Why do the doctors even bother with seeing us?
allergictodiets
Posts: 233 Member
A conversation with a new endocrinologist ( at a leading clinic in Hamburg ) yesterday:
HER: So how do you feel?
ME: Fairly stable, but still experiencing brain fog and digestive problems. And my weight is unpredictable.
HER: ( smiles ) So basically you are fine!!
ME: Could you suggest something to improve my situation?
HER: Oh well you could get some supplements from a drugstore but I personally don't believe in them.
*** And then she carried on with an ultrasound and managed to overlook a node that my small - town doctor spotted half a year ago. And then she suggested that we could see each other in "a year or so" ***
Well I will stick with what my small town doctor suggests, but I will still go to Hamburg because they give you an extensive blood test that is worth the 20€ journey. Otherwise complete fail.
HER: So how do you feel?
ME: Fairly stable, but still experiencing brain fog and digestive problems. And my weight is unpredictable.
HER: ( smiles ) So basically you are fine!!
ME: Could you suggest something to improve my situation?
HER: Oh well you could get some supplements from a drugstore but I personally don't believe in them.
*** And then she carried on with an ultrasound and managed to overlook a node that my small - town doctor spotted half a year ago. And then she suggested that we could see each other in "a year or so" ***
Well I will stick with what my small town doctor suggests, but I will still go to Hamburg because they give you an extensive blood test that is worth the 20€ journey. Otherwise complete fail.
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I have been through much the same myself. When my TSH was around 5 I was told by an endrinologist that we should wait and see until it gets to 10 and he only tested for TSH and T4 usually. When he tested for thyroid antibodies and they were high he never told me that I had Hashimoto's Thyroiditis. I had to look it up and then question him the next time. I saw another endocrinologist who told me that I was great because my TSH had dropped to below 4 while on levothyroxine and that my symptoms of brain fog, constipation, coldness, water retention must be from something else. I am seeing a DO now who recognized that there is something still wrong and actually listens. There are some good doctors out there such as your small town doctor. They are just so hard to find.0
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Sigh0
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So true...it's like if death is imminent or your weight gain isn't 100+ lbs, then everything is "fine". So frustrating.0
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I told my endo I'd like to try NDT and he nearly shouted at me, "Absolutely not! All my patients who have had cancer take Synthroid because it keeps the cancer from coming back." Uhhh...excuse me? It's a hormone replacement drug, not a miracle cure.0
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Deepest Sympathy. Banging Head against a brick wall, yet again. We are supposed to be deferential. We are directed by our own health. We are not permitted to know how we feel. They are directed by budgets and other imperfect numbers. When will we be treated as the intelligent adults we are. We read and learn. When will they try or be permitted to keep up with recent research/ findings and apply generously.
Allergic - are you having any input for the node? I hope your personal doctor has ideas.
Wishing you well. I hope the blood tests reveal your free t3 and if this is still low you will have your t4 increased to give your body something to work with. I know here in Europe we are not permitted t3 supplement nor, heaven forbid we contemplate asking for the Natural.
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@Fuzzipeg - basically wait and see, check every 6 months.0
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Sometimes you just have to literally tell the doctor what to do....0
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Unfortunately with the majority of endocrinologist being allopaths, very few take a holistic view and only want to treat the symptom. Very rarely do they have the time to properly diagnose the root cause and thanks to the sheer volume of knowledge out there this often requires a team of specialists.
I've found that bringing in data helps, especially from peer reviewed studies or journal articles.
Also critical that when you find a great health care provider you hang on to them as if your life depends on it, because it may at some point.0 -
"Test drive" endocrinologists until you find one who'll listen to you. And it's so important to educate yourself and advocate for yourself.
Many doctors refuse to prescribe Cytomel or Armour, and/or adjust dosages based only on levels, rather than levels + symptoms. So frustrating!0 -
Here in Europe we are in systems which define the endo's we can access. Many of us do not have personal funds to access to private/Holistic services, availability is another issue. Any who do branch out are vilified by general medicine. Some of the best have passed.
