T3 dosage and prescription : NDT & Levo did not... - Thyroid UK

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T3 dosage and prescription

ranya profile image
17 Replies

NDT & Levo did not give good results. I am on levo - 50mcg from last 25 years with severe hairloss,weakness & heart rate.

I want to try T3 for first time. Pls share your experience to know how to start T3 medication,dosage and what are its sideeffects for hypothyroidism?.

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ranya
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Jazzw profile image
Jazzw

I doubt 50mcg of Levo would give anyone good results, let alone for 25 years. It sounds like you've been chronically undermedicated for some time. Poor you x

When you tried NDT, what did you try and how much did you take?

ranya profile image
ranya in reply toJazzw

I started thyroid-s 60mcg tablet per day for a week. Had severe palpitation and hairfall. than reduced to 1/2 tablet of thyroid-s 60mcg and 25mcg of levo for two weeks.no improvements,got worse.then 1/4 tablet of thyroid-s 60 and 50mcg of levo.had to stop thyroid-s to get back to previous state. I want to try T3 with great hope to get better than being on levo.

tsh - 3 on levo -50mcg and my NHS gp did not help .

Jazzw profile image
Jazzw in reply toranya

Yes, that TSH is too high for someone with full-blown Hypothyroidism. Hard to persuade our GPs though, isn't it?

OK. Honestly, I doubt it's th NDT that's caused your hair to fall. With hair loss, the wheels are set in motion several weeks before you actually lose any hair (unless you're having something like chemotherapy). Usually you can track it back to a change in diet or a stressful event about 12 weeks before the hair starts coming out.

But you're right, T3 might well be the answer. Though an increase in Levo might be just as good an answer. You really need your GP to check your FT3 and FT4. And while he's at it, your ferritin levels (often found to be on the floor in people with hypothyroidism and hair loss), Vit B12 and Vit D. I'd lay money on you being deficient in all 3.

If your GP won't undertake the tests, It might be time to find a new GP who's interested in getting you better.

greygoose profile image
greygoose in reply toJazzw

More likely to be the levo making your hair fall out! It's even written on the PIL that this is a side effect.

Jazzw profile image
Jazzw in reply togreygoose

True - but it's one of those cause and effect things again, isn't it? Is it actually the Levo, or is it the fact we're often left undermedicated on Levo, which results in us developing gastroabsorbency problems?

Either way, hair loss is horrible. As if the physical symptoms weren't enough...

greygoose profile image
greygoose in reply toJazzw

Tell me about it! All mine fell out. Just had a few frizzy hairs left round the edges. Completely bald on top. It's true that we're often left Under-medicated by doctors, but even on 200 levo and a bit of T3, I was still losing hair. And it is a well-known side-effect of levo.

HIFL profile image
HIFL

On average, a normal human thyroid gland secretes about 100 mcg T4 and about 6-10 mcg T3. When you took only 50 levo, you were short on both T4 and T3. Every combination you described below, including 60 mg Thyroid-S, is also short of one or the other. 1 grain of NDT would contain about 38 mcg T4 and 9 mcg T3, so while you got close to replacing the T3, you then fell far short on the T4 amount. That can definitely trigger hair loss, as will any change in dose.

This link gives a mathematical way to calculate an approximate dose, from which you can fine tune. tiredthyroid.com/blog/2014/...

If you have been undermedicated for years, you need to go VERY slowly in raising your dose and adding any T3, because the heart can be very sensitive to T3. If it were me, and knowing what I know now, I would've stayed on the 50 levo and then started adding in NDT 1/8 of a grain at a time, to let your T3-deprived body get used to it gradually.

helvella profile image
helvellaAdministrator in reply toHIFL

Trouble is, all the formulas can only apply to someone who has no thyroid. There is no sensible way of allowing for "about half a thyroid"!

I assembled several published formulas and created a spreadsheet which calculates them from the basic inputs. This is it:

dl.dropboxusercontent.com/u...

I warn strongly that this has very limited applicability and is really only intended for estimating a starting dose after total thyroidectomy.

PR4NOW's post a couple of hours or so ago re high doses of levothyroxine also points to the difficulty of relying on weight.

Rod

HIFL profile image
HIFL in reply tohelvella

Why do they only apply if you have no thyroid? When any thyroid medication is taken (whether or not a person has a thyroid), TSH becomes suppressed when the right dose is taken. Or is that point in question? That TSH should not be suppressed?

I think the formulas are a good way to determine a MINIMUM dose. They are necessary for people like the original poster, who has been stuck on 50 mcg for years. ANY formula would show she needs much more than that!

helvella profile image
helvellaAdministrator in reply toHIFL

They only apply when someone has no thyroid because of the difficulty of making allowance for the production of thyroid hormone by whatever thyroid tissue exists. The link you provided talks about total thyroidectomy.

My TSH is not suppressed. I do not believe that I am under-medicated. If I did, I have the means to change my dose as and when I need or wish. I am happy where I am. I do not believe there is a blanket "TSH must be suppressed" requirement.

I agree that the original poster almost certainly needs more thyroid hormone!

