so as i posted just yesterday or the day before... - Thyroid UK

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so as i posted just yesterday or the day before about new dilemma, i received my copy of test results.

HASHISmom34 profile image
12 Replies

Please view most recent posts before commenting on this as it is a continuance to that. My copy says:

TSH 0.35 (range .4- 4.5) range should be .3- 3.0

free T4 1.0 (range 0.8-1.8) Which it has gone down since T3 addition

total 3 116 (range 76- 181) Huge improvement as 86 was the highest it ever was without T3. Usually it has been around 80 and barely in range with T4 only treatment.

I do not think i need to stop cytomel. I do not have symptoms and dr wants me to stop it. my T4 looks low but if i add synthroid which dr won't anyway, my TSH will drop even lower and then i really will be hyper. What do you all advise?

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HASHISmom34 profile image
HASHISmom34
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shaws profile image
shawsAdministrator

If you feel well I'd change nothing.

When they adjust hormones

to keep the blood withing a certain range it can rebound on us. A blood

test only gives us a number but doesn't expand in informing doctor if

our symptoms have eased or not, neither do they state how we are now

feeling - which is the aim of replacement hormones.

I don't know what dose of T3 and T4 you are taking but T3 when on an optimum dose lasts between one to three days if taken once daily. and I'll give you a link.

Splitting doses of T3 might not be beneficial as it has to saturate our receptor cells (it is the only Active hormone - T4 is inactive and has to convert to T3)

Maybe the following link will help:-

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

Also

the blood tests were introduced along with levothyroxine - before that we were dosed according to our clinical symptoms with NDT so when we

add T3 to the mix results wont be the same. Taking T3 lowers the T4.

If you had a blood test several times a day it would be different each time

If you feel well I'd change nothing.

When they adjust hormones to keep the blood withing a certain range it can rebound on us. A blood test only gives us a number but doesn't expand in informing doctor if our symptoms have eased or not, neither do they state how we are now feeling - which is the aim of replacement hormones.

Maybe the following link will help:-

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

Also the blood tests were introduced with levothyroxine alone and when we add T3 to the mix they wont be the same. Taking T3 lowers the T4.

If you had a blood test several times a day it would be different each time.

This is another link from Dr Lowe who himself took 150mcg daily and his Thyroid Hormone Resistant Patients took one daily dose:-

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

I also had a 'light-bulb' moment when I took my first dose of T3 added to T4. Next blood test I was told to stop T3 (only 10mcg) but I refused so they dropped T4. I knew then I would go it alone and have been well since. I take T3 only now.

HASHISmom34 profile image
HASHISmom34 in reply to shaws

Thank you Shaws. I am on Cytomel 5mcg daily and synthroid alternating 50/75. What you wrote makes a lot of sense. These drs know not much at all. Endos make me feel like TSH is the only way to judge. I want my symptoms treated.

shaws profile image
shawsAdministrator in reply to HASHISmom34

I shall give you three links. This doctor (as with many others now retired or struck off for using the 'old fashioned' method of treating us). some doctors still use this method but finding a needle in a haystack these days might be easier. Big pharma has given doctors monetary incentives to use levo only in the USA and the Associations to only use their products. False statements have also been made about NDT or the addition of T3 as we (hypo) due to internet access have found that we have an option other than levo if we're not improving.

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

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

web.archive.org/web/2010112...

I hope I've not overloaded you but the link below was sent to the BTA etc in the UK and despite three yearly reminders they never did respond before Dr L died.

drlowe.com/thyroidscience/C...

With thyroid gland if symptomatic despite taking hormones we have to decide what we want.

Regarding your dose of 5mcg of T3 (equal to 15mcg T4 plus 50mcg T4 = 65mcg levo). Too low a dose of any thyroid hormones can rebound and give us more symptoms. We used to have doses between 200 and 400mcg.

This is about one of UKs doctor who was also villified for doing what he was taught as a medical student and a Scotsman who wouldn't be bullied when he realised why he was getting so many patients (who recovered under his watch). He has also died through a stroke which his patients/friends/staff believe was due to appearing before the GMC (our Medical Judges) about 7 times but always dismissed as a caring doctor . It wasn't his patients but the professionals complained. Excerpt:

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.

worldthyroidregister.com/Go...

Learner1 profile image
Learner1

If you take T3 it will lower TSH and therefore T4 as your body doesn't think it needs to stimulate T4 production because it has T3.

I've been on T3 only for about 4 years and my TSH has always been close to 0.

In this situation you need to be very aware of your symptoms and work with your doctor to adjust based on your symptoms.

If you have hypo symptoms, running cold, sluggishness, weight gain, etc. you may need to up your dose. If you have hyper symptoms like heart palpitations, high pulse or BP, running hot, etc. you will want to cut back.

HASHISmom34 profile image
HASHISmom34 in reply to Learner1

Learner1 that's the thing, now that my TSH is .35 i feel great but dr wants to take my T3 away now. I am angry because i felt terrible with T3. I have no symptoms besides crashing in evening once T3 wears off.

