many thanks!!
I think prices will. E better in Germany, as I paid for a 100 box in Andorra 57€ of Erfa 30mg and you are talking of 120/150€ for big boxes of 500! My next order will be in some month, so I will see then the difference.
So back today as I asked at the Internationale Apotheke Stuttgart but they told me that they don't sell anymore boxes of 500tabs and 1 box with 100 tabs costs now 78€ plus postage! Do you have another idea where to get the 500 boxes at reasonable price? Did you try to buy in Canada?
I´m so sorry I did not see your post 2 years ago. They raised prices since I first got it there. I think they where just starting it cheap, then raised by 5 times. A box of 100 costs allmost the same as 500, 2-3 years ago. Very frustrating.
I always ask for a print out but all I'm given is a few simple numbers, never anything like all the results I see on here. I don't understand it all either, Free T4 etc. And I have tried to understand - think I must be a bit thick!
Who on this forum would ever have thought we'd have to take in so much info in order to get well. When you are given the numbers ask for the range as you only need them once and keep a note. It will be your other blood results which will change. I suppose they only do the TSH and T4 which isn't enough information. Also have they tested your B12, Vit D, iron, ferritin and folate - if not ask for these and also get the results.
My GP charges 30p for a print-out and it is exactly as the lab has printed i.e. results and ranges.
babsi, the only adrenal test that exists in France is the 8 o'clock blood serum test. But that is not good enough. You need a private test - a 24 hour saliva cortisol test. You can get that privately from Blue Horizon - détails on the main page of TUK - I'm pretty sure they send to France, but you could ring them and ask.
However, be warned that you doctor will not understand the results. Probably not even an endo will understand the results. They could prescribe HydroCortisone if they wanted to, but they wouldn't know how to treat with it. But, best to get the test done first, and face the rest when you come to it.
I take it you're self-treating with Erfa. I can't imagine a French doctor prescibing it because NDT is illegal in France. However, when you get tests done in France, the results are given directly to you, so you must have them. Best to post them on here - with the ranges, so that people can see exactly what's going on.
But, I'm curious, how much Levo were you first given that was too much for you?
then the same with an injection of some sort that should raise your result one hour later.
then there is a 24 hr urin test.
one is for addison disease , the other for the opposite, so yes i need the saliva test.
cause my problem is: the 8 in the morning plasma was very high, the 24 hr urin very low. and i had them done the very same day.
and yes , my psyciatre and my gp trust me with NTH. it´s not reimbursed though. I need a percription for Germany.
and you have to be a silver tonged devil to get it.
just kidding, you have to lye a bit. preferably produce an empty box and say, this is what my german doctor gave me, it works great!
i now get regular checks, which a french doctor can prescribe, as long as your values are not ideal.so this is not self treating.
NTH must be illegal, but docs are people too. just the douane, they can be horrible,confiscated and impounded 200 euros worth of Thyroid S from thailand I had ordered and payed for in 2012 !
when i first was given levothyrox i was given 25micrograms to take as i wanted. i was not told about the retard effect, nor did i know which symptoms were associated. but i was told this was for live and it would take a week to first feel a difference ,anything. no internet back then.
and that was wrong. the same day i took my first pill i felt like a nobel price winner. i could all at the sudden understand active people. i had a house to renovate, two babies, and i wanted to do spanish lessons, got up early, was eloquent, patient, organised, liked myself etc. . it was great, i never felt better in my live.
it lasted 3 days. then i raised the dosis to 50, nothing happened, i took 75 and became so aggressive, i called the doctor (this was in USA 1987) he said I must be allergic to the hormones, and advised me to stop them.
as far as I know no antibodies where checked.
i tried again from time to time, and never felt this good ever again.
but i knew from then, that everything is thyroid related, they just never treated me.
and now , after a having been through hell and back (at one time I was a vegetable) and slowly coming out of that state, all i want is to feel like i did on those 3 days
.but i´m afraid too many of my receptors died off.
