My GP has asked for advice from an endo and finally agreed to start me on a trial of 25mcg Levo.
In my medical notes, it shows the message from the endo to my GP:
"(..) symptoms (..) on a back ground of normal TSH 2.77, FT4 9( lower side of normal) AND FT3 4.7 which is not classic subclinical hypothyroidism. However If you think that patient benefits from thyroxine replacement due to low normal FT4 9, then you can give her levothyroxine 25mcg once a day and check her TFTS in 4 to 6weeks to maintain TSH of around 2, if TSH is suppressed then stop thyroxine replacement."
Can someone explain to me
* why this is not classic subclinical hypothyroidism?
* why the AND is capitalised? Is there a significance to the FT3 value?
I think understanding their thinking will help me advocate for myself better.
Thanks!!
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Dandelions
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This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
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Standard starter dose of levothyroxine is 50mcg
Starting on too low a dose may make symptoms worse
Stick with it
Get blood retest 8 weeks later and then push for next increase to 50mcg
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)
I've been given Mercury Pharma. I'm a bit worried about starting on such a low does, but doctor has asked for another blood test in 4wks, so fingers crossed they are happy to increase then.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Classical sub-clinical would be high TSH and “normal” T4.
So the comment reflects the (mistaken) conclusion that your Free T4 is “normal.”
Im basing this on my guess that the ft4 range is 12-22?
Is it?
If so, 9 is low /just under… let us know the range though.
As you know, in range is NOT normal or optimal.
As for your FT3- we need the range. Is it 3.1- 6.8? Let us know, but chances are your result falls “in range”. But if I’m guessing right, you are only 43% in range, where generally most of us feel better closer to upper quarter tile 60-70% through range. Everyone is different though.
25 mcgs of Levo
So here is what yo expect. 25 mcgs is a baby starter dose! For children or petite adults. More expected would be 50 mcgs.
Many doctors don’t understand that thyroid hormones do not “top off” your body’s thyroid hormones. They suppress your own production, and replace.
Some doctors think - you’re only a little hypo, so here’s a little Levo. It does not work like that.
So if you can get 50, do that. If you can only get 25, get your bloods at 4 weeks and get an increase to 50.
Also realize though that you are beginning a lifelong thyroid hormone replacement regimen. You’re body will suppress your own, and you will need to work up to a full replacement dose (generally 1.6 mcg per kilo body weight - not an exact science but good general guidance.)
The reason this is important is that your TSH is going to drop. Thyroid Stimulating Hormone will drop when it senses the exogenous T4 you are taking, and sees that it doesn’t need to send out the message for more anymore.
Given the note “if TSH suppressed, stop replacement.” Again… NOT how this works, but most of the doctors at the NHS do not know this. Therefore, if you start this journey, in a few months you will be fighting the fight to keep your Levo.
Sorry I had given these before, but not put them in my profile. (Unfortunately, I was caught off guard when the nurse proposed a test on the spot around 11am. )
Thank you! It's scary to start on 25mcg and then to be dependent on the whim of doctor to increase, when their messages are another example of their lack of knowledge. I was really hoping I'd get Levo and now I feel nervous about taking them!
Do you have any resources /research on working of Levo and it suppressing the body's hormone ? So everybody always has to be on their own personalised full dose of Levo? Will this be stable throughout your life? Is it still better to take the meds even though it means I'll be stuck with them for life then?
I think I know the answer to the last question, but more information will help me ease my worries. Also, my partner who's normally very supportive, has just gone: 'surely doctors know at the very least how the meds they prescribe work.' 🙄 So if you know where I can find more info on taking Levo can you point me in the right direction please?
normal TSH 2.77, FT4 9( lower side of normal) AND FT3 4.7 which is not classic subclinical hypothyroidism.
Why is it not classical subclinical hypo? Because with classical SCH, the TSH would be over-range, and the FT4/3 somewhere within the 'so called' normal range.
Your results show TSH within range (though far from 'normal'!), FT4 below range, and FT3 probably low in-range, but higher percentage wise than the FT4
That is why the 'AND' is in capitals, because the FT4 would usually be higher than the FT3.
But, there are a couple of things this so-called 'specialist' is missing here:
- To have a TSH that level with an FT4 below range, means that there is a problem with the pituitary. It is not functioning correctly because it is not reacting to the low FT4. A classic sign of Central Hypo.
