I’ve been taking two grains a day of NDT for about two months but over the past month I haven’t been feeling very well and I’m concerned that it’s due to my thyroid/medication.
The symptoms I have experienced are:
-Feeling in a constant state of fight-flight and like I can’t cope with any stress
-Anxiety
-Feeling overwhelmed, like I can’t cope with life
-Irritability
-Hot flushes and sweating
-Diarrhea/loose stools
-Racing heart
-Exhaustion
-Back to back colds
-Lightheaded when standing
My blood test results were:
TSH 0.06 (0.27-4.2)
T4 15 (12-22)
T3 6.0 (3.1-6.8)
Ferritin 75 (15-445)
I know my GP will freak out and think I’ve gone Hyper but I thought a low TSH was normal with NDT.
I also noticed the following results were abnormal on my full blood count:
Total white cell count 3.73 (4-11)
Mean corpusc. haemaglobin 32.5 (27-32)
Any advice would be appreciated!
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Flossiewestie2020
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Blood tests were introduced for levothyroxine alone.
Before that when we took NDTs it was all about how 'we felt' on a particular dose. The dose was gradually increased until our symptoms resolved. It was taken with one glass of water and wait an hour before eating.
1 grain of NDT is equal (approx) to 100mcg of levothyroxine.
If you adjust your dose gradually you might find it relieves some of your symptoms. Usually we start on a dose and gradually increase it slowly.
I am not medically qualified but recovered my health due to Dr John Lowe and the following link includes some of his information. Dr Lowe died due to an accident and is a great loss to those who have dysfunctional thyroid glands.
Hi Flossiewestie2020, how long have you been on NDT in general? Do you split your dose or do you take it once? How long after the last dose did you test?
Above symptoms indicate overmedication, not everyone feels well with ft3 at that level, even you fit into the range and especially if your dose was taken 24 hours beforehand. I have a similar issues, I'm the best with FT3 around 5.8 or 5.9 maximum.
When we take too much, hemoglobin tends to be higher, along with hematocrit and red blood cell count, not sure if these were also tested.
You could potentially decrease your dose by 1/8 or 1/4 of a grain and see if this eases out? I wouldn't drop more.
I wouldn't worry about TSH as an indicator, it's not reliable once you are on a hormone replacement.
Another thing is that you ft4 is lower in range and I have issues when mine is too so I add a bit of Levo (even though I did terribly on Levo only). Some people are okay with low ft4 on NDT, some not.
Thanks, that’s really helpful. I take one grain first thing then the other about 2pm. I had the blood tests at 9am, so I hadn’t had any medication since 2pm the previous day.
It’s so complex! How do you even reduce the dose by 1/4 or 1/8 of a grain?! I struggle to break them in half 😂 How much Levo would you add?
P.S. Think I’ve been taking it since about May. I felt ok on one grain but my blood tests were WAY out, which is I was advised to increase. Might go down to 1.5 grains and see 🤷♀️
Ok so the last dose was 19hrs before the test. Bear in mind the are ranges for a wide range of population, so not everyone would be good within same ranges.
I get quarter grains from the pharmacy so it's easier, it's hard to split into 4, but possible, just takes a bit of training and very, very short nails 😊
I know what you mean, seen now your previous post and results, but sometimes there is a big difference between 1 and 2 grains in what results we can expect after. I find changing dose by 1/8 or 1/4 grains fine, either up or down, anything more and my body fluctuates wildly, specialty when you seen your results on 1 grains vs 2 grains, huge difference, you may not want to drop that much.
Another thing is blood results are not always representative of the way we feel, and we should go by symptoms largely, sometimes symptoms are improved when it hasn't been yet reflected in results.
I am currently experimenting as even though I'm within "ranges" for ft3, I feel overdosed at times, when it goes over 5.9 in a range of (3.1-6.8), jury is still out 😊
Thanks for this. I think I’ll try 1.5 grains initially purely because I can’t split the pills!😂 I was on that for a week before starting two grains previously and didn’t really notice the change in dose immediately. I definitely feel like I’m on too much - I felt pretty well initially but I guess now it’s built up.
Ok fingers crossed for 1.5 grains 😊Thyroid meds increase cortisol levels, as when we're hypo, we can have low cortisol or mix of low and high sometimes. Definitely experiment a little with the dose you're on and look at your symptoms more than labs, especially with NDT. Best of luck!
Oh yes, you definitely sound over-medicated. Can you not cut into quarters with a pill cutter? But if you don't think you can, then try cutting pills in half and see how that dose goes.
I’ve just been re-reading The Thyroid Patient’s Manual by Paul Robinson, and he says folate should be in the upper quartile of the reference interval and that mid-range and below is a concern. I don’t have anything particularly helpful to say in answer to your post, I’m afraid, but your folate level jumped out when reading other people’s helpful responses.
Armour doesn't suit everyone and is more expensive than others. I'm just coming off Armour as I had side effects. And yes, the pills are a nightmare to split - they are so crumbly. You can get quarter and half grain pills, but expensive too. Erfa splits a lot better.
'Fight-flight, anxiety & feeling over-whelmed' identifies with adrenals issues. Either elevated cortisol or high adrenaline when cortisol runs low. Light headed when standing is a classic symptom of poor adrenal function as is the old Dr P’s lack of achilles reflex. Have you taken your BP recently?
Sometimes when adrenals are flagging the rate that thyroid meds boost metabolism is quicker than the rate tired & flagging adrenal function can keep up. If this were me I would reduce to the lowest possible thyroid hormone meds I could manage that still encouraged well-being, whilst supporting adrenal function. This might entail a saliva stress test to see what cortisol levels are & what circadian patterns are doing.
