Hi, everyone. I'm currently taking levothyroxine 88mcg and having some issues with feeling terrible plus labs looking off, seem to have some t4 to t3 conversion issues. My last test showed TSH at 2.2 ulU/ml, FT4 at 1.9 ng/dl, and FT3 at 3.0 pg/ml. I also have elevated reverse T3 at 29.2 ng/dl and elevated thyroid antibodies. My endo suggested trying adding T3... going to 50mcg of levothyroxine and 5mcg of liothyronine per day. Should I immediately transition to taking this combo, or should I take the lower dose of levo for a bit before adding the T3? I guess my concern is having the higher levels of levo still in my system when adding the T3, possibly creating hyperthyroid symptoms. My dr, of course, says to transition to the new dosage immediately, but he isn't sensitive to my concerns of side effects. If anyone has suggestions, I'd sure appreciate them.
Best way to transition from Levothyroxine only ... - Thyroid UK
Best way to transition from Levothyroxine only to T4/T3 combo?
Welcome to the forum
Can you tell us
Do you have Hashimoto’s?
Important to test vitamin D, folate, ferritin and B12
High reverse T3 can be due to iron and ferritin issues
stopthethyroidmadness.com/r...
Have you got any vitamin results you can add
Yes. My vitamin D is on the low end and so are my ferritin levels. I'm sorry I don't have my numbers here in front of me now but I do know that both are on the very lowest end of normal. I've been taking iron supplements and high doses vitamin D recently.
Important to work on getting all four vitamins optimal, especially to help get use to T3
How much vitamin D are you taking?
GP will only prescribe to bring levels to 50nmol.
But improving to around 80nmol or 100nmol may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
ouh.nhs.uk/osteoporosis/use...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Are you also supplementing Magnesium ?
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Bone pain
easy-immune-health.com/pain...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
intechopen.com/books/cell-s...
As you have Graves are you on strictly gluten free diet or tried it?
Frequently helps reduce symptoms too
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
Also wanted to mention I'm trying an anti-inflammatory meal plan for my gut and yes I have been supplementing with magnesium, too.
Something else I can add about my history, I have Graves disease and had radioiodine therapy one year ago. I have not done well since. Levo was never regulated well or else my body has not responded well. I have felt horrendous ever since.
Reduce the levo by 25mcg. Wait a week. Add 5mcg of lio. Wait 6 weeks. Bloods.
You need to have optimal vitamin levels for T3 to be effective.
Okay thank you for that. My biggest concern was taking the T3 and having hyper symptoms.
5mcg is a very low dose and you will have reduced your Ft3 level by reducing your levo.
Many of us find adding T3 is actually quite relaxing and can improve sleep
I'm glad to hear that considering I have such trouble sleeping!
Discovered that by accident when I moved last dose later for day before blood test
More on my profile
I have ended up on 20mcg T3
10mcg at 7am, 5mcg at 3pm and 5mcg at 11pm
That's good to know. I will look at your profile. Thank you to you and Lalatoot for all the information, this has been far more valuable to me than anything any doctor has told me this past year.
Most endocrinologists seem to think T3 is like speed
They say things like ...don’t take after mid afternoon.....or you won’t sleep
Yet many of us find it improves sleep.
Having good vitamin D also improves sleep
Low vitamin D and low B vitamins may be linked as explained here
drgominak.com/sleep/vitamin...
She explains more in this YouTube video...
vitamin D at 40ng/ml (USA units) is equal to 100nmol (UK units)
healthunlocked.com/thyroidu...
That's what I got from my endocrinologist as well. Acted as if t3 was some sort of speed. I'm glad to know this is not the case. I read your profile, what a journey you've had. My heart goes out to you for all that you've been through, but so glad for you that you have improved and are doing well now. Thank you so much for the links.
How much do you weigh cause I also asked my consultant that can I trial t3
Was at 150 pounds/68 kg. Eating only anti inflammatory foods based on blood tests so I've lost weight. Not sure how endos gauge where to start with t4/t3 dosing, if by weight or what.
I second that . Besides that if someone that had TT and is not a good converter adding some T3 is a *Life Changer* . I experienced so many symptoms with T4 only . Only when some T3/NDT where added it made a huge difference. The heart has T3 receptor sights and the T3 /NDT helped to calm my palpitations . I'm sure that many on T3/T4/NDT sing the praises too.
Would agree with Lalatoot having good vitamin levels is very very important
Many endocrinologist fail to understand this
Elaine Moore’s website is apparently very good , loads of info for Graves patients
Generally the advice on T3 is to add very slowly
Personally I started T3 very very cautiously. Initially reduced Levo by 12.5mcg. Next day ...Added 2.5mcg waking and 2.5mcg mid afternoon. (Yes a speck of dust...but noticeable difference)
After 3-4days reduced Levo further 12.5mcg and increased to 5mcg morning and 5mcg mid pm
Held at that for 6 weeks before testing
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood 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 of 2nd dose day before test
Great info, thank you. I am like you, wanting to do this T3 thing very cautiously. I have read about taking the 2.5 in the morning and 2.5 later in the day and was planning to do this rather than bomb my body with the full dose all at once. Its good to talk with someone else who has done this. Like you said, yes it's a speck of dust but can make a notable difference. I'm to start the T3 soon, reduced my levo a couple days ago. And I will see my doctor in 2 weeks. Since I now have some valuable information I learned here, I will share it with him. On the vitamin D, I was taking only 1000 IU per day and found out that was way too little. Now take 10,000 per day and hoping this will be enough to boost levels. I'm still on quite a bit of ferrous sulfate and need to get ferritin level up before I can back off on that. Those levels were checked about two weeks ago.
