Getting hold of T3

My symptoms resonate strongly with Wilson's Syndrome. In summary, I have normal blood tests (Eurythroid) but symptoms of fatigue and low body function. My body temperature is consistently below 36 celsius.

I'm looking into carrying out self-therapy using the protocol described by Advanced Logical Methods. Has anyone else tried this "metabolic reset" technique? Would you share your experiences with me (either publicly after this post, or privately in a Private Message)?

If this does not get me better, I am planning to follow Dr Wilson's protocol using T3. I am having difficulty getting hold of T3 without a prescription. Can anybody Private Message me with details on where I can get hold of Liothyronine (T3)(Cytomel, thybon...)? I need T3 for both the Advanced Logical Methods AND Dr Wilson's protocol.

I am thankful that I have this community to fall back on, seeing that my family is not supportive of my condition - I feel as though i have a 'group of friends' here on this Community. Thankyou for being there and thankyou for sharing!

Robin

24 Replies

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  • I take it you never received your NDT from customs? Just wondering, without looking at your posts, have you had Vit D (yes I know you're in Italy, and we've had a scorcher of a summer!!) Vit B12, Folate and iron tested?

  • Hi Silver Fairy

    Thanks for keeping in touch. The NDT finally arrived last week. after ordering it in early-July, I had to fill out lots of customs forms back in August.

    It might well be a blessing in disguise that the NDT took so long to come, as it has allowed me time to do further research: if my new theories are correct, and I have Wilson's Syndrome, taking NDT would probably make the condition worse <deleted by admin>.

    I had Ferritine tested in June before my lifestyle changes: 70.7ngr/ml (20-340).

    I had vitamin 25-OH-D3 (vitamin D?) tested in July when it was hot here: 32.9ng/ml (>20)

    My testosterone was lowish in July: 3.22ng/ml (2.3-9.9). It then increased in August to 4.22 so the Endo said there's no problem there. I have always had to large sexual appetite, but this has waned recently :-(

    I haven't had B12 or Folate tested, but its been difficult enough to get the doctors to do the tests they have! I've kind of given up on doctors for the timebeing!

    I have a prescription to do another Testosterone test about now, maybe I should pay extra and get the lab to also do B12, folate, TSH, T4 and T3. I've been told that they don't test for Reverse T3 (RT3) in Italy...

  • Hi Angel Fairy

    Thankyou very much for your interest and your advice. I've listed my labs all in one post below...

  • Are your blood tests normal, or endocrinologist don't know what they're looking at "normal"?

    If you post them with the lab ranges, the good folks on here will give you better feedback.

    I self-treat for secondary hypothyroidism, after being diagnosed with FM 10 years ago, then putting 2+2 together when it turned out I've had a pituitary tumour causing my symptoms since my teens.

    Just read your reply, & wondered why NDT would make you worse? My temperature has increased by a full degree since starting NDT two years ago, then adding T3.

    Which type of NDT do you have?

  • Hi Badhare

    Thankyou very much for your interest and your advice. I've listed my labs all in one post below...

  • Reading your posts on your profile,I am not sure it has been established that you do NOT have an underactive thyroid,which would be called "normal"by the medical profession.They insist that the TSH blood test is a 100% accurate diagnosis tool for the functioning of the thyroid.This,in spite of the fact that each country has a different figure for when a TSH indicates a struggling thyroid!

    Going by TSH alone & the medical establishment's insistence that whatever they insist is "within range"does not rule out the possibility that you are experiencing symptoms of an underactive thyroid,which might be called borderline.

    Each individual's experience of a struggling thyroid is different.Some people seem to be unaware of symptoms with a very high TSH.Others can be virtually bedridden with a slightly raised TSH.

    You really need a free T3 & free T4 test & a TSH test that is done first thing in the morning fasting.

    You also need B12 & folate measuring.

    You need to post the results on here,with the labs ranges.

    I would postpone the Advanced Logical methods until after that.

  • Hi Naomi

    Thankyou very much for your interest and your advice. I've listed my labs all in one post below... Labs were all taken at rouhly the same time if day on an empty stomach...

  • Vitamin D in ng/ml - recommended to be around 40ng/ml, so yours is ok but could be better (this is not UK units of nmol/L - UK recommended 70-100nmol)

    endmemo.com/medical/unitcon...

