Next Endo Meeting, T3...

[ErraticAspie]

I am going to ask my Endocrinologist for a trial of T3 at my next meeting, as it was suggested by them at my last meeting that if my last dose change didn't help, they would recommend a trial on the basis of significant persistent symptoms. What should I know about this, and what questions are wise to ask them. Thank you in advance.

[greygoose]

I should think the most important question is: how do they feel about a suppressed TSH? Because if you're going to take enough T3 to make you well, then that's what's going to happen.

[Alternatively]

It was interesting to read your post ErraticAspie as I too am about to ask an Endo that I’m seeing privately next week for T3 medication.

My TSH is O.31

FreeT4 is 29.50

Free T3 is 4.2

I’m currently taking 75mcg Levo.

I’m hoping it’s going to prove the magic bullet and I will lose my hypo symptoms once on it, but at the same time I’m a bit nervous of starting the T3 medication, is that how you feel?

I’m also worried about my TSH level becoming surpressed when on T3 because I don’t know what symptoms I may feel if this happens, or if it’s bad for the body or if there is a danger figure that you mustn’t fall below? 🤷‍♀️

So much to learn isn’t there!!

[crimple in reply to Alternatively]

Alternatively your T4 and T3 results, even without ranges (figures in brackets) show you are a poor converter. T4 is a storage hormone and your body has to convert T4 to T3 which is the active hormone. I had the same issue when diagnosed as hypothyroid. Thanks to this site I learned about the "conversion" issue and now take T4 100 mcgm and T3 15mcgm each day and I feel much better. My TSH has been 0.005 since 2015, before I started taking T3.

The only problem with a below range TSH is that most doctors are very unhappy about it and will tell you that you are overmedicated which is not the case if your T4 and T3 are in range. I was lucky that my endo understands this and my GP accepts that my TSH is always below range.

TSH is a pituitary hormone NOT a thyroid hormone. I told a locum doctor who had seen my latest NHS blood test results that I preferred a life to an existence!

My latest medichecks test results prompted a message from their doctor to contact my GP as I was "overmediacted" TSH 0.005!!! needless to say I shan't be bothering and must remember to turn off DR comments before my next test.

Yes there is a lot to learn and this site is great for help and info.

[Alternatively in reply to crimple]

I really appreciate your reply crimple, it helps so much for me to learn how others have navigated this poor conversion problem!

Could I ask you, now that you are established on your T3 medication with Levo, do you have any hypo symptoms at all now?

Also, is your TSH level at 0.005 classed as ‘suppressed’? What do GP’s fear about it being this low? …… That it will cause you other symptoms or that it is damaging to your body in some way, or?

My first Endo appointment is on Wednesday and I want to go there well informed, so I’m currently like a sponge, soaking up information!

I agree wholeheartedly crimple, this site IS amazing, and I’m so grateful for everyone that gives up their time on here to reply to others seeking answers to their conditions. So kind.

[crimple]

Alternatively, I feel much better since the addition of some T3. My worst problem was terrible brain fog. I really couldn’t think properly. I thought I was getting dementia. I also had raised TPO antibodies, which are back in range as I eat a Gluten free diet and I also avoid lactose in milk and cream. I am fine with butter, yoghurt and hard cheese.

I used to suffer with palpitations regularly, not severe but unpleasant and also pulsatile tinnitus, hearing my heartbeat . These stopped once on a good level of T3. also my cholesterol was raised and kidney function down to 58% known as AKI, acute kidney injury. My cholesterol came down and GFR rate went up to a much better 78%.

Doctors who only look at TSH levels will tell you that below range TSH will lead to heart attacks and osteoporosis. These are issues that you are more likely to suffer with if you are genuinely overmedicated with too much T3 or suffering from Graves’ disease, overactive thyroid.

Even with my medication levels in a good place, I rarely feel one hundred percent, but I did get my life back . I can still run out of energy, literally as though my battery has gone flat and too much stress, usually family related, is not good for me.

It is important to keep Vitamin levels good for VitD with K2 and B12 and folate. Others on here also need good ferritin and iron levels. Fortunately my levels for iron and ferritin are always good.

There is more and more research showing the importance of the gut biome, as per Tim Spector of Zoe. Since I have already had over 20 years of diet restrictions ( GF , lactose free, no chicken, eggs, soya or coconut advised by an allergy consultant after doing an elimination diet.) I don’t follow Zoe diet strictly, but have upped my veg intake, always eaten loads of fruit, nuts, seeds and never eaten a lot of sugary things. The gut brain axis is very important..

Just going back to TSH which is a pituitary hormone telling your thyroid to produce more hormone. So once on a good level of medication why would your pituitary need to keep signalling to your thyroid to produce hormone when your medication is supplying what your body needs?

I find it truly shocking that so many thyroid patients are treated by their TSH number and no one ever looks at T4 and even less likely to look at T3 which is the most important. They don’t seem to have any understanding of what exactly the thyroid does☹️

I do hope your endo consultation goes well. Let us know how you get on 🤗🙂

[Alternatively in reply to crimple]

Thankyou for sharing your symptoms with me Crimple. Oh, you had horrible symptoms before you started on T3, but it’s great to know you are so much better now, although it must be very annoying when you run out of energy, I haven’t had that happen too badly…. yet!

Yes, up until recently I’ve just accepted that what my GP told me must be correct, but will always be delving deeper from now on, checking.

It would have scared me into submission if I was told that I would get osteoporosis or heart problems if my TSH fell further.

I am saint-like when it comes to my food intake, no empty calories especially lately, but have dropped the ball with my Ferritin and Folate.

Fingers crossed he’s a good Endo, will definitely post how my consultation went! 🤗

[ErraticAspie]

Thanks to all for your replies. I recently had bloods done (100 mcgm of Levo) and and had these results

TSH: 2.1 (0.27-4.2)

Free T3: 5.4 (3.1-6.8)

Free T4 16.4 (12-22)

So, on my very, very naive understanding, I don't have a very obvious conversion issue, but I am still very symtomatic. When I was on a higher, 125 mcgm dose of Levothyroxine, I felt incredibly panicky, and developed a shake from my trunk (without any relief of brain fog symptons, I had these numbers-on same refernece ranges). TSH: < 0.03, Free T3: 5.97, Free Thyroxine: 27. After coming down from this dose to 100mcgm, I felt the best I had since Thyroxine for a period of 2 weeks, able to read substantial material again, not so panicky, memory feeling better, etc, before this vanished and the situation returned to normal. What caused this I don't know. I am worried about going on T3 if there is no clinical need, but no T4 dose I have had has made me feel sustainably better.