As per my previous post, my labwork has been uneven on Armour, FT4 14.4 (12-22) 24%, FT3 6.1 (3.1-6.8) 80%. I feel lopsided too, I can't sleep (not sure that's high FT3 after 24 hours of dose, or low FT4, or both). Felt warmer on higher FT4. When I increase NDT even by 1/8 grain, I feel apathetic, palps, tremors, restless, pulse goes up to 97 resting. Without increase my pulse is still high resting, going up to 84 at night.
I have reduced NDT by 1/8 and replaced it with 6.25 Levo. I don't have tremors, feeling a bit warmer, even, but my face and body swell up so I look visibly puffy and I am very tired.
Am I missing something or is this normal in the first few days/weeks? I also suspect that my FT3 went down a bit (it does even if I reduce by a smidgen). On higher NDT I look slimmer, but I have tremors within 5 hours of taking the dose and other overdose symptoms. If I split the NDT it's the worst (peaks throughs all day), I did trial and error of this for 2 years. So I need to take it all in one go. Also, was on synthetic t3 t4 for 1.5 years, terrible, NDT makes me feel better overall.
All my clinical symptoms resolved on T3. Also our doctors and endocrinologists seem only to be trained upon the use of levothyroxine for hypothyroid patients, so when we take 'options' i.e. NDT or T3/T4 they cannot quite figure out what's going on.
Blood tests were introduced for levothyroxine alone (T4) - should convert to T3 but may not do so effectively.
Therefore I don't think they should take notice of blood tests, but put more concentration on whether the clinical symptoms are resolving. That's what our 'old-fashioned doctors did' - before blood tests were introduced along with levo.
Dr John Lowe (deceased) was an Adviser to Thyroiduk. I shall give you some links as he would only prescribe NDT or T3 for patients who were resistant.
He just took one blood test for the initial diagnosis and thereafter concentrated on small increases and relieving symptoms. There are some links in the following that may be helpful:-
Some of the links within may not work but the rest of the info is invaluable. He also produced Thyro-Gold a non-prescription thyroid hormone due to people not being able to get prescriptions. His wife Tammy runs this.
Thanks Shaws. I guess my question was more related to whether I should have increased NDT by 1/8 with labs like above and when I try increasing NDT I get palps, tremors, pulse of 97+. When I drop NDT to add t4, I feel calmer, but more hypo, as my t3 goes down I suppose? One avenue I have not tried was adding t3 to NDT. I have all meds available to me, so that's not a problem, I have a partnership with my doctor. But! I still can't figure it out. If I do better with more t4 or more t3 and less NDT.
When NDT was first introduced, there were no blood tests at all.
The main emphasis by the doctor was 'is the patient improving'. Small Doses were gradually added until the patient's symptoms resolved.
The most important question is 'how do we feel' on a particular dose and if still symptomatic a small increase every couple of weeks might do the trick.
If you increase slowly and then felt your dose was 'too much', you reduce to the previous dose and hopefully that will be your optimum dose. I would advise taking the new dose for a few weeks and don't adjust too quickly.
Unfortunately I have done that. I started with 3 grains of Armour. That was way too much, dropped to 2.75, still too much, went down to 2.6, felt better, but underdosed and overdosed symptoms, checked bloods after 8 weeks - low ft4, high ft3. Was not able to increase NDT by even 1/8. Then dropped NDT to 2.5 grains and added 6.25 t4, that did the trick, but only for a couple of weeks and felt really hypo after, assumed my FT4 went up just by a bit, but FT3 is definitely lower. Decided to drop NDT again to 2.3 grains and add t4 and now I feel absolutely awful. I have also tried to add another 6.25 t4 to 2.5 and I was too hot, had tremors etc. Not sure how to find the balance.
Ideally you start low and slow, building up weekly by 1/4 grain increments and if you get to 2 grains daily feeling well and improved, you then wait 6-8 weeks before you have a blood test :
You should monitor your temperature and blood pressure daily and have a bench reading of T3 and T4 prior to trialling this thyroid hormone replacement.
Your TSH will be low/suppressed - your T4 maybe lower than previously measured but your T3 should have risen, and if T3 hasn't risen NDT may not be the best thyroid hormone replacement option for you :
If your blood test looks in line with the above and you still have symptoms and wish to to continue you simply do by upping by 1/4 grain at a time : there will be a week when you feel uncomfortable, a bit anxious, nervous, and you simply drop back down to the previous weeks dose and that is your dose at that point in time on NDT.
No thyroid hormone replacement works well unless ferritin, folate, B12 and vitamin D are maintained at optimal levels as you still need to be able to convert the T4 content of the NDT into T3 - the active hormone that the body runs on.
Some people split their dose, others do not : Some wait 24 hours before testing, others do not : it is a little trial and error but consistency and slowness paramount as there is no " quick fix " to thyroid hormone replacement, and in my experience NDT takes time to bed in and continues to continues to build way past any dose increase.
