Thanks so much for the info Audrey that is very interesting about the iodine def. I just have to find a doctor that knows what they are dealing with and get on the right track with the test that need to be done and how often. Are you telling me that Thyroid test can be one thing one day and normal another. Is this why maybe mine is being misdiagnoised? Does the Endoctrine system change and flucuate. I know how blood sugars work but nothing else. Today was about the 3rd or 4th time I have had this happen to me. I get severe pain as if it is bad indigestion in the chest area and My right nerve in my jaw starts to hurt and I feel sick to my stomach. It scared me so bad the first time it happened I went to my doctor and he sent me for a stress test for my heart. Everything there checked out. I just wonder if something in my system is dangerously low triggering these attacks. It is so scary. Thank you for listening and ALL the info you give.
This is the first time i have posted on this website. I notice most people posting live on the other side to the world to me, i live in sydney australia, yes i find myself nodding along to this. I have Coeliac disease. I was sick and severly anemic for 3 years and my doctor refused to test me for anything and told my mother that i was just a typical kid trying to get out of school. He suggested anti depressants to get me out of bed. My mum yelled and yelled that i was really sick and finally he tested me for coeliac disease. My levels were terrible and i was given an emergency endoscopy and put on a gluten free diet. I only got sicker developing chronic fatigue and spending 3 months asleep. My specialist then asked how my lactose intolerance was going having come up in tests, something they forgot to mention. When i complained of still being always unwell no one was concerned saying again to my mother that i must be cheating on the diet. I have never in my life cheated the diet, i am afraid of being sick. 5 years later after several changes in GP i found a doctor who believed i was sick and not a typical teenager. She tested me for related diseases to coeliac disease, and got all my blood results for last 8 years and looked through them. She discovered my iron dropped significantly every year. No one undersands why. I become very ill on tablets so i was given iron injections which didnt help my levels at all but left a very painful tatoo on me. The IV iron had me unable to breathe, with my heart racing and admitted to emergency. No one at the hospital however informed my specialist i was in hospital unable to breathe. Im not keen to repeat the process yet no doctor can tell me why i can not absorb iron when my villi appear repaired and i have no internal bleeding. Then They discovered i had SLE lupus and thyroid disease, SLE has caused me terible arthritis in my joints and the medication causes weight gain and bad sun rashes. I am 19 and it appears the early years of my life eating this GLUTEN has given me so many diseases and health problems. I want to have energy. I want to have iron in my body and understand why i dont.. and i want to be a normal 19yr old who isnt always sick. Gluten and Anemia are totally not cool. But its just amazing how over the other side of the world people have to same extreme problems with diagnosis and GPs and how everywhere gluten is making people so sick.
robin63 - the endocrine system is changable. I recently had my dad do a bunch of tests and i forced his doctor to do the entire thyroid panel (TSH, T4, T3 and thyroid antibodies). His doctor agreed to do ALL the tests i had noted in my letter to him. In the end he only did a select few. I then had to force him to do the rest and he ended up doubling up on some of the thyroid tests.
In the first bunch of tests, my dad's TSH was elevated. 3 weeks later it was so low that the lab even highlighted this. The lab also highlighted my dad's T4 and T3, which were high. Something must be going on for his TSH to plummet in the space of 3 weeks. When we have a thyroid test, we might only have one a year or one test every few years, especially if a doctor tells us our results are fine. It was only that the doctor made a mistake so my dad got tested twice in 3 weeks. In a way this is fortunate as it gives an indication that the thyroid hormones can be very volatile if something is going on. So to answer your question i'd say 'yes' the endocrine system can be volatile, but i'd say that's only when something is going on.
My thyroid doctor believes that other issues can affect the thyroid also, like ferretin and vitamin D and insufficient iodine levels. I've got my dad on some supplements which i hope will correct a number of things, then i'll order blood testing again. Even though his doctor believes his thyroid to be fine, i'll be keeping an eye on things "just in case" as i know his doctor will simply dismiss things.
