Guest guest Posted March 17, 2012 Report Share Posted March 17, 2012 Hello, I'm a new to this site, I come from reading 's book (have to read it again as it is really comprehensive). I'm here because I may belong to those people who benefit from T3 only therapy. I would like to learn how to manage my thyroid disease in order to get healthy again. I have a long standing thyroid history. I was just preparing to start T3 ONLY MULTI DOSING therapy with the help of a US group, but when I saw a new nuclear physician two days ago, questions arose. I apologize for my lengthy report, but I don't know how otherwise give the picture. In the beginning of 2012 I found the first `program' doing T3 only multidosing and a group to assist as they say they already have experience with a lot of people. I joined and prepared to get ready for T3 only. At that time I still took T4 75/T3 15mcg (Novothyral), meantime I reduced to T4 25/T3 7mcg. The prearrangement included balance of adrenals, optimization of iron/ mineral status. Because I have symptoms of adrenal fatigue and as my 24-hr-cortisol saliva test was found to be very low they found it necessary that I take HC. I already was on a very small dose of Prednisolone since some weeks and on Feb 7 I began HC. When I augmented the dose to 27.5 mg I felt slightly better for the first time, temps got stable as they should, and rose a bit. My irons status wasn't too bad and as I'm supplementing with iron (180mg/day) I just got the " allowance " to start T3. The initial dose should be 6.25 mcg waking and bedtime. At the earliest, five days later, if things stay stable, a next dose 5 hrs after the first one. My average temp (three measurements/day) while taking HC 98.3 - 98.1 - 98.3 - 98.0 - 98.2 -98.1 My average temp before: 97.6 - 97.1 - 97.4 - 97.3 - 97.1 - 97.9 - 97. 2 March 2011 Cortisol saliva (no adrenal support): 8 am 0.33 (range 0.15-1.0) Noon 0.16 (no range declared) 4 pm 0.06 (range 0.07-0.22) 8 pm 0.05 (no range declared) Oct 2011 Cortisol saliva while on Prednisolone 5mg: 8 am 0.15 (range 0.15-1.0) Noon 0.17 (no range declared) 4 pm 0.44 (range 0.07-0.22) June 2011 24-hr-Urine 17-OH-Kortikosteroides overall (cortisol) mg/24 h 5.57 (3.19-8.11) Tetrahydrodeoxycortisol mg/24 h 0.24 (0.07-0.36) Tetrahydrocortison mg/24h 2.44 (1.38-4.07) Tetrahydrocortisol mg/24h 1.42 (0.87-2.58) Allo-Tetrathydrocortisol mg/24h 1.47 (0.25-1.77) My adrenal glands are not damaged, I have no hyopituarism, on ACTH test Cortisol doubled as it should. Two weeks ago, I discovered the impressive BOOK of P. and like the idea very much that it may be possible to avoid HC, not at least as it would mean less variables (!) and because of all the other adrenal hormones. My saliva cortisol was really low, but cortisol in a 24hr-urine did not show too little. (I think I know, what wrote, nevertheless there is a lot differing estimation about which test tells what regarding adrenal function). My desire would be to do the CIRCADIAN T3 METHOD. However, with my visit to a NEW NUCLEAR PHYSICIAN two days ago for ultrasonography and szintigram new questions arose. My thyroid has grown, I feel some slight pressure and on palpation there is a (large) nodule too. The situation in my country is extremely desperate that I'm virtually on my own. I did not manage to find a helpful thyroid doctor in 30 years. Maybe there are some hidden in the country; in any case, I'm unable to see one of the two or three known thyroid experts as they reside too far away. Moreover, the T3 only therapy and especially The Circadian Method is so new that I'm sure no one here has experience with it. The best one could expect is that a doctor may be interested and agrees accompanying the experiment. But even that is very unlikely. Nevertheless I'm still searching for one. The nuclear medicine physician found lab values most important though she said that it is necessary to take in account how the patient feels. This was promising. I have many symptoms of hypothyroidism and some symptoms of adrenal fatigue. The only symptom that may point to some sort of tissue overstimulation is rapid heart beat now and then and skipped heart beats, which decreased when I had reduced my T4/T3 dosage. At the moment I take T4 25mcg/ T3 7mcg (natural Thyreogland). Iron, selenium, potassium, other minerals, vitamins. 27 Feb. 2012 TSH < 0.01 (0.4- 4.0) FT4 19.77 (12-22) FT3 6.2 (3.1-6.8) e.g. July 2011 two weeks after stopping any thyroid medication: TSH < 0.01 (0.4- 4.0) FT4 15.98 (12-22) FT3 4.48 (3.1-6.8) antibodies July 2011 anti-M (TPO) 40.40 U/ml (< 100) anti-Tg 29,00 ng/ml (< 40) antibodies 12 March 2012 anti-M (TPO) 20 IU/ml (< 34) TRAb < 0.3 IU/l (< 1.75) Antibodies have always been in the `normal ranges', they have been measured 7 times in 30 years. I play back what the nuclear physician said. 1) My lab values clearly show that I'm hyperthyroid as the TSH is heavily suppressed (grr), this may be exogenic from my thyroid medication in origin. 