I have no Thyroid, now under care of Endocrinologist after GPs almost wrecked me mucking about with my Levo only medication. Endo has me on 75mg Levo and 10mg T3. After reviewing me at his clinic, here are my blood results -
TSH i- 0.01
free T4 - 16.5
free T3 - he says "is on the high side at 8.5"
After a discussion about supressed TSH he now wants my TSH to be over 0.1 (why?) and my T3 to be lower. He has kept my Levo at 75mcg but dropped my T3 to 10mg and 5mcg on alternate days. What do you think? What effect will this have on me as I feel very well on my older dose?
I will have repeat bloods in 3 months, and he also said the availability T3 is getting more difficult but companies in Germany are now supplying the UK, as the one manufacturer in the UK has ramped up the prices again,
I assume all the other Thyroid measurements were in range, as I am sure he would have told me if they were not.
I would welcome comments please, this site is really supportive, so thanks all of you!
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HilaryWB
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You can't do alternate dosing with T3, it just doesn't work. If you want T3 to do what it's supposed to do, you have to take the same dose every day.
he now wants my TSH to be over 0.1 (why?)
He would probably tell you that it's because a suppressed TSH puts you at risk of heart problems and osteoporosis. But it's not true. TSH has nothing to do with bones or hearts.
On the other hand, a very high FT3 could increase your risk. How much over-range is it?
Thank you for that useful information!So if I lower my Levo to 50mcg and continue with my 10 mcg T3 INSTEAD of taking the 75mcg Levo with 10mcg and 5mcg on alternate days ( which as you suggest should NOT be done ) would that lower my Free T3 which is " on the high side " at 8.5? He also wants my TSH up from 0.01 to above 0.1 also, so what effect would taking my Levo down from 75 mcg to 50mcg have - I don't want to go hypo ! Do you think changing the doses woud work and is it safe ? Sorry, I feel so stupid and confused by all this., I feel like he is experimenting on me!Thank you!
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
so day before test did you do this?
5mcg waking and 2.5mcg mid afternoon and 2.5mcg at 8-9pm …..testing next morning 8-9am
Do you always get same brand Levo at each prescription and which brand is it
Which brand T3
Do you normally split your T3 dose
when were vitamin D, folate, ferritin and B12 last tested
Please add most recent results and ranges
What vitamin supplements are you taking
You absolutely can NOT take different doses of T3 on different days. T3 must be same dose every day
1. The thyroid tests were done at the hospital Out Patient Clinic at about10am after I saw the Registrar. The info I gave you is all that I got from the Endos letter to me. My GP does these tests when the Endo requests them, but the first appointment is about 10 am as they can't get the phlebotomists before then
2.I did not know about splitting my doses, I assumed they should be taken at the same time, I have never tried splitting them
3.My Levo is the brand Hillcross, and my T3 is Morningside Healthcare.I nearly always get these brands
4. I take the following supplements - Vitamin D3 ( with K2) Ubiqinol and beetroot ( keeps my blood pressure down ( as I didn't want the usual pharmaceuticals!) I take 1,000 Vit C,, Reservatrol ,Proteolytic enzymes, and a very good quality (Time Health brand ) Multivitamin and Multimineral supplement also.
5.my vitamin D, folate, ferritin and B12 have not been tested for many years. as Lab won't accept GP requests to do them without the Endo requesting them.The labs will also only do only TSH not the full Thyroid scan without the Endo authorising it!
I will try to get the full results of my Thyroid blood tests taken at the hospital, by asking the Endo's secretary to send me them and ifI get them I will post them to you.
So what can I do? I am confused by all this, and still can't get my head around this cardiac issue as I have had several ECGs in the last few years and they were normal as is my Blood pressure, my weight is stable and I have got my energy back. I really don't want my medication chopped and changed yet again. In myself I feel well on my present dose( ie,Levo 75mcgand T3 10mcg)
So what if I lowered my Levo from 75 to 50 mcg, but continued my T3 at 10mcg, rather than going with this new regime of continuing at 75mcg and splitting the T3 to 10mcg and 5 mcg on alternate days, would that work?
Why are these Doctors hell bent on not telling the truth or not allowing us to know what our results mean? Alas, my whole family think that Doctors are God, and I shouldn't ever question their "knowledge"......and don't even mention Dr Google!
