Quick Question

Is there anybody on this forum that feels totally well on Levothyroxine only? i.e No fatigue/No weight gain etc

[SeasideSusie Remembering]

I think that the majority of those who feel totally well on Levo wont be on a thyroid forum seeking help, they'll be living life to the full

[Hidden in reply to SeasideSusie]

Yes, you're probably right

[Charlie-Farley in reply to SeasideSusie]

Hi  Hidden Hi SeasideSusie

I’m hanging about on here as an example of someone doing ok! All on my profile 😊👍

Also hanging about because I have noticed a glaring lack of training on basic scientific principle and Drs inability to interpret blood tests - so chip in when I can to alert people.

Also hanging about to warn people about relying too heavily on patient access and how important it is to get printouts and keep your own meticulous records. My patient access has been more doctored than me.

Also hanging about as an example of someone who argued their way to an optimal dose of Levothyroxine.

All on posts and bio. 😉👍

[Brightness14]

I do know of a friend with no Thyroid who feels well on Levo alone. She is a little younger than me at 71 years old, still working her own plant nursery and growing all her own plants.

She also does plant sales and markets too. She would not be on the forum though.

[Brightness14]

I do know of a friend with no Thyroid who feels well on Levo alone. She is a little younger than me at 71 years old, still working her own plant nursery and growing all her own plants.

She also does plant sales and markets too. She would not be on the forum though.

[App1]

This site is a godsend to the recently diagnosed who can learn from the experience and expertise on the learning curve.

[Hidden in reply to App1]

Yes, I've been on this site for sometime, and diagnosed since 2004. I started on Levo, became pretty ill on it. Also, tried Levo/T3, T3 only with ill effects, and NDT which had been the best for me until recently. Thought I'd try Levo only again, but my ill symptoms are back. I was hopeful after years of being off it, it might suit this time around. No luck. Seems like the successful Levo takers are not having to spend time grappling their condition. Envy is a wrong state of mind, but when you feel like crap whatever you take, it's hard not to envy the success of others healthy state with the same condition.

[arTistapple in reply to Hidden]

I always think an honest owning up to envy is a good and healthy observation of one’s own behaviour. Why on Earth would we NOT envy someone getting better? Not being open about envy is where it all goes wrong. Then envy can be more correctly described as jealousy; it becomes personal. Jealousy tends to be secret and both self damaging and damaging towards others. Envy tends to be about ‘things’ people are perceived to have: relationships, health, wealth, cars, houses etc. Jealousy is quite a different sense of being and usually includes hidden envy issues. This forum gives us the opportunity to be envious of others wellness and hopeful for our own. Sermon over.

[SarahJane1471 in reply to arTistapple]

I’m envious of people who are well 🙋‍♀️I’ll own up

[Partner20]

I have family members and friends who are hypothyroid who manage their condition successfully solely with levo. Usually the discovery that they are hypothyroid like me comes as a surprise, because they have no symptoms and they have no concerns about their condition. Even when my levels are optimal, I have certain symptoms, but, like my partner, who has non-autoimmune hypothyroidism, any symptoms I have are due to other conditions. Most groups like this are not sought out or posted on by those whose treatment has proved successful for them.

[Hidden in reply to Partner20]

Yes, I'm gathering that. My mum takes it, has bundles of energy for 83, apart from being overweight (not hugely), she feels absolutely fine. She has more energy generally than me as fatigue is an issue for me and just lately crippling headaches which are meds related because when I come off them, I feel 100% better. The trouble is, if I go too long without anything, the fatigue starts to creep back. I only thing I haven't tried is Armour because I can't afford it.

[DippyDame in reply to Hidden]

They will be getting on with life since they feel well!

Are you saying that you stop and start your levothyroxine? Not a good idead!

You appear to have been taking different thyroid medications

Headaches are a symptom of overmedication

Is your FT3 within range? ....it was over range in a set of labs you posted

Have you tested Vit D, vit B12, folate and ferritin....all need to be optimal to support thyroid function.

[Hidden in reply to DippyDame]

DippyDame. It's quite confusing as some literature says that undermedication is a cause of headaches and is a hypo symptom. All very contradictory I find when it comes to interpreting symptoms. My T3 has been very slightly over range and T4 mid range for a while but with NDT that's supposed to be optimum with T3 on the upper range. Even my NHS GP thought that was OK. I have only just re-tried Levo and Levo/T3. It was suggested that I could be pooling FT3 and to try T3 only, but every time I went up a tiny dose starting on a tiny dose, a severe headache starts as with everything I'm trying. My vitamin tests were ok previously.