2) It is known that 80% of people with hyperthyroidism have hypo symptoms, because chronic hyperthyroidism depletes the body, thus it is " normal " that I have mainly symptoms of hypothyroidism (confusing). Moreover, " you are accustomed to the high stimulation and therefore sense less stimulation as hypo " . She wasn't interested in my temperatures. 3) Describing my history, I mentioned that I may have Hashimoto's; she agreed, " sounds like that " . Later she refrained from this idea as " antibodies are low " . I had a PARTIAL THYROIDECTOMY in 1991. ULTRASONOGRAPHY: enlarged thyroid gland with nodules. SCINTIGRAM: Uptake 0.11%. Very low storage while exogenic TSH suppression. Two `cold' nodules with no storage, not suspicious for malignancy (fine-needle aspiration biopsy not necessary, she could " see " that it is no malignancy).Thyroid 44ml, diffusely enlarged. Result: " Your thyroid is exploding from 22ml 5 years ago to 44ml today. There are two great cold nodules, it is a very ill thyroid gland, and unquestionable an indication to remove the whole thyroid as soon as possible. It was clearly a demerit not having removed the whole organ at the first surgery. She guaranteed me that after letting go my thyroid I would be really well again very soon. At present no autoimmune thyroiditis in bloom/florid but anti-M (TPO) abs in normal range. No detection of autoimmune Grave's disease. When I asked, she said that it is " thyroiditis " but that it is often impossible to define which sort of it exactly. She continued: What had been necessary would have been a proper/ accurate goiter therapy, but: " with this T4/T3 medication you haven't done that! Proper goiter therapy is T4 75/100mcg with or without iodine, if abs are present no iodine, and a THS in low normal range. " I asked if it would then be possible to do a " proper goiter therapy " before doing a surgery. She conceded yes, but that it would be silly and she would not advise. I had asked this question merely to hear how `acute' my situation really was. She blamed me having always seen the " false doctors " as endocrinologists have " a very strange understanding of the thyroid " . (Yes, but I doubt that she really knows better.) She too expressed vividly that T3 is a " completely unphysiological medication " and I had done harm to my body taking a hormone combination. MY QUESTIONS TO THE GROUP: My thyroid is growing and calls for action to stop the growth. I aim for no surgery at all. Would T3 only be an adequate measure to stop the growth? When my cells finally get enough hormone while TSH will be suppressed? What the nuclear physician said, it even appears to me that it could have been lack of iodine `merely' or partially? But with iodine it was always a lot of confusion. In the beginning I took iodine, later years doctors gave up upon it. I, myself, was always uncertain as I have these abs and as twen I had an anaphylactic shock during iodine x-ray, though, last year, I read that the iodine allergy should mainly be from by-products. 16 Jan 2012 RT3 extremely high: RT3 1293.6 (215-637) FT3 4,8 (2,3-4,2) RT3/FT3 ratio 3.7 The nuclear physician knew the name, Reverse T3, but said that it has " no meaning " . --------------------------------------------------------------------------------\ ------ I continue with some information from my long standing thyroid history. In more than twenty years I was unable to find true relief from an abundance of hypo symptoms though I have tried various measures (T4, natural/synthetic T4/T3, different products, different doses, in 2008 for a short time T3 only). Nothing has ever really worked. I never had and I do not have a supporting doctor. Most of the time I manage to get a prescription and lab test, that's it. The disturbance of my thyroid began or aggravated (I wasn't tested much formerly) after I was heavily poisoned from an utterly flawed/faulty removal of seven amalgam fillings 23 years ago. From this time on a slow but steadily downward spiral began that finally ruined my life. It may be coincidence because as a young woman I had a small goiter and later, after I had given birth to my children (1979, 1980), there has been some concern about my thyroid function. TPO ab and TgAb were tested for the first time in 1991 and have been " in the normal range " . I'm sixty years of age now. All family members had/have " thyroid problems " (mainly goiters, some surgical removal once or twice, some radio-iodine). None of them knows/knew her/his diagnosis, or what preceded the therapies. They don't know if they have abs, all