I've recently had some help from the great people on here regarding my thyroid problems, which I am super thankful for but I think I need more.
I've mentioned previously the horrible anxiety/restlessness/claustrophobia type symptoms I've had for a few weeks now and recently had a private blood draw to understand what is going on. The 2 notable results were very low vitamin D (nmol/L: 35.5 on a range of 50 – 250) and a high FT3 (pmol/L: 7.7 from a range of 3.1 – 6.8). I've come to the conclusion that I'm over medicating with my NDT regime (up until the results came in I was on 1 grain at 7am and 1 grain at 9pm). For the last 2 days I've gone down to half a grain at 8am, half a grain at 2pm, and half a grain at 8pm but I'm still feeling very unwell with the same symptoms. I'm utterly exhausted and desperate to stop feeling like ths because it driving me mad.
I know this is a bad idea but I want to drop my dosage again as Im convinced I'm overdosing on T3 because they symptoms feel very much like that. I think if I take less I might start feeling better
I'm not really sure what I'm asking for here but I guess I'm struggling to understand this disease very well. Because of this I feel like it's a very lonely journey. I've obtained the list of recommended practitioners from Thyroid UK and I will try and find a good doctor to support me because at the moment I feel hopeless. I really need some help as I have a baby girl arriving in July and I can't go on like this
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So, before you do anything hasty, let's thing about it logically.
Yes, your FT3 is high. But, you're only taking two grains. So, how long have you been on this dose? Do you have any other results on this dose? If your last FT3 on two grains was in-range, then your probably not over-medicated, you're just having a Hashi's 'hyper' swing.
And, if this is a swing, it won't last. The level will go down again, by itself, and you'll be hypo again, and in need of those two grains.
Are you self-medication or is your NDT prescribed?
If you're self-medicating just stop the NDT for a while until you feel hypo again.
If you're under the care of a doctor, do the same thing, but don't tell your doctor. Because if a doctor officially reduces your dose, you can have the devil's own job to get it put up again! They just do not understand about Hashi's swings.
I think the fact is you have Hashimoto's - an Auto Immune disease - and liable to ' swings in symptoms ' and erratic own thyroid hormone production - and I'm sorry I didn't pick up on this the other day :
So it can be doubly difficult finding a steady dose of NDT when your immune system is upset and causing havoc with your own thyroid hormone levels.
I have read that some people who have Hashimoto's can't tolerate NDT as just the introduction of natural thyroid gland, though from a pig, sets their immune system off again - and these people do better on synthetic T3/T4 treatment options.
Though think I read you were fine on NDT up until recently -
and we all know Thyroid S reformulated and many forum members had issues with certain batches - but prefixed 23 production now seems, to me at least, to be back to normal.
Since you are self medicating it makes sense to follow what GG has already suggested -
blood tests are just a snapshot in time -
and as you are in the driving seat with this -
you can stop the NDT for a few days and let this feeling of over medication pass - and then restart your NDT when ' this swing swings back ' and the immune system attack on your thyroid over as your thyroid likely further damaged and even less productive than before.
Which also may account for you having been on 3 grains and now on 2 and unable to settle on a regular dose - as your thyroid is not with any stability and very much under the control of your immune system.
Have you looked into food sensitivities - like gluten, dairy, wheat which can cause stomach and gut issues and been checked out for celiac disease and anemia ?
I don't have this AI disease and read many forum members follow the research and suggestions of Dr Izabella Wentz who writes under thyroidpharmaist.com
Thank you all for the advice...I'm in a bad way so trying to take in as much as possible to alleviate this.
greygoose - I've been on 2 grains of NDT for about 2 years. The last test I had was in Oct 2021 so probably not that helpful (although happy to post those if it does)
I'm self medicating so I will stop taking my NDT today and see how I feel for the rest of the day. These swings are really hard to cope with but if I can better at recognising them then maybe adjusting my dosage as and when they appear is the way to go.
pennyannie - you have nothing to apologise for, I'm really grateful for your advice and the time you have taken to read through my posts. I'll start looking at the food side too
if I can better at recognising them then maybe adjusting my dosage as and when they appear is the way to go.
