Thyroid patients worldwide deal with their own challenges and problems. Take a look at what happens in some countries in Northern Europe.
In Denmark, the head of the Endocrinology Society writes on their website that many thyroid patients, especially women, seem bitter, simply because they have to take a pill every day due to their having a chronic illness. He ridicules the use of T3 and Natural Desiccated Thyroid, and advises all Danish doctors never to prescribe them to their patients, no matter what. In his article he hints that although there are several studies showing that some get better from T4/T3 combination therapy, or with NDT, these studies, according to him, are all poorly executed, and the results are a consequence of the researchers giving patients too high a dosage of thyroid medication.
Consequently, it’s nearly impossible for thyroid patients in Denmark to find a doctor willing to prescribe T3, and even harder to find someone willing to try out NDT, as doctors believe these medications to be dangerous. And for those who do prescribe T3, the dosage is severely limited, to a maximum of 5 mcg a day (in other countries the normal dosage is up to six times that amount).
When thyroid patients remain symptomatic on monotheraphy and ask their GP for a referral to an endocrinologist, many are refused by the endocrinologist and cannot even get an appointment because their blood tests are “fine.” Even if the patient’s GP says otherwise.
However, one pharmacy in Denmark actually makes its own NDT called Thyreoid. This medication is used by many patients in Denmark with great success. But earlier this year, quite suddenly and without warning, the production stopped, leaving thousands of patients confused, worried and, not least, with no medication for some time. Now the Danes cannot get the Danish Thyreoid without a special certificate from the Danish Public Health Service.
Fortunately, after a lot of lobbying and pressure, patients were allowed to import Erfa or Armour Thyroid from any country in the EU, which has become the only option for a great number of people. However, this is a lengthy procedure, and patients may have to wait for weeks to get their medication.
For some reason, Free T3 has been removed from laboratory tests, making it difficult to find the correct dosage for patients. After much pressure it has been re-introduced, but only in parts of the country.
Danish thyroid patients celebrated the World Thyroid Awareness Day on May 25th by organizing a demonstration in Copenhagen, demanding better care, and there will be more demonstrations in the future.
At least some good is happening in Denmark. Research is being done on thyroid conditions and the consequences for patients. Some of this research has never been done anywhere else. One recent finding was that thyroid patients in Denmark – and these are the ones with a diagnosis who receive treatment – have an 89 percent greater chance of being on disability allowances and having a reduced working capability compared to the normal population. However, the medical community does not seem to take in the results of this research, still insisting that thyroid disease is easy to diagnose and simple to treat.
Danish patients fight for better treatment!
Contact info: firstname.lastname@example.org
In Finland, any physician prescribing thyroid medications other than synthetic T4 is investigated by the authorities (http://www.valvira.fi/en/licensing) as a result of other physicians reporting them. So far, three doctors have had their license to practice medicine limited to treating all patients except those with thyroid conditions. One doctor got a warning after prescribing NDT. The first doctor, whose rights were limited, won in the Helsinki Administrative Court against the authority Valvira. But Valvira issued a complaint to the Supreme Administrative Court. There are now three limitations and two written warnings, and one more doctor is subject to Valvira’s examination.
These limitations and warnings are temporary; and the final decisions haven’t yet been made. The limitations have been set to “protect the patients”. It took Valvira more than six months to publicly announce their defeat in court.
Valvira has directed discussions in closed Facebook patient groups against at least one physician.
There are around 290,000 levothyroxine, 1,850 NDT and 1,350 T3 users in Finland, and very many without a diagnosis.
The largest thyroid patient organization has appointed as their medical advisor an internist, who has proclaimed war on any doctor who prescribes anything but T4 monotherapy. The public health system only administers T4 and won’t take free T3 labs, unless the test is prescribed by a private practitioner, and then the patient has to pay for the lab tests and the doctor. An increasing number of health districts will not do tests prescribed by private practitioners.
This large patient organization sent out a questionnaire to their members to find out what their members had experienced from different medications. Most were happier with T4 + T3 combination therapy than with T4! We had to wait a long time for the results to be published ...
Those lucky enough to find a doctor who will prescribe T3 or NDT have to pay all costs themselves, plus special permit fees, all at a much higher cost than in the EU. And at any time, the medication that actually makes them better may be made unavailable by limiting their doctors’ right to treat.
The patients started a petition against Valvira when the first doctor was attacked. The petition has more than 8,500 signatures. There’s a text in English also. You can find it if you scroll down a bit. Please sign! We need all the signatures we can get.
Finnish patients fight for better treatment!
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In Sweden, the National Board of Health and Welfare issues warnings to doctors who treat patients whose TSH isn’t out of range or is suppressed due to thyroid treatment, or who (in their opinion) have too many patients on T3 or NDT. A few doctors have also lost their medical license because of this. Of course, The National Board of Health and Welfare has to know about it first, and it’s most common for doctors to report other doctors.
Hypotyreosföreningen (Hypothyroid society) gets a couple of e-mails a day from people who either can’t get a diagnosis or are not getting well on T4-only treatment. There are two societies for thyroid patients in Sweden: Sköldkörtelföreningen (Thyroid society) is working for patients with all kinds of thyroid diseases, and Hypotyreosföreningen are focusing on helping hypothyroid patients.