are given T4 only. To my knowledge none is suspicious of hyperthyroidism (e.g. Grave's disease) today. My brother solely is diagnosed having autoimmune diabetes. I suffer from many signs and symptoms of hypothyroidism as well as symptoms adrenal fatigue (adynamia, listlessness, asthenia, chronic exhaustion). Main problem is always low energy with all consequences. Years ago, I was diagnosed having ME, but I so clearly had symptoms of low thyroid function that I never was sure about the ME diagnosis and gave up using these characters. No one ever diagnosed neither Hashimoto's - as Abs were always " in the normal range " , nor Grave's disease - as " the absence of TRAb indicates a non autoimmune origin of hyperthyroidism " . My TSH is suppressed since years and T3 and T4 were repeatedly in the upper range or above. In 1991 I was pressed for thyroidectomy. It was a nightmare. I was in really bad shape, exhausted, no energy with sudden tachycardia (and maybe adrenal disturbances) but otherwise I had many symptoms of hypothyroidism. It was a time of high stress. The endo found my thyroid moderately enlarged with nodules, and when T4 and T3 were found elevated several times e.g. T4 16.5 µg/dl (RR 5 -12.3) T3 3.39 ng/ml (RR 0.67-1.62) and TSH " suppressed " e.g. 0.03 (RR 0.2-5), he was suspicious for autonomic nodules. From my knowledge of today the situation could have been suspicious for Grave's Disease, but he never mentioned that, but frightened me of thyroetoxicosis e.g. in case of iodine x-ray. The scintigram, however, didn't show an autonomic nodule, uptake was normal. Nevertheless he pressed for thyroidectomy because I had " diffuse autonomy " . The picture is blurred as I took a moderate dose of T4 since a year or so that was changed someday to T4/Iodine. Some months after the thyroidectomy, in May 1992, I was found to have very high iodine in hair mineral analyses. These years I didn't understand much of the thyroid, nevertheless I tried over a year to find a better solution, but finally felt lost and gave in for partial thyroidectomy that removed most of teh organ. The following year was terrible, I felt miserable all the time. All attempts to replace T4 shipwrecked as I got tachycardia immediately as well as severe depression for the first time in my life. All further efforts to supplement were abandoned, doctors no longer found replacement necessary as " thyroid labs were in normal range " and I lived for years without thyroid support. As I kept many of the old records, I later realized that T4 and T3 were at the low end these years. Eventually I realized that I need a therapy for my goiter not to re-grow and implemented thyroid supplementation. But the same story reiterated. I was not able to take enough hormone to relieve my symptoms, felt marginal improvement e.g. less freezing, but lab values rose, TSH was suppressed, so physicians spoke of subclinical hyperthyroidism or overt hyperthyroidism and admonished to decrease/ stop the thyroid support. This repeated oftentimes resulting in a bad see-saw/stop-go situation. 2011 was my worst year ever. In 2010 I tolerated T4 75/T3 2mcg (Thyreogland) but not T4 100/T3 mcg. 2011 doctors demanded I gave up all thyroid hormone. I obeyd as I had to demonstrate that I was `cooperative' and finally that they were wrong. Thus, during several months, I took no thyroid hormone at all, respectively no more than 25mcg/day. I suppose that it was mainly in 2011 that my thyroid and the nodules grew. In March 2011 I saw a `Hertoghe doc' who was said to have long-standing experience with thyroid and adrenals. From blood lab values and 24-hr-urine test he diagnosed a conversion problem and intended that I take 25mcg of synthetic T4/T3 (Novothyral), which had a lower T3 content than the Thyreogland. This did me no good either and I didn't understand his decision. Beside aggravation of hypo symptoms new alterations appeared: the outlook/ expression of my face changed remarkably for the first time in my life, especially my eyes look much smaller, like deeper sunken into my head, and my vision is always blurred. I'm especially unhappy about that. Another frightening shift was with skin especially of hands that got very parched with deep permanent wrinkles where wrinkles never had been. All that and other worsening happened in a short time. Each night, at nights only, I feel very hot for some time. Yesterday I saw an ophtlamologist who confirmed that there is no pathology with my eyes, but the known reduction of my visus. In Jan 2012 I was able to get my RT3 tested and believed this would definitely prove that my cells are not getting enough T3! Thanks, E Quote Link to comment Share on other sites More sharing options...
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