This is why it's so important to learn things and not leave it all up to your doctor. I used to think a thyroid test comprise of TSH, then on these healthboards i learnt which tests to demand. A lot of the things i learnt off here led me to one good doctor, who diagnosed my thyroid and he then referred me to my current doctor. It's not worth leaving it all up to your gp or even a specialist as they can get it wrong more than we realise.
Jazzabella - hi and welcome to the boards I too am in Sydney, Australia. There are lots of people from all over the world on these boards, which is great, as it helps to share our knowledge as well as support each other with our various health issues.
Isn't it a shame that so many of us had to take years to get to where we are today. it shouldn't need to take years to get a doctor to believe you or to want to help you.
Gluten and lactose intolerances are such a big problem and a lot of people are totally unaware. I think so many things affect our digestion, from lack of certain vitamins to foods which cause negative reactions within us. Even with the thyroid i learnt that there are thyroid receptors in the stomach. It seems the more you learn the more complex it gets and at the end of the day it could be any number of things which cause malabsorption of nutrients which then leads to other things going wrong and a whole bunch of new symptoms.
You are fortunate your mother stood up to the doctors and believed in you and the fact that there was something wrong. I can imagine how it would get you down, not being believed by a doctor and then when you do finally get diagnosed, you end up with long standing symptoms of a condition which wasn't treated when it ought to have been. That's why i often wonder if i ended up with so many issues due to not being medicated in 2000 for my thyroid, instead of 8 years too late.
Now that you have found these boards, i hope you find a lot more answers to help you get much better in the future
... She discovered my iron dropped significantly every year. No one undersands why. .... Then They discovered i had SLE lupus and thyroid disease, SLE has caused me terible arthritis in my joints and the medication causes weight gain and bad sun rashes. I am 19 and it appears the early years of my life eating this GLUTEN has given me so many diseases and health problems. ....
Jazzabella,
These are symptoms/conditions that often accompany people infected witht the organism Borellia burgdorfei or gernii, which is now thought to be common on the Eastern seaboard of Australia! I would suggest that a number of posters on this board are from Down Under and are experiencing symptoms caused by this disease...anemia, celiac disease, arthritis, thryoid problems, Lupus, ALS, MS, bowel problems, yeast infections, and etc. Some doctors think that 1/2 of all chronic disease is caused by these Borellia burgdorfei and/or its coinfections.
Australian government websites (like US government websites) are often outdated, and can perpetuate myths and misconceptions…please keep in mind the following BEFORE you read the Australian government link at the bottom of the page:
1. Although these infections can be transmitted by at least 5 different kinds of ticks, flies, fleas, and other insects can transmit them as well.
2. These infections can be transmitted in the womb so babies can be born intected.
3. Some think these infections can be transmitted sexually.
4. Theoretically, it is possible to get these infections via a blood transfusion, although this has not been proven.
5. Although a bull seye rash is a definitive sign of infection, most people do not remember getting one.
6. Just because you didn’t get a rash or don’t remember a rash, doesn’t mean you haven’t been infected.
7. Lyme and it’s coinfections have been known to lay dormant for over 10 years, making the connection to the initial symptoms and the chronic symptoms difficult.
8. Antibiotic treatment (especially Doxycycline as it is used to treat Lyme) can bring about a massive Herxheimer reaction, which means that symptoms may get worse or change with antibiotic treatment. This means the antibiotic is working!
9. Steroids may temporarily ease the symptoms, but the symptoms may change or get worse after steroid treatment because steroids suppress the body's immune system and an active immune system is needed to fight a bacterial infection.
I have included the following Australian Government Website. Please keep in mind that it contains some info that is thought to be incorrect or misleading, but at least it’s a place to start…
Audrey, That is very interesting to know. How do you convince the doctors to repeat the test so often? It would really be great if they came up with a system like checking your thyroid levels like you can blood sugars. If you could check it often we would know how it changes. I know I have alot of the symptoms that point to Thyroid but my bloodwork makes me look like nothing is wrong. And maybe its not. I just know my symptoms are very real. Thank you so much for all of you help and info.
As for the information on Borellia burgdorfei or gernii, i had actually discovered that during my own research and contacted my doctor when i discovered it. She thought that could be the cause and we went through a bunch of tests and research and she said that she could rule it out, and that it was very clearly not the cause of my iron deficiency. But it did seem to fit for awhile and was almost unfortunate to be an unsuccessful outcome.