Eddie83 profile image
Eddie83

Looked at two previous posts.

1) Some patients (that includes me) do fine when their FT4 runs low in range. I actually do worse when mine is high in range.

2) Your TT3 is only 38% up in range. I would expect you would do better with more T3. Too bad they did not do FT3.

3) In my opinion, TSH is irrelevant unless it drops below 0.05. What matters is HOW YOU FEEL!

4) I would look the doctor in the eye and ask her why she wants to treat numbers on a lab sheet, rather than amelioration of the patient's symptoms. Stopping T3 is a stupid idea, given the benefit!!

5) If you are still on T4 50/75 (average 62.5), and still on cytomel 5mcg, that is a T4-only equivalent of 78mcg (assuming T3 power factor 3). How does 78 compare to the Abbott T4-only full replacement of 1.7mcg/kg body weight?

6) Your T3 ratio of 5:62.5 (1:12.5) is on the low side. I think you should try 10:62.5 (1:6.3), a little less T3 than NDT would give you.

HASHISmom34 profile image
HASHISmom34 in reply to Eddie83

I agree with all of the above. I wanted my Free t3 done and endo says it is irreverent! What does #5 mean? ABBOTT T4 only full replacement? with the body weight? Also I am wondering if i should just stay on what i am on or try Nature throid. My dilemma is the 65 dose is 38mcg T4 and 9 mcg of T3 so i wonder if the T3 would be too much for me and the T4 too little. I would try and get as close to my current dose as what i have now. With a TSH of .35 now on my current dose of 5 mcg cytomel and 50/75 synthroid, the closest doses of NDT seem far off. Eddie83 what would you advise?

Learner1 profile image
Learner1 in reply to HASHISmom34

Go by your symptoms, not your TSH. And find a different doctor. Free T3 is essential to understanding where you stand, and if your do you doesn't understand that, he or she is very dangerous...

Eddie83 profile image
Eddie83 in reply to HASHISmom34

Endo is grossly ignorant. He/she apparently knows nothing about T4->T3 conversion. I would not go back there if you have another option.

What #5 means is that you can use the T3 power factor to compute various T3+T4 dosages. Suppose your T4-only full replacement turns out to be 100mcg, or you are on 100mcg and are not hyper (but are not euthyroid because you can't convert). Let's suppose you wanted to switch to using 10mcg T3, with T4. With a T3 Power Factor of 3, you would then conclude that 10mcg T3 is roughly equivalent to 30mcg T4. So you would subtract 30 from 100, telling you that you should reduce your T4 dose to 70mcg, then add in 10mcg T3 a few days later (to allow time for your blood T4 to fall a little, to avoid overdosage). Some endos (e.g. Ridha Arem) state that the T3 Power Factor is 4, but based on my experience while on T3-only, I believe it is closer to 3.

Several companies have come out with these T4-only full replacement suggestions. I saw one that was 1.5mcg/kg body weight. The 1.7mcg/kg body weight from Abbott Pharm, seems like a better estimate to me. YMMV. Divide your weight in pounds by 2.2 to get kg, then multiply kg by 1.7 to get approximate T4-only full replacement dose.

As far as Naturethroid, the T3:T4 ratio there is about 1:4, like most dessicated pig thyroid. However, you always have the option of adding T4 to your dose of Naturethroid, if you think another T3:T4 ratio is more appropriate for you. I am not on dessicated thyroid, partly because my insurance won't pay for it. I am using T3+T4 at 15+75, i.e. at a T3:T4 ratio of 1:5. There are a lot of opinions about what the ratio should be; ultimately it is an individual thing. I suspect ratios from 1:4 to 1:10 are what work for most people.

TSH is mostly irrelevant. How you feel is the bottom line. So long as you know what being hyper feels like and are comfortable with altering your dose yourself, you should be fine.

HASHISmom34 profile image
HASHISmom34

What is Central hypothyroid? Not familiar with this term. I told my endo my TSH is only that low because i am on T3 now and that gives you a suppressed TSH, she said it does not suppress your TSH! and got mad...... i guess all of the research i did was nothing compared to her medical studies. She believes one way only. I had to even beg for 5 mcg of cytomel. thanks reallyfedup123

shaws profile image
shawsAdministrator in reply to HASHISmom34

When we aren't improving, we have to read and learn and we do find out they know little except look at the result of the blood test and not the patient neither do they ask if we're suffering or want to know why we are suffering. Instead they'll give us a plaster to cover the symptom, ie an antidepressant maybe or pain relief etc etc.

If on insufficient we can develop other more serious diseases which they are completely unaware of.

Dr Lowe had also written an article about the Tyranny of the TSH which I cannot find at present.

HASHISmom34 profile image
HASHISmom34

eljii i beg to differ! When my TSH got below ! with the T3 i never felt better.

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