    Ferritin should aim for halfway in range, eating liver once a week would help push it up

    Definitely worth paying for B12 and folate test

    Essential to test for thyroid antibodies if not done so already- TPO and TG

    Did you try strictly gluten free diet

  • Hi Slow Dragon

    Ive posted more comprehensive labs below...

  • What age are you?

    What are your thyroid bloods ?

    IF you are not getting better the issues may be one of absorption at the cell level. Cortisol is likely to be low and so this may be the issue. If you have plenty of thyroid hormone in the system, but still feel unwell then absorption is going to be an issue.

    You may want to look into using low dose progesterone supplementation. 3-6mg per day for a male is a good dose and it will improve thyroid function, sex drive, testosterone levels etc.

    The product to use for men is ProgestE which is very cheap and last for years if using 2 drops per day. 1 drop of the oil = 3mcg. It raised my testosterone and improved thyroid function and i have been using it for 2 1/2 years now with zero side effects.

  • I'm 47 years young :-)

    I'm a little nervous about tampering with testosterone, though I see that my levels are on the low-side and my sex-drive has evaporated. I thought that progesterone was a female hormone (I guess I have missed something) - does progesterone encourage the body to stop producing testosterone by itself, as is the case with testosterone supplementation?

  • Hi all. Here are my replies to your questions in one post, in an attempt to bring all my stats in one place:

    7 June 2017:

    TSH 3.260mIU/L (0.3-4), FT4 0.98ng/dl (0.8-1.7), FT3 2.63pg/dl (2.2-4.2), PSA 0.62ng/ml (0-3), Ferritin 70.7ngr/ml (20-340), Triglycerides 325mg/dl (40-160), Total Cholesterol 241mg/dl (140-200). Some leucocytes present.

    “Protein electroforensics” were at the limits of range, but all the medics I’ve seen have said that there is no problem there… Albumin 5.09g/dL (4.30-5.10), Alfa1 0.22g/dl (0.10-0.20), Alfa2 0.86g/dL (0.50-0.80), Beta 0.93g/dL (0.60-1.10). I have no idea what these values are measuring

    8 July 2017:

    Cortisol 167.3ng/dl (100-250). I was relaxed that morning. I’ve read that this measure is not very useful for measuring cortisol.

    TSH 1.91 microU/ml (0.30-3.75)(FT4 and FT3 not requested), AntiTg 15U/ml (<60), AntiTPO 28.0U/ml (<100).

    12 July 2017:

    Sodium 146mmol/l (136-145), Potassium 4.3mmol/l (3.50-5.10), Calcium 9.3mg/dl (8.5-10.1), Testosterone 3.22ng/ml (2.30-9.90), Vitamin 25-OH-D3 32.9 (>20), EBV Antibodies EBNA igG 353U/ml (>20 immune), VCA IgG 729U/ml (>20 immune), VCA IgM =absent (<20 absent).

    1 August 2017:

    Testosterone 4.35ng/ml (2.30-9.90), LH 3.40 (mU/ml) (1-9), FSH 2.20mU/ml (2-10), Prolactin 6.4ng/ml (3.0-15.0), FT3 3.42pg/ml (2.00-4.00), FT4 10.6pg/ml (7.0-15.0), TSH 1.74microU/ml (0.30-3.75), Somatropin hGHng/ml (<3.0), Somatomedine 129ng/ml (100.0-300.0).

    In August I went for a arterial thyroid and abdominal scan; my arteries are fine and my thyroid is normal. My liver, however was found to be enlarged and fatty, but without lesions.

    In summary, I have high cholesterol and triglycerides, high sodium and a fatty liver. Since I made significant lifestyle changes in June, my thyroid levels have normalised. Unfortunately, I am still feeling tiredness, feel excessively cold again now that Autumn has arrived, my toilet habits are still slow and I have brain-fog. My hereditary skin condition is constantly bad (Hailey-Hailey Disease).

    I have stopped eating bread and limit pasta and pizza to a minimum - and when I do eat it I opt for wholegrain. I have dabbled with total avoidance of gluten for a few days, but seen no obvious improvement. That said, I do feel a little bloated and dry after eating pizza. It is not easy to avoid gluten when eating out here! How long do I need to completely avoid gluten for to see results?

