Still here, feeling dreadfully weak. Im having weird weak quads and calves (weaker than usual) 5-10 mins after food and also 5-10 mins after Armour.
I take 1 1/4 grains in 2 split doses AM and 3 PM ish, giving a TSH of 0.09 (0.27-4.2) FT4 15.3 (12-22) FT3 4.6 (3.1-6.8)
Recent NHS Iron panel scuppered but Dec 2023 Ferritin 79.7 (13-150) Iron 20 (5.8-34) Folate 23.98 (>3.89) Active B12 130 (37.5-150) this after 5weeks abstaining, Vit D 102 (50-175)AM cortisol slightly up ,presume T3 related
Over the last 9 years I have had higher doses of NDT than this, different brands, different timings, T3 only, Itching and scratching on various Levo.........
Corrected Achlorhydria to within range with Betaine/Pepsin and Enzymes when gut inflammation permits, but this leg weakness is similar to past on off experience but this has kicked in after yet another food reaction, and hives from potatoes.
Ive always thought that any of my scewed reactions have been down to lack of thyroid meds inhibiting thorough digestion.
BUT if i increase my meds is the shaky weak legs too much meds? ( pulse 65-70) BP Averg 97/62 sometimes lower regularly, sometime a little higher not very often, well hydrated and freezing cold.
OR too little meds? If i go up from 1 1/4 gr to 1 3/8 gr my TSH is 0.067, T4 17.1, T3 5 and i still feel dreadful and TSH is even lower....Is TSH that low a bad problem ?
Im exhausted so signing off, but any thoughts would be greatly appreciated, Regards and every best wish G
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Gillybean1
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Not at all. It's low because you don't need it. The pituitary considers that you're getting enough thyroid hormone - well, to be honest, the pituitary is getting enough thyroid hormone, but the rest of you can still be hypo.
The most important number is the FT3, and yours isn't very high. At 5 it would only be 51.35% through the range. Most hypos need it higher than that to be well. And it's low FT3 that causes symptoms, not low TSH. So, I would say your problems are more than likely down to not enough NDT.
Hello lovely Greygoose, so lovely to hear from you again and I hope you are doing ok?
Thank you for your swift reply and taking the time. I think I am still battered and bruised from last years appalling f/u consult where i was told iwas "a waste of time, waste of her time and waste of an NHS appointment". This because im 'overmedicated' 'youve shut your pituitary down' .......and i aswered back 'and yet my T4 and T3 are still in range'. That didnt go down well , and i was dismissed off the records.
Maybe its not ideal to shut things down, but she had no explanation for low body temp,freezing cold in Summer, hair loss, dry skin, CFS, gut probs etc etc Just said its not a thyroid problem............Funny that because I have the antibodies/ DIO2+/thyroiditis !!
Ive got caught up with the same old story as many here, if they routinely blood test us we are overmedicated and suffer reduction of meds should we need a continued script. I do my own thing with NDT but not sure for how much longer financially or availablility.......and yes its true I have not got better on any of it. And started to try and fit ;'the range'
I am wondering to try yet another Levo (itch scratch) if i can (although I was told last week Eltroxin wont be available to me via NHS due to price being £1.47 for 28 tabs,and NHS are going to offer Accord for 37p for 28 tabs, regardless of whether they disagree with folk) and add some T3 in as needed.
Im going to increase my dose, possibly split to 3 x per day to not get even more shaky and leg buckling, but i will probably drop weight which i can not afford to do, im like a bag of bones.
Thank you for being there, I always smile when I see any posts you contribute to us all......some of your soul spurs me on everytime.
Talking of wastes of spaces, that endo you saw is one of them! Of course you haven't shut your pituitary down! What a stupid thing to say. If you had, you'd probably be dead before you even got to see her, because the pituitary makes a lot of different hormones, not just TSH, and she should no that! You wouldn't have any cortisol if your pituitary shut down, because the adrenals wouldn't get any stimulus from ATCH, and a lot of other problems, too. Stupid woman.
And what a way to talk to a patient! Very unprofessional. Didn't you report her? I would have.
Have you ever tried T3 mono-therapy? That might be worth trying. If you've been buying your own NDT, you could switch to buying your own T3. It could be the T4 the problem.
I have not reported her yet, but fully intend to ,because I cant live with the thought that she might demoralise another human fighting to get well. She is a bully and a disgrace to her profession. I still have time to report this, but I need alot more energy to take it on.I did stand my ground with her (on this phone consult nhs) I wasnt going to give her the pleasure of me in tears.
I did try T3 only for 10months ,I was not enough for me, I felt terrible and was better with some T4. I just dont think I have the balance between the two right yet and the longer it goes on my adrenals suffer and so on and so on.
