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October 20, 2013 at 2:12 pm #1942
I am based in the UK and hypothyroid. My symptoms are better than they were but having real problems with weight, brain fog as well as several lesser symptoms. Despite being extremely active, eating well and taking my medication I could get no relief from my symptoms. I took the test to see if my Gene DI02 was faulty and it is. I understand that this means that I do not convert T4 to T3 well. I thought from all that I had read that this was the problem and am now trying to find out how to get the best from test results. My hypothyroidism is autoimmune and I understand that the presence of antibodies in my blood due to this may cause my blood test results to be unreliable. I also understand that the fact that I have this faulty gene means th at my blood test results will not reflect the true levels of hormone in my blood. I suppose what I am asking is what test can I take or is there a test that I can take that will give me a true picture of my blood serum levels taking into account the autoimmune antibodies along with the faulty gene. Or is it just a case of seeing how the treatment goes. I am currently on 100mcg of Levothyroxine and feel that it is a little high. Every time the dose is increased I experience a short lived boost and then it seems to plateau and I am back to square one. This would tie in with the T4 not converting to T3. As a result of the gene test I have almost persuaded my Dr to add in some t3 to my t4. The information on this website has been invaluable particularly the weight gain and insulin resistance and the whole topic. I would appreciate any guidance that you could give.October 20, 2013 at 6:38 pm #1949
The science behind genetic polymorphism is relatively old for serious thyroid scholars, however, it may still be news 30 years from now for the clinical practitioner.
If I lived in the UK I would certainly try https://en.wikipedia.org/wiki/Pharmacy2U these guys to get what I need.November 5, 2013 at 11:44 am #1969
Went to my GP with the gene test results and still no real response. Don’t think that they are taking me really seriously. And I am at home eating chocolate biscuits all day instead of exercising like mad and eating a sound healthy diet. Logging all of my food and exercise. He has been testing my cortisol levels and has arranged for CT scan of my head. Next after that is a head doctor. They seem to want to try and prove that either it is something that I am making up or that is anything else but something that might require t3 to get me better. I had a slight reaction when my Thyroxine was increased from 100mcg to 150 mcg. He increased it to see if it would kick start my metabolism. It did’t and it wasn’t a good feeling and I went back to 100mcg.He says that he is worried about giving me T3 in case I have the same reaction but my understanding is that the t4 should be decreased when t3 is added. I can see that people are having the same problems all over the world. I have had the DI02 test which was positive .That really should be enough for a Doctor who wants to get their patient better to prescribe the right medication. I can’t really afford to see a Doctor privately but could possibly get some blood tests done. If the genetic problem along with the autoimmune antibodies corrupt the blood test results I am not really sure what tests to get done. My Doctor did a test for Cortisol levels and I took one dose of Dexamethasone. This made me feel normal for at least a week. This has the doctor even more confused and I am not sure what to do next. Has anybody else had experience of this.November 5, 2013 at 6:40 pm #1970
Has anybody else had experience of this.
The fact that T4-monotherapy is ineffective in at least 20% of athyreotic patients may be news to most docs, for reasons you have measured in your own genes, but it may be a total shock to these pill-dispensers who are trained not to think (critically).
Medical practice guidelines may mostly be influenced by authority, not facts, and tend not to change, ever.
If you have read enough to know about genetic polymorphisms, which you doc seems to not have grasped, you would also know this; there are only a few treatment options available for athyreotic people; synthetics or natural. I used synthetics, T4 + T3 for may years, then switched to the natural hormone replacement. I’m quiet happy with this, and should have done so much earlier. T4 alone was a disaster.
If the GP is not taking you seriously, neither will most “specialists”. See fist item on the left top of this page.
Blood test for this may not be the answer, second item one the top left. The intracellular process is not measured in the blood, but don’t try to tell you doc this, he knows “better”.
Don’t try to enlighten your docs, it won’t work unless they are medical students and you are the professor.
Why don’t you ask for the natural thyroid hormone replacement, there are a few brands, Armour the most well known (I use ERFA), from the UK source I posted? Unless you get this, you will be banging your head against the wall til the cows come home.