Yes, yes, I realise there are the three tests, but I thought we were talking about adrenal fatigue. The injection test is for Addison's/Cushing's, not adrenal fatigue. And I've no idea where you would get a urine test. They don't do it in my lab. That just tells you the total in 24 hours, doesn't it.
What's NTH? NDT? I used to buy that in Belgium. Faxed them my prescription and they posted it to me. But, it is illegal, and my doctor could have been in trouble prescribing it for me. I never had any stopped, even from Thailand. A package was opened once, but they sent it on, anyway.
But, you won't find many French doctors willing to prescribe it, because they believe the Big Pharma brain-washing that NDT is unreliable, dangerous, etc.
I'm not surprised you didn't get on with Levo, sounds like you increased much too fast. You should only increase by 25 mcg every six weeks.
I Don't know that receptors 'die off', exactly. They just close down. And they need the right dose of hormone to open up again. In fact, they need to be flooded with hormone to reopen. They also need to have optimal nutrients. Have you had your vit D, vit B12, folate and ferritin tested? And ask for your antibodies to be tested. Mine were.
Well, that's what they say, but there is some discussion as to whether it really works like that. Besides, it doesn't stay there forever. RT3 'for example'? Do you know of something else that clogs receptors?
What happens is, when thyroid hormone is in short supply, the body shuts down certain non-essential receptors so that organs like the brain and the heart can still keep the body alive. But, these receptors will be re-established when there is enough hormone to go round. It's getting that amount of hormone that is the problem, because doctors Don't like giving you much.
There is also the problem of whether you can effectively convert the T4 into T3. A lot of people can't. So, they Don't get enough T3 to reactivate the receptors if they are on T3 only.
Yes, I know Mary Shomon. It was on her forum that I first started Learning about thyroid.
Well, one thing in common is that we both live in France! lol But I expect you live down South, in the nice bit. I live north of Paris, in the industrial bit!
in the south west, between bordeaux and toulouse, countryside, bastide towns, famous for food and wine, lots of english, many of them retired, but some of our kids married french, or english or dutch or german.
so, you probably got a job to keep you there. here is not much one can do, even when young, french and educated.
what would you suggest for me to read next, about hashis, i know janie is a bit of a special person, what about valery taylor from the adrenal fatigue group on yahoo?
forgot the name of the site, it´s with a zebra on it stripes are falling off, " feeling unraveled ?".or something like that.
can´t find it any more.
i called her a few times, when I was too confused with all those tests.she sounds like janis joplin, which had a thyroid problem as well...
my doc writes my prescription for me and my daughter , no problem there. never even knew it to be illegal.Before that, my schoolfriend , a german doc wrote it for me.
i buy in Germany , because the prices are far better then in Belgium.
and yes, my Thyroid S was confiscated,
before placing the order I called the factory in Thailand wanting to place an even bigger order. they discouraged me to do so! they knew why.
which I thought was very nice of them, I could have lost twice the money i sent.
douane sent me a letter, but I do not recall the exact content. they just refused to answer to me.
in one of your posts, you explain, that you were without appropriate treatment for a long period of time, same here.
you were worried about permanent damage to your heath because of that, same here.
I’ve had lots of jobs in France. Mainly teaching English, of course, but I also worked for Parc Asterix for three years. And I became a semi-professional, then professional, actor, and toured with a company for a while, did ‘extra’ work on a few films, worked as a dogs-body for a theatre director. Did some translating, and interpreting. Whatever I could find. Of course, it’s easier in and around Paris.
I suggest you read Broda Barnes, The Unsuspected Illness. It’s a classic, but gives you a very good grounding in the workings of the thyroid. He also wrote other books, but I haven’t read any of them. I’ve never been on a group for adrenal fatigue, so I don’t know about that.
In all the years I was taking NDT, I never once had a consignment confiscated. The people in the Thailand factories are very helpful, and do their best to get your pills through to you safely.