T3 is not so easy to buy in UK without a script as the Brexit stuff squashed alot of avenues..... but I will look into it again.
Hi Gillybean1. When on ndt your TSH will always be very low making you look hyper. Your Ft4 should be mid range or a little higher and your Ft3 should be toward the top of the range. You need more hormone. I hope you find a doctor who can help you.
Thank you for taking the time to reply. Yes they are low. Ive increased before but always felt lousy on that too, but my gallbladder struggles so much more on this lower dose (to satisfy Consultant who wants detectable TSH)
I cant carry on like this im just not able to digest and absorb.
Hi All4utwo, Thank you for taking the time to reply. Yes they are low (trying to satisfy Consultants who want detectable TSH) . I have dosed higher but still felt awful, but I cant carry on with this dose I cant digest and absorb at all well.
What a painful struggle you've had. I've recently split my NDT to every 8 hours, and this enabled me to double the dose. Suddenly my face is no longer blanched white. I can run around the neighborhood and work all day.
I suppose I should be grateful that the specialist who thought I was overmedicated at 3/4 grain has been silent since the last test results (which I manipulated to achieve a TSH above 1 by stopping the NDT for two days).
Someone else who posted recently mentioned a headache as another sign of too much NDT. (Besides unusually high heart rate) If the headache lasts for more than an hour or so, you might have gone too far.
A friend who is a GP said all doctors are taught that their patients are ignorant fools and they shouldn't listen to anything that's said. 😱 Sounds like yours took the training to heart.
Thank you for taking the time to reply.Wow that pretty impressive....at 8 hour intervals how much do you take, and would you say that was the game changer for you? Ive tried 6, 7 and currently on 8 hours apart, but only twice a day......maybe I gave up to soon adding a 1/8gr at bedtime too....I felt it stimulated a bit ,but maybe I should have given it a bit longer than a week to access. Just out of interest would your TSH have been below 1 by much had you not tweaked it for 2 days? I havnt tried that, the nearest I got to tweaking was to stop meds noon and do home kit test at 5am to get the highest TSH poss.
Ive never had headaches with NDT even when I was on 2 1/2gr (still felt dreadful) You have made me rethink the timings now...to spread the dose.
I think what upsets me most about this consultant was her lack of empathy and human kindness and downright nastiness. Using her power to say 'im dismissed' and none of my team will be permitted to see you (when i asked if someone else there could help me)
Its frustrating ,because dismissal means refer back to GP whom will then have to request another Endo.
I noted on the scathing false letter back to GP she named a Consultant who I could be referred to, I got tipped off by an NHS friend who checked the Consultants data, turned out to be a T3 Withdrawl Clinic !! .........how nasty and unhelpful was that. Set up for a fall.
Apologies for the rant, it still upsets me.
Thank you again for your advice and support, every best wish , G
I'm sorry you have to go through such rubbish with medical providers who are such squibs.
I got up to 65 mg (or 1 grain) at eight hour intervals. Last night my body announced, "Hey! Three grains in 24 hours is overdoing it. Step away from the bottle."
Not exactly a pounding headache, but a noticeable sensation in my head. My resting pulse is about 8 beats per minutes above what's "normal." My whole body feels energized. And as I type this, there's a little quiver in my fingers. Cool science experiment. I will now go a day without any NP at all and then decide if my mind can work out a way to use all those 1/2 grain NP tablets, or if I want to do 12-hour intervals.
The head bandage on my little avatar is for the traumatic brain injury. Sometimes it's hard to do the maths.
You have a cohort of brilliant administrators on this discussion board who have a breadth and depth of knowledge that far exceeds your GP.
Is NP a brand of NDT? I know the recommendation on here if your adding is to add small increments and wait 6 weeks and retest, but if your pulse is fast and heads thumping that significant. I had 1 thyroid storm once, never to be forgotton, not just fingers quivering ,it was a horrible jittering crawling all over feeling.
Brought on by myself, back then I wasnt up to speed on seperating supplements well away from thyroid meds. I stopped abruptly a build up Vit/Min drink that id been having with breakfast (an hour after meds). Big mistake, by the 5 day of abstaining the true effect of the NDT kicked in and boom overmedicated storm.
Btw she wasnt a GP but a 'gestational-diabetic-consultant' in Endocrine.....which was odd because im not diabetic and 65 so that ships sailed!!
The bandage is cool. Every best wish and thank you for taking the time. G
NP Thyroid from Acella is a desiccated thyroid product from the USA. Details in my world desiccated thyroid document.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific desiccated thyroid document.
This link takes you to a page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Latest updates include all declared ingredients for all UK products.
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