When the greater world is indicating Hashimoto's thyroiditis responds to t3 because most Hashi patients have problems of conversion which are not investigated by dictate. T3 as a treatment in itself, or perhaps for some in combination is considered dangerous. Here asking for a trial on t3 is laughed at in equal measure to asking for a trial on natural thyroid product. For our endo's, "Numbers are king, and why bother about antibodies they do they matter, your thyroid will be dead before long anyway!" totally unsatisfactory.
Frustrating does not begin to cover it.0 -
Here in Europe we are in systems which define the endo's we can access. Many of us do not have personal funds to access to private/Holistic services, availability is another issue. Any who do branch out are vilified by general medicine. Some of the best have passed.
When the greater world is indicating Hashimoto's thyroiditis responds to t3 because most Hashi patients have problems of conversion which are not investigated by dictate. T3 as a treatment in itself, or perhaps for some in combination is considered dangerous. Here asking for a trial on t3 is laughed at in equal measure to asking for a trial on natural thyroid product. For our endo's, "Numbers are king, and why bother about antibodies they do they matter, your thyroid will be dead before long anyway!" totally unsatisfactory.
Frustrating does not begin to cover it.
One of my best friends and colleagues practices in Glasgow, but as he is connected with Doctors Without Borders he conducts a lot of business with his patients on holiday and is able to skirt the law and treat more patients this way. Evidently there's an ability to continue treatment as long as it was initiated outside the country? Very strange. Unfortunate how the best intentions often do not consider the ramifications.0 -
CSAR. Thank you.
Yes, if someone comes into the country on medication that script is maintained.
If I could do one thing, it would be to put Allergicto, in contact with your contacts. I really feel for her.0 -
What is NDT?0
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Natural Desiccated Thyroid (NDT)SkinnyKerinny wrote: »What is NDT?
Thyroid Armour is an NDT derivative, whereas levothyroxine (Synthroid) is synthetic.0 -
Hi sKerinny. NDT, natural desiccated thyroid. This was the treatment of choice for hypothyroid symptoms way back when before the numbers game was started. When doctors probably listened more and had less academic knowledge to ignore. (Please pardon my cynicism). It comes under several different brand names like Amour, however it is spelled, other brands are available.
It is processed from animals principally pigs, I have seen references to cattle but not convinced of that one. NDT is treated with suspicion by general medicine. Those doctors who are from a holistic persuasion are more than happy to prescribe it usually in the US etc, Europe is restrictive. This should be one of the options to ensure the best treatment for the patient. I see a hobby horse. sorry.
I noticed you have adrenal issues when you wrote elsewhere else on here. Quite a few of us possibly have as well. Like many we are clutching at straws trying to find our personal underlying problems. All information which may help in this process is welcomed at this table.
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SkinnyKerinny wrote: »What is NDT?
There are three treatment options for hypothyroidism:
1. synthetic T4, or
2. synthetic T4 + synthetic T3, or
3. desiccated pig (or pig + cow) thyroid glands.
NDT is another name for option 3 (natural desiccated thyroid). Brand names include Armour, NP Thyroid (Acella), Naturethroid, and WP Thyroid (Westhroid).
Most doctors prefer option 1, levothyroxine. Brand names include Synthroid, Levothroid, Tirosint, Unithroid, Novothyrox, and Levoxyl.
Option 2 is levothyroxine plus liothyronine. Brand names include Cytomel and Triostat.
It takes trial and error to find which of these works best for you. A good doctor will adjust your dosage based on both blood tests and symptoms.0 -
The big difference between the synthetics and NDT is that NDT contains all the thyroid hormones -- T1-T4. So, with just NDT, you're getting your T3 in addition to your T4 without having to take another pill like cytomel (T3 synthetic). They don't know what T1 and T2 do -- they believe them to be inert right now. But, some docs (mine included) think that it's possible that they provide some benefit that we just don't know about yet as my doc Hashi's patients tend to do better on NDT than the synthetics. He freely admits that he can't explain why, but it's what he's observed in this practice.