I never got that mail,until today. must have deleted it by accident.I sell houses sometimes, and translate for real estate brokers. but mostly I´m just tired.
if you could click on my photo, you can find my latest post, to do labs. I would love if you could check through it and tell me if we missed something. I think I found a wonderful doc here.
A wonderful doc? Where? I must have missed that bit. lol Do you mean the one in Paris? Well, he had his good points, but I wouldn't call him wonderful. He wanted me to take iodine!!!
am back having been in hospital, all about my legs and insurance and a fever i carry since I broke my 2nd leg. in 2014.
I had this fever, when the pompiers hawled me off to the hospital. it was 39.5 and kept beeing like that. it was supresst with 5 times 1000 mg of paracetamol per day,for 4 weeks, and i was told i had no fever any more. I just had cold sweat instead.
back then, in hospital rehab, I was told to double my dose of thyroid hormon, but nobody told me my tsh.( I just raised a bit, you need more when healing i suppose)
in hospital you are not to ask, and if you ask and persist to know, you are a pain to everyone, and you are treated as beeing a naughty child.
i had my tsh ft4,3 tested as soon as i was out, by my doc, who is always doing the 3 . and sometimes even the 2 antibodys.
my fever and heavy pain in my legs after walking or standing , persisted.
i was checked as an intern patient, by 2 internists, in 2 different hospitals. one of them knew i took erfa, my tsh only was checked and it was above 0, but under the limit. i showed him same values,from a month before:
tsh below limit, but t4 under limit and t3 at mid range. he said , forget t4! and wrote a letter to gp saying it was my treatment, erfa, giving me the elevated temperatur.
the second hospital , well , I said I took levothyrox. they did more tests, and still said my tsh was the cause of my temps.
all this with an elevated CRP value, an indicator of infection.
QUESTION, now my gp wants to get me back on levo. do you know of a case where erfa raises your temps up to 38, 39 C, but only when you you have moved a lot, and you are in pain? is there a corelation of low tsh and raised temp?
Well, optimising your thyroid hormone is supposed to normalise your temperature, but there's no way a low TSH can cause a high temperature, that's rubbish! I suppose it was just easier than looking for the real cause.
I lowered my erfa to 125 plus 25 every third day, instead of 125 and 25 every second day, and now my temps only go up to 37.9 after effort, and severe pain in legs, just where they broke.
but still, relaxed in the morning , my temps are down to normal, they go up after effort.
got handicap parking card now..
i tried levo, to please the doc, but got so bad, after just two days, panic attacs, the works.
thank you goose.
my latest blood test about hormones also showed a beyond minimum estrogen , even for post meno. so i added a bit of estrogen cream. and feel better in the head from that. amazing how hormones affect the head.
of course, that is how i get it in germany. my daughter too, even though she did not accept her as a patient, she is booked...i´m lucky to have met her as replacement doc, and when she opened her own practice in a neighboring town, i moved right in.
I hope she stays favorable, even though the two internists do not approuve. this is why I tried to go back on levo.
my german friend gp doc, that I know from school, her husband is internist, they both say my treatment is ok, its a french problem.
french docs are more indoctrinated by their teachers, they are sitting in class and take down the word of the prof as if it was god talking.
they are not encouraged to have new ideas. i know that from several german students , that did a semester in bordeaux. they are laughing about the way they teach there.
here is bordeaux, my doc studied in paris.
may not be the same,
but since you live in that region, maybe it is.
I find it a good idea to ask the receptionist up front, if the doc approves of NDT. in france its useless of course.It does not exist.
erfa canada runs a telefone line, I invite my docs to call, they can talk free to a colleage,
guess they do not want to know. remembering this, I shall call them again myself, and ask them the temp question.
Regards getting an adrenal stress test done you could contact a lab like Genova Europe ( based in the UK) and ask them if they know of a practitioner or doctor who is in France and uses their tests.
I felt a little better after drinking only bottled water, as many chemicals interfere with absorption. This forum is fascinating. I have been on levothyroxine for Seven years now.
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