I am really struggling and at my wits end been building Armour thyroid up since March, got up to 2 and a half grains in August then prescription got lost at hospital so run out for over two wks… was given 200 mcg Levo to replace Armour… had horrendous time building it back up again over another 3 wks!
Results in August appointment after running out meds and back oN 2 half grains Armour NDT for two wks:
August
TSH 0.27 (0.27-4.2)
T4 12.7 (12-22)
No T3 (Grrhh)
Told to carry on as not true reflection, of course , and test again for next appt
November
TSH 0.21
T4 13.2
T3 5.5 (3.1-6.8)
Based on these results and not well at all, they reduced by 1/4 Grain at night and will test in two wks (know not long enough to affect results but think he’s keeping an eye on me with having palpations etc etc ) hoping to bring TSH up but that will bring T3/T4 down ??
Endo really seems as if wants be off Armour and back on Levo( tried for 4 years after thyroid removed due to cancer) told me again about how bad T3 is and about recent trials in Korea… listing all side effects agsin in letter to GP… suppose covering their backs… I mentioned Cost as seen in on here how costly it is… but said nothing to do with that and how lucky I am to get it on NHS as postcode lottery or words to that effect.., only available to ex cancer patients!
Anyway sorry for long saga but can I just ask other peoples experience and levels with Armour please!
Do many people feel well on low TSH and T4 with good T3… know we all different but is it worth me asking for bit of Levo to bring T4 back up, see if that helps with symptoms!
T3s better than it ever has been I think… not seen many results over years but ones did see wernt over 4 (3.1-6.8)
Started taking an interest in results in trying to get better and have some quality of life… learning very slowly (brain fog etc) from this brilliant site and you great people!
All tests done first thing on empty stomach… no Armour for 12 hours… no meds etc within 4 hours!
Sorry again for saga just not sure what to try and ask in next appointment, Endo scares me to death, so abrupt and rude, sends BP sky high and shook all way through appointment!
At my wits end… just want to feel better, got lots of other things going off too!
Looking forward to hearing from you lovely people!
Hope you having a nice wkend peeps 😊xx
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Blanche1960
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Blanche, I have endo up on t4 t3 combo. I have ended up on a dose that leaves my TSH undetectable, t4 at 50%and t3 72%.On combo it is an individual thing. Some folks are well ith low ft4 and high ft3 while others need both over 50% through range. However most of us on combo have a suppressed TSH.
Thanks Lallatoot, glad you seem to have found your sweet spot! yeah seen it on here before where suppressed TSH is ok, annoying so many Drs just go on that… I’m not well at all so maybe will ask to add Levo T4 to get it up further… not holding my breath lol
Hi There I saw your before n after photos it's amazing how well you looked your before look is how I have got except I go 8st my eyes puffy just a very unwell look can't believe how I have changed since being on Levo
It is not a good look!And it is barely an existence. Just being can be a terrible struggle Hang in there. Only 7.5 mcg daily of liothyronine t3 has helped me and time for the body to heal. Been 3 years total since I started combo, 2 of those adjusting doses and 1 on a stable dose and now I can look forward to each day knowing that things will be ok.
I couldn't do well on Levo and this week went back to NDT. I had half my thyroid removed and the other side has long ceased functioning. I have to keep my T4 a bit lower so I take 1 1/2 grain of NDT with 20-25mcg T3 and still raising that T3. I'm in the US and pay for health insurance but I had to step outside of that model because the physicians who practice within this racket don't have the time or even care. It's like cattle in, cattle out. "Here's some Levothyroxine, now get out of my office I have diabetes patients to see and can't be bothered with your complaints!" Endos have been the laziest most unhelpful people in the medical industry when it comes to treating my hypo, however most physicians will take the lazy approach to treating hypo. I sought out a functional medicine practice after going from one doctor to another. Not sure if those are as common in the UK but perhaps you should at least seek out a private practice. I had to take treatment into my own hands. He thinks T3 is bad for you? That's real ignorance and laziness. I've been on T3 only before and without a functioning thyroid I can tell you that it was hard to take too much T3 and even if it happens all you do is lower it and within a few days it's gone. The real danger is loading people up with high amounts of Levothyroxine. My liver enzymes and cortisol were elevated and going on Levo resulted in lower amounts of T3 than before I went on Levo and was functioning with only half a thyroid gland! What could be more dangerous than leaving hypo and thyroidless patients with less levels of T3 than healthy people?
