I have been taking 0.88 of Levothyroxine for 8 years. I was able to lose and maintain my weight easy.
After 8 years something has changed. My TSH dropped, I gained 5 lbs within a week, felt tired, started having issues with periods. My family doctor wanted to reduce the Levo. I refused and asked for a specialist. Obviously was worried that my symptoms will get worse by reducing the dose.
It takes 6 months to get an appointment with endocrinologist. So I've decided to do the research and see what could help me.
I was able to try T3 medication along with 0.88 of Levo. Went from 25 to 50mcg per day. Within 10 days I was back to my previous weight, felt great, libido returned, had lots of energy and thought I won this one! I suspect that I was not able to convert T4 to T3.
The blood results during this time was:
TSH 0.01 (normal 0.35-5)
FT3 9.7 (normal 3.4-5.9)
FT4 16.4 (normal 12-22)
2 months went by. Finally I had an appointment with the endo. She didn't like my low TSH and high T3. Of course all everyone cares about is TSH. Who cares about how great we feel right?
So over the 6 months she reduced my T3 to 12,5 mcg and increased the T4 to 0.123 She suspects I might have celiac disease despite me not having any symptoms of gluten intolerance. Supposedly celiac disease influences how thyroid hormones gets absorbed into the cells. I am waiting to see gastroenterologist in 3 months.
Fast forwarding to now. I gained 10 lbs with a month, all of my nails have been breaking, libido is down, severe ACID reflux, constipation, tired... . My blood results are:
TSH 0.01(normal 0.35-5)
FT3 5.9 (normal 3.4-5.9)
FT4 16 (normal 12-22)
I have been reading a lot about too much of T4 converting to reverse T3. I have decided to drop the T4 to 0.50 mcg per day and raise the T3 to 50 mcg per day. If I don't see any results in a week I will drop Levo completely and keep taking T3 4 times a day in 12,5 mcg per pill.
Follow my journey and let me know your thoughts.
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Lienka
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Reverse t3 is not the problem that we used to think it was. Reverse t3 can be high for reasons other than thyroid. Reverse t3 does not block t3 receptors in the cells. It has its own functions
It's not a question of belief, rT3 exists. And, it exists for a reason. The difference of opinion arises as to whether it does any harm or not. And, the consensus of opinion is that it doesn't. It doesn't cause symptoms or block your T3 or affect conversion or anything like that.
What I would have thought, looking at your results, is that you have thyroid hormone resistance, and need your FT3 very high in order to get enough into the cells by flooding the receptors. And, if that is the case, then taking your T3 four times a day would be the wrong way to go. You would need to take it all in one go, as I do.
Oh really... I thought taking it 4 times a day would help me. I usually took my T4 and T3 just once a day in the morning on an empty stomach 30 min before eating.
Just like a said... I tried it all. I feel like it anyway.
Splitting the dose does help some people, of course - although splitting it into four might be a bit much. But, it won't help you at all if you do have thyroid hormone resistance.
Leaving an hour before eating would be better.
When I found out, I don't really remember - I've been at this for a long time! There are no tests to find out if you have thyroid hormone resistance, but the fact that I need 75 mcg T3 to feel in any way normal rather suggests that I do.
Can you edit to add ranges please? [use the "more" button on the right]
We generally ignore a TSH below the minimum, but a T3 above the maximum is more of a concern - at least to my endo ... but until we know where you are in the T3 and T4 ranges it's difficult to say too much x
Do you have the reference ranges for your results? If so please add them so that we can interpret them accurately
How are your nutrient levels? Vit D, B12, folate and ferritin? We need optimal levels for any thyroid hormone to work and it's essential that they are optimal before introducing T3.
I suspect that I was not able to convert T4 to T3.
That would show in your test results. What were they before adding T3?
Do you have Hashimoto's (raised TPO or Tg antibodies would show this).
I was able to try T3 medication along with 0.88 of Levo. Went from 25 to 50mcg per day.
T3 should be introduced slowly, starting off with 1/4 of a tablet, either 5mcg or 6.25mcg depending on the dose of the tablet. Then increase by 1/4 of a tablet at a time. Once we reach one full tablet (after about 8 weeks), if we haven't already retested our levels then it should be done. Our bodies need to get used to the hormones gradually and T3 is powerful. Did you go from 25mcg to 50mcg in one leap? If so I'm afraid that's sheer madness.
