Any advice would be great! Thanks in advance....i have been suffering tremendously since thyroid removed Dec 2018. long story short I was put on synthroid 100mg with t3 5mcg x2 day ...6 weeks later on those meds my TSH 0.2. I continued to have issues and was put on Armour 60mg..5 weeks later my TSH 23.400
TSH 23.400 ( 0.358-3.740)
Free T3 1.69 ( 2.18-3.98)
Free T4 0.51 (0.76-1.46)
I did not take my pill morning off blood test ...i did not fast. i have always done this my TSH has never been this high. I hot blood work done around 2pm i usually take pill 5am.but i didn't take morning of. I always take all vitamins at night around 7-8pm. I take neurontin occasionally and its only 100mg at night...i drink coffee 1hr after pill...i don't eat till 1hr after pill. I'm at a complete loss of why my TSH is super high?
Any advice?
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BethanyOxe
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Levothyroxine is T4 alone and is an inactive hormone and has to convert to T3 which I'm sure you know is the Active thyroid hormone.
When we take levothyroxine or add T3 to it, the results wont correlate as blood test was introduced along for levothyroxine alone.
Your dose of Armour 60mg is equivalent to 100mcg of levothyroxine.
As you are taking NDT, maybe the following link by a scientist who was an Adviser to Thyroiduk.org.uk and would never prescribe T4. He prescibed T3 for patients who were resistant to thyroid hormones (i.e. the need larger doses than those who aren't resistant) or NDT.
please help me understand what u are saying on synthroid alone I had tsh 0.5 and then she lowered my synthroid to 100mcg and add t3 5mcg x2 day to see if it would help me my TSH went to 0.2. then she switched me to Armour which I thought was a natural dessicated medicine and 5 weeks later it blowed to 23.400 which is unreal to me...my t3 has never been above 2.1 except 1 time I was on antibiotics. it's almost like im not taking the medication
First, I am very sorry you've had your thyriod gland removed altogether.
Were you feeling well on your dose with TSH of 0.5?
I am not medically qualified but she shouldn't have lowered your dose due to a TSH of 0.2 but many seem to believe we've gone 'hyperthyroid' for some unknown reason to me when TSH is so low. This reduction resulted in your TSH rising which shows you were then on an insufficient dose.
I have read that those who have no thyroid gland at all should be given a 5:1 or 4:1 combination of T4/T3.
10mcg of T3 is around 40mcg of T4.
If our TSH is rising we're on an insufficient dose of levo or whatever other hormones we might take.
I felt increasingly worse as they slowly increased my dose synthroid 88 to 100 to 112 to 125..with TSH 0.5 I had electric shocks...pins and needles....twitching..floaters...dizziness....after TSH got below 1.0 pins and needles went into face and everywhere...
been tested for ms ...had 2 mri lp emg nct..the whole nine yards...i had 2 lol spots of brain...but 2nd neuro says i dont have ms...so endo was only changing meds cause of symptoms not cause of lab range
I'm sorry but I'm sure they wont cause any problems.
You can try taking one anti-histamine tablet 1 hour before your next dose and if you don't have those unpleasant symptoms ask the pharmacist for another make of levo. Your GP will have to give you another prescripton.
You are not resistant if synthroid moves your levels to 0.2. If it didn’t work you would feel it. I was twice in the emergency room because I couldn’t breathe due to low hormone replacement also after TT. I suggest you try Tirosint, it helped me a lot and got much better after I started using it. Good luck! I feel your pain
For what this is worth, I have no thyroid (after a TT) and I take one and a half grains of Armour. We are very sensitive to the T3 in Armour so keep measuring your blood levels as you change your dose (either way).
With NDT you should leave a gap of 8 - 12 hours. You left too long between your last dose and the blood draw, that's why the FT4 and FT3 are so low.
The TSH is something else. The reason I asked you if you took biotin is because it can sometimes skew results. But, if you don't take it, then that's not the reason it's so high. If I were you, I would ask for a retest. Do you always have your blood tests done in the same lab?
Do you get blood drawn at the earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test? If not it is suggested we get the best results by this method.
Well, we don't really recommend getting labs in the evening, because that's when your TSH is at its lowest. But, if the TSH doesn't matter to you, then yes, take it at least 8 hours before the blood draw.