Many thanks for your ongoing support, Slow Dragon.
I take 1,000 Vit C,, Reservatrol ,Proteolytic enzymes, and a very good quality (Time Health brand ) Multivitamin and Multimineral supplement also.
The individual ingredients may be very good - they ought to be, given the price! - but multis always contain things that either you don't need and/or shouldn't be taken to gether. This one contains calcium, iodine and iron.
The iron will block absorption of all the vitamins. It will also bind with the calcium - which you probably don't need anyway - so you won't absorb those, either. Which means you're paying all that money for not very much.
Iodine is really not recommended for hypos. It can cause more problems that it cures, and it's very doubtful that you need it. And it has 150 mcg iodine. Given that you will be getting about 54 mcg from your thyroid hormone replacement which is recycled in the body, plus what you get from food, and you only need about 150 mcg a day - less, actually because your thyroid isn't making any hormone now - you are now grossly over-dosed on iodine. Which is really not a good idea. More is never better where nutrients are concerned. And multi-vits are never a good idea.
Also, if you're taking vit D, you should be taking about 350 mg magnesium, because the two work together. The vit D won't do much for you without the magnesium.
Thank you for that useful Info....I feel so stupid as had no idea that what I thought was helping me was harming me! So I will chuck out my Multivits etc and start again!So would you be kind enough to list all the supplements I really should be taking and at what dose please? (I take the Vit D3 as I have osteoporosis from being overdosed with Levo 25 years ago.)
Also my Endo wants my TSH down from 0.01 to above 0.1, so he has changed my medication from 75mcg Levo and 10 mcg T3 . but now I am on 75mcg Levo and 10mcg and 5mcg T3 on alternate days which I understand from others on this forum that it should NOT be done as the supply needs to be constant.He is doing this as he said my Free T3 is "slightly on the high side" at 8.5 ( because of potential heart problems etc) and wants it down. So if I reduce my Levo to 50mcg and stay on the 10mcg of T3 instead? Would that be a better option as I understand that T4 is only a storage hormone and that T3 is the active form, and I really don't want my T3 reduced! I am just so confused by all this.
But if it is safe to lower my dose of Levo to 50mcg and take 10 mcg of T3 how will that affect my TSH and Free T3 or will I go hypothyroid? Sorry if I appear so stupid!
Well, first of all, you're not stupid! You mustn't think that. It's your doctor that is stupid - well, ignorant - not you. He should know all this and be guiding you - that's his job! But he doesn't seem to know much at all!
So would you be kind enough to list all the supplements I really should be taking and at what dose please?
What you should be taking depends on what you need. Taking more of something you don't need won't help and might harm, as I explained before. You might need calcium, but you won't know unless you get it tested.
So, we always recommend starting by getting the basics tested: vit D, vit B12, folate and ferritin. Then supplementing accordingly - we can help you with that once we see blood test results.
(I take the Vit D3 as I have osteoporosis from being overdosed with Levo 25 years ago.)
Very much doubt the levo caused osteoporosis. It just doesn't do that. How much were you taking, and what were your blood test results? More like nutritional deficiencies caused it.
If you're taking vit D3, are you also taking its co-factors: vit K2-MK7 and magnesium? D3 and magnesium work together so the D3 won't do much for you without it. And magnesium is the most important mineral for bones.
And we need K2-MK7 because taking D3 increases absorption of calcium from food, and the K2 makes sure it goes into the bones and teeth and doesn't build up in the arteries and soft tissues.
Also my Endo wants my TSH down from 0.01 to above 0.1
That's up, not down. And further proof of his ignorance! He's prescribing you something that is known to suppress TSH (T3) but he doesn't know that T3 suppresses TSH. Pathetic. And it suppresses it because you don't need it. What would you need it for? You're on thyroid hormone replacement so you don't need to stimulate your thyroid. And you're taking T3 so don't need to convert as much T4 to T3. And that's all it does. You don't need it.
so he has changed my medication from 75mcg Levo and 10 mcg T3 . but now I am on 75mcg Levo and 10mcg and 5mcg T3 on alternate days which I understand from others on this forum that it should NOT be done as the supply needs to be constant.
Once again, he has no idea what he's doing. Reducing your levo is not going to increase your TSH by one iota! I don't know why they think it will. The proof says the opposite but they keep on doing it!