Hi sorry you’ve been through it too…absolute nightmare trying to just feel well, like you said Most Endos just don’t seem to care as long as numbers are in range! There are many people world wide who are well on T3 but Endo tried to frighten life out of be by quoting new research papers from Korea for people who’ve had thyroid cancer and take T3… apparently!!! Side effects listed on letter to GP too include Death!!! There are many people on here doing well On T3 so taking it with pinch of salt! Just trying to get right combination, some things are better than when taking just Levothyroxine but some are not… so just trying to get sweet spot with everything else that’s going off!
'Korean research on people taking T3 with side effects including death' ?
assuming its referring to synthetic T3 not NDT, then it's got no relevance to someone taking NDT . (.... have you seen it ?, get him to give you the reference for it so we can read it )
The T3 in NDT is a rather different kettle of fish to synthetic T3 .. it's bound to .. erm carriers( can't remember the right word )
pretty sure i've read on here that there have been no recorded deaths associated with NDT. and it's been used for a very long time.
Hi tattybogle is it ok if I private message you the contents of the letter regarding the trial (if I fathom out how to do it lol)… sorry don’t think I ought to have mentioned it don’t want to scaremonger people!
Thankyou for taking time to reply, much appreciated!
I don't think this endo has a clue how to dose and monitor Natural Desiccated Thyroid.
When optimally medicated you will have a suppressed TSH and that's ok :
Your T4 may well be lower than you ever saw it when on T4 monotherapy BUT your T3 should be proportionately higher than you ever saw it when on T4 monotherapy.
You track on T3 - not a T4 and certainly not a TSH.
No thyroid hormone works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - do have any current results there ?
I 'm sorry you are reliant for your health and well being support on such an inhumane person who leaves you stressed and uncomfortable at appointment.
Is your treatment on the NHS ? Can you ask to be referred to another endo ?
Armour - any Natural Desiccated Thyroid brand - does not fit into the ranges - you dose to the relief of symptoms and not a blood test and was the original successfully used treatment for over 100 years and long before we even had blood tests, ranges and guidelines and long before we even knew of T3 and T4 thyroid hormones.
Many years later we learnt that desiccated thyroid derived from pig thyroid was so successful in treating hypothyroidism as it contained all the same known hormones as that of the human gland - namely - trace elements of T1. T2 and calcitonin plus a measurable amount of T3 and a measurable amount of T4.
Doctors dispensed little nuggets / slithers of pig thyroid for patients to chew on :
If it worked the same size nugget was given again - if it wasn't successfully a larger piece of pig thyroid as dispensed, so forth and so on until a measure of nugget was reached that resolved the patient's symptoms.
Big Parma launched T3 - Liothyronine and T4 - Levothyroxine on the back of NDT and then set about marketing their alternatives to Desiccated Thyroid and doing what Big Pharma do - gain market share by fair means or foul.
Hi pennyannie, thanks for your informative reply as usual! It’s so hard to tell what’s causing what as have other conditions too but didn’t feel as though I’d hit the sweet spot on 2 half grains… symptoms of over medicated and under medicated but Endo definitely wouldn’t rise it… he reduced it by 1/4 two wks ago, think he wants to get TSH up but couldn’t find words to explain that low TSH is ok and I’d like to try and get T 4 up now T3 good…. not good at getting words out at best times but he just buts in! not felt any different from then as had really bad chesty cough/bad for 12 days!
Going to try and discuss this hopefully on telephone appt this week, was wondering what peoples thoughts were on adding bit of Levo to get T4 up… he wanted bloods doing again tomorrow before appt but not going to be much difference in couple wks!!
Endo said had T3 and T4 before and didn’t tolerate it but only had 3 month trial on one dose and never got chance to tweak dose just put me back on Levo couple yrs ago now!
He says in his opinion T3 is not right for me, and NDT is not going to work but felt horrendous on Levo!!
Sorry for rambling but answer to your question yep do think some things have been better, some worse! Sleeping better, muscle aches/pains better, (had insomnia for years )but mental health/migraines/knee/leg pain been worse on NDT but only had full dose for couple months so early days, know you said before can take long time to get full benefit! Had anxiety depression for years but building Armour up thought was going to kill my partner, he’s just retired this year so getting full brunt of terrible moods and awful night terrors! On a good note night time palpitations and jitteryness not as bad! Think this is why Endo wanted me to reduce it and eventually come off it!