I have decided to drop the T4 to 0.50 mcg per day and raise the T3 to 50 mcg per day. If I don't see any results in a week I will drop Levo completely and keep taking T3 4 times a day in 12,5 mcg per pill.
It takes 6-8 weeks for levels to stabilise after changing dose of Levo.
I have been reading a lot about too much of T4 converting to reverse T3.
An excess of unconverted T4 can be one reason for high rT3 but your results would suggest that if FT4 was high and FT3 was low, so if you take T3 this isn't possible to know because your results reflect the fact that you take T3. There are also many other reasons for high rT3:
· Chronic fatigue
· Acute illness and injury
· Chronic disease
· Increased cortisol (stress)
· Low cortisol (adrenal fatigue)
· Low iron
· Lyme disease
· Chronic inflammation
Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.
So I wouldn't put any store on a high rT3 result if you have it tested. A test can tell you if it's high but it can't tell you why.
My Vitamin D has been actually above the normal range during sunny months. I take D3 during the winter months.
We should test Vit D and base our dose on the result, so if you take D3 during the winter it would be a good idea to test around October/November then base your dose on that and aim for the recommended level of 100-150nmol or 40-60ng/ml. If you are already at this level then just a maintenance dose of possibly 2,000iu may be enough, along with D3's important cofactors - magnesium and Vit K2-mk7.
B12, folate and ferritin tests were never recommended by my doctor.
This will be because most doctors don't know how important good nutrient levels are particularly where hypothyroidism is concerned.
I suspect that I was not able to convert T4 to T3. That would show in your test results. What were they before adding T3?
My FT3 was 2 . (normal 3.4-5.9)
What were the TSH and FT4 results that came with this FT3 result?
It takes 6-8 weeks for levels to stabilize after changing dose of Levo.
Half-life of Levothyroxine is 5-7 days.
The half life elimination of Levo is approx 7 days, so take 88mcg today and in 7 days there will be 44mcg, after another 7 days there will be 22mcg, after another 7 days there will be 11mcg, etc. That 88mcg will be completely gone in about 8 weeks. It takes 6-8 weeks for hormone levels to fully stabilise after a dose change. Personally I need at least 8 weeks, as do some other members here.
I wish my endo agreed to test the rT3 just so we know if it's even a possibility. But she doesn't believe in it.
If the test comes back with high rT3 it won't tell you if that is due to an excess of unconverted T4 or one of the many other reasons. If your FT4 is low in range, there won't be enough to convert to rT3.
Do YOU think I should continue taking high doses of T4 and the lowest dose of T3 despite my hypo symptoms getting worse?
Before I could make any comment on that I would want to see results, with reference ranges, for
- What were the TSH and FT4 results that came with this FT3 result?
TSH was 0.01 and FT4 was 22
- The half life elimination of Levo is approx 7 days, so take 88mcg today and in 7 days there will be 44mcg, after another 7 days there will be 22mcg, after another 7 days there will be 11mcg, etc. That 88mcg will be completely gone in about 8 weeks. It takes 6-8 weeks for hormone levels to fully stabilise after a dose change. Personally I need at least 8 weeks, as do some other members here.
Thank you for the fantastic explanation!
Before I could make any comment on that I would want to see results, with reference ranges, for
TSH has been same 0.01 since May 2019
FT4 There was one strange drop of FT4 in Jan 2020: 9 - taking 100 levo
Since increasing the dosage the levels stayed from 16 to 20.
FT3 At the time of sudden T4 drop I was taking 37,5 mcg of T3: 6.7
Thyroid antibodies - in July this was 153, 65 (no more tests done after this)
I'm just off to bed now so will answer more fully tomorrow.
However, as mentioned reference ranges are essential to be able to interpret your results so if you can add the ranges that came with each result that will help.
To help me understand what you were taking at the time of each test perhaps you can list your results like this:
Date aa/bb/cc - taking xxmcg whichever thyroid meds
TSH: result (range)
FT4: result (range)
FT3: result (range)
Date dd/ee/ff - taking xxmcg whichever thyroid meds
TSH: result (range)
FT4: result (range)
FT3: result (range)
Etc
Please also give the reference range for thyroid antibodies, that result looks over range.
Please give unit of measurement for Vit D and B12.