Absolutely. That's about all you can do.
So, if you've been on that dose for two years, I imagine that the FT3 you had tested in October 2021 was not over-range or you would have lowered the dose before. So, my money is on the 'hyper' swing, rather than over-medication.
Do I continue with my vitamins whilst I'm not taking NDT?
just to jib in I have found out recently my vitamin D is under range and I feel absolutely wiped out too. Different to you as actually I was under medicated ( but thought I was over and stopped everything for a few days) 🙄. My results after reintroducing after 8 weeks showed I was still very hypo (worse than pre diagnosis) it’s frustrating as hell. Day by day you’ll feel better and then you might have a bad day but just try and keep seeing it as a temporary blip and be patient (🙃) I’ve had so many of these episodes now and it’s tough. Brand changes, bad batches, good ones being withdrawn from production but this is a journey. I sometimes wish we had a monitor like a diabetic wears
That's interesting to know, I started taking vitamin D after the blood test but I agree, the ups and downs are very difficult to cope with and seem to be increasing. Sorry you are going through the same but it good to know I'm not the only one
Yes Vit D levels look exceptionally low. Remember to take K2-Mark7 too. According to the Grassroots website, symptoms are very similar to hypothyroid symptoms. As many of us are aware hypo and hyper symptoms can be remarkably similar.
However the experts think a hyper event happening.
It’s not quite clear if you are pregnant (you could be adopting). If you have a pregnancy nearing fruition (even adopting mothers have been known to report similar) just generally your hormone levels will be at an all time high, doing the job they were designed for. Could this be creating some effect? Your decision to stop thyroid meds for a few days would probably also work for this eventuality.
Even if you were not hypothyroid, the body is doing its own ‘thing’ at the moment!
Haha. Not to worry...reading back my message I didn't make it that clear!
I only started taking Vitamin D last week at 4000ui when I realised my blood test from 2021 showed it was very low. I suspect I may need to increase my intake temporarily to get my numbers back up
Hello again, I've now been off my NDT (2 grains) for 2 days and my hypo symptoms have abated somewhat but i'm still feeling jittery. The anxiety is making me worried about when i will start feeling hyper again and then starting my NDT again. does anyone know how long it is advisable to remain off my meds for? It's hard to say but i dont feel like i'm having any hyper symptoms at the moment but my mind is so messed up with all these thoughts i really dont know.
I've been keeping a short diary of how i feel during the day (scoring my morning, lunchtime and evening out of 10 based on how i feel) and yesterday evening for the first time all symptoms went away and i felt perfectly normal, however this morning i've woken with air hunger and the jitters so i'm so confused.
I can only say ' hang on in there and do what you feel makes sense for your body ' -
I haven't Hashimoto's but with Graves and post RAI thyroid ablation so presume without a working thyroid - and have only ever over medicated myself once and that was enough -
My symptoms were such that my whole body became so sensitive - even to the bed sheet at night just touching my body and I couldn't go out, let alone drive or get my own food shop -
The trouble is some uncomfortable symptoms are for some people the same - whether they are hyper or hypo -
I'm afraid it does come down to reading your own body symptoms -
Would it help tracking yourself on blood pressure, pulse and body temperature -
I did this building up my NDT - and found it pretty accurate -
though first off you should have base line readings so to compare to - but at least you could go forward with some numbers and see what's happening with these physical facts.
how long did it take for the hyper swing symptoms to reduce? I had done the same with NDT and have been off it a week and still feel jittery and exhausted although it is better than it was
Hiya! Unfortunately the respite from stopping my NDT was temporary my anxiety symptoms have not really gone away. Someone here mentioned looking at getting my Vit D levels back into range and that's what I have been working on in the last few weeks as I have read many anecdotal stories of ppl with very low Vit D have symptoms similar to mine. This has helped a bit tbh but I'm still anxious and I think messing around with my NDT (the stopping and starting) may also be causing issues...my TSH, FT3 & FT4 are all over the place from my last blood test. I'm now back on 1 grain of NDT and will test my blood again in 4 weeks to see if I need to increase that
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