    I will go back to the doctor tomorrow to request further blood tests. I know he will be most reluctant to order Thyroid tests again (he thinks my thyroid is working perfectly). With a little persuasion, I can probably get him to test for Folate and B12 and I can pay extra for the Thyroid tests at the lab. I have been told that the test for Reverse T3 is not available in Italy. (I will be in the UK in the middle of October: Is the RT3 test available in the UK?)

    I really appreciate your guidance and support

    Hugs to all of you!

    Robin

  • Robin,

    The people you are replying to may not see your reply as they will not get email or onsite notifications unless you use the Reply button underneath their posts when you reply.

  • Thanks for that great pieces of advice, Clutter xx

  • Robin,

    June, both your FT4 & FT3 levels are low under range. High cholesterol and triglycerides, constipation and a low body temp are all classic symptoms of low thyroid hormone. An elevated protein level in the blood may indicate inflammation caused by an auto immune disease.

    As previously said, a low TSH, T4 & T3 levels can depict a pituitary or hypothalamus problem and the treatment of replacing thyroid hormones would be the same as for primary hypothyroidism. Also, TSH & thyroid antibodies can fluctuate so a one off low test result does not totally eliminate Hashi.

    Aug FT3 is over halfway through range & FT4 just under with low TSH. Was this test taken like-for-like re timings, food, etc with the previous ? ? ...

    The medical “system” is not completely but severely broken with many doctors treating each symptom and never investigating the root cause. They only treat re the TSH result which does not take into account the possibility of a problem with the pituitary, hypothalamus, adrenals, immune system, conversion issues or receptor problems, blah, blah, blah .. Even nutritional deficiencies can effect thyroid activity….

    Thyroid disorders are insidious and not usually diagnosed until extensive damage has occurred and our bodies becomes stuck in a chronic state of immune system overload, adrenal insufficiency, gut dysbiosis, impaired digestion, inflammation, thyroid hormone release abnormalities , etc, etc, etc ....... eventually becoming a self-sustaining loop.

    Taking our basal temps and pulse rates can be useful and I am not familiar with the “Advanced Logical Methods” protocol …. but a quick reconnoitre and I am already disagreeing with the use of coffee as a kick start in the mornings as this might over stress already struggling adrenals. Iodine can stimulate the thyroid and there is thought that if not balanced with selenium when thyroid antibodies are present, a Hashi attack could be induced.

    Also, thyroid hormones that need replacing should not be abruptly started and stopped but introduced in low amounts slowly and consistently so allowing the body to acclimatise. T3 is powerful and an inner heat and headaches are common when first introduced after a long term deficiency.

    I don't think introducing T3 alone is an answer in view of your august result and low testosterone, as previously explained the possibility of T3 becoming elevated and inducing raised estradiol which increases TBG, so discouraging T3 from being free but also further decreasing androgens.

    If you want to take T3 alone, it may be useful to read "The CT3M Handbook " by Paul Robinson to be aware of the pit falls.

    If I were you, I would consider low amounts of NDT which would offer both T4 & T3 hormones. However, if you are worried about the T4 in NDT and possible elevated RT3 levels, these can be tested in the UK.

  • Hi Radd

    I am most grateful to you for your advice.

    I have been pondering your reply over that last few days and wondering what to do. This is such a massive field of research and so little seems to be definitive. I have written a new post describing where I am at: I think I am going to try the T3 reset method, despite your kind advice.

    I'm afraid I don't yet understand your theory about EstradiolAs I understand it from Dr Wilson, if there is a Reverse T3 conversion problem, then using therapy using T4, either synthetic or natural, can be detrimental in amplifying the RT3 problem, making it even more difficult to treat later... I already have a batch of NDT, which I had trouble importing from the States, but am resisting opening it for the timebeing for this reason. I am flying into Liverpool next Tuesday and will be in South Wales for a few days - I will re-register with a doctor there in the hope that I can persuade them to do a RT3 test for me (I hope they are more open-minded than the medics I have come across so far here in Italy). I can only find the CT3M Handbook in summary format on the net. Is it worth buying a copy?