I'm really trying to help you but without reference ranges for your results it's virtually impossible to interpret your thyroid tests. Ranges vary from lab to lab, and even if the same lab is used ranges can change from time to time. So we can't compare your FT4 and FT3 and we have no idea how they relate to their ranges
What we can see is that your TSH has been the same since July 2019 and that adding T3 lowered it from 0.2 to 0.01 which is to be expected.
July 2019 - taking .088 Levo and 25 Liothironine
Aug 2019 - taking .088 Levo and 50 Lio <<<< FEELING BEST
and
Feb 2020 - taking .144 Levo and 25 Lio
Mar 2020 - taking .166 Levo and 50 Lio << FEELING WORSE
Increasing from 25mcg T3 to 50mcg in one month is, as mentioned before, far too quick, increases should be by 1/4 of a tablet (5mcg or 6.25mcg) gradually.
Also, we should only change one thing at a time, it looks as though you increased both Levo and T3 at the same time and you were feeling worse in March but you don't know whether it was the Levo or the T3 that was causing it.
**
VIT D25
Vit D 47,16
Confusing. I think Vit D25 is possibly the name of the test but you haven't given the result when you posted that.
Please give the unit of measurement as requested, it will either be ng/ml or nmol/L. With one of them it will be fine, with the other it will be low.
Also you didn't give the following information which was requested:
Please also give the reference range for thyroid antibodies, that result looks over range.
You have given just one Ferritin result and it's 24. What's the reference range for this result? It look like it could be too low, but the reference range is important.
SeasideSusie did you see her Ferritin result above?
Yes, thanks FancyPants54 I did see the ferritin result, but with ferritin the range is going to be something like13-150, 20-300, so I know it's low, but I want to wait until all results have ranges with them, plus units of measurement for B12 and Vit D, before I comment. I think they're all linked to possible Hashi's but can't say anything for certain until the further information I've asked for has been provided.
I talked to my endo today and she is (finally) sending me to get all the B12, Vit D, Ferritin, antibodies, .... done this week. My latest tests were done 9 months ago so not really good to judge by them.
Let's wait and see what the new results are rather than commenting on old results.
Can you answer the question about the range for the antibody test you gave the result for, if the result was over range then you don't need the test repeating, one positive result is all that you need but I can't tell you if it's positive without you giving the range.
Anti-TPO range is under 60,00 IU/ml (mine was 153,65)
In that case your raised antibody level confirms autoimmune thyroid disease, aka Hashimoto's, which is where the immune system attacks the thyroid and gradually destroys it.
So there we have one part of the puzzle.
Fluctuations in test results and symptoms are part and parcel of Hashi's, we can have swings from hypo to "hyper" - not true hyperthyroidism but raised hormone levels when the immune system attacks because the dying cells then deposit large amounts of hormone into the bloodstream, and eventually go back to hypo again.
Hashi's is know to cause gut/absorption problems and very often low nutrient levels or deficiencies are present, hence it's essential to test these and address any issues.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
If you are paying for your tests, then save your money and don't bother with another antibody test. You have one positive result, that's all you need to diagnose Hashi's. Because antibody levels fluctuate, further testing could show above range or below range, but you'd still have Hashi's even if the result is below range.
As already mentioned in replies, a big concern is the frequency of testing, the big jump in your dose of T3 (changing from 25mcg to 50mcg) and changing doses of both Levo and T3 at the same time. This all needs to slow down. If any dose change is made then you need to leave 6-8 weeks for levels to settle (explained in a previous reply) before retesting. And only ever alter the dose of Levo or T3, never both at the same time, this is because whatever changes are brought about you need to know if it's the Levo or the T3 that does it. If you alter both at the same time you can't possibly know which has brought about the improvement or decline, whichever the case may be.
I'm sorry but that doesn't tell me anything. I was asking when - as in a few months ago, years ago?
It could have been taken before any damage was done to the thyroid even though you had positive antibodies. It can take years for Hashi's to destory the thyroid so may not show up at the same time as a blood test first shows antibodies.
My TSH is 0.01 but felt fine ..doc (not my usual who asks how I feel and if say good that’s fine by him!) wanted me to reduce Levo which I tried for a while but started getting hypo symptoms so went back to midway though
I add the odd 12.5 mcg twice a week. You’re right TSH is not everything ..I’m not sure I convert well but can’t get T3.
How much levo are you taking? Have you had T3 tested as well?
I apologise for my bluntness, but I agree with what others have said - this sounds completely crazy.
First of all, your body needs time to adapt to any increase or decrease in meds, so you cannot wait a week and then try something else.