So i guess every condition is different, and unfortunately i seem to fit no profile! Very frustrating
Thanks for the welcomes into the group, it is so interesting to read so much information about conditions no one around me understand!
...As for the information on Borellia burgdorfei or gernii, i had actually discovered that during my own research and contacted my doctor when i discovered it. She thought that could be the cause and we went through a bunch of tests and research and she said that she could rule it out, and that it was very clearly not the cause of my iron deficiency. ....
Wow, you must have a dynamo doc, but I'm not surprised as she is a woman,
I wouldn't rule Lyme out just yet...from what I understand it is one of the most complex organisms of its type known and that there are several hundred strains (which is just one of many reasons it is difficult to test for). The strains vary depending on what area of the world one lives in.
On what basis, may I ask, does she say it is clearly not causing your anemia?
Have you and your doctor considered contacting Igenex Labs to see what they might recommend?
Again, I just wouldn't rule it out, there's just too much at stake.
Thanks for your response and welcome to the boards,
robin63 - i have to get checked so regularly as i only began thyroid meds in may 2008. They start you off on a very low dose as they don't know how you will respond to it and this is why the tests are done so regularly. If they were to put you on one dosage of meds you could go from being hypo thyroid to hyper which would bring on a whole set of new issues.
Once i get to where he wants me to be he'll put me on a particular dosage and i wont have to have such regular tests.
In your case, having the symptoms, but being told the blood work is ok, is quite a regular occurance. This is why it took me 8 years as not many doctors will medicate unless your TSH gets into "extreme" levels, when at the end of the day it's not solely the TSH they should be looking at, but your other thyroid hormones. They should also be checking whether you have thyroid antibodies, which would mean you have an autoimmune disease, not just a condition.
You can see just how many disgruntled people are over on the thyroid board with doctors pronouncing them healthy, when clearly they aren't, or simply pushing them onto antidepressants, when they don't need them. A lot of the people on the thyroid board went years without being medicated until they found a good doctor who looks outside the "square" and once they began treatment all/majority of their symptoms went away.
Thanks for the info, I will look into it further.
My GP is Great!! She's my 6th GP and we finally found someone who does everything in her power to solve problems and then last week she moved to America.
Once again I am Without GP so i now need to find someone else. I have quite the team of specialists, some good, some not so that i ask for advice too, so i shall look into it and talk to them and let you know if anything comes out of it
...
My GP is Great!! She's my 6th GP and we finally found someone who does everything in her power to solve problems and then last week she moved to America.
Oh, how very frustrating to say the least! And yes, it does take some time, and trial and error to find a good one. I always thought I had a "good" one until I had blood pressure issues, and all of the med side effects that come with that.
The medical community in the US acknowledges that we have a Lyme epidemic along the coastal areas in the NE (there is some thought that Lyme carriers fall off of migratory birds), and in some parts of the midwest...they also have documented cases of this disease in all 50 states in our union. Despite this, some of the best clinics/specialists in our country have the worst reputation for diagnosing and/or treating this disease.
You live in a country that is still denying a problem even though evidence of Lyme exists there...keep that in mind when picking the brains of your medical team...if you can, do some independent research as it helps to go "armed" with sources of data to back up your case, should you think you have one.
jazzabella - did you know your gp was moving to America? sometimes one good doctor knows another good doctor and can refer someone else equally as good. I'm sure you have learnt a lot so as to enable you to weed out the bad gp's.
I couldn't find a good gp or specialist. I had a range of symptoms but my main one which bothered me was abnormal hair shedding. I found myself a Trichologist after doing loads of research. My research and new found knowledge helped me pick what i felt was a good one, and he was. He knew more than all the gp's put together and diagnosed my problems.
jazzabella - did you know your gp was moving to America? sometimes one good doctor knows another good doctor and can refer someone else equally as good. ...
An excellent suggestion, which I am going to use, by the way.
I too am in Sydney, Australia. There are lots of people from all over the world on these boards, which is great, as it helps to share our knowledge as well as support each other with our various health issues.