- The FT3 is higher than the FT4 because the thyroid is struggling with lack of stimulation (TSH), and therefore starts making more T3 than T4 to keep you functioning. That is a classic sign of a failing thyroid!
So, this clever-clogs endo is not as well up in his classics as he thinks he is!
This makes sense! You're very good at cutting straight through the noise. Thanks.
I've absorbed a lot of info on here, but thinking it through I notice some gaps. Can you help me fill them, if you don't mind.
Normally, your thyroid makes T4, which gets converted to T3. But your thyroid can also make T3? So I've started making T3, because my body (somehow?) noticed a lack of T3 and is skipping the T4 production. Does that sound right?
Pituitary reacts to low T4 with an elevated TSH. Does it also react to low T3? You say it's a classic sign of Hypo that it's not happening with me. Does that mean everyone has a pituitary gland problem? What does that look like?
Not surprised about your last sentence . We'll see. At least he seems happy to trial treatment. The least clever they think they are, probably the better.
Normally, your thyroid makes T4, which gets converted to T3. But your thyroid can also make T3? So I've started making T3, because my body (somehow?) noticed a lack of T3 and is skipping the T4 production. Does that sound right?
Right on all counts.
Pituitary reacts to low T4 with an elevated TSH. Does it also react to low T3?
T3 levels have a stronger effect on the pituitary than T4.
You say it's a classic sign of Hypo that it's not happening with me. Does that mean everyone has a pituitary gland problem? What does that look like?
Sorry, don't understand the questions. I said it's a classic sign of Central Hypo. But what isn't happening to you,
Why would everyone have a pituitary problem? Don't understand.
What does what look like? Central Hypo? Low TSH and low Frees.
The least clever they think they are, probably the better.
So true!
However If you think that patient benefits from thyroxine replacement due to low normal FT4 9, then you can give her levothyroxine 25mcg once a day and check her TFTS in 4 to 6weeks to maintain TSH of around 2
However, that is never going to work! The dose is too low to raise your FT4 and could even make it lower as the TSH drops even further and the thyroid stops making any hormone at all. A normal starter dose is 50, increased to 75 after six weeks. And a TSH of around 2 is still too high to be euthyroid, let alone for a hypo, as hypos usually need it much lower than that to feel well. Which is why I say he knows nothing about thyroid.
Thanks greygoose Having that checked by you, makes me feel much more confident to argue my case with doctors.
I said it's a classic sign of Central Hypo.
Ah! I missed that. I'm now reading up on central hypo. I hadn't come across that term yet. Is that something doctors understand? Okay, that's maybe too much to ask, but is it something they are happy to diagnose or will be good to mention to them?
Can central hypo occur alongside Hashi's?
However, that is never going to work! The dose is too low to raise your FT4 and could even make it lower as the TSH drops even further and the thyroid stops making any hormone at all.
Yes, I realise this now. Which makes me very worried.
Would your advice be to just start with the 25mcg as prescribed and argue my case in 4weeks to increase dose?
Or..?
I don't feel I have much choice as it was difficult enough to convince her to trial Levo at all. But I'm also scared that such a low dose will make me feel worse and then get the Levo taken back off me again.
The majority of doctors, be they GP or endo, have never heard of Central Hypo and certainly wouldn't know how to diagnose it, because they are so concentrated on the TSH.
That said, there are those out there that know about it, because we have many people on here that have been diagnosed with it. So, write a new post asking for Central Hypo aware doctors and you might get some recommendations. Otherwise, you have to know exactly what you're talking about when you talk to doctors about it - but that's the only way you're going to get a diagnosis.
Yes, you can have CH along side Hashi's. No reason why not.
I'm also scared that such a low dose will make me feel worse and then get the Levo taken back off me again.
It won't be the levo making you feel worse, it will be lack of it. Because you won't be on a high enough dose. But, never admit that to doctors! You have to say something like 'I feel so much better with the levo but feel that I really need an increase in dose to make me feel 100%'. Or something along those lines. Lie through your teeth to get what you want! If doctors can play silly buggers, so can we!
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On T3 and T4 has dropped and TSH rose?
endo email
What now?
Confused. Do I really need Levo?
