Hi Mary jane, glad to hear at least your primary doctor is getting the link between your symptoms and Folic acid and B6, it is possible that it was a coincidence that your symptoms started at the same time as taking the supplements, but highly unlikely!! Although Epilepsy can be made worse with folic acid it does not explain all your other symptoms!
Glad you dont have diabetes thats one of the list.
Ema is right, a large number of endocrinologists are rubbish at diagnosing thyroid disorders, and they rely on using TSH, but use a reference range for it that is completely wrong that says above 5 means people have thyroid problems, modern research says that levels above 2.5 mean that people have thyroid problems. This modern research is explained in this article
http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
Because most endos are using the wrong reference range they also use the wrong amount of medication and believe that getting TSH just below 5 means the patient should be cured and are then baffled when the patient still has symptoms.
You say that your TSH is now 3.3 this is still too high and is not being treated properly, In his article Unveiling the mysteries of the thyroid found on this page
http://www.bmj.com/content/337/bmj.a801?tab=responses Dr Shirwan a Mirza (a up to date Endocrinologist) explains how to properly treat these kinds of thyroid issues, he says
In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH
by 2 digits. This simple math will allow you to have a rough estimate of
levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.
If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do
not waste your time on thyroid and look for other reasons for the
patient's symptoms.
Maybe your doctor could use Dr Mirzas treatment equation to get your TSH down to between 1-1.5 and see if this relieves your symptoms.
If you havent already had these done a thyroid antibodies test and urine iodine test may show some use full information.
Because your TSH results are high, not extremely low this rules out Graves disease which is another one of the list of conditions that react badly to Folic acid.
It is possible that the folic acid aggravated the thyroid problem and caused the seizures? as thyroid conditions can cause seizures.
There is however another condition that would explain your symptoms including seizures and your high TSH and reacts badly to folic acid, that endos are also generally rubbish at diagnosing, this is Addisons disease (adrenal insufficiency), This should be tested for soon, rather than just treating the thyroid just in case! Endos tend to rely on a morning cortisol tests to diagnose this, however a large number of people who have it, have cortisol in the normal range, information about it and how it should be properly diagnosed can be found here
http://elaine-moore.suite101.com/adrenalinsufficiency-a1543 Although an ACTH stimulation test is needed to diagnose it and these are normally only done by an endo, if your doctor is helpful, they can order the Cortisol, ACTH blood test and aldosterone tests that will show if the ACTH stimulation test is needed, but be aware that Hypothyroidism can lower cortisol results. Treating high TSH if Addisons is the cause will achieve nothing it is a symptom not a cause.
Regarding your vitamin D level, is the 35 level that you have achieved in nmol/L or ng/ml, different countries use different units of measurement if it is in nmol/L then your level is still very low, your doctor should be giving you large doses of it to get your levels up as quickly as possible so that you are free of any symptoms of it, this symptoms will also be clouding the diagnostic picture and make it harder to work out what is going on. I have put a lot of information about vitamin d in post #56 here if you want to take a look
http://forums.phoenixrising.me/show...-treat-national-health-shame-and-CFS-ME/page6
However Hypoparathyroidism must be ruled out first! By testing PTH and Calcium, blood phosphorus and magnesium should also be done. Information on it and how to diagnose it can be found here
http://www.mayoclinic.com/health/hypoparathyroidism/DS00952/DSECTION=tests-and-diagnosis
Hyopituitarism can react badly to folic acid, testing for this involves testing for all the hormones that the pituitary produces, which include things like ACTH which needs to be tested to rule out Addisons ,the tests for this are explained here
http://bestpractice.bmj.com/best-practice/monograph/521/diagnosis/step-by-step.html your doctor should be able to order these blood tests if they havent already been done.
The other illness that reacts badly to folic acid and can cause seizures is Myasthenia gravis, information on and testing for this can be found here
http://emedicine.medscape.com/article/1171206-workup
Regarding your iron levels, do you have results for Ferritin and Transferrin Saturation as well? If you have results for these tests it would help get a clearer picture of what is going on. Your blood serum level is within the normal range, if people have iron deficiency anaemia TIBC rises, yours is a bit low, so youre not iron deficient, there is a good graph here that explains what the test results may mean
http://labtestsonline.org/understanding/analytes/tibc/tab/test its hard to tell without the other tests what is going on so if you do have more results post them and I will see if I can make any sense of it, theres an interesting article here about iron and the thyroid,
http://www.stopthethyroidmadness.com/ferritin/
As I see it the most likely cause of your problems is a condition that has similar symptoms to yours reacts badly to folic acid and can cause seizures.
These are diabetes, which has been ruled out
Graves disease, ruled out
Addisons, dosent sound like this has been investigated so is possible espicaially with high TSH
Hypoparathyroidism has not been ruled out
Hypopituitarism, not ruled out and possible because of high TSH
Myasthenia gravis not ruled out
Thyroiditis, positive for high TSH, but other causes of high TSH like Addisons and Hypopituitarism have not been ruled out, if it is thyroditis, it is not been treated properly as TSH is still too high!
Good medicine is supposed to be done based on creating a list of diseases (known as a differential diagnosis) based on the patients symptoms, family history, test results and reactions to other substances taken, e.g in your case folic acid, this could be a vital clue to getting you a proper diagnosis.
This does not appear to be what has happened in your case, the doctors seem to have not done a complete differential diagnosis and except for one doctor have ignored your reaction to folic acid. Instead they have jumped to the most obvious conclusions that your seizures are caused by epilepsy despite normal EEGs and that your high TSH means you have hypothyroidism, without ruling out other possible causes of high TSH, and then have given you treatment for it which has not been enough to reduce your TSH to between 1-1.5, so we are left none the wiser if thyroditis is the cause of your problems because it hasn't been treated properly.
If your doctor will test for the above diseases that have similar symptoms to what you describe and react badly to folic acid, which should be done if proper medical practice is to be followed, chances are that they will find the correct diagnosis, but at the moment you do not appear to have had a proper investigation of all the possibilities. If it is none of the other diseases on this list, it is quite possible that what you are suffering from is badly treated Hypothyroidism because they have not got your TSH levels to between 1-1.5 and vitamin D deficiency, both of these things are easily fixed by someone who knows what they are doing, you may also have some kind of problem related to your iron levels but I cant really tell without knowing the other test results.
Hope this helps and your doctor will investigate these possibilities for you, if they wont get another doctor.
All the best
