Levothyroxine and t3 medication

[Coachgeorge]

Just started on t3 with my Levothyroxine yesterday. Could I get some feedback as to whether this has worked for others? Thanks Coach George

[Sveistre]

Hi, yes this worked and working for me, but as we’re all different you need to try and look if this works for you, there is no “one fits all” rule here, good luck

[Coachgeorge in reply to Sveistre]

How long before I see some change?

[Sveistre in reply to Coachgeorge]

If I remember correctly I felt better in a week/2 weeks time but I change my diet completely around the same time as well, so it might be that everything had impact

[Coachgeorge in reply to Sveistre]

I’ve been ill since January due to a reaction to steroids. I think that is under control but my thyroid is now the issue. I lost 42 pounds and my T4 started jumping with every blood draw. Doc doesn’t think I’m converting. Meanwhile, I’m pretty much stuck in the house and dependent on my husband. Very weak and agitated. I’m hoping the t3 helps. What were your symptoms? What diet do you use? Thanks

[Slosh in reply to Coachgeorge]

I'm also on steroids and have also not been well since Jan - what issues have you experienced?

[Coachgeorge in reply to Slosh]

It was horrific. I had the flu and was prescribed 2 rounds of prednisone. About half way thru the second round, my anxiety was out of control. I was given Ativan but that didn’t help so was prescribed lexapro which made it worse, cymbalta which made it worse, clonidine that dropped my blood pressure. Meanwhile, I’m taking Ativan three times a day. I lost more than 40 pounds, anxiety is awful, shaking, cold intolerance, nausea. I went to see a psychiatrist who identified the steroids as the problem. Now, I’m dependent on the Ativan. It’s a mess. Thyroid was under control with 100mcg of Levothyroxine until I lost all the weight in a rapid fashion. I’d go days without eating. We think the remaining weakness, anxiety, cold intolerance and shaking is my thyroid. My T4 has been out of range, for my lab, for months. Doc is thinking I’m not converting so she added t3. I’m tired of being ill, as we all are. I’m hoping the t3 gets me stable.

Why are you on steroids?

[Slosh in reply to Coachgeorge]

Hope you get well soon

[Coachgeorge in reply to Slosh]

You,too

[Slosh in reply to Coachgeorge]

Another autoimmune disease - Polymyalgia Rheumatica. Have become very intolerant to chemicals and some foods plus messed gut health and ligament damage.

[greygoose]

Depends on what you expect of it. Was it better than T4 only? Most definitely. Did it make me 100% better? No, it didn't. I absolutely need to be on T3 only. But, as Sveistre said, we're all different and we have to find what works for us.

And, don't forget, nothing is going to work if you don't take enough of it. And, that's where most doctors get it wrong. It's not just about increasing until the TSH is somewhere in-range. It's about increasing until all your symptoms go away and you feel well.

[Coachgeorge in reply to greygoose]

It’s kind of crazy. My TSH is good. My T4 is high and my t3 is borderline. My doc is really trying. It’s definitely not an exact science. I was taking vitamin B but it had biotin in it which screws T4 results. I stopped the vitamin B. She also had me on folic acid which she stopped. Had a blood draw and am waiting on the results. I never imagined I could be this sick because of thyroid issues.

[MaisieGray in reply to Coachgeorge]

You don't have to stop biotin permanently, only for 5-7 days before the blood draw, and only if the assay method requires it, because it doesn't "screw T4 results" in the sense that it affects your T4 levels. So not all assay methods interact with the biotin, but where they do, can return TSH and/or T4 results that are skewed in either direction. So simply leave off your biotin-containing supplements before each test unless you contact the lab performing the assays, and check if the method used is biotin-reactive.

[Coachgeorge in reply to MaisieGray]

I did stop before this last draw. Thanks for the heads up

[greygoose in reply to Coachgeorge]

Well, TSH is pretty much irrelevant in that it doesn't tell you whether you're on the right dose, and rarely bears much relationship to the way you feel. If it's under 1 then there's not much point in looking at it. If your FT4 is truly high, and your FT3 low (is that what you mean by 'borderline'?) then that is typical of poor conversion, and you do need to take some T3.

But, that is not necessarily going to be the end of all your problems. Why were you taking the B complex and the folic acid? Did you have your vit B12 and folate tested? What about vit D and ferritin? They all need to be optimal for your body to be able to use thyroid hormone effectively.

[Coachgeorge in reply to greygoose]

DNA tests indicated that I have the genetic mutation for folic acid. We just drew for b12, folate and D again. Waiting on the results. Will need to check on ferritin. I appreciate the help. I’m miserable.

[greygoose in reply to Coachgeorge]

I can imagine you are, yes. I hope you get some answers soon.

[Coachgeorge in reply to greygoose]

Thank you. I’m so sick

[greygoose in reply to Coachgeorge]

You're welcome.

[Coachgeorge in reply to greygoose]

Got my labs back folate was >20 (range is >5.9 is normal)

Vitamin D was 34 (range is >30 is normal)

She didn’t do ferritin or B12.