TFT’s look good, (TSH is expected to be low when medicating T3 incorporated within NDT) but ferritin is low which could influence how well NDT is tolerated. Are you supplementing iron? Also thyroid hormone antibodies were previously high which can cause bodily inflammation prohibiting meds from working effectively, hence the gluten-free diet is advocated on the forum.
Low WBC’s are common in Hashi after years of elevated lymphocytes, etc., and top of range MCH indicates early onset anemia when RBC’s are too large. This is usually the result of not absorbing enough VitB12 and/or folate. Are you supplementing methylated versions of VitB12 & folate. Also you could try Betaine + pepsin (if you don’t have stomach ulcers) that helps with poor absorption issues .
However, high MCH could also be encouraged by the increase in metabolism, similar to when members start optimising thyroid hormone replacement & iron drops due to the increased metabolism stimulating the whole erythropoiesis production/processes. If this were the case MCH would normalise as other bodily systems sync'ed together.
Hi, yes I’ve been supplementing iron for two years - my ferritin was originally 2 so I thought 75 was quite good 😂
I thought it might be to do with my adrenals - I have had more stress than usual recently but it’s like I can’t handle it at all! Is it pretty much just a case of eating well, lifestyle and stress management to support adrenal function. I haven’t had my BP tested for a while. My actual GP would probably laugh in my face if I mentioned my adrenals as they don’t believe in it do they?😂
I haven’t had my antibodies checked this time but I imagine they’re still elevated. I’ve been GF for two years due to coeliac but that hasn’t made a difference.
I take methylated B12 which has folate it but I could supplement separately.
I was anaemic before but I’ve been taking iron for two years since then so would be surprised if I was again. I have been ill constantly recently so I don’t know if that’s linked to the low WBCs.
Thanks so much for your reply - it’s all so complex!
You haven't " gone hyper " but likely are a little over medicated going by the symptoms you list above.
Three months ago you said you were feeling fine on 1 grain in the morning but unsure as your blood test was all over the place - and your Hashimoto's antibodies were raised.
Are your Hashimoto's antibodies still raised in the above print out ?
I think I would drop the PM dose and wait to give your body time to adjust :
Just back track a little, regroup, and think again and if you need to build up from 1, go slowly in 1/4 grain increments :
It maybe that the best dose for you is around 1 + 1/4 or 1+ 1/2 or 1 +3/4 grains ?
Your TSH will likely be low / suppressed irrespective of what dose of NDT you take -
Is your doctor supportive and does s/he know that you can't dose NDT on a blood test ?
I find I feel at my best with my ferritin up at around 100 : folate 20 : active B12 75++ and vitamin D at around 100 :
Thanks for this. Yes, that’s what my gut is telling me to do! This is the first time I’ve had blood tests through the GP since taking NDT due to the blood bottle shortage 🙄 Everything I say she disagrees with and then refers to the endocrinologist who also disagrees but then I tell her that I know more than both of them😂 It doesn’t really matter what she says anyway as I’m sourcing NDT privately.
She thinks all of my vitamins are already high. I do supplement them all so not sure how to get them even higher 🤷♀️
Ferritin is very low. I feel much better generally and can stabilise NDT when my iron levels are good. When I had low ferritin ( stored iron) I was struggling. Just something for you go consider that there's a few key vitamin levels that need to be optimal otherwise getting on right dose of NDT is really hard !
Cool, thanks for this. My ferritin was originally 2 so thinking it’s going to be affecting me less at 75😂 I supplement all the key vitamins - any tips on getting them higher?
Oh wow at 2 you probably needed an iron infusion! I read that anything under 100 is not ideal and will often cause symptoms. Also vitamin D is so important and I've found I have to take massive amounts to maintain any sort of decent levels. I guess although you're taking supplements it looks like your body's still not getting enough.
Hi, what ndt brand do you use? I agree with the comment that when we take t3 tsh and ft3 are useful, although your symptoms are more close to over than to under medication. Why you don't try 1,5 grain?
This is normal after lowering for me, I feel fatigued and depressed for the first few days, sometimes even 5-7 days until it levels out again. Hang in there! If it goes beyond a week, it could mean that lowering by 1/2 grain was too much (after all, 1/2 grains it's 19 mcg T4 and 4.5 mcg T3).
Yeah, I get them too sometimes when dosage is off. See how you are in a few days. There is also always a little chance that you may need to add Levo/T4 to Armour if you dont feel well with lower ft3 and slightly lower ft4. Everyone is different and I have just realised I need to lower Armour to add Levo again as I feel bad with low ft4 and high or normal ft3 together.
Thanks. I’ll see how it goes. It’s all so complex! It’s frustrating as I’ll feel well for a while on a certain dose but when it accumulates it all goes wrong again!
I know, I'm the same as you.Been on meds since 2012, all well until 2017, NDT has too much T3 for me and not enough T4. It's taking me 4 years to figure it out and several dfferent meds - synthetic t3, t4 and different NDTs.
I was doing well on 2 grains of NDT in 2015/2016, then it wasn't enough so my GP increased to 3 grains and then 4 grains 2016/2017, was not well on any of these doses in retrospect (always anxious, restless, feeling hot, tired). So now I'm at 2.75 grains of NDT and 6.25 T4 last 10 days, I was trying to phase out T4/Levo, thinking that maybe I need to be on NDT only, but it seems that's pushing my ft3 higher and higher.Next step will be to go to 18.75 t4 and 2.5 grains of NDT and try eventually 25 t4 and 2 or 2.25 grains of NDT.
Wow, how do you keep up?!😂 I just found out I’ve got Covid so maybe that’s responsible for some of the symptoms I’ve been having since reducing dose 🤷♀️
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