I would like to see a discussion of T4 & T3 Conversion. I believe I was dx with Hypothyroid and placed on Levo that made me sick.

[silverbelle51]

Out of the blue on a random PE lab I was dx with hypothyroid because of an elevated TSH. I had no sx and had been walking 2 miles 3 times a week, eating reasonably well no junk or fast food pretty much ever, not a big water drinker. After 4 3/4 years of feeling like how they describe amphetamine users feeling . I decided to wean myself off and notified the MD. Exactly 1 yr after starting Levo I was additionally dx with low grade elevated BP and placed on 2 additional drugs ( never ever before did I even have close to elevated BP). I have been working and investigating for the last 4 3/4 years to understand how I was so poorly dx. I admittedly was under intense business pressure for 12 years and had previously delt for intense senior care for another 12 years, both factors my PCP was fully aware. . My research has taken me to question why adrenal issues weren't looked into! High cortisol levels can affect both T4, T3 conversion. Just maybe adding additional T4 to that situation further affected me and caused the misery I was experiencing . Then there is selenium and iodine deficiency, but none of that was ever questioned or investigated. A T3 level was never checked! Did the levothyroxine that made me feel like I was on amphetamines among other hyperthyroid sx did it cause my thyroid to atrophy or do any other damage? Reading an article by a Dr. Osansky that discusses the T4, T3 conversion a bit got me to wondering. Anyone else with similar experiences. Is it just possible doctors are jumping to conclusions in stead of connecting the dots when diagnosing

[Jazzw]

Well… You present an interesting case. It’s actually quite unusual for doctors to prescribe levothyroxine on a one off TSH reading.

How much levothyroxine were you taking? I ask because it doesn’t sound like you were monitored very well.

And it’s worth keeping in mind that hypothyroidism can cause high blood pressure.

I think every now and again it’s perfectly possible for a wrong diagnosis to be made. Many don’t know that taking biotin (one of the B vits) can affect thyroid blood tests and give misleading readings.

But equally, if you were genuinely hypothyroid even for a brief period, it does make it more likely that you will be again at some point in the future, as that makes it likely you have autoimmune thyroid disease. Have you ever had thyroid antibodies tested? Autoimmune hypothyroidism can relapse and remit.

[silverbelle51 in reply to Jazzw]

He started me out on 50 and the next year 75. I was told" I needed to get used to feeling normal" , but was I was feeling is SICK! No auto immune tests were ever done and to be honest I never questioned cause I thought I could trust him . Quite honestly I was not aware that thyroid disorders were not straight forward. I mistakenly believed they were a disorder that had been mastered. I had read a lot on an other site back in 2017 and was flabbergasted at how many people had real serious issues and I took a break to just read medical articles and the Thyroid Healing Book and digest what I was reading and came back to it cause I really do want answers and don't ever plan on proceeding blindly again. Levo did make me very ill and was destroying my health in every way. I know there are many who talk about Levo like it is the magic bullet , but I guess they have never been harmed. Thank you for the inquiry

[Jazzw in reply to silverbelle51]

There’s a few things to consider that might explain what happened.

The first is that your levothyroxine dosage was quite low. Now, we don’t know how high your TSH was to start with but 75mcg often isn’t enough. And being left on 50mcg for a while will have caused other issues—when you’re put on too low a dose your own thyroid feedback loop can come to a standstill. Taking levothyroxine doesn’t top up your thyroid hormone levels, it replaces the hormone your thyroid was making—your thyroid basically takes a break. It can make you more hypothyroid than you were before starting on thyroid hormone replacement. That in turn affects (amongst other things) digestion, gut absorption. Your vitamin and mineral levels then drop, causing you to feel even worse.

We see here all the time that when people stop taking levothyroxine that for a short while they feel lots better—it’s a curious phenomenon but it happens a lot. Sadly, the “feeling better” often doesn’t last more than a few months.

Some people find they’re sensitive to the excipients in their brand of levothyroxine. Some are sensitive to acacia powder for example, other to lactose or something else. Sometimes a change in brand does the trick. Some need to top up their depleted vitamin and mineral levels.

Some people’s bodies just aren’t able to convert T4 to the active thyroid hormone T3 very well and so need to take T3 alongside T4. Some can’t tolerate levothyroxine at all and end up on T3 only.

So you see, this isn’t straightforward—and you’re quite right, things like levels of cortisol come into play as well, as do changes to other hormone levels such as oestrogen and progesterone during menopause. We’re a big hormonal soup—and changes in one hormone can have a knock on effect to all the others.

I think I have to point out that when we visit forums like this we’ll always find the people who aren’t doing well on levothyroxine and end up with confirmation bias—I think the majority of people on levothyroxine probably do just fine with it and they have no need to visit a forum like ours for answers.

I’m not saying that your thoughts about what happened in your case are wrong but it helps to be alert to the possibility that there are many reasons for not “getting on with levothyroxine”. And it really doesn’t help that symptoms of over medication can occasionally be identical to under medication!

If you can get hold of any of your blood test results the good folk here will have a look and tell you what they think. We’re mostly all patients here—it’s a peer to peer forum—but there are some fabulous people with great knowledge who may be able to help you work things out.

[silverbelle51 in reply to Jazzw]

Sadly I never got any of my numbers. Here in the U.S.A. they deal with normal and abnormal or at least the HMO style medicine that is practiced here. Thank you for taking the time and I will share some of your thoughts at my next visit with my now doctor. Thanks for this post and the one 2 hours ago

[Jazzw in reply to silverbelle51]

You’re welcome.

[Jazzw]

Just to add, as I’ve realised I didn’t address one of your points, if you were taking levothyroxine that you didn’t need, your thyroid probably would shrink over time. But it would have grown again when you stopped taking the Levo—it wouldn’t do any permanent damage.

If your thyroid has remained permanently shrunk, then that actually suggests that you have autoimmune thyroid disease—it would be the result of autoimmune disease killing off thyroid tissue.

[greygoose]

Levo made me ill, too. But there was no doubt that I was hypo at diagnosis, with high antibodies - I have Ord's Thyroiditis. It took me years of experimenting with T4, T3, and NDT to find out that what I needed were high doses of T3 only.

I agree with Jazzw , taking levo, even if you don't need it, doesn't harm the thyroid itself, it just shuts down. What did the damage for me was all the years I was undiagnosed, due to medical incompetance and ignorance, and the Ord's itself.

Is it possible in the US to get hold of your medical records, so that you can see exactly what was tested, and exactly what the results were, to set your mind at rest?

[silverbelle51 in reply to greygoose]

I will share your experience with my new doctor I switched to last year. He isn't a know it all, but with my luck they will move him or something

[greygoose in reply to silverbelle51]

I hope it helps.

[ICE187 in reply to silverbelle51]

Since you are in the U.S, chances are Quest Diagnostics ran the lab work. Create an account with Quest online. If they did your labs, you will see it. Labcorp is the other one. Create an account with them if Quest has nothing on you.

[silverbelle51 in reply to ICE187]

Thank you. I will try