Cytomel not working

[hankpym]

Just got my results back after 1month on 25mcg of T3 only.

TSH 5.3

FT4 7.2

FT3. 4.6

So TSH has increased, FT4 has dropped from 10.9 and FT3 has dropped again.

Clearly the T3 I sourced is not what it says on the bottle. Either it is just filler or woefully under dosed. I took my last T3 tablet 14hrs before the morning blood test.

I will now bin the T3 and try Thyroid-S one grain a day for a month and retest again. I am worried though as the Thyroid-S is from the same company that supplied the T3.

So far I have not found anything that budges my levels positively or even increases my morning 35.8 oral temp.

[shaws]

How did you take your T3, i.e. one whole dose or split? Of course T4 will have dropped - you aren't taking any T4 and you obviously need an increase of T3. You also need to add the ranges for the results as labs differ and so do ranges. Ranges need to be stated in order for comments to be made.

[hankpym in reply to shaws]

Mainly in one dose. I did experiment taking it twice a day (50mcg) on a few days.

It felt better than being on Levo probably because I used to be on such a low dose of Levo that it was doing more harm than good either that or Levo does not agree with me.

[shaws in reply to hankpym]

I have added to my first question

[MaisieGray]

Why have you reached that conclusion? It appears simply from those results, and their directional change, that you are under-medicated and need a higher dose - 25 mcg when you are taking only T3 isn't likely to be sufficient.

[hankpym in reply to MaisieGray]

Surely it should have made a dent though? It did nothing but suppress my FT4 further. Actually I did experiment on a couple of days with 50mcg but only a few times during the month.

[shaws in reply to hankpym]

If our thyroid gland isn't working that is why we take replacement hormones.

If we take T3 alone, then the body isn't being given levothyroxine (T4) so T4 will be low or very low. 25mcg of T3 is around 100mcg levothyroxine in its 'effect'.

Blood tests were introduced along with levothyroxine, therefore if we add or take T3 or any other thyroid hormones the results cannot correlate but the aim is 'how our body feels' i.e. relief of symptoms and our energy is back. It is how we 'feel' that is the best judge if we need an increase or decrease.

The aim is a TSH of 1 or lower with FT3 in the upper part of the ranges.

[hankpym in reply to shaws]

So on that basis. If the T3 I took was genuine it should have at least started to take my TSH down, instead it increased it from 3 to over 5.

I had an appointment with a new endocrinologist yesterday who still thinks I am taking the low dose Levo. I was hoping for an increase in my prescription but he said that as I was now in range I should consider stopping thyroid treatment. Clearly he was a diabetes specialist who had no business being in that chair. He categorically refused to up my levothyroxine prescription (32mcg a day) which is why I am forced to continue to self medicate and find something that works for me.

[Angel_of_the_North in reply to hankpym]

Yes, evidently an idiot - did he not realise that your results were in range because you were taking levo (as he thought) and so stopping it would cause your results to go out of range again? And the usual levo starter dose for an adult is 50mcg. You'd probably do better with your GP who might actually follow the guidelines

[hankpym in reply to Angel_of_the_North]

I have tried 3 gps and now 3 Endos who refuse to up my dose. This is all costing too much money so I am treating myself.

I might try to see a private consultant at some point as recommended by others but will have to wait till the end of year as the cost and time off work is taking its toll.

If the Thyroid S trial does not make a dent then I will switch brands and suppliers and try again.

[Angel_of_the_North in reply to hankpym]

If you are self-medicating you don't need to see an endo or a GP. Spend your money on private tests and meds. Right now, it loos as though you need an increase. Why did you change from NDT? It took more than 6 months for me to see any difference in bloods when taking T3 and my TSH initially went up to the highest it has ever been (but I have central hypo so it doesn't really mean anything). Felt mentally better almost immediately though.

[hankpym in reply to Angel_of_the_North]

I didn’t feel right on it before but willing to try again as there could have been other factors at play. Also I am running out of options. I appreciate it might take many months to find a correct dose but blood work after one month should surely show some difference? If not then why do them? They cost money!