Levothyroxine will build up slowly in your body over several weeks, which is why you should wait 6-8 weeks to be retested.
Your latest labs are pretty typical of someone on a T3/T4 combo - that is, high in range FT3, midrange or slightly lower FT4 and a suppressed TSH.
The symptoms you describe are indicative of hypo, but your FT3 is at the top of range.
I see no reason for you to go off T4 completely and take T3 only. Some people do, of course, but usually only after everything else has failed. I think it´s far too soon for you to decide you don´t need any T4, especially since it seems you did pretty well on T4 only before adding T3.
I´d say one problem is the fact that both you and your doctors have made many and too frequent dose adjustments.
The endo does not seem very knowledgeable if you cut your T3 from 50 to 12.5 mcg daily in one go; that way, you risk losing your sweet spot.
So, never increase or decrease T3 by more than 5/6.25 mcg at a time, and for levo no more than 25 mcg at a time. And, after making changes, please give your body time to adapt before you start increasing, decreasing, going off or adding meds. In the end, your body ends up confused.
Each increase or decrease set by endo has been by 4-6 weeks. I have given her 8 months. But my hypo symptoms all came back since.
I don't understand how come all my labs are typical but I am not feeling any better? I do feel like everything else is failing... I have done so good on T4 only for 8 years same dose so why sudden change to worse?
I reacted to what you said: that if you don´t see results in a week, you will drop levo to 50 mcg (from 125?) and increase T3 to 50 mcg a day (from 12.5?) Which would be far too much both ways. It would be better to decrease levo to 100 mcg and increase T3 by 6.25 mcg and then hold it there for a while.
I don´t know much about taking T3 only, only that it works better for some. However, my impression (from reading articles on the subject as well as some posts here) is that they never did well on T4 only. You say you did for years, then it suddenly stopped working. There could be a number of reasons why. What comes to mind is poor T4 to T3 conversion, and there vitamin and mineral optimisation could play a role.
Do I understand you correctly that your TSH was <0.01 on 88 mcg of T4 daily?
I recently read an article stating that the TSH plays a role in T4 to T3 conversion, and that is the reason people on NDT (who often have a suppressed TSH) need the supra-physiological doses of T3 in NDT (pigs produce more T3 than humans) since their own conversion decreases due to a suppressed TSH. By analogy, this would apply to anyone taking any form of T3 and having a suppressed TSH.
It´s the first time I have read that the TSH plays a role in T4 to T3 conversion.
During the ten years I was on levo only, I had a suppressed TSH for eight years and never felt well. An alternative doctor ordered tests which showed my FT3 levels were about 30% through the range with FT4 levels at the very top of range and a TSH of <0.01 on as much as 225 mcg of levo daily. So I was definitely hypo and felt much better when switched to NDT. Of course, back then, I also had several vitamin and mineral deficiencies because I had no idea how important nutrients such as vits B, D, zinc, magnesium, selenium or iron are when hypothyroid - and neither did my doctor at the time, BTW.
I was on 150 mcg and went down to 125 then 100, felt hypo and back up to 125. Having an extra 12.5 now and again as been feeling bit cold.
Got Medichecks blood test which suggested I could benefit from some T3 but time has not been right to address this with doctor and certainly not on my to do list for now!
Please do not consider iodine. Unless tested and found to be deficient it's not recommended and certainly not when Hashi's is present.
Iodine solution used to be used many years ago to treat HypERthyroidism before current treatment of radioactive iodine. Therefore, it can make HypOthyroidism worse.
Very interesting. I went gluten free (was off the chart gluten sensitive) and within 2 months started hyper symptoms because my cells were absorbing more of the synthroid. Just want to ask if your doc said any more about how celiac influences how cells absorb the thyroid hormone? My experience in the US is doctors are NOT aware of this and I ended up very sick before realizing I was overmedicated. And for me yes during that time my RT3 was hugh. Good luck to you!!
Hi Lienka, I did have severe constipation which prompted me to visit a "functional" chiropractor late in 2017. Stool tests showed off the chart gluten sensitivity - but the chiro did not do a blood test (which I will never understand why not and I quit seeing her after 1st appt) I stopped gluten and of course now since I'm GF the blood tests aren't 100% accurate to show Celiac. Nevertheless, I have stayed the course with GF and although I ended up severely overmedicated (and now take no med) I can tell you I no longer have any constipation - so my only symptom has been solved. I have read a number of medical reports that say older adults who are Celiac or Non Celiac Gluten Sensitive don't have symptoms.
