Living in dispspair with Thyroid: I am in the US... - Thyroid UK

Thyroid UK

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Living in dispspair with Thyroid

sassyell profile image
20 Replies

I am in the US and is taking levo 50mcg for years and for a month and a half t3 .5 mcg. I am in really bad way with anxiety and depression. MD says my blood result show thyroid is fine. I would like to try the gel but it's not sold in the US. Can anyone help me I can't take it any more

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sassyell profile image
sassyell
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20 Replies
Clutter profile image
Clutter

Sassyell,

Can you post your recent thyroid results with ranges (figures in brackets after results) so we can see whether you are optimally medicated on 50mcg Levothyroxine and 5mcg T3.

I've never heard of a thyroid gel and I'm fairly certain there's no such thing available in the UK.

sassyell profile image
sassyell in reply to Clutter

I need to get it from the endocrinologist, as soon as I get it I will ppst. Thanks

BirgitteG profile image
BirgitteG

Wish I could do something, know the feeling. All my best wishes 💜

sassyell profile image
sassyell in reply to BirgitteG

Thanks

sassyell profile image
sassyell in reply to BirgitteG

Thanks for your kindness

shaws profile image
shawsAdministrator

You have my sympathy and being on 50mcg of levo for all those years, no wonder you are having problems.

Before blood tests and levo were introduced we were diagnosed by clinical symptoms and given Natural Dessicated Thyroid hormones until symptoms

went.

You have to take charge of your own health as having too low a dose can cause us to get other more serious conditions, as if hypo isn't sufficient.

I haven't heard of gel but an American Doctors/scientist was so disgusted that only levo was provided and that it all depended on blood test results that he invented a natural dessicated thyroid hormone called Thyro Gold which doesn't require a prescription and his widow Tammy now dispenses this. It contains all of the thyroid hormones our body requires, i.e. T4, T3, T2, T1 and calcitonin. Also T3 is the active hormone and our brain contains the most receptor cells and that's often why we are diagnosed as 'depressed' i.e. because we keep complaining or are genuinely depressed.

naturalthyroidsolutions.com...

web.archive.org/web/2010121...

This is also Dr Lowe's website, now archived since his early death. There's lots of helpful information, particularly about the TSH and he also published a paper about the 'Tyranny of the TSH'. Some links within these topics may not work because its archived. Topics at top of page.

web.archive.org/web/2010103...

We can get better but we have to read and learn in order to do so. Many members have been successful with various methods, i.e. adding a decent dose of T3 to a decent dose of levo, T3 only, or NDTs

jacrjacr profile image
jacrjacr in reply to shaws

i wonder how many people take thyroid gold hence i have thought about trying that also

shaws profile image
shawsAdministrator in reply to jacrjacr

It is trial and error with any thyroid hormones, I tried about 3 or 4 NDTs.

This is from Stopthethyroidmadness - some hints:

stopthethyroidmadness.com/n...

stopthethyroidmadness.com/m...

excerpt from STTM re Thyrogold:

THYROGOLD, called a “dietary supplement” to meet FDA rules, though patients report it working very well. Was created by the now-deceased John C. Lowe, and his wife currently sells it. Comes in 150 mg and 300 mg tablets. The mgs is NOT equivalent to the same mgs in prescription NDT tablets. i.e. 150 mg may be “similar in effect” to 1 1/4 grains, but that’s a subjective opinion by some. The thyroid powder in the tablets are from New Zealand pasture-fed cows, plus there is 25 mg of Coleus forskohlii, which is said to promote thyroid function. It is a popular OTC product!

jacrjacr profile image
jacrjacr in reply to shaws

that was the confusing part for me..i emailed the lady on the site and she said for 100mg of t4 conversion...to take 300mg one pill first thing in the morning....rather than the 150mg pills.....

shaws profile image
shawsAdministrator in reply to jacrjacr

Personally, and I haven't taken thyro gold but on reading STTM page some found the original 300 dose quite strong so they split the capsule and took half at first, so that's why 150mcg was introduced.

I would start at 150mcg and then wait for a couple of weeks then increase gradually. If you feel heart beat is too fast you would have to drop down slightly. when you find a dose which suits you can then switch to 300 or a mix of 300/150.

This is advice from Dr Lowe who invented Thyro Gold so that patients didn't need prescrips:

naturalthyroidsolutions.com...

jacrjacr profile image
jacrjacr in reply to shaws

thank you!!!!!!!!!!!!!!!!!!!!!!!!

sassyell profile image
sassyell in reply to jacrjacr

If you do I would love to know how it works for you.

shaws profile image
shawsAdministrator

This is also by another doctor, now deceased, who was seeing patients like yourself, left out on a limb and to get on with life feeling absolutely awful with nowhere to turn:-

This book was written to draw attention of the medical profession to a major faux pas in the care of patients with hypothyroidism. This arises from the inexplicable refusal of the medical profession to recognise that patients can suffer from hypothyroidism when the thyroid chemistry is deemed to be ‘normal’ if the free thyroxine or the thyroid stimulating hormone lie between 95% reference intervals. There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.

This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.

This isn't to advertise the book but to give a short summary of how he felt. I am now well.

(I am not medically qualified only have my own experience of being undiagnosed/undertreated).

sassyell profile image
sassyell

Thanks for the info.

puncturedbicycle profile image
puncturedbicycle

Sorry to hear you're so unwell. A lot of us have been there. I suspect you're on too little levo and too little t3 (that is a tiny dose and I wonder if it is doing you any good) but we'll know more when you post your test results. Sometimes even just a small tweak helps, ie if 50 levo and 5 t3 is too little, 50/10 or 75/10 might be perfect.

Mblf040 profile image
Mblf040

I have been dealing with thyroid issues for over 20 years , finally my Dr. increased my Levothyroxine to 200mcg and added Liothyronine 75mcg for my T3 which I previously had never been treated, I lost over 100lbs and my depression/anxiety are practically a non issue.

sassyell profile image
sassyell in reply to Mblf040

I have an appointment with my Endocrinologist on the 14th and plan to discuss solutions to my dilemma. I really don't have the energy or strength to think or explain what I am going through. I am just feeling down and afraid.

Mblf040 profile image
Mblf040 in reply to sassyell

I completely understand what you're feeling I was there for a very long time, it has affected both my marriage and my children. The best advice I can give you is what I wound up having to do, write exactly how you're feeling down I used the memo app on my phone and talked into the microphone to get it down because I couldn't write that much with the pain and fatigue. I was very open and honest, very descriptive. I told my Dr. that I was so very not OK and that things had to change. I gave her the phone with my symptoms, she was open to to more tests and trying new meds, she said that she was unaware of exactly how extent my symptoms were, after approximately 3 mnths we had the right combination and I have been doing great for almost a year now. I know that it seems/feels daunting, impossible, don't give up, you can get better and if the Dr. you are seeing now doesn’t want to start aggressively treating you, I would definitely get a second opinion. I hope that everything works out for you. Don't give up ☺

sassyell profile image
sassyell in reply to Mblf040

Thanks for the encouragement I really appreciate it. Words cannot express my appreciation.

sassyell profile image
sassyell in reply to Mblf040

Glad to hear something is working for you.

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