20+ years ago, NDT was frowned upon because its formulation wasn't as precise -- some docs worried that you weren't getting consistent dosages per pill. But, it's regulated by the FDA now just like the synthetics are (it's not a "supplement" but a medication), so the precision of its formulation falls within those standards now. So, it's no longer a problem.
I personally don't know why so many docs prefer the synthetics. I think that's what they're often told in medical school/early training, and they are loathe to waiver from it. I strongly suspect its a brilliant marketing campaign by the synthetics manufacturers to doctors (Synthroid in particular) -- just like how certain companies try to get their products into schools so kids grow up with them and they're familiar to buy as adults -- whether it's Coke with free sodas or Apple with free computers. I personally think that ANY kickbacks to doctors for/from pharmaceuticals should be illegal. Talk about a conflict of interest!0 -
lindsey1979 wrote: »
20+ years ago, NDT was frowned upon because its formulation wasn't as precise -- some docs worried that you weren't getting consistent dosages per pill. But, it's regulated by the FDA now just like the synthetics are (it's not a "supplement" but a medication), so the precision of its formulation falls within those standards now. So, it's no longer a problem.
I personally don't know why so many docs prefer the synthetics. I think that's what they're often told in medical school/early training, and they are loathe to waiver from it. I strongly suspect its a brilliant marketing campaign by the synthetics manufacturers to doctors (Synthroid in particular) -- just like how certain companies try to get their products into schools so kids grow up with them and they're familiar to buy as adults -- whether it's Coke with free sodas or Apple with free computers. I personally think that ANY kickbacks to doctors for/from pharmaceuticals should be illegal. Talk about a conflict of interest!
This is largely due to the nature of allopathic (MD) training and fear of litigation. Identify the symptoms, root cause, and base your treatment on the symptom (root cause analysis). In thyroid issues, previously the only reliable indicator was TSH level and treating other variables, such as T3, opens up the possibility of doing harm. So if there's no indication of T3 insufficiency, the focus is on T4.
Holistic practitioners (DO) are trained to treat the patient and will attempt to get an understanding of all the variables before attempting to identify a treatment regimen. Even so they will opt for the regimen with lesser risk.
The other issue is the nature of the regulatory approval process and the clinical studies involved. Doctors will always move towards the product with a lower risk adverse event profile. NDT simply has more variables and greater risk, thus levothyroxine becomes a more desirable product to prescribe.
Any form of compensation from pharmaceutical companies is currently illegal.0 -
Listening to a thyroid patient and adjusting her (we're mostly women) NDT dosage based on symptoms as well as on levels takes way more time than testing TSH & T4 and prescribing Synthroid.
My endocrinologist treats me like crap. When I complain of fatigue, he says I have an unreasonable expectation of how well I should feel at my age. My T3 was super low, but it took me a year & a half to persuade him to prescribe Cytomel. (Yes, I'm looking for a new endo, but it's complicated.)
When I first asked about Cytomel, he asked, "who have you been talking to?!" If I hadn't read about Cytomel and Armour here in this group, I would've thought Synthroid was the only option.0 -
"he says I have an unreasonable expectation of how well I should feel at my age". Nice. I was told that "low T3 must be my natural level that my body gravitates to" :-) True gems of wisdom!0
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There's nothing unreasonable about your expectations. The problem comes from others unreasonable expectations of what should be tolerated or tolerable for another person. Dare I say, particularly when this person is female. (had the same said to me aged 38)
Before the assumption can be made that low t3 is natural level for someone, surely there would have been no benefit from adding t3 support building to a substantial level? Naturally there was this solid foundation on which he was able to base this sweeping assertion.0 -
allergictodiets wrote: »"he says I have an unreasonable expectation of how well I should feel at my age". Nice. I was told that "low T3 must be my natural level that my body gravitates to" :-) True gems of wisdom!