I will retest again after one month on 1 grain of Thyroid S and hopefully levels will start to move.

[Angel_of_the_North in reply to hankpym]

One grain of Thyroid-S is about the same dose as 25mcg of T3 so probably not enough and one month is really too soon to test after a change in dose or product. I'd try 1.5 grains of thyroid-S and wait 8 weeks before retesting. If no hyper symptoms, I'd increase by 1/4 grain after 2 weeks. If you were ever on levo, how much were you on and how long for?

[hankpym in reply to Angel_of_the_North]

On Levo is was on 32mcg a day

[hankpym in reply to hankpym]

I was on Levo for about 5 months with a brief 3 week trial of Thyroid S in December

[Angel_of_the_North in reply to hankpym]

Why such a low dose? The normal, recommended starting dose is 50mcg with increases every 6-8 weeks

[hankpym in reply to Angel_of_the_North]

They would not give me any more than that. My multiple attempts to get it raised failed on every occasion

[Angel_of_the_North in reply to hankpym]

I would have complained to PALS that GP was not following NHS guidelines and tried to see another GP.

[hankpym in reply to Angel_of_the_North]

Frankly I am exhausted with it all, 3 GPs and now 3 Endos. This isn’t rocket science, there are no contraindications. It will take awhile to find what works best for me but this is more easily done outside of the NHS.

I am shocked by the lack of knowledge of some endocrinologists and their disinterest in patients.

I have held a view for a long time that the NHS is only good at threat to life. They are not interested in quality of life whatsoever.

[MaisieGray in reply to hankpym]

No, you can't make assumptions/reach a judgement about what any thyroid hormone replacement will do, if you aren't taking enough of it. There are a number of negative feedback mechanisms in play between the thyroid:pituitary:hippothalamus that impact the effect of the meds we take, and vice versa. You can't reach an accurate understanding of how T3 might benefit you, or whether the tablets you have are genuine, if you are under-medicating. As T3 is made very cheaply (beyond the UK at least) there's no profit to be made in making "false" tablets, so I'd guess there's every good chance yours are genuine TBH. You can of course stop taking them if you wish, but if your intention in starting them was to feel better, it doesn't make sense not to give them a fair chance 🙂

[Angel_of_the_North]

It's 8-12 hours before a blood test for T3 so your free T3 is actually a little bit higher than the test shows. 25mcg T3 only is quite a low dose, so you probably need an increase (just 1/4 tablet at a time)

[hankpym in reply to Angel_of_the_North]

That would have meant taking T3 in the late evening which I don’t like doing. I took my last one about 5pm before the blood test first thing in the morning. Surely that would not have made a vast difference?

Little point in doing blood tests if we have to be so very exact with the timings I would have thought.

The results I got back were similar to what I was getting pre treatment which is why I think the T3 is fake.

[MaisieGray in reply to hankpym]

"Little point doing blood tests if we have to be exact" - that doesn't make much sense TBH. There's little point weighing ourselves if we don't do it exactly but keep one foot on the floor, or measuring how tall we are if we don't ensure the tape starts exactly at the floor and goes exactly to the top of our head. How we have our blood drawn in relation to taking our meds is entirely our own choice, but for useful results at least, consistency in blood draw conditions is a must - eg there's little point weighing yourself in the morning before eating, and then weighing yourself at the end of the day after three meals plus snacks, and expect your results to be comparable, for instance. So if you always have blood drawn say 3 hours after ingesting your meds, you will always get an accurate measure of your blood levels 3 hours after ingesting your meds, and whether or not there's a value in knowing that, you need to always do it that way if you want comparable results. However testing soon after taking your meds may very well result in less than accurate dosing decisions being arrived at, as blood hormone levels peak, and it's why it tends to be advised against in patient groups.

[hankpym in reply to MaisieGray]

Less than accurate is acceptable. Being completely on another map is not. I missed the window by 2 hours I refuse to accept that this would mean completely haywire results. Your analogy does not apply here. If I weigh myself at any time of the day the difference is less than 5% and could be factored in.