Suppose you tried the natural stuff, and you problems disappeared, you like most will never be heard from again.November 23, 2013 at 12:18 pm #1987
Have been trying to get my Doctor to prescribe T3 but he is running all of the tests he can first. So with a view to helping myself and to try and persuade him I am looking at getting a private test done. I did have a cortisol test at the hospital and the endo wrote to me to say that my cortisol levels are normal and my thyroid blood tests look perfect. This does not bode well for my appointment that is due in a couple of weeks. The genetic problem that I have means that blood tests do not show the actual levels in my system. I have also read the information that you have on this website relating to what is happening at a cellular level rather than serum levels. I have found a testing company that has a urine test that will test t3/t4 levels and show what is happening at a cellular level. I can’t find any other tests in the UK yet that will test anything else ie RT3/TSH other than through a blood test. Will the T3/T4 urine test be enough to show me what is happening in my system. I am also beginning to wonder if there is any point in me taking t4 at all if I don’t convert it effectively. I wonder if I would just be better off taking t3 but will need to do more research into that. You are correct in a reply that you posted earlier. I think that we are decades behind in this country. Once again any help or guidance is greatly appreciated.November 23, 2013 at 8:54 pm #1988
I don’t understand why you are trying to get useless test done by people who don’t grasp the concept? The “problem” may not show up in your blood. Full stop.
I posted a link to an article http://nahypothyroidism.org/topic/sub-laboratory-hypothyroidism-and-the-empirical-use-of-armour-thyroid/
You can get this stuff from the pharmacy link above.
“I think that we are decades behind in this country.” …and most every country.
I was using T3 for ~ 12 years in addition to T4, but I could not tolerate it well.
You do need T4, your conversion may not be sufficient, but it will do some good.
The healthy thyroid produces more than a single hormone, this is provided with the natural stuff, thats been around for 100 years.
Medication by testing woks poorly for thyroid. While a gross error can be spotted the inverse is not true.
What passes for medical “science” is mostly empirical, and there are many genetic heterogenicies that are too complicated for the average practitioner to deal with, so they resort to “standard” practices, keeps them legally safe, and you will continue to scratch your head, and suffer.
The hesitation to prescribe T3 is not uncommon, there is a myth around those circles that this natural hormone the the equivalent to products from the poppy-plant and to Bolivian marching powder. In the US people need to stay sick to create customers for the medicos, in the UK I don’t know what holding them back. I’m guessing an over-authoritarian medical society populated by octogenarians who haven’t read a research paper since the last Humphrey Bogart movie.December 10, 2013 at 5:48 pm #2008
Was you genetic test for DIO2 the SNP rs225014 ?December 12, 2013 at 5:44 am #2012
Yes I checked the abstract this morning. I can try and send you a link if you would like me to. I inherited it from just one parent.
I know that you are not an advocate of testing but I wanted to try and see what was happening at a cellular level so took a 24 hour T3/T4 urine test. I have the results back today and am not really sure what to make of them. I was expecting that the t3 would be low and t4 high instead I have a T3:T4 ratio of 7.9. My T3 is 910pmol(range592-1850) and my freet4 low at 115pmol(Range347-1994). So am totally confused now. I have my first Endo appointment tomorrow and am now trying to make sense of this.
I had to stop taking my thyroxine as it was making me ill. I have felt a lot better since but not sure where I go from here. Trying to get t3 prescribed in the UK is like trying to get blood out of a stone. I have sourced some however .
I had felt better when taking Dexamethasone for a cortisol suppression test. One little dose lasted me about a week then I came back to earth. I felt normal for one week it was great. I found some American research published that says this medicine suppresses TSh even at very low dose so can only assume that my body prefers a suppressed TSH. Although mine is low when last tested at 1.37.
This is like peeling an onion. Everytime you make some headway you find another layer.December 13, 2013 at 8:54 pm #2013
Thanks for checking in. I can understand the argument for getting a lab-test to invoke sympathy in those unsympathetic beasts. First and foremost those cats always want to be right, and be smarter. Rather than charging the hill, maybe you should go around it. Why not explore that pharmacy-link up ^ there and see how far that will take you?
Most people on the natural stuff, which I switched to a couple of years ago, are of the opinion that you feel best when TSH is suppressed. 1.37 is not low, at all, does not make you “euthyroid” like those superior minds like to think.
The TSH process has its own deiodenase, it is all up there on the left side.
I’m very excited to hear about your gene test.
The problem I have with the T3 and T4 circulating levels are they do not show tissue absorption. Hence, if the levels are low do you not get enough or is the stuff nicely absorbed? It has been discovered that thyroid hormone is not diffused in, unlike what the paper in the the Synthroid jar says, but pumped in via special receptor sites on the cell surface.
This is not glucose and insulin, the mainstay of these guys business.
Once these guys get a license to practice, it does not matter if science races past them, they are fine living in the past, and as good sports they do not want to embarrass older colleagues with new knowledge.