I too have been wondering, "what's gone wrong" after being relatively OK on 150mcg (Levo only) from 2003 to 2016, then declining badly in function for last 4 years.
I believe many things have contributed to this ;
Menopause, + bereavement in 2012.
Change of GP with more frequent brand changes from new chemist.
Reduction from 150 to 125 mcg levothyroxine in 2016.
Then reduced to 112mcg in July 2019 , 106mcg in Nov 2019, and 100mcg in Jan 2020. (Now increased back to 112mcg on 27th March since "reaching an understanding with my GP after a frank exchange of opinions").
But anyway , to get to my point..... one of the things i've been observing and thinking about over the last 9 months is ;
I think there are two different aspects of changing dose in thyroid hormones...
First........... how long it takes to achieve a stable representation of new dose in the blood (half lives, tsh lag etc).
Second........... how long it takes for the new blood levels to physically change all those individual cells in all those many body organs.......... (that grow our nails, our hair, swell up our tongues, absorb nutrients , move food through our digestive system ,effect our muscles ,tendons , cartilage , reflexes , mitochondria? , and whatever happens to our brain function and psychiatry ..etc.etc.)
From watching my own reactions to tiny reductions of 12mcg then 6mcg , then 6mcg again (4 months, 2 mths , 2mths apart, no other changes to anything apart from the season). ~I saw a similar pattern each time , a process taking 7ish weeks , within which, how i felt was changing every few days.
BUT, the pattern of changes was the same and predictable for each dose reduction~ regardless of halving the reduction from 12 to 2 x 6mcg in an attempt to "sneak it past my body without it noticing".
I now think that in the past i have been too quick to judge at 5/6 weeks that "this new dose is not right Doctor" (a painful admission to make).
On the plus side my doctor has admitted that moving my TSH from 0.041 to 0.097 to 0.511 to make him feel happier, has made me ill ,and HE asked ME what dose I,d LIKE TO TAKE ! (presumably equally painful for him!)
I have also been wondering if in effect, it's the PROCESS of the TSH level changing that makes us feel rubbish, as well as whatever number it ends up at?
But i can be sure that allowing more than 7 weeks following a change of ANY SORT has, for me, reduced the confusion an uncertainty on both sides, and gained me a more useful relationship with the doctor .
Which on balance , i think was not a total waste of 9 months.
I realise that's easy for me to say now, and 3 weeks seems an age ,when you want your life back ,let alone 2+ months.
It is so difficult having to wait 4-6 week each time just to realize it's not working. When I started T3 together with T4 treatment the change was so fast! Within 10 days I was back feeling great. I know many doctors consider TSH the key to treatment. It's frustrating having to convince your doctor that this is not the way to go. And I am sure that the doctor is frustrated with us as well...
I was able to get pregnant twice just because of the T4 therapy. Without that I believe the pregnancy would not happen.
My body might be just saying no to chemicals and is not taking what I am giving it... I am not menopausal. My OBGYN tested my hormones 9 months ago.
Hi, you could try giving up milk it worked wonders for me, and you would know with in a few days if it was affecting you, I lost a little weight but miraculously all my aches and pains vanished.
I now drink "koko" coconut milk, and I don't eating anything made with milk in the ingredients, it has made a massive difference to me, I started feeling better within days.
I don't understand how the T4 and the T3 work. You seem very well-versed on them. I mentioned feeling kind of manic when my numbers were 1.5 after are earlier my number was 12. 1 to 5 is normal she tells me. After I mentioned feeling kind of manic she is trying to tell me I am manic depressive. No I am not I see a counselor every month at life works here in the US. My thyroid numbers are up to eight and I am still taking 50 mg of Levothyroxine and do not want to take more because I don't like feeling manic. Doctor tells me it is all in my head and I need to take more. My hair falls out every time I take a shower and I am tired a lot but I am also 60 years old in June. Can you please suggest something I can read. Do people in the UK seem to have a better understanding of this hypothyroidism. I can't even find a group chat about it here. Thank you hope you are feeling better. Saying a prayer for you.
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On average, how long is it likely to take before I feel a decrease of 12.5mcg Levo?
Links wanted for articles about the irrelevance of low TSH especially when taking T3 - also odd results!!
How much T3,t4 body still produce when on NDT?
