T4 only

[Gardenofeden]

Just curious if anyone here has successfully treated their hypo symptoms with the use of t4-only therapy?...especially after a total thyroidectomy? If so, could you please post your lab results including the ranges...free t3....free t4 and TSH....thanks kindly😊

[Hoxo]

Hope you get some replies but I suspect that person may not be on this forum!

[teasel90]

I had partial thyroidectomy 21 years ago and have only ever taken T4, in the form of levothyroxine sodium. Unable to give lab results as only have blood test once a year and that's not due for a while. Yes I have weight issues and thinning hair but otherwise o.k. I was originally taking 100mcg then eight years ago it was put up to 125mcg.

I feel lucky in that I don't seem to have any of the problems most of those on this forum go through.

Sorry I can't be of more help.

[NadeNud]

I had a TT and am on T4 therapy. Haven't explored the NDT side but might at a later date.

When my dose is right my T3 and T4 are midrange and I feel good. However, my dosage keeps fluctuating which causes muscle pain, fatigue and feelings of depression. Then I have to convince doctors to give me more. Found a very sympathetic one who is now on maternity leave so having to go through the whole process again!

My TSH is usually about 0.06 when I feel ok.

A TSH of 0.1 and midrange T4 and T3 seemed a good result but I had the above symptoms. Had a doctor who told me she wouldn't change a result like that and told me 'take painkillers, then!' when I told her I still had pain.

If it wasn't for this forum I would be suffering constantly with hypothyroidism.

When I feel my symptoms, I give raise my dose by 12mcg (breaking a 25mcg tab). This is how I find my new levels and it works for me. Within 15 minutes the symptoms are gone. I've been told that this shouldn't work and that it needs 4-6 weeks to stabilise but I feel the effects immediately.

[stockman27]

Dear Gardenofenden, Thats the big problem, I have had a total thyroidectomy and the ranges dont mean that much. I once went to a professor who got my ranges to a perfect level and he was happy, but I could not walk count no breath and felt terrible. Ranges dont mean that much they are just a guide, it is how you fell.

Regareds

John C

[bantam12]

I am very well and been on Levo for 15 ish years, no thyroid after surgery and RAI. My sister has been on Levo for around 40 years are TT in her teens.

TSH 0.17 T3 4.8 T4 18.2 on 112.5mcg

[Gardenofeden in reply to bantam12]

Thx...are your ft3 and ft4 ranges the same as the ones i posted?

[Gardenofeden in reply to Gardenofeden]

Sorry...i posted my ranges on a different discussion.

My ranges in Canada are as follows:

Ft4 10.0-25

Ft3 3.5-6.5

😊😊😊😊

[JOLLYDOLLY]

I was born with only a partial non working thyroid. Was on T4 only for nearly 40 years but started having problems, when a GP decided she knew best and radically changed my medication. You can be treated with T4 only. I had no problems for the first 32 years of my life, lead a healthy normal life with no side effects. But unfortunately it did not continue and in the end, needed help with T3 too.

If you live in the UK, T3 is being phased out due to the funding. The "Professionals" will say T3 doesn't work and it is bad for you, it is not, if taken in the right way. A lot of people on it, will have to finance it themselves. There is a lot of scientific evidence to support the T3 medication, which is dismissed.

Hope this helps. Unfortunately I have not got my results to hand, but the last time I was checked, my T4 was over, so needed to be reduced and my T3 levels, were where they should be, middle range.

[Gardenofeden in reply to JOLLYDOLLY]

I am so confused because most people here tell me my free t's should be high in their ranges, not middle 😕😕😕

[JOLLYDOLLY in reply to Gardenofeden]

I know what you mean Gardenofeden!

After all the years I have taken the medication, I still get very confused by the ranges myself. all I do know is that the so called dr's/Professionals know naff all either. Very disillusioned with it all.

I know at some stage I will end up on my original dose. I do believe that if they had not meddled all those years ago, I might not have the health problems I have today.

The stupid thing is, I was told when they originally altered my dose from 200 mcg down to 75 mcg (yes that low) I was told that "too much T4 was bad for the heart, but if I didn't get enough, then they would give me a higher dose any way" Completely contradicting themselves. Kept bleating on about how a unscrupulous dr had been struck off for giving T4 as a slimming agent to patients with a normal thyroid - My question was, "what has that got to do with me and if people are stupid enough to risk their health, then that had nothing to do with me, I just wanted to have quality of life" I got no answer and was shown the door.

I am now on more or less my original dose, which would be normal for me! Plus a further dose of 20 mcg of the T3.