Thank you also for the advice on getting the blood work done in the morning and taking last dose of Levothyroxine 24 hours prior.
Retest vitamin D after few weeks
If was under 25nmol LOADING dose is 5000iu daily for 8 weeks or 7000iu daily for 6 weeks
Have you had B12 and folate tested?
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Links about iron and ferritin
drhedberg.com/ferritin-hypo...
restartmed.com/hypothyroidi...
Post about iron supplements
healthunlocked.com/thyroidu...
Thank you! I haven't had B12 or folate tested yet. I hate to take a guess and say that I'm probably low on those but as of right now, since my iron so low, I am taking B supplements and K2 and also folate along with the iron. I plan to have blood work done soon for the other deficiencies. I happen to love liver pate so that's something that I will plan to add to my diet.
Hey there Renee
Just checked your profile and saw this message :
A fully functioning working thyroid would be supporting you on a daily basis with approximately, 100 T4 + 10 T3 :
T3 is said to be about 4 times more powerful than T4 :
Please get your vitamins and minerals up first as your core strength needs to be strong to support you : whether you supplement with T3 . T4, or a combination of them both, or even supplement with Natural Desiccated Thyroid.
Thank you so much, that is good information. Yes I'm working hard on my vitamin D and b12, folate, and of course struggling with this iron situation. I'm hoping to get everything leveled out so that the medication can do its thing. I'vee been wondering if I should be on 10 mcg T3 right now, I've noticed others with similar issues that I have are on a slightly higher dose than the 5 mcg that I'm taking.
Are you in the uk and under an NHS endocrinologist ?
The numbers I quoted above are an approximation from what I've read.
I am on NDT and ok on 1 + 1/2 grains/tablets which is considered quite low, by some people. This equals 57 T4 + 13.5 T3 in total :
There is another book, apart from Elaine Moore's contributions, you might like, written by a doctor who has hypothyroidism. Barry Durrant-Peatfield writes is an easy to understand insightful way about all things thyroid, and another of my ' bibles entitled :- Your Thyroid and How To Keep It Healthy :
My other book is Elaine's but it I found it a bit hard going but then I'm dyslexic : Her website is written in an easier o understand manner.
I'm in the US and I do have an endocrinologist. But unfortunately he does not like NDT. He has me on levothyroxine 50 micrograms plus liothyronine 5 micrograms. I have high reverse T3 and so I'm guessing that is part of my issue right now. And I'm questioning whether I should be on 10 micrograms liothyronine but its just been about a week. Thank you, I will look up Barry Durant Peatfield's book. The more info, the better. Especially from others who have been through it all.
I also had high Reverse T3 and think it inevitable having been hyperactive.
When T4 levels go really high your body has a safety valve which ' kicks in ' and converts the extra T4 away from you, in an attempt to safe guard you, and turns it into reverse T3. Thereby deflecting these unnecessarily high levels of T4 away from your heart and other vital organs. Hope that makes some sense ?
I don't think it actually causes much of an issue now, and overtime, now your T4 is down in normal levels it will probably slowly reduce.
Until your vitamins and minerals are optimal your trial of this T3/T4 combo will be difficult to evaluate.
However I doubt 5mcg will be enough :
What are your main symptoms and could they be because of the low vitamins and minerals rather than the T3/T4 situation - I know it's difficult to work out, what's what, especially when not well with possibly brain fog.
Yes that does make sense about the T4 being converted to rt3. I'm questioning if my symptoms are iron deficiency symptoms but I just don't know. It seems no one really has an answer. I'm freezing all the time, my diaphragm hurts and sometimes I can't breathe. There are times when just moving my arms makes me feel out of breath. My heart rate is up and down just depending on whether I'm going through one of these episodes. Sometimes an episode of not being able to breathe well and being dizzy and all that lasts for hours. It gets bad enough that I feel I need to be hospitalized. I do know that my thyroid antibodies are very high. I don't know if this can have anything to do with my symptoms. It is very frustrating that Graves disease is such a mystery and so difficult to figure out. I know people who have worse iron levels than I do and don't have any symptoms of iron deficiency or anemia. So I'm just not sure what's going on. I'm seeing a wellness doctor now who did the lab workup that told me I had high reverse T3, antibodies, and so on. Just praying something get me back on track quick
Well if your Graves antibodies are still high, that's not helping with anything.
I know it's difficult to understand what's what when well, let alone reading of how you are currently feeling.
I don't think there's any point trying to compare yourself to anyone else.
An iron infusion would be a quick fix to the low ferritin symptoms that are currently in the mix of the symptoms you are dealing with.
I'm just another Graves person who has had RAI - I'm not qualified to advise on all that have you describe and yes, with how this reads, I think the hospital visit sounds like a sensible conclusion.
Yes I am leaning toward and infusion. I spent four days in the hospital last week and they ignored everything related to thyroid just because my thyroid levels were technically semi normal. Sure doesn't make you feel too good about the medical industry. But I suppose that's the way it goes for everyone who goes through having autoimmune diseases. I appreciate your input here.
Well from what I've read the medical profession do not know how to deal with the root cause, the autoimmune component, so just treat the symptoms expressed, and in the case of Graves think by removing the target of the attack, the thyroid, the disease isn't then a problem.
You're exactly right. They want to treat the symptoms and they don't want to find root causes. And when something's not functioning they just want to remove it or kill it. Frustrating to say the least.
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