Takes the wind out of your sails when you realize how little most medical practitioners know about medicine.0 -
lindsey1979 wrote: »
20+ years ago, NDT was frowned upon because its formulation wasn't as precise -- some docs worried that you weren't getting consistent dosages per pill. But, it's regulated by the FDA now just like the synthetics are (it's not a "supplement" but a medication), so the precision of its formulation falls within those standards now. So, it's no longer a problem.
I personally don't know why so many docs prefer the synthetics. I think that's what they're often told in medical school/early training, and they are loathe to waiver from it. I strongly suspect its a brilliant marketing campaign by the synthetics manufacturers to doctors (Synthroid in particular) -- just like how certain companies try to get their products into schools so kids grow up with them and they're familiar to buy as adults -- whether it's Coke with free sodas or Apple with free computers. I personally think that ANY kickbacks to doctors for/from pharmaceuticals should be illegal. Talk about a conflict of interest!
This is largely due to the nature of allopathic (MD) training and fear of litigation. Identify the symptoms, root cause, and base your treatment on the symptom (root cause analysis). In thyroid issues, previously the only reliable indicator was TSH level and treating other variables, such as T3, opens up the possibility of doing harm. So if there's no indication of T3 insufficiency, the focus is on T4.
Holistic practitioners (DO) are trained to treat the patient and will attempt to get an understanding of all the variables before attempting to identify a treatment regimen. Even so they will opt for the regimen with lesser risk.
The other issue is the nature of the regulatory approval process and the clinical studies involved. Doctors will always move towards the product with a lower risk adverse event profile. NDT simply has more variables and greater risk, thus levothyroxine becomes a more desirable product to prescribe.
Any form of compensation from pharmaceutical companies is currently illegal.
Compensation may technically be illegal, but if you know any docs, pharmaceutical reps and/or medical device sales folks, they know exactly what they can do to that skirts the line. And it's been going on for a very, very long time. There is a reason the pharmaceutical and medical device sales is one of the most profitable sales positions for recent grads.0 -
lindsey1979 wrote: »lindsey1979 wrote: »
20+ years ago, NDT was frowned upon because its formulation wasn't as precise -- some docs worried that you weren't getting consistent dosages per pill. But, it's regulated by the FDA now just like the synthetics are (it's not a "supplement" but a medication), so the precision of its formulation falls within those standards now. So, it's no longer a problem.
I personally don't know why so many docs prefer the synthetics. I think that's what they're often told in medical school/early training, and they are loathe to waiver from it. I strongly suspect its a brilliant marketing campaign by the synthetics manufacturers to doctors (Synthroid in particular) -- just like how certain companies try to get their products into schools so kids grow up with them and they're familiar to buy as adults -- whether it's Coke with free sodas or Apple with free computers. I personally think that ANY kickbacks to doctors for/from pharmaceuticals should be illegal. Talk about a conflict of interest!
This is largely due to the nature of allopathic (MD) training and fear of litigation. Identify the symptoms, root cause, and base your treatment on the symptom (root cause analysis). In thyroid issues, previously the only reliable indicator was TSH level and treating other variables, such as T3, opens up the possibility of doing harm. So if there's no indication of T3 insufficiency, the focus is on T4.
Holistic practitioners (DO) are trained to treat the patient and will attempt to get an understanding of all the variables before attempting to identify a treatment regimen. Even so they will opt for the regimen with lesser risk.
The other issue is the nature of the regulatory approval process and the clinical studies involved. Doctors will always move towards the product with a lower risk adverse event profile. NDT simply has more variables and greater risk, thus levothyroxine becomes a more desirable product to prescribe.