Thank you pennyannie! My nutrients are all optimal, vit D being 119, vit B active being over midrange, almost high, folate increased to high on supplementing 400 a day, ferritin midrange, supplementing for many years now. I have been on NDT since 2015, but then went onto synthetics as I was overdosed on 3 grains of NDT and couldn't get the balance right. Currently on Armour is the same, NDT makes me feel better than synthetics, but I feel these lopsided results, hypo and hyper mixed together. I did hold the 2.6 grains dose for 8 weeks, my ft3 dropped from 110% to 80%, ft4 from 80 to 24%.
Are you saying that potentially this would be building up? I started to get more hypo after 8 weeks. When I tried to increase NDT I was getting hyper and hypo symptoms.
Also, my temps dropped, even though my ft3 was high. Pulse running high, reaching 84, which can be uncomfortable.
I have just read through some of your posts. Have you ended up lowering your NDT couple of years ago by 1/4 and adding levo? Just curious of your experience. Thank you so much!!!
I did drop a 1/4 grain because of the over range T3 blood test - and added 25mcg T4 BUT experienced seriously debilitating pseudo knee gout in the same week :
I read somewhere of gout being a hypo symptom but yes, I know, as in all honesty if you look hard enough everything can be a hypo symptom :
Anyway I stopped the T4 and went back up to 1 + 1/2 grains and am still on this dose.
I just have a yearly blood test mainly for my ferritin, folate, B12 and vitamin D and have seen direct correlation between a lower ferritin and reduced T3/T4 conversion so now aim for around 100 ferritin which seems to be where I need to be for optimal conversion.
I think " lop sided " results are what to expect with NDT as the blood tests, ranges and guidelines were introduced to be used with T4 - the Big Pharma newly launched thyroid hormone replacement to replace NDT :
NDT was used successfully for over 100 years prior to the science of medicine and the blood test, ranges and guidelines and doctors would simply dose to the relief of symptoms.
Sadly there are symptoms of under and over medication that cross over so it can be confusing identifying which is which.
I'm with Graves and following RAI thyroid ablation now manage lingering Graves, thyroid eye disease and hypothyroidism. If anything I run myself slightly hypo despite the fact that if I had a T3 blood test the doctor would suggest I was " hyper " !!!
I think if I needed a blood test to appease the doctor I'd wait 24 hours between last dose and blood draw, my TSH has always been at 0.01 and with a bit of luck my T3 might slip into the range at around 6 something.
Some people do need a high T4 with their NDT so all you can do is try - maybe drop some NDT and add some T4 then wait those 6-8 weeks and see where you are again
I didn't give a NDT/T4 dose long enough to make any sense as the knee pain put scupper to everything and I blamed myself for messing around with my dose which was very close to perfect but the blood test made me question myself ????
Thank you pennyannie, that's great that you are doing well on that dose. My TSH is below 0.01 at all times, endo ok with it, he prescribed me NDT and T4, previously t3 too. That's it, I went for blood test because I was feeling increasingly unwell on 2.6 grains. Cold, anxious, tired, swollen, dry skin, my periods became painful again. I also tested before when my ft4 was midrange, which is over two times higher than now, and ft3 same 80%, and felt much better. However, I am feeling terrible dropping NDT and adding T4. But it could be too early, that is true. May I ask if how low your FT4 is or can be? Previously, 4 years ago, I was very overdosed on 3 grains. I would really love to take just NDT if it could work for me.
Edit: I have reduced NDT first by only 1/8 and added 6.25 levo. 2 weeks after, lowered by 1/8 and added 6.25 again. This last change was 3 days ago and I feel dreadful today. My skin, mouth, everything is dry. I have tremors now, swelling. This morning I felt sort of detached from reality.
Prior to self medicating with NDT I was on T4 - only ever100-125 mcg :
I felt better on 125 mcg but would be dropped down so that my TSH would then sit in the range and not be 0,01 although this made me more unwell and I was given anti depressants when I complained about additional symptoms.
My T4 would generally come in at 20/23.50 and my T3, when I paid for it to be tested came in at 4 : so usual results on T4 only were a T4 at around 100% with a T3 at around 25% :
I managed a referral to an NHS endocrinologist who insisted I was overmedicated as my TSH was then at 0.01 and suggested a T4 dose decrease and wasn't concerned that my T3/T4 ratio was coming in at around 1/5-50 : and discharged me :
My doctor referred to me as a conundrum and I did a " U " turn and started self medicating as I found the whole issue simply exacerbating my symptoms and now stay away and stay calm and not housebound any longer and have my little life back.
You are lucky that you at least have an endo with an open mind :
Were you able to achieve a T3 at 80% on just T4 only ?
How did you feel on a T3/T4 combo - what dose were you taking and did it suit you better ?