And that is correct, you cannot alternate dose T3 - especially not on that tiney dose. It just won't help. Anything! It probably won't increase your TSH because there will still be enough in the blood to make the pituitary think you have enough. And it won't make you well, because the body won't respond correctly to it.
He is doing this as he said my Free T3 is "slightly on the high side" at 8.5 ( because of potential heart problems etc) and wants it down.
Actually, if the top of the range is 6.8, it's more than 'slightly on the high side'! It's very high. So, it should come down. But, reducing your T3 to 75 mcg every day should do it. Can you not cut up your tablets to make 75 daily?
So if I reduce my Levo to 50mcg and stay on the 10mcg of T3 instead?
Difficult to say without trying it. It won't increase your TSH, that's for sure. But whether it would bring down your FT3 I don't know. Presumably you are taking T3 because you are a poor converter, so doubtful the reduction in levo would have much effect on your FT3 level. But, worth a try.
Would that be a better option as I understand that T4 is only a storage hormone
Not only, no. But nobody is very sure what exactly it does. Some people live quite happily without any at all - me, for example. Other's need quite high levels of FT4 to feel well. It's a very individual thing. Our needs are all different. And you won't know until you try it. BUT it still has an effect on the TSH. So if his aim is to increase that, he's doomed to failure (and the poor dear doesn't even know it!)
But if it is safe to lower my dose of Levo to 50mcg and take 10 mcg of T3 how will that affect my TSH and Free T3 or will I go hypothyroid?
Safe, yes. Nothing unsafe about it. Highly unlikely to have any effect on your TSH. But the effect on the FT3 is anybody's guess. You'll just have to try it and see.
I am at my wits end with all this - how do I get my too high Free T3 of 8.5 down to below 6.5? I am getting really concerned about it as too high FreeT3 is I am led to believe,dangerous
I have been prescribed T3 in both 5mcg and 10 mcg tablets, and also have Levo tablets of 50mcg and 25 mcg. Can you suggest what combination I should use to try bring Free T3 down , and raise my TSH from 0.01 to what the Endo wants it at (- ie.over 0.1.)
I had requested a copy of the full blood results when I was seen at the Endo clinic but all got was the TSH level and the too high Free T3 result.in a letter.However I will phone and ask for the full results, and in the meantime get a Blue horizon test and if the results are abnormal I will send my Endo a copy - but will he even accept it, or dismiss it as "he knows best"? Thank you.
are you saying you took the last dose of T3 as usual on the morning of the test ?
if so then that is why the fT3 is so high .
fT3 rises very sharply in the first hour or so after taking it ... then stays high for about the first 6 hrs then lowers quite fast.... hence the advice on here to adjust time of last dose for testing purposes so you are testing it 8-12 hrs after last dose.. 8--12hrs gives a much better idea of what the levels are really for most of the day . Testing 3/4 hrs after last dose is going to show the absolute highest it gets to for a brief period of the day.
In earlier reply to SD... doesn't specifically say she did... but ... doesn't confirm she didn't. So just checking
here :
"Hi, Slow Dragon,
I will try to answer your questions here,
1. The thyroid tests were done at the hospital Out Patient Clinic at about10am after I saw the Registrar. The info I gave you is all that I got from the Endos letter to me. My GP does these tests when the Endo requests them, but the first appointment is about 10 am as they can't get the phlebotomists before then
2.I did not know about splitting my doses, I assumed they should be taken at the same time, I have never tried splitting them
Ah, yes, ok. And she doesn't say what time she took her last dose of levo, either. So, either she took them both 24 hours before the test, in which case we have a false 'low' FT3 - i.e. it's probably higher in reality. Or we have a false high FT3.
how do I get my too high Free T3 of 8.5 down to below 6.5? I am getting really concerned about it as too high FreeT3 is I am led to believe,dangerous
Well, let's get this business of when you took your last dose of T3 out of the way first.
But I wouldn't got as far as to say a high FT3 is 'dangerous'. Endos love putting the fear of god into us so that they can manipulate us more easily. Let's just say it's not recommended.
But, there again, it's not really about what is in your blood, it's about what gets into the cells, and we can't measure that. So, don't worry too much for the time being.
and raise my TSH from 0.01 to what the Endo wants it at (- ie.over 0.1.)