[Gardenofeden in reply to JOLLYDOLLY]

I have no thyroid and am on 100 t4 and 12.5 t3.

My tsh is completely surpressed my free t4 is 19.5 (10-25) and my free t3 is 5.2 (3.5-6.5)

I still feel unwell.

Not sure if i increase one or the other but kinda afraid to do so as the insomnia and anxiety may return😕

[Gardenofeden in reply to Gardenofeden]

I have gained weight since adding t3 too i might add....

I am 5 foot 2 125, lbs...no thyroid gland.

Wonder if my dose looks too high/low for someone my size?

[JOLLYDOLLY in reply to Gardenofeden]

Hi, I am 5ft 2in as well. I would say, you were about 5lb under weight. Your results look as though they are getting to the upper end of the range.

My cousin, who also has thyroid problems takes 112.5 mcg T4. How she does her dose, is 100 mcg every day and then takes one 25mcg every other day. It seems to be working for her as she is slightly underweight herself. I would check it out first, because if you are too high, it might make you hyper and you don't want that or the anxiety.

I, on the other hand and unfortunately, classed in the high end of obese. Only been like it since they started messing me around though. Practically gained 10lb for every year I was on the wrong dose. I find it very hard to lose weight these days. But I won't give up.

[Gardenofeden in reply to JOLLYDOLLY]

I can assure you i do not look underweight LOL...my stomach pops out....apparently that is a common symptom of someone treated with thyroid hormone😐...so would you suggest that both my ft3 and ft4 should be a bit higher in range?

So maybe i should try 112 mcg of t4?

Thx😊

[JOLLYDOLLY in reply to Gardenofeden]

Hiya,

It might be that you need it. But I am not that good on working out the charts/ranges myself. My cousin, is 5ft 10in and about 10 stone. She does not have the tummy problem, which is quite common with thyroid disorders, especially underactive. I have always had a tum, even at my slimmest many moons ago.

If I was you, I would check it out as everyone is different. Perhaps one of our friends can be more specific.

I was told that at 5ft 2in, 9st 4lb (130lb) is the weight I should be (I wish).

I can dream I guess

[Gardenofeden in reply to JOLLYDOLLY]

I looked and felt my best at about 115-118 lbs many moon ago hee hee😁...but that was when i was 30 yrs young...now i am 45 yrs old...2 sons that are pre-teens so obviously my metabolism needs are much much different😢

Does you cousin still have her thyroid gland?

[JOLLYDOLLY in reply to Gardenofeden]

Hi,

Yes she does, but she has always had a thyroid problem like me. But unlike me in another way, her condition was not detected until she was one, I was 5 weeks old when my condition was diagnosed.

My cousin was lucky that it didn't induce any mental disability. She is now 63 and married, but was unable to have a family. Such a shame, because she is a beautiful person inside and out.

I fully sympathise with you. I am now 54 but was around your age, when my girls were teenagers. I agree with the fact, we all need our strength especially if we have a family to support, especially when they are approaching a venerable age in their childhood

[Gardenofeden in reply to JOLLYDOLLY]

Oh that is sad for your cousin!!!!

One thing's for sure about this entire thyroid meds thing is theres no one size fits all...thats what makes it so frustrating for doctors and patients. There needs to be much more extensive reasearch!

That would be verrrry helpful and appreciated!

If the docs could be more open-minded about it all.

So so frustrating!

[JOLLYDOLLY in reply to Gardenofeden]

I totally agree. They categorise and not individualise. You are right, everyone is different. It is like with any condition or illness, we cope differently and react differently.

The trouble is most dr's I know, are not open minded, they go by text book theory. Invariably they also apportion the blame on the patient and lifestyle, rather looking at the evidence in front of them.

Very sad and very frustrating

[humanbean in reply to Gardenofeden]

Your Free T4 and Free T3 should be wherever in the range they need to be for you to feel well. If that is mid-range rather than higher, then so be it. I wouldn't worry about it. You'll definitely have fewer problems with doctors than many hypos do.

[Hidden in reply to Gardenofeden]

That is interesting because I am beginning to wonder about that myself...I have been on NDT for years, and seem unable to get my FT3 levels (which are said to be most important on NDT) up where they "should be" according to many without some accompanying unpleasant hyper symptoms, so I am beginning to wonder if in fact I feel best on mid-range FT3 levels and FT4 levels closer to the lower normal range...my TSH is completely suppressed (<0.01) which seems to keeps my antibody activity down (as soon as my TSH is above 1 antibodies seem to flare up).