Live well and prosperDecember 15, 2013 at 4:03 am #2016
You are absolutely right. I think that you must have written the script for my appointment. I hadn’t slept well the 2 nights prior to it worrying about it and so didn’t have as much fight in me as usual. Anyway long story short I am not hypothyroid I have Chronic fatigue syndrome. I am converting as my tsh has come down over the last year. I don’t need to see him again and I don’t need to take thyroxine. Now I don’t want to be ill but if I wasn’t then why have they made me thyrotoxic by making me take a drug that I didn’t need for the last year! They don’t give a Castlemain 4xxxx about their patients and when you mention Octogenarians running the show who are ruling the roost you are also right. I don’t know why I bothered. Well actually I do. In the UK indirectly we pay for the NHS through our taxes. We pay to train the Doctors who don’t have to pay for their training themselves and then the Royal College of Practioners who are not answerable to anybody make policy on what GP’s can and can’t prescribe. Nice work if you can get it. They are supposed to be there when we need them. He said that the private tests are quackery and there for the companies to make money from people. Also that the DI02 test didn’t exist. News I am sure to the people who researched it including an emminent professor in on of our teaching hospitals in Wales that is well respected.
I am to stop using medical terms to define things like hypometabolism and metabolic syndrome and that in order to lose weight I have to eat less carbs. Another who wasn’t listening. I am currently celebrating that remark by cooking some veggie sausage rolls and I am going to follow that up with some home made mince pies. Just as a protest. Oh and follow it with fat free broth full of carby pulses as an extra protest. On top of all of this the gland on the right hand side of my face is swollen so all in all having a good 3-4 days. But I am still smiling.
I can’t get medication from that pharmacy as in the UK if a drug is branded as prescription only and we don’t have one then we can only purchase it from an online pharmacy from outside the UK. The Eu is ok. I have T3 that I purchased from Cyprus (tiromel)and I have some on the way from Mexico Cytomel I think. Throw in some Decadron from Canada and I am set to go.
It seems that we have a big probem worldwide with people not being diagnosed and treated properly. I am pretty certain that if Big Pharma started pushing T3 as the drug of choice they would make more money. In the UK Thyroxine costs around £2 for a months supply wheras T3 costs around £54.
So I think that you can see where I am going with this. Just hope all of the meds I purchased are ok. Difficult to tell from a website. I am going to spend a lot of time reading all of the stuff on the right that I hadn’t read already. I read a lot of it already.
Have a look at a website in the UK TPAuk.com. They have a petition before the Scottish Parliament and are hoping to change the way that thyroid disease is diagnosed and treated here in Scotland. Once they have done this then hopefully pressure will make them roll it out throughout the UK. If you know of anything that could be contributed to back up our case that would be great as well.
Thanks for all of your insights. And the strategic boot occasionally which was needed. Will let you know how I get on. I am going to wait a couple more weeks to let the thyroxine clear my system and then start again.
CarrotDecember 16, 2013 at 7:38 pm #2020
I am not hypothyroid I have Chronic fatigue syndrome
Chronic fatigue syndrome is an ill defined illness, that some have describes as a symptom of hypothyroidism. Mysteriously this “new” disease appeared after poor thyroid serum tests made their entrance.
I have had this too. Four years later I got Graves. This has been reported by others as well.
Paying in advance for a service and then hope to get it usually does not work well, for the receiving end. “Free Market” healthcare has serious problems too. Between complacency and greed we are stuck. I’ve read about that petition.
Can you get ERFA thyroid from Canada? T4 has a half-life of 4 -7 days.
It is usually quite obvious if you get too much thyroid hormone, and easy to slow it down. TSH won’t help you here.December 17, 2013 at 2:25 pm #2021
I don’t think that I have chronic fatigue syndrome. I do know people who have it and they are totally debilitated by it. So far I am not unless this is how it starts. The medicos diagnosed me as hypothyroid and we all know how reliable their diagnostic skills are. Not all are bad I know but you know the track record so far isn’t good.
Anyway I think that I am still recovering from the t4 overload. My heart rate and pulse are more or less normal now and my sleep patterns are returning to normal as well.
I do have the autoimmune antibodies so was wondering as well about the fluctuations from hypo to hyper as well. I did read about this and am thinking that at the moment I am in the middle of getting over the T4 overload and en-route somewhere else. I am monitoring my temperature and how I am feeling. I am going to give it another 3-4 weeks. I has been three so far off the mediation and see what happens. I have the T3 ready so if I take anything again it will be that first.
I think that I already said that I am a veggie so would look at taking erfa but only if in real need.
I really want to lose weight as well. I have been reading your info on that. I have been eating all the right things. Taking my supplements and no joy. I have a drastically reduced appetite off the Thyroxine. But again am assuming that the weight loss won’t happen until all the hormones etc are in sync so will work at that first.
This is a great resource for information. I have passed on the details to many other hypo people. All of us need to inform ourselves as nobody else is going to.
Lang may yer lum reek
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