So, you've been getting a false low FT4/3 since you started NDT then? But, that would work out well if you take it at 5.30 am and get labs at 3 pm, that would be 9 and a half hours.
Well, if you can, it would be a good idea to try and get a new test done in a different laboratory. It's possible that there is something in the usual lab interfering with the TSH test. TSH antibodies.
60 milligrams of Armour Thyroid (that is, one grain) claims to contain 38 micrograms of T4 and 9 micrograms of T3.
You were on 100 micrograms of T4 (Synthroid) plus 10 micrograms of T3.
That is, a reduction of 62% in your t4 intake. And 10% of your T3 intake.
I find it completely unsurprising that you are now significantly under-dosed and have a high TSH.
Although there is no way of guaranteeing exact equivalnce, I would have expected something nearer 120 milligrams (two grains) of Armour Thyroid might be a closer approximation to the previous dose you were on.
Or have I completely missed something about what you posted?
I also came to say the exact same thing. This is roughly half the previous dose, and that's the simple answer to why the thyroid panel looks much worse.
Yes, "official" conversion figures do suggest that one grain is approximately equivalent to 100 micrograms of levothyroxine. That is not the whole story. Few here think that is valid - I think you'll find many would suggest somewhere closer to 75 micrograms of levothyroxine.
(I have long suggested that official figures are intended to provide a "safe" conversion when switching from levothyroxine to desiccated thyroid.)
Not only that, but you were also taking 10 (or 9) micrograms of T3. At a rough-and-ready conversion, that might be around 30 micrograms of levothyroxine.
So you are still rather short of the previous doses you were on.
Why don't doctors see it is the big question! Doctors tend to be very careless with our health, and know very little about thyroids. This is why many of us are on this site, to double check everything a doctor tells us.
Thank u. I had a TT Dec 2018 had papillary Thyroid Ca and have never been right since as they slowly increased dose i developed pins and needles all over with electric shock sensations dizziness fatigue and twitching everywhere....endos says its not Thyroid related and Neuro says no to MS...i feel like left side nerve damage...
In our experience “endos” are often diabetes specialists who know chuff all about thyroid disorders.
And alas, even if they aren’t simply jumped up diabetes specialists, often what they think they know about thyroids wouldn’t cover a postage stamp.
It’s not entirely their fault—they’ve been taught that wonky thyroids are easy to treat. And sometimes they are. But not always. This forum exists because of the number of people who’ve discovered their doctors don’t really know what they’re taking about...
So. Your Endo is wrong.
An equivalent dose to 100mcg of Levo and 10mcg of liothyronine is much nearer 120mg of Armour, as Helvella has already said.
In addition to what others have said, I think telling you that your body doesn't absorb right, rather than the doctor admitting they didn't dose you right... It's classic doctor logic trying to blame you for what's going on!
I would say the clear next step here is to just carry on adjusting your NDT dose as you would have done anyway. As others are saying, 2 grain would have been closer to your previous dose. But if you think you may have been overmedicated at that point, you could maybe move up to 1.5. Stick with that and have a retest. This time follow all the rules correctly and leave an 8-12 hour gap between your previous dose. In future you can adjust in quarter grains to try and find your sweet spot.
From what you were saying in your original post it sounds like your Endo was dosing you on TSH, and the suggestion was that because your TSH was low you must be overmedicated. This is a bad idea at any time, but It's very important not to do this when dosing NDT, because anything containing T3 tends to push the TSH down much lower. Instead focus on freeT3, which is the number that most closely reflects symptoms, and of course pay attention to your own symptoms.
I have a previous post leading up to all this ..its very long and drawn out....but she didn't change dose because of being hyperthyroid...please look at other post under my name about pins and needles...i became slowly and worsening symptomatic as the goal was to get me to TSH 0.5 since I had cancer....i got to 0.5 with pins and needles in face and all over muscle twitching all over so she only let me try synthroid and t3 and now armour to see if it help my symptoms..please please look at my previous post and it might shed light
Hi BethanyOxe, unfortunately there is no real alternative to tuning your hormone level until you reach your own ideal level.
The first step in the is getting the freeT3 high in range. You can't dose based on TSH, because it just isn't sensitive enough. Get the freeT3 high in range, and its only if you get to that point and you still have symptoms that you need to move onto trying the next thing.
The simplest explanation is that your symptoms are caused by the very very low freeT3.
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