My latest bloods are B12 647ng/L(197.0-771.0)
Ferritin 57ug/L (30.0-400.0)
No recent Vit d but take better fir you mouth spray
Folate 3.7ug/ L sample slightly haemolysed
Take magnesuim and Thorne B complex
Sorry for long rambling essay, you may need a lie down now😄
I find I need my ferritin up at around 100 for optimal conversion of the NDT:
Everywhere I researched when my ferritin was down at 22 suggested ferritin needed to be at least over 70 for T4 to T3 conversion.
Folate needs to up at around 20 :
Vitamin D up at around 100 :
B12 look ok :
Can't say much more as I gave up listening to the professionals and started self medicating and obviously not as complicated a case as your good self :
Don't worry about the rambling - thanks for your concern about my finding my way through it !!
I wouldn't say i'm 100% but I am much improved and less stressed looking after myself :
My confidence was at an all time low when I started my research and believed I couldn't possibly do this for myself but it has actually been a massive learning curve for which I am grateful as I am now self reliant and the proof of my own pudding ??
However, I would like a guaranteed supply source and the NHS picking up the tab as my issues are because of the treatment the NHS insisted I have !!
Ah that’s good to hear, know it’s a constant battle! What a shame you can’t get treatment on NHS… I’m lucky that way and where I live they do give NDT to thyroid cancer patients… least I had the chance to give it a go!
Glad you’ve learned how to treat /manage things yourself… just shouldn’t be this way at all!!! seems like a lot of people do the same on here… I’m still learning very slowly, a lot goes over top of my head brain fog/constant headaches/fuzzy head makes it hard to concentrate… my excuse anyway lol
I just don’t know what to do at my wits end but lovely people on here helping! Could I just ask you one more question if that’s ok: Did you feel ok on low T4 and good TSH/T3… position I’m in now but still not good… know that’s a quite normal result for NDT but am thinking about asking for small dose of Levo tomorrow to try and get T4 up… or just agree with Endo and come off it (dreading that took soo long to build up) been with armour for 6 months but only two months on 2 half grains so tempted to give it but more time!
Struggling with depression/anxiety and weight too…very poor appetite but can’t lose an ounce… did read thst T3 helps you loose weight… I’m such an oddball lol
I was ok on T4 monotherapy at 125 mcg daily for around 8 years post RAI thyroid ablation in 2005 which I learnt slowly burns out the thyroid in situ so possibly had some of the insidious symptoms creeping in, but thought ' that's life ' !!
When I reached 65 I wasn't allowed to run with a TSH at 0.01 - where I've always been if to be well - and my dose cut back to 100 mcg and over 2 years became increasing unwell.
I don't wish to write about this here, again, but there are details on my profile page, just press the icon alongside my name to go to my profile if you wish, as I still get very upset resurrecting all this.
When discharged from hospital I had a T3 at 70% through the range and a T4 at 90% and felt fine - THS was just inside the bottom of the range :
When I paid for a blood test to find out what was going wrong with me my T3 was at 25% and my T4 at 100% : TSH was down at 0,01 : and told I was very lucky to have any T3 at all !!!
Now on NDT after around 10/11 hours from dose my T3 comes in at around 90/110% and my T4 at around 25/30 % and I'm not over medicated as with NDT it doesn't respond to these blood test ranges which were introduced to be used by Big Pharma for the dosing and monitoring of their synthetic T3 and T4.
It took around 6 months for the NDT to settle in my body and over the next year I lost weight though haven't any scales but it's around 2 dress sizes.
My brain was the first thing improved when I started T3 - it was as though my pilot light had been reset, repaired, replaced and turned to ' on ' .
Below is a research paper though it still seems that RAI treatment is the first and in some cases the only treatment offered by some hospitals which I find s really disconcerting.
Thankyou so much for this insight in to your journey! So hope I haven’t upset yoo bringing it all back… I have read your sad story so sorry you’ve been through all this!
So much of this sounded like me, been to lots of nhs depts and just got dismissed! I had RAI after thyroidectomy 4 yrs ago now as cancer spread from one half of thyroid to other as took them 11 months to diagnose just saying it was a cyst! Anyway what I’m trying to get to is a lot of my symptoms sound very similar… my eyes mouth etc all dried up I have no saliva can’t speak etc… then started with burning mouth now tongue too! Went to dentist to get checked as just had cancer scare with mass in back of nasal space which looked malignant on MRI so did two ops to biopsy it but luckily benign! Interstingly I asked my GP to test for Sjorgens last month but hadn’t include it when bloods came back!