[Angel_of_the_North in reply to hankpym]

Not haywire just maybe 5-10% higher than it looks - I said "a little bit". I find taking T3 at night helps me sleep.

[greygoose]

If you felt better on 50 mcg, then the T3 is not fake, is it. That's illogical. So, if you felt better on 50 mcg, why didn't you stay on 50 mcg?

How do you take your T3? Do you take it on an empty stomach and leave at least an hour before eating or drinking anything other than water? Do you leave at least two hours before taking other supplements or medication?

Surely that would not have made a vast difference?

Little point in doing blood tests if we have to be so very exact with the timings I would have thought.

That's not logical, either. There are lots of blood tests for which timing is of the essence. It makes perfect sense if you think about it. There is actually a window of four hours in which you can do the T3 test - 8 to 12 hours after the last dose. Why don't you like taking the T3 late evening?

If you have a prescription for levo, why don't you try taking a little levo with your T3? That might be better for you than taking either of them on their own.

[hankpym]

I felt better on the T3 than I did on the low dose Levo. But I also felt better on no treatment than the low dose Levo.

So my logic is that blood results and the way I felt were very similar with no treatment (pre treatment) than it was taking the 25mcg T3. So it has done nothing for me and not moved any parameters in the right direction. The logical thing to do is surely cut this avenue and seek out alternative treatment?

[greygoose in reply to hankpym]

I don't know if this reply was to me, but I've only just come across it. I think your logic is faulty. Logically, if you're not taking enough T3, then it isn't going to do anything for you, obviously. But, you felt better on 50 mcg, then that just goes to prove that 25 mcg wasn't enough. So, no, I entirely disagree that the logical thing to do is cut that avenue. The logical thing to do it to continue taking 50 mcg and see how it goes - and even higher if necessary.

[Hidden]

Can I ask if you've been taking LA Pharma T3 CYTOMEL? A friend of mine just ordered it from the same site where I order Thyroid-S.

[Angel_of_the_North in reply to Hidden]

LA Pharma T3 isn't real Cytomel and apparently is very weak and generally just sold to body builders who take mega doses. Real Cytomel is made by Pfizer. I think LA Pharma just put that on the label as it is the best known T3 brand in the USA. Triotex is also poor. I'd go for Tiromel, Unipharma or Grossman Cynomel, or (Sanofi) Thybon Henning if you have a private prescription.

[Hidden in reply to Angel_of_the_North]

Interesting, thanks! Maybe that's why they only come in 100 mcg pills...?

I'll let my friend know, thanks!

[Angel_of_the_North in reply to Hidden]

Your friend might do OK on them, but I've only heard bad reviews.

[Hidden in reply to Angel_of_the_North]

Yes, especially if they seem to be more suitable for bodybuilders wanting to build muscles than hypothyroidism...

[Hidden in reply to Angel_of_the_North]

Hopefully, but it does seem that this brand is not really for people with hypothyroidism. My friend has been on Novothyral for years but can no longer find a doctor prescribing it so wanted to source some T3 to add to her T4 (which is the only thing her new doctor is willing to prescribe).

[hankpym in reply to Hidden]

Yes that was the one

[Angel_of_the_North in reply to hankpym]

Get some Tiromel or Unipharma and try again. I'd try 50mcg levo (if you still have a levo prescription) plus 6.5mcg T3 as a starter. Or 1.5 grains Thyroid S

[hankpym in reply to Angel_of_the_North]

I think I will give the NDT a fair shake first. If I do try T3 again I will try and get a more reputable brand. I am saving the prescription Levo up so If all else fails I can at least give a higher dose a fair trial and if it works will have some hard data to show my Endo.

[SeasideSusie Remembering in reply to hankpym]

I did mention here that I read something about it being very weak compared with other T3 and that some people have tried it and it was the worst T3 they've ever taken.

healthunlocked.com/thyroidu...

[Hidden in reply to SeasideSusie]

Yes, it does indeed seem weak and I have not seen any good reviews...not sure what the problem is, but it does not seem like something you'd recommend.