Starting Levothyroxine

[stargazer62]

Hi there, recently I was diagnosed as being hypothyroid with possible Hashi's. I have just been started on Levothyroxine 50mg and donated to know if anyone has had positive results taking Synthetic T4. After doing lots of research and looking at various forums it seems that most people report negative effects after taking Levo. The endo I saw recently (private) said he did have a few patients on NDT but the vast majority of his patients had done well on Synthetic T4. He said that he would prefer to start me on T4 as it is becoming more and more difficult for the pharmacies to obtain NDT. He also said he preferred to treat his patients according to their symptoms rather than the blood test. For the last few months I have been working on my vitamin and mineral levels plus following the autoimmune diet which has definitely helped. Any advice would be welcome. Many thanks

[trelemorele]

I'd say you don't really have much choice if you're 1st time user.

Endos/GP will always start you on Levo 1st.

He's"experience" with taking/results Levo is irrelevant as he doesn't take it himself. He's data - most of my patient do well on Levo - is false. A lot of people self medicate (so he's got no data on those) the rest, on Levo, just plod as best as they can - this forum is full of those let down for years and discovering there's more to it.

Most (if not all) people don't thrive on Levo only.

You'd ask my GP - how is she doin on Levo for the last 10 years? The answer will be - great. Her bloods are ok-ish, she takes her prescription regularly. All not true if you ask me.

Having said that, s/he comes across open minded so possibly will be willing to adjust your meds I.e. add t3, swap to NDT if your symptoms don't improve in near future.

I'd say go with open mind for what you're offered, test bloods often and then question it, if the results are not as expected.

I personally tried NDT and it didn't work for me. I'm on t3 only now and see the light at the end of the tunnel.

[Clutter]

Stargazer62,

The majority of patients do well on Levothyroxine once they are optimally dosed. There is an estimated subset of 15% of patients who don't respond well to Levothyroxine and need the addition of Liothyronine (T3), T3 only or NDT to feel well. It's worth trialling Levothyroxine for six months by which time you will probably be optimally dosed. Make sure ferritin, vitamin D, B12 and folate are optimal too, low/deficient levels cause symptoms which are similar to hypothyroid symptoms.

If after 6 months you are still symptomatic then it may be time to consider adding T3 or switching to NDT. There have been shortages of NatureThroid, WP and Erfa for several months and that has been causing knock on shortages of Armour and Acella NP. It really isn't the best time to switch to NDT.

[greygoose]

Whether or not your endo has the slightest idea how well his patients really do on levo, is debatable. Doctors lie, patients lie. However, the overwhelming opinion is that the majority of people do well on synthetic T4 only. There are even a handful of people on here who will tell you that they do well on it, but are here for other reasons.

Just because it's synthetic, doesn't mean it's bad. For myself, I cannot tolerate T4 in any shape or form - synthetic or porcine. I can only survive on synthetic T3, only. In fact, NDT made me far sicker than levo!

We are all different, and the truth of the matter is : you won't know until you try.

[ontheotherhand]

I have been down the same path as you. I have confirmed Hashi's. You should get it confirmed by blood test for anti-thyroglobulin and anti-throperoxidase. It's great that your endo will treat on symptoms, but worrying to mention 'the vast majority'. Hashi sufferers are a minority type and should be understood separately. It's the equivalent of saying the 'vast majority' of diabetes sufferers need insulin whilst ignoring that there is an auto-immune type, and a lifestyle type.

For me, T4 made me feel slightly better, but eventually getting T3 is what worked for me instantly. What are your free T4 and T3 levels? It could be that you convert T4 to reverse T3. Forget about TSH.

The NHS quotes a study that showing little difference between T4 only and T4 plus T3, but the study was on a general hypo group, not Hashi specific who could be hiding in the error rate of the study. The NHS bought T3 from Drug company Concordia at a very high price and the Competition and Markets Authority has recently provisionally found that they have been overcharged.

So T3 is expensive for the NHS to buy, but also expensive to monitor. T4 is slow acting, whereas t3 has a short half-life. Ongoing endo or GP appointments to monitor the symptoms and bloods are much harder than cheap T4 and call me in 2 years.

[stargazer62]

Thank you for responding and giving your advice. I guess time will tell how I respond to the Levo. I will be sure to monitor my symptoms and follow the functional approach with diet and supplements. From my own personal experience I already know not to rely on the NHS as they will only do the minimum - plus from what I have experienced a lot of the doctors and Endo's are stuck in the dark ages. Many thanks

[Treepie in reply to stargazer62]

Levo works fine for me.

[jgelliss]

stargazer62 I was one who after my TT was dosed with high T4 for suppression purposes . I did not do well with it . However dosing with low dose T3 with the combination of T4 dose did the trick for me . It too a long while to figure out whether I needed more T4 with lower T3 mix or whether Higher T3 to a lower T4 . It's not one size fits all . To make a blanked statement that T4 is no good only T3 is incorrect and is not a true statement . It's very individual . Some do well on T4 only because the convert well . Some do great on T3 only . And some of us do great with combo T3 and T4 . Nutrients work well to make our thyroid meds work better for us . SeasideSusie is extremely helpful with nutrients and how to use them to the optimum . No dose is ever etched in stone . Reevaluating doses are always needed it . Between symptoms and lab results will make the deciding factor the dose that we need .

[silverfox7]

Remember the people who post on forums are people who have problems, often being undermedicated but many do very well on Levo, I did for nearly 20 years, so they don't need to post on here.