[Ransom]

I had RAI for an overactive thyroid when I was in my early thirties. The dosage was fine for decades, with a minor upward adjustment. Then in my fifties it stopped being so good - a slight upward adjustment of half a 50mcg tablet upward or downward did not help. Subsequently I found that a dosage of T3 worked great, with a smaller amount of T4. It depends on how YOU respond to medicine, Gardenofeden, as we're all different. Also, if your adrenals aren't what they should be, your thyroid will also not function properly.

[Gardenofeden]

So F t4 to F t3 ratio should be approximately 3:1??

Thx

[Gardenofeden]

My endo doesn't prescribe NDT here in Canada unfortunately.

Regarding t1 and t2 it is interesting to me as i have read that they are simply byproducts of the t4 conversion to t3...even read that on a forum which promotes NDT...but of course there's those who say t1 and t2 do serve a purpose....again...so much conflicting information on this subject...we are all so different in our chemical make up...no wonder why some swear by one treatment and others swear by another.

We all have to figure out our "personal sweet spot" i guess😕😕😕

[Gardenofeden]

Ok thx!!!!😀😀😀

Also.could you pls post your hubbys thyroid results...including tsh ft3 and ft4...just curious if his ft4 is lower in range and ft3 is higher in its range....also curious if his tsh is less than 0.01....thx so much

[Hidden]

I can only tell you what I know, and this has always surprised me.

I have a colleague who went through a total thyroidectomy about 10 years ago, and was put on T4 drugs right after the intervention. She is now on 125 mcg daily, has been for years, and is doing absolutely fine. She has no symptoms of hypothyroidism whatsoever, has never put on any weight, and lives a completely normal life.

That has always surprised me because that has never been possible for me, although I "only" suffer from Hashimoto's thyroiditis. But I have never done well on T4 drugs only. I have survived, of course, and managed to go through life while on T4 only, but never felt completely recovered.

I cannot explain it, but I know for a fact that it is possible to live a completely normal life on T4 drugs only.

[Gardenofeden]

Thx anna....i too was immediately hiven 125 t4 after my thyroidectomy that was 16 yrs ago!...could u pls let me know your friends height, weight and age?

I am 45 yrs old...125 pounds and 5'2" tall...thx!😊😊😊

[Hidden in reply to Gardenofeden]

OK, I hope I got this right as I needed to convert these figures; if I got something wrong, please let me know (just in case, I included cm and kgs):

weight 63 kilograms or 136 lb

height 172 cm or 5.7ft

age: 52 years (no conversion necessary

[Gardenofeden in reply to Gardenofeden]

*given lol

[Hidden]

Reallyfedup123,

Is your husband happy with Erfa?

[Gardenofeden]

Great thx!!!

If you could also find out her tsh, free t3 and free t4 results too that would be great...oh and their ranges.

When i was on 125 t4 only, my results were:

Tsh: less than 0.01

Free t3: 4.7 (3.5-6.5)

Ftee t4: 25 (10.0-25)

[Hidden]

True. I often wish I had had my thyroid levels tested when I was healthy, instead of when doctors started to suspect a thyroid problem...because I have no idea what my levels looked like before my thyroid failed due to Hashimoto's.

My FT4 levels on 7(!) grains of Thyroid-S are 0.9 ng/dL (ref 0.8-1.5) and my FT3 levels 2.9 pg/mL (ref 1.7-3.7). Does that sound like Thyorid-S is not working for me, or that I might need more than 7 grains...?

Is your husband happy on Armour?

[Hidden]

Ferritin 84 ng/mL (ref 10-205)

vitD3 36 ng/mL (ref>30)

vitB12 632 pg/mL (ref 189-883)

I find it difficult to find a good iron supplement. In the past, I was on prescription drug Losferron, but it never did much for me. I am currently taking Biovea's Iron.

When I had labs, I had been off Medrol for adrenal fatigue for five months. I also take blood pressure medication (was diagnosed with high BP, 170/120, back in 2013, and have been on meds ever since. BP now normal).

[Hidden]

Sorry, could you please recommend a good liver product? There are so many products out there and so difficult to know what works well and what doesn't, so any recommendation (from you or other members) would be most welcome!

I have a prescription for Erfa (from a Belgian Hertoghe doctor) but have been told Erfa no longer works as it used to...given the price of NDT drugs in Belgium, I'd hesitate to order it unless it is now working better again.

[Theresa72]

I have so many symptoms Hannah I am taking Levothyroxine 75 my TSH right now is 0.971

ft3 2.7

T3 total 8.3

Ferritin 32.5 2014