Bloodwork Numbers: Hi, I posted two weeks or so... - Thyroid UK

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Bloodwork Numbers

svedderfamily profile image
9 Replies

Hi, I posted two weeks or so ago, after getting phone results that my TSH was .008. I live in the US and am self-medicating with Thiroyd. (I didn't know they were doing any thyroid bloodwork that day- I was told it was "routine only.") As I shared before, the very concerned nurse told me I could go to jail for taking it, when I explained why the TSH number was so low. Well, today I got the paper results in the mail and there also was a Free T4 result. So here are the two test results:

TSH 0.008 (normal considered 0.350-4.50)

Free T4 0.88 (normal considered 0.80-1.80)

Thoughts?

I will add that I feel functional on my current dose of 2 pills/day. I take 1.5 in the morning and .5 in the afternoon. Full disclosure, though, is that I was taking 2.5/day and was scared by the low TSH and reduced to 2/day. Thanks for your insight on this. I so appreciate your wisdom!

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svedderfamily
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9 Replies
eileenmorrison profile image
eileenmorrison

People on NDT, natural desiccated thyroid hormone, usually have very low TSH.

What is more important is knowing your FREE T3 blood level and your REVERSE T3 blood levels. And most important are your physical symptoms! Hair, skin, fatigue etc.

shaws profile image
shawsAdministrator

Natural Dessicated Thyroid Hormones was first used in 1892 successfully. Previously patients died with awful symptoms.

The nurse is wrong - you wont go to jail for using NDT. It may be unlicenced as it never needed one in 1892 and onwards up until the pharmaceutical companies introduction of levothyroxine as the 'perfect' replacement and with a hard sell onwards, coupled with monetary incentives to doctors/endos. Rumours abounded too.

This is an extract:

For these reasons, the great majority of physicians believe synthetic thyroid hormones are the safer treatment option. Animal thyroid hormones, however, can still help manage hypothyroidism for patients who prefer that alternative knowing the disadvantages outlined above.

endocrineweb.com/conditions...

When they mention 'disadvantages' they really do not understand that many are disadvantaged by the insistence on levo only. How we are puzzled and ask doctors why am I feeling far worse than before. They cannot answer that question - remain fixed on the 'results' than how we are coping with disabling symptoms that (for me) only occurred when prescribed levo. Many also prescribe anything else for the 'symptoms' than a decent dose of hormones to alleviate them.

I'm glad you are feeling so much better on NDT.

Rosierebel profile image
Rosierebel in reply toshaws

I had so many odd side effects while taking Levothyroxin, at the time I thought it must just be normal for people who have Hypothryroidism, but since developing more adverse reactions and now on NDT I have realised that a lot of things I just accepted over the years were actually down to the medication. I wish that the powers that be didn't have this attitude of 'it''s new therefore it's better'.

shaws profile image
shawsAdministrator in reply toRosierebel

They all 'fell' hook, line and sinker with the Promotions (and also monetary incentives) when levo was first introduced. How many people have suffered since (and I know some do o.k. on levo) but it is the 'left-overs' who have borne the brunt. We know some have committed suicide even, or lost jobs and families because the doctors say that there is nothing now wrong because the 'blood test tells them so' whilst taking no account of clinical symptoms whatsoever because they know none of them and the patient is left to flounder.

Thankfully some members have been able to fight their own way through. :)

Rosierebel profile image
Rosierebel in reply toshaws

Yes it's money at the bottom of this, I think they don't want to license NDT because it will be dearer, and yet bought in bulk it wouldn't be that much. It's costing me because of the cost of getting a private GP to prescribe it, the cost of ERFA isn't too bad.

shaws profile image
shawsAdministrator in reply toRosierebel

By the time we get 'additional' prescrips for, antacids, anti-d's, pain relief, insomnia etc. It will cost far more than NDT I think. Also because NDTs have been prescribed, safely for more than 100 years that, in itself, should suffice as a safe replacement. Not including loss of jobs/relationships and detrimental to our health if not adequately given optimal hormones which may well result in heart disease or cancer or diabetes.

Just because these people sit in judgement of what they assume is best for us and are unreasonable when we tell them we are suffering, they turn a blind eye and deaf ear. How many members recall the name 'hypochondriac' as they keep appearing in the surgery to be told there's nothing wrong - when their instinct tells a different story.

When we are given an optimum of whatever suits us, ALL symptoms resolve and we feel well. Such as those who also do fine on levo.

Some people are sensitive to different chemicals, soaps, food, vegetables, chocolate etc. so you cannot insist that they use/take these products regardless.

Should a 'caring profession' not be able to prescribe a different type of a long-standing hormone replacement without the threat of retribution as Dr P and Dr S and others have suffered in the past particularly with their use of clinical symptoms when TSH isn't the 'prime' number?

They turned down Dr Skinner's invitation to a Conference to discuss the parlous situation of many people who remained undiagnosed with a dysfunction of the thyroid gland and too low a dose of thyroid hormones, but not one of the Professionals took up the invitation.

I think I would call that 'conceited' although I wonder how many would have 2,500 testimonials from patients who were dismissed by them but assisted by Dr Skinner and produced at his 'trials and tribulations' and it was certainly not Dr S's patients who complained. Who Did the pursuing??

Rosierebel profile image
Rosierebel in reply toshaws

Absolutely!!!! It's time, I think for us all to get together and try some people power to right this wrong. I thought myself that it doesn't make sense because of all the other medications alone that we end up taking to try and help us with the side effects of Levothyroxin, of course the drug companies who produce all these drugs are rubbing their hands with glee!!!

Glynisrose profile image
Glynisrose

You can tell the phlebotomist or doctor. NO thyroid tests.

Eddie83 profile image
Eddie83

Honestly? JAIL? She deserves a banana-cream pie in the face! Or maybe a sneer from Dana Carvey while he exclaims "Well, isn't that special!"

I have posted on here before about some studies that found there are absolutely no negative effects from low TSH, so long as TSH is 0.04 or above. Janie Bowthorpe wrote about low TSH many years ago. Check out her article:

stopthethyroidmadness.com/2...

What matters is how you feel! If you don't feel hyper, then you are very likely ok.

My other thought is, why isn't your doc checking FT3? T4->T3 conversion is crucial because T3 is what makes you feel well. Having FT3 mid-range or above is the single most important element of thyroid treatment. TSH provides no info about usable T3 level. Your doc needs to step into the 21st century!

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