Rod

HIFL profile image
HIFL in reply tohelvella

Interesting. Can I ask what your dose and TSH are? I know many patients who have their own thyroid, who take NDT, who have a suppressed TSH. And even with a combo of T4 + T3, many also end up with a suppressed TSH. I know it was easy to maintain a normal TSH when I was on T4-only, but on anything with T3, TSH is gone! I don't think it SHOULD be suppressed, but that's just how it ends up.

shaws profile image
shawsAdministrator

Ranya, I am sorry you have been on 50mcg only of levothyroxine for the past twenty-five years - a lifetime. If you had such a low dose of NDT as

well, it's no wonder your haven't felt they didn't have much effect on your wellbeing.

50mcg is such a low dose except if you had been very frail with a heart problem.

When we are hypothyroid, everything slows down, heart rate, pulse, temp. We all need sufficient hormones to increase our metabolism and bring pulse, temp, etc back to normal.

hormonerestoration.com/Thyr...

As you are on only 50mcg of levo. It would be best if you switched over to half of T3 as that would, roughly be equal to 50mcg levo. T3 doesn't need to be converted, as levo does, so it is into our cells more or less within a number of hours. I would stay on this dose for around 2 weeks then increase by another 1/4. In another 4 weeks by another 1/4 so you are taking 1 tablet (20mcg or 25mcg). You can then improve on this if you feel the need to about every 4 to 6 weeks. Before you begin I would have a blood test first and get copy with the ranges for your own records. I will give below how we used to be treated and it's the first question:

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

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

An excerpt from the above:-

"Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

"NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)"

I wish you success. The secret is to go by how you feel and if you took a little too much of T3, it's easy just to miss the next day's dose and take a reduced dose from thereon. If you feel well you are on the right dose for you.

If you haven't also had your B12, Vit D, iron, ferritin and folate tested recently, ask for these to be done so that you can treat deficences if need be.

thyroiduk.org.uk/tuk/treatm...

Best of luck.

ranya profile image
ranya

Iam on Iron suppliments. my lab test - FT3 ,FT4,Vit B12,T3,T4 are in normal lab range. TSH readings between 3- 4 every time on levo-50mcg.

my gp says thyroid profile reading is normal and do not have any problems due to thyroid.

I have every symptoms of hypo since 24 yrs. I want to try T3 to see if i can get better. How to start T3 to check if it works for me?.

Jazzw profile image
Jazzw in reply toranya

Ranya

Normal doesn't mean optimal. Do you know what the actual results were? In range doesn't mean normal, not where thyroid function is concerned.

And your GP is wrong. This is a thyroid problem. You are clearly undermedicated - your symptoms alone tell me this. But that TSH of 3 tells me that your GP doesn't understand your condition at all. Most people on Levo feel better if their TSH is under 1.0.

You need a raise in your Levo dose. I think I read that you reacted badly to NDT - it is likely to have been the T3 in it that caused you problems. Many find they can't tolerate T3 if their ferritin levels are lower than 50 (optimum is 70-90).

ranya profile image
ranya

my NHS gp is irresponsible to say tsh- 3.35 (01-05) is normal range. I had ferritin,t3,t4,freet3,freet4 blood test which is with in normal range .

Iam looking for t3 medication to check if it works for me. Do t3 work for hairloss problem?

Is there any private gp near london for t3 prescription.

I did not notice any improvement on thyroid-s along with levo.not sure of t3 medication.

Jazzw profile image
Jazzw in reply toranya

my NHS gp is irresponsible to say tsh- 3.35 (01-05) is normal range.

Yes. He doesn't know he's being irresponsible though. But people with properly working thyroids have TSHs between 0.5 and 1.5. You're undermedicated.

I had ferritin,t3,t4,freet3,freet4 blood test which is with in normal range .

Normal range - not good enough. You need to know exactly what those results are. Your ferritin level is likely to be at the bottom of the range, as is FT3 and FT4. You'll feel rubbish and your hair will carry on falling out until the situation is rectified.

I am looking for t3 medication to check if it works for me. Do t3 work for hairloss problem?

Is there any private gp near london for t3 prescription.

It might work. But being on a bigger dose of Levo might work too. You'll find that good endocrinologists will probably work on raising your Levo first, though they may add in a small amount of T3.

I did not notice any improvement on thyroid-s along with levo.not sure of t3 medication

I think you took less than a grain for about 3 weeks but struggled with palpitations? Again, that suggests to me that your ferritin level is very low in range.

See if you can get hold of the actual numbers. You're entitled to know what they are - it's your health, not the doctor's.

Promise - we'll keep trying to help xx

ranya profile image
ranya

ferritin - 27ng/ml [12 - 195]

vit b12 - 115

free t4 - 11.4pmol/L [0.3 - 5.6]

tsh - 3.43miu/L [0.3 - 5.6]

Haemoglobin - 13.6g/dL [12-15]

serum alanine aminotransferase is 4iu/L [5 -55] is below reference limit. (may be this is causing hair loss)

my gp says my tsh is in normal range with 50mcg levo - tsh 3.43 with lab range.

I have more readings for blood count and liver tests in normal range in lab report.

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