Any form of compensation from pharmaceutical companies is currently illegal.
Compensation may technically be illegal, but if you know any docs, pharmaceutical reps and/or medical device sales folks, they know exactly what they can do to that skirts the line. And it's been going on for a very, very long time. There is a reason the pharmaceutical and medical device sales is one of the most profitable sales positions for recent grads.
This used to be the case, but not in the last seven years. If they are doing it, they are doing so illegally. You cannot compensate with anything of marketable value.0 -
Sometimes in my deepest darkest thyroid hour, I wish all the endo docs to have their own thyroid fail and for them to be stumbling around in the medical world dealing with the same smartaleck phrases their endo colleagues toss their way.
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I'm so glad I joined this group. I can read each post, agree with almost each one and not feel so alone. That in itself is a comfort.0
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I would like to add a 4th approach to hypo treatment, Reading the book, Recovering with T3, by Paul Robinson, first published 2011, with a forward by Dr John C Lowe, ISBN 978-09570993-1-9, he puts forward t3 only treatment as a possibility for those who do not respond well to any of the other available treatments. NDT does not suit everyone. Supplementation with t3 even in combination is seen as dangerous by many medics, they fear the patient is looking to go hyper. (as if this would be a benefit) This Brit eventually managed to find medical support for t3 only treatment after many false starts on the other approaches with less enlightened professionals, he is now well in control of his Hashimoto's, he takes us through his experiences emphasizing the need to proceed with contortion.0
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Oh OK thanks for answering my question!!! I believe the Canadian brand, Erfa, is NDT which I was taking until I ran out.
I'm really disheartened by the NPs I've seen because none of know much about hypo. The last one would order labwork and then reorder the same tests 2weeks later "let's try it now because before you weren't taking X" I can't afford shenanigans like that.
I found two things that Im hopeful about-- a place where I can order my own lab work and a pretty high dose thyroid glandular supplement.
I think I will be a much better doctor than the 3 NPs I wasted thousands on for very little result. I'm crossing my fingers about that supplement. It would be so awesome if it works.0 -
I've been on the same 100 mcg of levothyroxine for several years and my TSH has fluctuated from 3.5 to 2.1. I went in today to suggest raising my mcg because I can't seem to lose weight lately- or if I do it's like 1 pound every 3-4 weeks. Since I have tightened up logging, weigh everything, etc, etc, logic would tell you that maybe I should try to up my meds to bring my TSH down a bit. But no, my nurse practitioner said that because I was at a therapeutic level (2.1 in May) that she would not up my dosage and that maybe I just didn't need to lose more weight. I really felt judged- like she thought I was being vain, etc. Yeah maybe I am at the high end of a healthy weight for me, but really, why does it matter if I want to lose 10-15 more pounds? Why does she ask me- well how much more weight do you want to lose? Why does that matter- the point is if I'm eating 1300-1400 calories per day (more if I exercise a lot that day), I should be able to drop at least a half a pound a week. I get that she doesn't want me going into hyperthyroid mode, but still- what I weigh is my business unless I am underweight and putting myself at risk. When I told her I thought I should weigh 125-130- she said "and you probably weighed that when you were 18." NO ma'am I weighed 117 when I was 18- I think 125 is a reasonable weight for a 48 year old small frame, 5'4" woman.
And those levels should be just a guide- and then tailored to the individual. Just venting- Grrrrrr. Anyone have any thoughts on how to just help my weight loss along? I was losing fine- 5 pounds a month at first and then of course the closer I get the slower it is, which is fine, but it's kind of getting ridiculous and frustrating
I think I may try to just take my meds before bed instead of first thing in the morning- anyone have better luck with this?0 -
dramaqueen45 wrote: »I think 125 is a reasonable weight for a 48 year old small frame, 5'4" woman.
I'm 47 and 5'2" with small bones, and it's taken me a year to get from 125 to 117.0
This discussion has been closed.