Well, the honest answer is, you probaby can't do that without making yourself ill. You'd probably have to stop the T3 altogether, and even then there's no guarantee that the TSH will rise. And a good endo would not be insisting that you try and make it rise.
but will he even accept it, or dismiss it as "he knows best"?
By the sound of him, probably the latter. He's not very clued up, is he. But it would be good for you to know exactly what is what.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
As your test is negative you could consider go on strictly gluten free diet
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Slow dragon, I read in the going gluten free posts that there was mention of the ZOE programme - which some people have tried with sucess. What is it? Is it to do with going gluten free? Is there I book I could get to read about it?I did see one by Zoe Harcombe - is that the ZOE that was discussed?
I am now thinking about getting a private complete thyroid test done then after I post their results on this site I might understand things better so given that you have a lot of knowledge of thyroid issues are you able to suggest the most popular lab ? If you can't then I will understand and just take pot luck!
You are legally entitled to request lab results from the surgery
Please can you add reference ranges.
Your endo doesn't understand T3.... it must be available to the system in a constant/steady and adequate dose.....not alternating doses
Alternating doses daily won't work.....that can be done with levothyroxine, but not liothyronine/T3
Do they understand that T3 lowers both TSH and FT4?
TSH is not a reliable marker following diagnosis....that is all it was designed to test but it has been used to monitor the dose with very troublesome results for patients.....evidenced on this forum.
With no thyroid you are relying on replacement hormone and that dose is individual to you
I think you may need to stand your ground and insist that your previous dose be reinstated if that is where you felt well
"The rationale behind thyroid hormone replacement therapy is to administer thyroid hormone in a way that restores thyroid hormone signaling in all tissues"......it is not to comply with a set of unrealistic numbers.
Unlike machines off a factory production line we cannot all be calibrated to set numbers....we are individuals with personal requirements. Medics just don't seem to understand this and base their diagnoses on a list on their computer screen
Is your FT3 higher than the ref range? If not you are not overmedicated!
Adult FT3 ref range is c 3.1 - 6.8 pmol/L
Your FT3 may indeed be on the high side and potentially problematic but....
Was testing done according to advised protocol?
At 9am
At least an hour away from food and drinks
24hrs after previous T4 dose
12hrs after last T3 dose
Timing affects hormone levels
Some of us need higher FT3....I'm one of that number...but over range is not generally advised
helvella will be able to comment on those price changes/availability.......hopefully he is available....thank you helvella.
Have you optimised vit D, vit B12, folate and ferritin.
You need to join up all the dots which so far doesn't appear to have happened!
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
If he knew anything about liothyronine pricing, he wouldn't speak as he did. It is far more complex than that!
Companies in Germany...
Well, ho hum. Sanofi own Henning. Thybon Henning is relatively available in the UK under private prescription but rarely under NHS prescription. (Only if there were a medical reason, not just because of price.)
Henning Thybon is 20 microgram so would require splitting. Which is also a reason some doctors would not prescribe it for doses like 5 or 10 micrograms..
Yes, Thybon Henning is cheaper than any UK product if obtained via the most cost effective route.
Liothyronine prices do change - but not quite as he suggests.
Current NHS Drug Tariff Liothyronine Prices
Link to a blog post of Monthly NHS Drug Tariff prices for Liothyronine products from January 2023 onwards.
Also includes link to information for Northern Ireland and Scotland. (Wales' data is based on England.)
Many thanks helvella...this should be most helpful for HilaryWB re her comment below....and for her response to this hot-air spouting endo!!
You are a star!
I will have repeat bloods in 3 months, and he also said the availability T3 is getting more difficult but companies in Germany are now supplying the UK, as the one manufacturer in the UK has ramped up the prices again,
he also said the availability T3 is getting more difficult but companies in Germany are now supplying the UK, as the one manufacturer in the UK has ramped up the prices again,
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
And further proof of his ignorance! He's prescribing you something that is known to suppress TSH (T3) but he doesn't know that T3 suppresses TSH. Pathetic. And it suppresses it because you don't need it. What would you need it for? You're on thyroid hormone replacement so you don't need to stimulate your thyroid. And you're taking T3 so don't need to convert as much T4 to T3. And that's all it does. You don't need it.
Help interpreting test results please?
Help with interpreting my results!
Help interpreting results
Results please help