You have given me some hope Thankyou so much!! Maybe Endo concerned about low TSH with my age, I’m 62… know you said your dr wasn’t happy with your low TSH at 65! Will keep slogging on hopefully my pilot light will turn on and I loose some weight lol ! I lost over 4 stone 4/5 yrs ago when they were investigating “cyst” in thyroid, weight dropped off me but no alarm bells with Gp just praised me how well I looked despite feeling really poorly but never checked thyroid levels (well can’t see any on records) till after first op to remove first half of thyroid, then said in range, went on Levo after second op to remove other half which of course I needed!
Hopefully one day I will feel well enough to speak up and challenge the powers that be, I’ve got few months supply of Armour so think will play about bit more with it, and maybe go on HRT to help depression/anxiety flushes etc as antidepressants just make me feel even more rotten!
You have made me feel more positive about my “ journey “to getting well after reading your remarkable story, just wish you could get your treatment on NHS… soo unfair!
OK - first of all stop and think = TSH is irrelevant - think T3 levels :
Treatment for primary hypothyroidism after RAI is said to be more difficult :
RAI is known to trash vitamins and mineral:
RAI is known to trigger symptoms similar to Sjogren's Syndrome and fibromyalgia :
RAI aka spent nuclear fuel ( nuclear waste ) is absorbed by other glands and organs in the body including breast tissue, the genitals, pancreas and gastric mucosa.
Studies show an increase in cancers especially those of the thyroid gland ( I've still got mine ) and small bowel.
Possibility of parathyroid damage:
Possibility of salivary and tear duct damage:
RAI not suitable for those of child bearing age and wishing a family:
Chance of significant, unhealthy weight gain :
Chance of depression :
I'm sorry to read that you have symptoms similar to me - the only defense is that as you had cancer it likely makes sense to be thorough and maybe have RAI to fully eradicate any rogue cells - I don't know - but that tends to make some sense to me.
Whereas to introduce RAI to a cancer free patient who has an auto immune disease that attacks the thyroid seems a nonsense - as I still have Graves AI disease and now hypothyroid.
Did you know that saliva has a pain killer within it 6 times more powerful than morphine : I haven't any research papers on this but heard it on a ' game show 'but it definitely felt like that when there wasn't any saliva there and my mouth felt like cracked concrete as I tried to eat as I didn't seem able to chew or bite anything and lived off everything being soft and soups and tinned rice puddings went down well.
So, now, my saliva s back, took around 2 years of hellish pain but I can't taste much as my mouth feels burnt and my taste buds all but disappeared and I only eat bland food as seasonings burn.
I did find help reading around on the McMillian Cancer Care research pages and most of the above facts I found through reading Elaine Moore's first book - Graves Disease A Practical Guide - which is not really relevant for you as our health issues are different to mine.
I'm so sorry that I can't even recommend any OTC products that relieved the no saliva symptoms - I tried many but none offer relief - I just used to try and sleep away the pain.
I did buy eye drops - and these did relieve symptoms but they MUST BE Preservative Free whether drops, lotions, sprays or gunky grease - as my doctor and hospital consultant prescribed me products with preservatives which simply compounded my issues and problems.
Don't know if this helps at all but that's about all I know:
Your ability to utilize any thyroid hormone replacement will be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and inflammation, and any physiological stress ( either emotional or physical ) depression, dieting and ageing will down regulate your T4 to T3 conversion.
You are living with a lot of pain ( if anything like I experienced ) and this will inevitably be compounding your ability to utilize the NDT and if well enough T3 only maybe the better option.
I didn't start self medicating until my saliva stared to return and felt I was getting better and spent over a year just building up my vitamins and minerals and walking round the block to build back up my stamina and strength.
I also started taking adrenal glandular, as RAI is known to be taken up, to a lesser extent, by these glands - so just presumed these glands were damaged as well.
My goto book - Your Thyroid and How To Keep It Healthy - written by a doctor Barry Durrant-Peatfield kept me busy learning how the body works in basic easy to read language and instrumental in my getting better as was and is this amazing forum.
Ah thank you, yes I do see why forcing RAI on cancer free patients is not good… yes I didn’t think twice about accepting it, made total sense… just meant the symptoms were very similar, but of course I wasn’t Forced to have it!
Will take on board your helpful advice and tips!
