Levothyroxin

[jan95]

I have been on levothyroxin for many years now, 100mg a day, it works for me and I haven't had any problems with it. Obviously for some people it doesn't work as it does for me.

[Rapunzel]

It's great that it works for you! Allegedly, you are with the majority of people with hypothyroidism, held to be somewhere between 70-80% of those with an underactive thyroid who thrive on levo.

Don't you find it strange that if you do suffer this condition, levothyroxine is the only replacement hormone many doctors (and some shameless endocrinologists) claim to know anything about? I was told take this tablet and you'll feel better. You did. I freaking didn't and it's nigh on ruined what I had previously hoped would be my golden years.

Can't begin to tell you what a disgracefully unsupported journey I've had, with the NHS. Without this forum, I could expect to be in a wheelchair by now... Without my own means, I would be unable to afford the alternative replacements I take. Together with the vitamin and mineral supplements I need, the blood tests I arrange as the NHS TSH test is insufficient, and then some.

I think you might find that the reason you've had no replies is that there is nothing for us to say, really, except - lucky you. We're well jel . Levothyroxine? It's like spam...

youtube.com/watch?v=anwy2MP...(Not working as expected?)

[jan95 in reply to Rapunzel]

I'm sorry you have had such a tough time, they only found out about mine by chance as I didn't have any symptoms as such, I jokingly just mentioned to my doctor that all the females in my family suffered from it and on of my daughter's had it very badly but I must of escaped the family trait. She suggested a blood test and that's when they put me on levo, I started off on 25mg but over time it's gone up to 100. I'm lucky apart from the fatigue that hits daily I don't suffer from any other problems. I do know that many people have it worse than me and have a terrible time getting the right treatments, there does seem to be a lack of interest from some doctors about thyroid problems although my doctor was very clued up on it.

[SlowDragon Administrator in reply to jan95]

I'm lucky apart from the fatigue that hits daily I don't suffer from any other problems.

Well fatigue is pretty hypothyroid symptom

[jan95 in reply to SlowDragon]

Yes it is but it's not that bad that it is debilitating, as I'm retired if I feel the fatigue coming on I just close my eyes and rest for a while. It doesn't affect my way of Life that much, if I can't rest then I work my way through it till I can rest.

[Sparklingsunshine]

I'm guessing Levo works well for many, since as busy as the forum is we dont have millions of members and its a medication widely prescribed. Those of us on here are the harder to treat cases, who have struggled to get well on Levo, for a variety of reasons.

I hoped Levo would work for me too, but in the nearly 4 years since I've been on it I've never felt brilliant and I've needed to add T3 to really benefit. Its so much easier ( and cheaper) if you get lucky first time and feel well on it.

[McPammy]

I never felt normal on levothyroxine alone. It was only adding liothyronine T3 as combined treatment that a I got my life back. I did the DIO2 gene test. My result was positive. I have a faulty gene which means I find it very difficult to convert levothyroxine T4 to the most important hormone T3. A lot of people on here have this faulty gene. NHS doesn’t recognise gene tests. I suggest they need to and properly understand what people live with. It’s a different story in other countries as they often treat thyroid patients better.

[Sleepman]

Thankyou for posting. I think it is extremely helpful to hear from people who are OK and take the time to share.

Are you autoimmune type?

When you say fatigue each day, can you tell us more?

How about your other family members were they ok? Any tips or tricks?

I wonder if finding out early has helped you respond to treatment better and meant you were less damaged.

I spoke to people on levo and most were ok when diagnosed 18 months ago. I now wonder if they just believe the propoganda.

My Mums health has been poor and I do mot think she has been advised well by NHS about thyroid. She has low T3, hardly had T4 measured and was worried if her TSH dropped under 2 based on doctors advice.

I am monitoring my children carefully.

I do not think NHS treat underactive thyroid well. Should test T3 and antibodies at the start. I had to push to get antibodies tested. Test celiac, test pernicious annemia B12.

I think there should be thyroid clinics just the same as l diabetes has.

They would save a fortune, as so many other health issues are just poorly treated thyroid problems it seems.

I had a phone call saying your underactive. It is life long and pretty easy. Take these tablets and we test again in a few months ...

[jan95 in reply to Sleepman]

I don't know if I'm auto immune, I don't seem to have other problems that go with it. My daughter has it really bad with many auto immune problems plus hasimotto and pernicious anemia, all my sister's suffer from it in various degrees and 1 has diabetes. The fatigue doesn't really affect me that much as I'm retired and can rest when I want. There should be more awareness in the NHS of thyroid problems as it affects so many people's way of life, I'm just lucky that taking my tablets works for me at present.

[Sleepman in reply to jan95]

Possibly not autoimmune but I do not know enough about it ?

From a post when you started 8 years ago :

Thyroid Peroxidase 35 Range 0-60. So in normal range ?? So OK ?

(click on your picture and you can see your posts)

Mine was TPO 82 in range 0 to 9 at my start 1 1/2 ago - way over !

- I was clearly very autoimmune. My TSH was 79 ! and I felt pants.

My brother is type 1 diabetic. Mum Colieac and Autoimmune underactive

Just had a retest as part of package

TPO 89 they did not give range. Monitor my health test.

"We do not report a numeric value below the cut-off of 35 imU/mL. The reason for this is that a large number of healthy individuals have detectable TPO in this range and it is just background ‘noise’. These low levels of TPO are not associated with thyroid disorders, can lead to confusion and in some cases the assumption that values in this range may be significant."

[Brightness14]

Do you have a thyroid?