I posted earlier that my kidneys are sluggish and I’m very physically anxious. Just started the T3. Started with 5mcg in the am and 5 mcg at noon. Just learned that I was supposed to take 5mcg in the morning for a few days then add the other 5 at the same time. She doesn’t want to test Tsh t3 and T4 for another week or so. I see her again on Friday.

I’m not sure how much more I can take. I feel like the blood in my arms is boiling. Are these common symptoms? I have 3 more doses before I see her. Not sure what to do. Thank you.

[greygoose in reply to Coachgeorge]

So, you started on the T3 yesterday? Or today? And you took too much. So, tomorrow, just take 5 mcg in the morning, and stick with that for a few days. It will take a little while to get used to, but best if you can stick with it.

I can't say I've even heard anyone complaining of boiling blood in their arms before, not. But anxiety is definitely a hypo symptom.

[Coachgeorge in reply to greygoose]

I started 5 of t3 on Saturday. Started 5 2x daily yesterday

[greygoose in reply to Coachgeorge]

Well, if I were you, I'd go back to 5 x 1 tomorrow.

[Coachgeorge in reply to greygoose]

Thank you. This is a struggle like I’ve never had. I have so much respect for all of you.

[greygoose in reply to Coachgeorge]

You're welcome. You'll soon get used to it.

[Coachgeorge in reply to greygoose]

I don't want to live the rest of my life in bed. Best of everything to you.

[greygoose in reply to Coachgeorge]

No, of course you don't. Who would? But, to get well you're probably going to have to get very proactive and learn all there is to know about your disease. Because the damned doctors sure as hell don't know!

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Vitamin levels need to be OPTIMAL for Levothyroxine or T3 to work well

Do you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies?

If not had both TPO and TG thyroid antibodies tested these need testing

How much T3 has Doctor prescribed per day?

Usual starting dose in 5mcg twice a day - waking and mid afternoon

Wait 6 weeks and retest bloods

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to regularly test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Come back with new post once you get results and ranges or add vitamin and antibodies results now if you have them

[Coachgeorge in reply to SlowDragon]

One more question. I was fine with my Levothyroxine until I got sick and lost over 40 pounds. Could the weight loss have caused all these problems?

[Coachgeorge]

I’ve had ANA but not TPO or TG. I don’t see those as options in my US lab. I started 5mcg in the am yesterday. I’ve been sick for so long I can’t distinguish symptoms if that makes any sense. I’m very sensitive to cold, weak, nauseous, and anxious. Are these typical symptoms? I can’t tell if it’s getting worse with the t3.

[SlowDragon Administrator in reply to Coachgeorge]

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's.

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Thyroid Peroxidase antibodies

healthline.com/health/antit...

Thyroglobulin antibodies test

healthline.com/health/antit...

[NWA6]

😔 your symptoms all sound miserable. T3 was a wonder drug for me. I didn’t introduce slowly I just added the full 15mcg (split into 3 doses) from the first day it arrived. I couldn’t stop smiling, it was like I’d taken some LSD! (Obvs without the hallucinations! Lol) it’s been 3mths now and I’ve been very well. I was housebound for 3mths and had no emotions but before that I was able to rally through most symptoms. When the really bad mental symptoms struck I couldn’t get through it, insomnia and I found even washing my hair such a chore 😩

T3/4 combo has been a lifesaver

[Coachgeorge in reply to NWA6]

I hope I’m as fortunate. Happy for you

[Coachgeorge in reply to NWA6]

What were your physical symptoms?

[NWA6 in reply to Coachgeorge]

It’s depends in what time period your asking. I’ve had Hashi’s for more than 10yrs and I kept asking for more and more Levo. Just before starting treatment I’d just go to bed at 6pm every night and fall straight asleep and id have an afternoon nap aswell.

But during this last Hypo period I had insomnia. All throughout I had constipation, lethargy, pins and needles ‘dead limbs’ on waking which were extremely painful when the blood was getting back into them, my husband used to have to rub them awake. Water retention, puffy face, extremely dark eyes. I could go on and on but the best way to list the symptoms for my GP/Endo was to print off the Thyroid Uk list and show them. There’s over 100 and I had most of them in varying degrees of severity.

thyroiduk.org.uk/tuk/about_...

I wasn’t sick for the whole of the 10yrs, I’d increase my Levo and be well for a few months, sometimes nearly a whole year but then the cycle of Hypo would start again. And I now realise that I have never been fully well, I just simply didn’t wasn’t as unwell as before the Levo increase and so that was a relief. Now that I’ve found the right treatment for me I realise with hindsight what being well truly means.

I really really hope that you can get the optimal dose for you, its so hard to read all these stories like yours of people suffering 😔

[Coachgeorge in reply to NWA6]

Thank you. I’m in the US. It doesn’t seem like we are as informed as the UK. However, we are able to get the medications once we figure out the problem. Appreciate your help.