    I have persuade my doctor in Italy to order B12 an Folate tests for me and to re-check my cholesterol (this will be interesting to see after 4 months off alcohol and two Liver and Gallbladder Cleanses under my belt...). I think he forgot to add coeliac test to the list - I'm planning to pass by this afternoon prior to going for the blood-test tomorrow morning at the usual time, before breakfast.

    Warmly

    Robin

  • You're probably getting much better quality wheat, but it takes 3 months for gluten to leave the system. Digestion wise, I seem fine eating it in moderation, but was diagnosed with coeliac as an infant & fed on the stuff which is likely the cause of most of my health issues.

    This guy writes quite a lot of sense re diet, gut health, autoimmune disease, & thyroid:

    chriskresser.com/the-gluten...

    chriskresser.com/the-thyroi...

    chriskresser.com/50-shades-...

    chriskresser.com/episode-14...

  • Thankyou for these clips - Ill have a watch and get vack to you on my thoughts...

  • Higher cholesterol is a classic low thyroid symptom. Not enough thyroid is there to shunt the cholesterol into production of the adrenal hormones.

    Your thyroid results don't look too bad, but i trial of T4 is an excellent way to see if this will help your symptoms. If they do then you want to be taking them. Testosterone will increase on thyroid hormones too.

    I would see if you can get a 50mcg trial of T4. That is a good starting point and see how you go energy wise for 4 weeks. You would retest bloods after this period.

    I think ALL human beings would benefit from some form of thyroid replacement at some point in their life. Natural production of thyroid will tail off as we age, but if we self topped up many ageing issues would be less common.

    Many on this board experience the old age thing much earlier in our lives. For me i was 21 !!! Thyroid was fine according to the docs etc. After 16 yrs on antidepressants and still with ALL the same symptoms as i first had aged 21 i decided to trial some thyroid hormones (thanks to reading info on websites like this). Guess what happened ? I felt a lot better, stopped the anti d's and my health has improved ever since. I then stopped the thyroid meds after 6 months initially and became very unwell again and then i started them again about another 6 months later. I got better again !!! It was a crazy time and i lost a huge chunk of my life to an illness which is much more complicated to treat than the docs say.

    So get a trial of some T4 or buy some yourself and take your health into your own hands.

  • I'm sad to hear of your lost years in the hands of the Medics. Your story resonates with me, even though I have only been 'dealing with' them on thyroid issues since June. I am thankful for the interweb (Im sure the medics would close ir down if they could and this invaluable forum and community. I'm frustrated at the measures we have to take when we decide to go against the current and take our treatment into our own hands. I'm delighted to say that I have now sourced the T4 and the T3 I need to carry out my "metabolic reset" trials!!! Nothing ventured...

  • I tried stopping gluten for a few months on the uk and as I didn’t seem to feel any different thought I was ok. Here in Italy I tried again for longer (strict) and the last week have been having a roll with my lunch. My stomach is bloated and I have pain. I didn’t change anything else. I’m now off gluten 😏

    The clinics don’t charge much for B12 and Folate, personally I would get them tested.

    Vit D could be higher, fgs get out in that Italian sun, it will be gone soon!

    Zinc increases testosterone. No idea on dosage etc though.

  • Yes, the sun is getting cooler and cooler now... rain forecast for tomorrow! However its forecast to go back upto 35 celsius on the weekend, so Ill be getting down to that Naturist beach to get maximum exposure! 😎

    Going to the doctor tomorrow to try to order B12 and Folate tests to coincide with a control Testostrone. Once Ive achieved this with him, Ill also ask for a retest of the thytoid suite! Wish me luck... otherwise Ill just pay for the test myself and bolt it in to the others. Any other tests I should push for whilst Im in his cobsulting room?

  • Have you had thyroid antibodies tested- TPO is the main one, but if paying also check TG antibodies too

    Gluten, it has to be 100% it takes months for body to recover after each meal with gluten

    chriskresser.com/the-gluten...

    Coeliac is well screened for in Italy, in part because so much wheat is consumed. But as a result Gluten free diet is apparently well recognised

    legalnomads.com/gluten-free...

  • Yes, I had TPO and Tg antibodies tested back in July. My numbers are low, but not absent. I know I have some kind of dairy allergy, as whenever I eat something with dairy in it, I get excema in my scalp. My reaction to gluten is unclear - I'll try to get the doctor to run a coeliac test... However, I'm slowly running out of cards with him!

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