The situation in Sweden is equal to Denmark, and it has worsened lately:
1. Endocrinologists, in every part of the country, now louder and louder (since the patient group is also louder and louder), claim there is no evidence that treatment with T3 or NDT will do any good; most likely it will hurt the patient (heart failure, osteoporosis). If patients still have all the symptoms they had before they started T4-only treatment, and only the blood tests have altered and now look “healthy”, then the explanation is that the patient is depressed and needs to start exercising. If the patient says he or she feels much better with T3/NDT than with T4, then the explanation is that of course everybody will feel better at first – just as they will do on amphetamines(!) And in Sweden general practitioners do what the endocrinologists tell them to.
2. Until a few years ago, hundreds of Swedish hypothyroid patients travelled to Finland to see and get treatment by Dr. Karin Munsterhjelm. When she stopped seeing patients, another female doctor (also hypothyroid), located in Sweden, took her place. The doctor is private, which in Sweden means that the patients have to pay a lot more compared to going to a doctor in the regular public health service. This private doctor has helped many patients over the last few years. She also got a couple of warnings, but since she has great documentation on every patient and can show that they are now healthier than before (back at work, etc.), she has somehow managed to keep her medical license. Unfortunately, she is old and her health isn´t good, and it seems that she is currently unable to see additional patients.
Hypotyreosföreningen now sends many people to private doctors in Norway, and when they return home they have enough NDT medication to last them a year. Thyroidea Norge, the new patient organization in Norway, has also received several desperate e-mails from Swedish patients, asking for help to find a Norwegian doctor they know prescribes NDT. Thyroidea Norge then has no choice but to send them to private practitioners, seeing as a foreigner will not automatically be accepted into the public health service - meaning these patients have to pay up to 10 000 NOK (1500 USD) for their treatment in the first year alone, in addition to travel expenses.
We earlier had our hopes set on Stefan Sjöberg, a Swedish endocrinologist, who found out that: “L-thyroxine treatment in primary hypothyroidism does not increase the content of free triiodothyronine in cerebrospinal fluid: A pilot study” (http://informahealthcare.com/doi/abs/10.3109/00365513.2010.541931). He claimed, among other wise things, that not all people can effectively convert T4-only medication to active T3. But we haven´t heard from him lately. Perhaps he didn’t get the result he expected in the greater study following the pilot study. Or perhaps that study isn’t finished yet.
To sum up, it’s more than hard for patients to find a Swedish doctor who will prescibe T3/NDT. And even if they manage to find a doctor who is willing to prescribe NDT, which is a drug only doctors can get with a license and need a lot of paperwork to apply for, then the Swedish Drug Agency doesn’t approve the application very often.
As a result, many Swedish patients today are forced to resort to self-medication with medications they purchase on the Internet.
Swedish patients fight for better treatment!
Contact info: firstname.lastname@example.org
In Norway, we started a new organization; Thyroidea Norge (Thyroid Norway) after realizing that no website in Norway conveyed much information about thyroid conditions. The only website available for thyroid patients in Norway was a forum site called Sonjas Stoffskifteforum (Sonja´s thyroid forum). The web site was originally started by Sonja Midtlien, as a private initiative, in 1998, and soon had thousands of members, desperately seeking information about their conditions as they could find it nowhere else. However, this was just a website, not an organization, and, as such, had little influence on general thyroid treatment in Norway apart from being a great help and support to many patients.
When we started Thyroidea Norge, it was an alternative to NTF (Norsk Thyreoideaforbund), after we had unsuccessfully tried for more than a decade to get NTF to give patients better and more varied information. According to NTF, there is no problem with the T4-only therapy most thyroid patients get. NTF threatened its members that they would throw them out of meetings for daring to ask questions, and when members call in for help, NTF blatantly refuses to help them as they will not take responsibility for answering any questions. There is very little information on their website, nothing about new research or controversies, and some of the information they actually do give out is either lacking or wrong.
Recently, both the leader and the second in command in NTF resigned their positions after just a year or so, saying that they had tried, and failed, to change the organization and that the reason was that the whole structure is so set in its ways that no change is possible.
In Norway, with a population of 5 million, we have fewer than 50 endocrinologists who actually work with patients. Very few of them have specialized in thyroid conditions. And, of course, just as in other countries, Norwegian endocrinologists rarely agree to treat patients with NDT.
The information about thyroid conditions on public health pages is, to put it diplomatically, inadequate. It is also full of faults, and a lot of thyroid conditions are not even found on any page in the Norwegian language. The Norwegian media does not write about thyroid disease at all, except to tell stories about how easy these conditions are to treat. Never once has any Norwegian newspaper or television channel addressed the problems with Armour Thyroid reformulation, or all the patients who don’t get help, or the fact that so many thyroid patients are on disability, or any new research. In Norway, there is no tradition for journalists to educate themselves or specialize in writing about medical subjects. According to the Norwegian media, everything is fine in the thyroid world. Strange, then, that recent Norwegian studies show that thyroid disease is on the rise, that more than half of thyroid patients are not diagnosed and that out of a population of five million people, one million of these will get a thyroid condition at some time in their life.
These days, the Norwegian Endocrinology Society is working on national guidelines for all endocrine treatment. After only six months or so, our e-mails were finally answered, and they allowed us to send them studies and articles we think they should consider before setting guidelines for the treatment of thyroid patients. However, when Thyroidea Norge was launched on December 1, 2013, we sent e-mails to all relevant medical organizations, asking for help and co-operation. None of them answered us. Therefore, we do not necessarily expect the Endocrinology Society to pay any attention to the material we have sent them.
Norwegian patients fight for better treatment!
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