Hypothyroidism and levothyroxine treatment only inadequate?

[DandyButch]

I had a bad experience on levothyroxine only. I am now on T3 but not optimal yet although much better than I was on the levo.I had to go to hospital appointment regarding my dupuytrens contracture, and the doctor, who was going through my medications list, asked why I wasn't on levothyroxine. I told her why, and she said it was very rare for this to happen. I disagreed with her, but she insisted she was correct. I even mentioned this forum.

It cannot be that rare if so many on here are not tolerating levothyroxine only, and many are self-medicating with liothyronine or NDT.

Please tell me if she is ill informed, like most of the medical profession regarding hypothyroidism treatment.

Any thoughts please?

[Lalatoot]

Dandy I think that 80%of folks on levo are able to just get on with their lives.We are the 20% on here.

So yes the majority manage fine on levo

[Sparklingsunshine]

Millions of people in the world take Levo, its one of the most widely prescribed medications, and yet there aren't millions of members of forums like these.

So my guess is a lot of people do ok on Levo only or dont know there are alternatives like T3 and NDT. Doctors lull us into thinking hypothyroid is an easily treatable minor inconvenience, just take these little white pills and you'll be fine.

I also think that as thyroid problems often hit in middle age a lot of us put our ongoing symptoms down to other causes, like the menopause, stress, other medical conditions or just part of the ageing process. We are the outliers on here as we aren't prepared to "settle".

[SlowDragon Administrator]

Even if it’s only 20% of thyroid patients that don’t do well on levothyroxine…..with 2 million people in U.K. on levothyroxine that’s at least 400,000 patients in U.K

Personally I think the figure is far higher than 20%

I know at least 20 people from my circle of friends and family who are on Levo. The only one who is 100% well is in her 90’s …..been on replacement thyroid hormones decades and initially started on NDT back then…….and even now is on much higher dose levothyroxine than she would get if diagnosed more recently

[DandyButch in reply to SlowDragon]

Thankyou for that. 👍

[Sophie4506]

Majority can manage fine on Levothyrox, though many others alternatives do exist (T3 only, T4 only, combination of both ...). We all react differently to some medications and many other factors can also play an important role (vitamines, nutrients deficiency, weight ...). Sadly some endo just rely on Levo and TSH level to make their diagnostic, when from opinions of GP en endocrinologist as mentionned, several others factors have to be taken into account. I've been on Levothyroxine for 6 months post-surgery and I didn't tolerate it well. I switched to Tirosint since 2 years. Not ideal yet, but we're closer to a great state and I experience far less side effects on Tirosint than Levothyrox. (Forgot to say that several T4 medications exist, with different excipient which can also impact T4 absorption and the way we react to those medication. Tirosint for instance just has glycerin and water when Levo has.way more excipients). Lastly, I don't know what are your levels in TSH/T4/T3, but if it can help, I noticed that taking my Tirosint prior to go to sleep, on an empty stomach ( i try to eat at 7pm), I feel better and I experience less variation of energy, which I used to have, when taking Tirosint in the morning

[humanbean]

It cannot be that rare if so many on here are not tolerating levothyroxine only, and many are self-medicating with liothyronine or NDT.

The problem with the beliefs of the medical profession with respect to Levo is that they see the successes. They rarely believe the failures, and might not often see the failures.

Anyone treating themselves, whether with Levo, T3, or NDT in any combination, might decide not to see their doctor about their thyroid at all.

[DandyButch in reply to humanbean]

Hi humanbean,Well, it was only from reading people's experiences on this forum, that I became aware of the many people who have to self medicate because of the limited care available within the NHS, and the medics lack of knowledge about thyroid. People give up and go it alone, or private. These are not included in the official data.

[Shaz26]

hi I take Levothyroxine 0.112 mg 6 days a week. I started having anxiety so my doctor suggested to skip one day. I do get very tired sometimes after I got my thyroid gland removed. Your doctor can adjust the dosage maybe,check with him/her.

[DandyButch in reply to Shaz26]

Hello Shaz26This is the problem....

I am under an endocrinologist whom I last saw in October this year. My next appointment is in February 2024.

After my last appointment I posted the increase in medication (liothyronine only)

on here and was justified by responses that the irregular increase was not right.

I emailed the endocrinologist via the endocrinology dept on 16th October. I have telephoned them repeatedly since then, but all they say is that they will send it to her again. I didn't want to wait until February for it to be adjusted, but seems as if I will have to.

[Shaz26 in reply to DandyButch]

I suggest see a naturopath in the meantime because endocrinologist appointment will take longer than a naturopath. I was in the similar situation and naturopath really helped me. Hope that helps.

[DandyButch in reply to Shaz26]

Funnily enough, I have received a reply from the endocrinologist today.Basically, she agrees with regular, even, dosing of Liothyronine and she will speak to pharmacy and phone me this week.

Here's hoping....