just curious- anyone doing well with just T4?

[Duckydoodle]

A couple posts have me pondering this question so thought I would ask!

[SeasideSusie Remembering]

Plenty! And if they're doing well they won't be on here, they will be getting on with life 😊. The forum tends to be more for people who have problems due to their doctors not understanding how to treat properly!

[Duckydoodle in reply to SeasideSusie]

Makes perfect sense. TY for the reply.

[Sparklingsunshine in reply to Duckydoodle]

Hi

Yes please don't be put off, there are millions of people on just Levo, thyroid hormones are one of the most widely prescribed medications in the World. They aren't all members of TUK lol.

We tend to be people for whom Levo hasn't worked, whether we're not on enough, due to doctors not understanding how the thyroid works, or malabsorbption issues or often conversion from T4 to FT3 being poor. In my case both my thyroid hormones remained low no matter how much Levo I took. I'm now experimenting with using NDT instead.

[Charlie-Farley in reply to SeasideSusie]

Hi SeasideSusie hi Duckydoodle

I’m on here!

I’m not going anywhere 🤪👍 just levo and doing well- down to finding this forum relatively early after diagnosis. Journey has been recorded in my profile - happy to answer any questions. I have a lifetime of gratitude that will keep me in the forum and learning about thyroid issues now.

[Buddy195 Administrator]

Yes, the majority of people diagnosed with an under active Thyroid do well on Levothyroxine, when thyroid medication and key vitamins are optimal.

[pennyannie]

Hello Duckydoodle :

I think I read somewhere that around 90% of those diagnosed hypothyroid are fine and well on T4 only medications.

Within that 10% you likely find those dealing with a thyroid AI disease, those who haven't a thyroid for one reason or another, others suffering thyroid hormone resistance and those with the a gene malfunction which inhibits the body's ability to convert the T4 into T3 which is the active hormone that runs the body.

and I'm sure I've missed a few other reasons - apologies to those people :

[Gingernut44 in reply to pennyannie]

If I was the gambling sort, I’d bet it was more than 10%. How can “they” know what the percentage is when so many are self medicating and have given up with medics?

[pennyannie in reply to Gingernut44]

Well of course - depends which fairy story and crystal ball you are looking into at any given time :

However having a bet when hypothyroid can seriously damage your bank statement !!!

[Gingernut44 in reply to pennyannie]

Well, most of the doctors I’ve had dealings with (I can’t say “seen”) re thyroid have all used their crystal ball and told fairytales.

[pennyannie in reply to Gingernut44]

Probably reject stock from a circus :

[Clairewalker751]

I know of a few people on levo only, they don't feel well however blindly follow the GP I've signposted many to this forum but lots of people don't investigate?

[Charlie-Farley in reply to Clairewalker751]

Hi Claire,

coming in late on this conversation but yes I have spoken to people who know they are being mismanaged but won’t even ask a pertinent question let alone challenge- heart breaking.

[SarahJane1471]

I’m on Levo only since June 2021. I feel much better than I did before starting but still have lingering symptoms of fatigue despite under range TSH and not very good FT4 &FT3. I was sub clinical and put on Levo as a trial. I can’t afford private Drs or prescriptions so have to stick with Levo only. I wonder how many others not on this forum are like me, stuck in limbo 🤷‍♀️

[arTistapple in reply to SarahJane1471]

Me too. However I will be self medicating soon. Endo will not see me. I understand that, from their limited point of view. I agreed to do a sleep apnoea test because of the fatigue. Beware of this kind of ‘help’ from your GP trying to find a reason for your fatigue when you are HYPOTHYROID! Now I might lose my license.

[Timetraveler67 in reply to arTistapple]

I did the sleep test and they gave me a machine to take home which was absolutely awful the mask left welts in my cheeks and I ended up returning it as I couldn’t cope using it anymore. You can buy lightweight machines and masks but I can’t afford it. You may not lose your license it depends how many times you stop breathing during there sleep test. Please let us know how it goes I wish you all the best x

[montieth]

Yes, on levo and seem to be doing well. Did follow recommendations made by the experts on this site to get iron, Vitamin B and D optimal. Also upped the exercise and better nutrition. Had to give it time though. It took a few months after partial thyroidectomy.

[Timetraveler67]

I think it’s possible to feel well on levo only as I know people around me who I chat to that tell me there fine. But these people have low thyroid not autoimmune thyroid disease so I presume this must make a difference ( but I’m only guessing). Myself ( autoimmune) and I’m not doing that well but I live in hope x

[Sparklingsunshine in reply to Timetraveler67]

Hi

I don't know why my thyroid failed, all my antibody tests were negative. I suspect its been sub par for a number of years as my TSH has always been high but in range. However I've never done well on Levo, despite being on 150mcg my FT4 and FT3 never got above 50%. Its only since I added NDT that it's pushed my levels up.