What are the numbers : Is there any info on... - Thyroid UK

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What are the numbers

Gcart profile image
15 Replies

Is there any info on numbers of thyroid patients who have recovered on T 4 alone ?

I look at some I know who are and still complaining of symptoms I would attribute to under medication .

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Gcart profile image
Gcart
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15 Replies
SlowDragon profile image
SlowDragonAdministrator

I have yet to meet a patient in real life on just Levothyroxine who actually feels 100%

Many, especially when questioned, have peripheral neuropathy, dizziness, fatigue, weight gain, low vitamin D, anxiety, depression, Anaemia, type 2 diabetes ......etc etc

marsaday profile image
marsaday in reply toSlowDragon

I do well on t4 but I think the condition has a lot more going on as we know.

SlowDragon profile image
SlowDragonAdministrator in reply tomarsaday

I thought you also take small dose of T3?

marsaday profile image
marsaday in reply toSlowDragon

I did but i don't anymore. Been off T3 since the beginning of the year off and on and now full time off for about 4 months. I don't miss it at all. I have also lowered the T4 down to 112.5 per day and that has really made a difference. I need to get some bloods done really to see where the TSH is because i am thinking the body has found its sweet spot with regards to T4 coming in optimum conversion going on with a good TSH. TSH was always at 0.3 for the last few years.

jgelliss profile image
jgelliss in reply tomarsaday

marsaday

If one still has their thyroid intact they might just do very well on T4 only . And some even with thyroid might need a tiny dose of T3 added to their T4 . For those of us who had TT and our thyroids no longer make T4 T3 we now have to manually supply T4 and T3 to make us feel wholesome to be able to function . After my TT I did well for a while on T4 only . But as time went on I was doing awful on T4 only . My Dr's raised my T4 only to feel worse . Having palpitations , sweating and being hot all the time , insomnia , weight issues , panic attacks , jaundice and more . Having some NDT for my T3 added to a much lowerT4 made a great difference . We all have our different needs .

marsaday profile image
marsaday in reply tojgelliss

Agree totally but t4 gets a bad reputation and many people do fine on it. Those who have a TT are very much a minority of thyroid patients.

I think nth over t4/t3 works even better for these types of patients as you have found out.

jgelliss profile image
jgelliss in reply tomarsaday

marsday

I totally agree with you . T4 has a Very Valuable and Beneficial hormone for many of us with hypothyroidism whether from thyroid insufficiencies or having had TT . Without doubt . Personally I need T4 for my brain juices . But T3 is Very Valuable for many of us that don't convert T4 to T3 sufficiently .

Gcart profile image
Gcart in reply toSlowDragon

Exactly what I find when talking with them. .

in reply toGcart

maybe we could do a survey. I think I have met people doing well on levo.

ZippyAppletush profile image
ZippyAppletush in reply toSlowDragon

Hi SlowDragon, I can hand on heart say I felt great at 250mcg. My life since late early 2010 and enforced reduction is another story, but up to that point I had been doing well. I do admit I had no other source to compare to as I knew no different, no-one else in my close family with the disease. I had no reason to doubt my doctor and when I chose to watch my weight I lost comfortably on 5:2. My routine bloods were normal for diabetes and cholesterol.

I’m finding out so much more now, but if anyone were to ask me back then I would have happily said I felt wonderful.

bantam12 profile image
bantam12 in reply toSlowDragon

As I have said many times, I am well on Levo, I do have low vitd, always have and always will but it doesn't cause me any problems.

I don't understand the need to know how many people are well on Levo or the need to prove them wrong.

Gcart profile image
Gcart in reply tobantam12

One is curious , no more than that

helvella profile image
helvellaAdministrator

One of the very common stories here, and elsewhere, is of people who have been fine on levothyroxine for years, sometimes decades, who turn some sort of corner and then need something else.

There has been much speculation as to why but, so far as I am aware, it is just that. Speculation. However interesting, however many thoughts it gives rise to, I know of no explanation thoroughly grounded in evidence.

I believe if someone is still having and complaining of symptoms they are not recovered. Their doctor may tell them they are because their labs are in "normal range", I also believe we don't 'recover' from thyroid diseases. We can be controlled , asymptomatic and feel well on the proper medication but we don't recover. Stop the meds, restart the symptoms. Just my opinion.

silverfox7 profile image
silverfox7

I started my thyroid journey on NDT but I strike meant I went o et to T4 and I was pretty good on that as well for quite awhile. I'm not good at noting dates but wold say a good 20 years then things went pear shaped, I blamed the menopause and then went back to NDT!

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