[DippyDame in reply to Hidden]

It can be very confusing and medics are not always au fait with thyroid disease/ medication beyond the absolute basics.

I wonder if you have a form of Thyroid Hormone Resistance where the available T3 is not being adequately transported to the nuclei of the cells by T3 receptors. T3 only becomes active in the nuclei.....if it remains in the serum this will show as FT3 and will just slosh around in the blood until it is metabolised and eventually excreted.

This is my problem and I need a high dose of T3 to overcome the resistance. My FT4 and TSH are rock bottom while my FT3 is well over range. However, this high dose could be dangerous if RTH does not exist. I self medicated and experimented on myself

I followed the work of the late Dr John Lowe....see link

healthrising.org/blog/2019/...

it's all in my bio...

Nothing is "supposed " to be optimum, ....optimum is where you feel better!!

I'm sorry I can't comment on the headaches....but it may be that you need to work through them to find your dose.....provided your GP has checked that nothing else is amiss

[Hidden in reply to DippyDame]

Yes, thank you. Appreciate the info.

[SlowDragon Administrator in reply to Hidden]

How long since you last tested vitamin levels

What vitamin supplements are you currently taking

[Hidden in reply to SlowDragon]

Vitamin D with K2, B complex, C, Zinc and I need to restart iron although it was classed to be in normal range, as with B12

[Lotika]

As others have said, I'm sure they don't hang out here!

I know 3 people who are very well on levo only. My husband is one of them. His conversion is a thing of great beauty. In his case, they should test T3 because he almost converts T4 too well, so his fT3 is sometimes fractionally higher through range than his fT4, so he's the poster child for T4 monotherapy!

[woofa27 in reply to Lotika]

Yey for your husband!!! That pleases me greatly that someone is doing so well on t4 monotherapy.👏👏👏

[Charlie-Farley in reply to Lotika]

I do! I can see the need! I owe a huge debt of gratitude to this forum. I want to help where I can - argued to full replacement dose whilst in range and TSH dropping. Got to keep help others battling even if sometimes it’s only a virtual hug I can offer 🤗

[Hidden]

I found out that I don't convert brilliantly so I tried NDT. I did ok on it for a number of years, but started with a horrendous pressure headache with my last batch. This is why I've been trying Levo and T3 as I don't want to get back to issues with MonoLevo I had when I was first on it at the point of diagnosis.... Weight gain and fatigue. It must be all down to the ability to convert well.

[Charlie-Farley in reply to Hidden]

I’m a mono but reading lots of lived experience on here I would agree with you.

[jrbarnes]

Well, I'd say I was able to live life and function normally on levo for the first 6 years but perhaps it's because I didn't know any better. Looking back now I still had symptoms. Some time around 2016 things started to really go downhill. I was 36 at the time. The same therapies may not work forever. The only people I've met that say they do well on Levo have been those with thyroids removed due to cancer. Most of the people I meet who take Levo say they're always tired. Haha also agree I didn't come to this site until I had problems and was busy living my life.

[Hidden in reply to jrbarnes]

Yes, it certainly is a rollercoaster journey this thyroid malarkey. Considering how many people have issues, there should be a lot more research, affordable treatment options and money ploughed into trying to make people well.

[Charlie-Farley in reply to jrbarnes]

I’m not but had to get to a suppressed TSH for no symptoms. Most doctors treat the lab work and keep people hypo because they are pretty clueless- simply not trained then pick up bad habits from other doctors who are……. You guessed it- not trained 🙄

[arTistapple]

Like other replies I am certain people satisfied with their treatment will not be on, or seek out this forum. However I am becoming more aware of people with thyroid issues since being diagnosed myself. I ALWAYS get into conversation with them, as I am curious to find out what is going on for them. So far I have not met ANYONE who is satisfied with their treatment! Both hypothyroid and hyperthyroid. People don’t know or think there might be something else they can do. Even worse is “The doctor says I am fine”. Well I have no intention of taking their case on but I always indicate that other info is available. I know lots of these people will not do anything and I am in no fit state to actually help. A proper assessment of patients treated for thyroid issues and getting a real figure on the discontent is unlikely when medics are already overwhelmed by the numbers. Just raising the issue with patients probably terrifies them, so they ‘appear’ blissfully unaware of the reality of the situation. However do you know what? I think there is nothing blissful about it and many medics will be uncomfortably aware that their patients are not happy with their treatment or indeed their medics efforts. No doubt the lousy treatment is contributing to GPs leaving the NHS in droves. It takes quite a thick skin to ignore cries for help.