Can see now I can get ferritin/folate better and this might help as like you said lot chronic pain/stress etc going off which doesn’t help! Have a cauda equine nerve problem in all saddle area (inside and out) so constant pins n needles which cause electric shock like pain, muscle spasms and twitching all the time… drives me crazy, no treatment just try and forget about it! So one thing on top of another!
Never mind won’t take any more of your valuable time up I’m soo appreciative you’ve taken the time for me! You certainly know your stuff… pity you had to go through soo much to have to learn it all!
You look after yourself, hope you continue to feel better and improve!
I forgot to mention I did start a course of Reflexology and back, neck and head massage and found this to be useful.
The lady was an ex- nurse and on learning of my health issues spent considerable time massaging around my neck and jaw and I do believe my salivary glands responded to this treatment.
Hi, glad this helped you, thanks for this it’s something I could try, I have TMJ so get lot Jaw pain/facial pain!
Just a little update had telephone appt today with Endo and he was polite and friendly this time… so my daughter having a go helped! Staying on same reduced dose…2 1/4 grains till after Xmas then see how things are my TSH was just back in range so he’s happy with that… T4 just in range and T3 good so carry on stable dose now and hopefully things pick up very soon!
Leave you in peace now and thank you soo much for your valuable info!
Hi Blanch Can you tell us your symptoms. I'm not a fan of blood tests for NDT.
My Symptom Guide
Feel cold through the day or night - take more
Body temp 97 F (36.1 C) or less - take more
Heart Pulps - take less
Tremors -take less
Numb finger tips, foot soles, burning tongue, crawling scalp - take less
Sore joints - normally more, but if you really get it wrong - too much.
Head ache -take less (although it's normal to get a brief light (60min) headache or head spins after taking daily dose)
Brain fog - take less
Dry eyes - take more
Dry skin - take more
Low heart beat - take more
High blood pressure - tooo much
Massive weight loss - tooo much
Feel exhausted at 3-5pm - take more
How I increase/optimize dosage
Experiment with NDT dosing - add 15mg extra for a few days, do you feel better or worse. If you feel worse go back to the base dose and wait a few weeks then try again.
As an example I'm 6'2 male and still have a thyroid but my base is 60mg. I throw an extra 15-30mg in most afternoons. And 50mcg of Levo in every 3-4 day. The Levo keeps my temps much more stable compared to NDT.
Hi thank you fir this, sorry late reply! Ah that’s interesting about adding Levo to keep temp stable compared to NDT I’m always hot but had menopause symptoms too for years so put it down to that sometimes but my whole body feels as though it’s burning, worse when standing up, have really bad daily headaches, brain fog, itching, burning mouth/tongue, high BP palpations in night, pains in one leg/knee burning feet at night! Sorry you did ask lol
Endo reduced NDT by 1/4 two wks ago but been unwell with bad chesty cough/asmtha so but early to tell… think palpations not quite as bad and muscle aches/pains seem bit better … looking to take me off if It I think and go back on Levo, which has lot same symptoms but I sleep better now than I have done for years so one good thing, had severe insomnia for years!
Going to ask endo in next appt about adding bit T4… TSH T3 ok now, but reduced as TSH low and having palpations I guess! Like I said he’s mentioned about those trials but know it’s load of bunkem, lots of people take it world wide safely! Just wants me off it as in his opinion it going to work!
Sorry you’ve had journey trying to get well too, glad you managing it at the mo, light at the end of the tunnel for me! Thanks for taking the time to reply!
Blanche1960. Is it possible for you to take someone with you when you next see this person? If you have a witness to all he says and does, he may consider being more considerate and polite....and you will hopefully feel supported.
Hi, I take my daughter with me for face but mostly on phone since pandemic, had face to face last week! She went back in and told him that my ridiculously high BP was consequence of seeing him ( would have had to stay in hospital till gone down but luckily cuddle from my new grandson sent it down! and that we didn’t feel listened to, she told him how worried she was about my mental health too so hopefully be better next time but not holding my breath, just the way he is obnoxious and rude etc etc!!! My daughter is intelligent but doesn’t understand all about TSH/T3/T4 knew basics before pandemic when she came to all appointments… but she doesn’t get it all, levels/meds are changing all the time, so hard to try and explain, which I’m not very good at, picked lot up on here but slow learner, blaming Fibro/ME brain fog!
She does write things down if we need to ask questions but usually appointments cut that short he’s dictating outcome letter to my GP while we are there and same on phone, never known drs do that before and seen many in outpatients as get older😊
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