I played a bit with T3 but felt " turbo charged " compared to how I feel on NDT - which seems softer on my body :
On NDT my first result was T4 13.90 with a T3 of 7.86 and a year later on the same dose my T4 came in at 15.80 and my T3 6.13 : my ferritin was 90 the first year and the second year had dropped to 75 : all others B12, folate and vitamin d had stayed the same : second year waited a couple hours longer for a blood test think the gap was 11 hours and I had eaten some toast : ( I have a nurse come to my house and she was running late ) :
I think T4 can take 6-8 weeks to take effect whereas dropping NDT may effect you much sooner because of the T3 content :
That is terrible they were decreasing your levo based on TSH only! I have never felt well on levo and went up as high as 150 mcg. But, that was after I was doing well on NDT for 2-3 years, but then overdosed on 4 grains, then on 3, then struggled to find a good dose. Of course, antidepressants, this is their mantra, or CFS...happened to me too, they told me I had GAD...
My results were similar on levo, FT4 around 80% or more and FT3 30%, TSH suppressed.
Before I found this doctor I have seen probably about 15+ other "specialists". I am quite lucky, he reminds me so every now and then
Never achieved 80% t3 on Levo.
Combo was terrible, like you, I felt T3 was turbo charging me, I was hot all the time, swelling. NDT feels more gentle, probably because hormones are attached to thyroglobulin, which is a carrier protein, and get released slowly as needed.
Really puzzled. I am very sensitive to all changes. But I have to say it was even worse when I was splitting my dose 3 times a day. I was comatose.
I'm after RAI thyroid ablation and have found I need to also take adrenal glandular to support these glands as it is known that RAI is picked up by other glands and organs with in the body and know from experience I feel better supplementing these as well.
This is something I didn't know about RAI, but it makes sense that organs can absorb it! I have Hashimoto's, high TPO antibodies (not that high anymore), been hypothyroid most of my life according to my doctor and ultrasound. My TSH has been suppressed permanently by high NDT doses 4 grains and when all removed 4 years ago, I spiralled (hospital, bedbound) as my TSH was still supressed, both frees were low or under range. I just don't produce anything myself anymore.
I think ultimately with Hashimoto's your thyroid becomes totally destroyed thereby necessitating you to replace all the same known thyroid hormones that you once had supporting you. This is either through NDT or at least Y3 and T4 supplementation.
I guess that over this period of time your adrenals will have picked up the slack - I don't know but seems logical, as they are very closely related and have been doing the job of the thyroid during this time trying to regulate your erratic thyroid hormone production and compensate for " hyper and hypo phases " you probably went through.
Possibly! I can't take glandulars though, they are too stimulating for me. Had my cortisol saliva checked too, all green on all 4 points, just second reading maybe could have been a bit higher! I should be a picture of health with all my results. I really appreciate you taking time to talk to me, as today it really did hit me hard, been in bed all day.
1 grain is appox equal to 100mcg of levothyroxine, so when first starting NDT you can trial an approximate dose to what you were taking on levothyroxine. There was no blood tests when NDT was introduced and it was all about relief of clinical symptoms.
You began with approx 300mcg of thyroid hormones.
You can split tablet (i.e. 1/4 is approx equal to 25mcg levo. If you buy a pill splitter it makes it easier). and every few weeks you can increase by 25mcg. If you feel it is 'too much' reduce back to previous dose and stay on this for a number of weeks, and it may be a dose that you can stay on if you feel symptom-free.
When NDT was first used, there were no blood tests and the patient was started on a low dose and then every few weeks small increases, all that was taken note of, is concentrating upon the clinical symptoms and are they beginning to be resolved.
I used to take a higher dose but now take a much lower dose - probably as I'm getting older. I think our bodies dictate what dose is suitable i.e no symptoms and we feel well.
Thanks Shaws, I was on 150 levo, then on 112 levo and 22.5 t3, now on 2.3 grains and 12.5 levo. I did ok on 4 grains of NDT for some months, but it was building up and up, at some point our bodies are saturated enough and we don't need such a high dose anymore. I'm 36, but unfortunately my doctor years ago was upping my NDT like sweets, by 1 grain, not by 1/4. That backfired greatly with 150 pulse and I was hospitalised, lost a stone within a week or two!
You may be right re: small increase, maybe I could try again to raise NDT to 2.6, as this 2.3 and 12.5 levo feels terrible, skin is peeling off my face and hands from dryness lol
1 grain of NDT is the equivalent of 100mcg of levothyroxine in its 'action'.
This link may be helpful.
Dr Lowe would only prescribe NDT (never levothyroxine) or T3 alone for patients who have 'thyroid hormone resistance' - those people take higher doses than would be normal for the majority of patients.
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First test results since starting NDT
Reducing NDT
Which to reduce, T4 or T3? 
feeling off dizzy kind of and hypothyroidism /NDT/menopause
