hi I only got one response to my recent post which was so kind but no feedback so am trying again as I’m a bit stumped. I’d hoped going on NDT would relieve fibro symptoms and generally help me feel better, and give me more energy, but despite latest test results I don’t feel that much different. Certainly no lessening of what I assume is fibro pain.
TSH. O.005 (0.27-4.2) …. disappearing!
T3 6.1 (3.1-6.8) 81% thru range
T4 19.1 (12-22) 71% thru range
Three months ago they were showing 0.092. 3.8 and 13.7 - same parameters. That was on 1.5 grains. Latest test is from taking 2 grains for three months.
So how am I feeling? In some ways a little better but still very tired and get out of breath and energy easily but certainly better than three months ago. The palpitations have reduced a lot I guess as my body adapts to the T3. I still can’t lose weight which is frustrating so I’m guessing I’m not over medicated, and don’t have other signs of over medication that am aware of.
Am working on my low ferritin (28 [5-200]) now making myself eat chicken liver pate and also eating pumpkin seeds and dark chocolate as well as beef a few times a week. Wondering if this is now the issue that needs fixing? Because my serum iron is 2 points over range I sadly cannot take Three Arrows which sits unused in my cupboard 😳
It’s been a tough six months getting from 30mg to 120mg I don’t know where else to go/what else to do. I’ve ordered B vits from iherb. My folate is mid range D and B vitamins ok.
Am awaiting nhs endo appointment praying I get a good one.
Thank you for reading and understanding 💜
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Starseed56
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I know we have a tendency on here to blame every symptom on thyroid problems but it is possible to have Fibro AND hypo. My Fibro symptoms have never gone away and I've taken Levo, NDT and combi therapy. My levels have been both extremely low and also very high but the Fibro remains.
My thyroid levels have never influenced my stiffness, tingling in hands and feet or joint pain. I'm lucky in some ways that fatigue hasnt been an issue for me but I get plenty of other standard Fibro symptoms.
I was ridiculously chuffed when I was diagnosed with Hypo in 2020 as I really hoped the Levo was going to make me better. I genuinely thought I was misdiagnosed with Fibro and it was underactive all along. 4 years and many different thyroid hormone experiments later and I've accepted that I have both. And its entirely possible you do as well.
I am definitely sure low T3 can mimic Fibro and there are those out there diagnosed with Fibro or CFS who actually have undiagnosed or undertreated Hypo. I know when my thyroid frees were very low my muscle and joint pain were noticeably worse, but now they're both pretty good the pain hasnt gone away, just improved.
I've thrown everything at Fibro over the years, diet, exercise, supplements, alternative therapies, mainstream medicine. I've been incredibly proactive but I've had to accept that this is what I have and I've got to live with it and accommodate it. Sorry if this sounds downbeat but chasing rainbows can be soul destroying. I know because I've done it.
thanks Sparklingsunshine for that really helpful reply. I guess I have been chasing the rainbow that says fibro will go away when my thyroid levels have improved! I appreciate you sharing your experience. I guess I had settled for what I had until last year. when I really started to research the thyroid and joined this forum and started the NDT journey which has perhaps led me up a blind although my T3 was scraping the barrel at 3.3 whilst my T4 was 17. I recently done the genetic test to see if I have any faulty jeans and I’m awaiting that reply with bated breath. I have thought when I’ve eventually see the NHSEndo, whether it might be worth going back to Levo if they will also prescribe me some T3 or I could buy the T3 from Roseway. I felt so gassy in the switch over to NDT. I don’t want to make any decisions lightly!
I think i need to speak/see a blood specialist who can help with my low ferritin As well because many of my symptoms could be attributed to that. It’s such a guessing game isn’t it? Thanks again much appreciated.💜
It is, I have Ehlers Danlos, Fibro, hypo and Pernicious Anemia, so the symptoms all overlap and its impossible to know which is which and where one ends and the other begins. I dont know if the permanent pins and needles in my hands and feet is due to thyroid, or B12 deficiency. Could be something else entirely.
Even though my B12 is treated with 2 monthly jabs and my levels are too high to be recorded I wonder if years of being undiagnosed and untreated has led to neurological damage. I'll never know.
I do feel much better generally on T4/ T3 combi. I never felt good on just Levo and NDT concerned me long term due to issues with sourcing and expense. I self source T3 and whilst I've only been on it since December it has made a definite improvement. And realistically an improvement is a win 🤣. But it hasnt cured me.
I think because this is a thyroid forum we see everything through the prism of that, but its wise to be open minded and not assume everything is always down to being Hypo.
Low ferritin which I've had many times as I'm a strict vegetarian is horrible, and will make you feel dreadful. It certainly can cause a multitude of symptoms.
Every where I researched before I switched from NHS T4 monotherapy suggested ferritin needed to be least over 70 for any thyroid hormone replacement to work well.
My ferritin was down at 22 - and so I then spent over a year building back up these core strength vitamins and minerals - ferritin, folate, B12 and vitamin D before I started self medicating with NDT.
So, I don't know your other levels but I find I need to aim for a ferritin at around 100 - folate around 20 -active B12 around 125 ( serum B12 50++ ) and vitamin D around 125.
Once your core strength is strong and solid you'll likely feel a lot better and you will be better able to convert your existing dose of NDT - and likely see a higher T3 and a lower T4 from the same dose.
22 that’s low well done for improving what do you think worked best?
My last results for the important elements were
B12 469 (189-883)
Folate 8.4 (3.10-20)
Vit D high at 200 was oversupplementing!
And a woeful ferritin at 28. But high serum iron at 29 so I can’t take three arrows or other supplements. Ferritins the one I somehow need to improve and am taking naturally what I can to help this!
Ill just keep working on this and see if I can improve it! 💜
Over the year I tried many variations - an iron bisglycinate supplement which was ' kinder ' on my stomach the main focus - I also tried liquid iron sachets and ate liver 2 or 3 times a week - I now maintain my ferritin making a chicken liver pate and just taking a spoonful a day and a dollop of Hellman helps this medicine down and I eat chicken a few times a week -
I still have low stomach acid despite good T3 levels and feeling much improved so need to take a teaspoon of Apple Cider Vinegar in a glass of warm water before I eat my main meal which contains the most protein in order to help breakdown my food and kick start the process of food metabolism.
Ok that’s an idea I do take ACV but I’ll try before meals. It’s so hard re the iron because I need to raise ferritin but don’t want my serum iron to go higher! And I’m not sure if boosting ferritin will also boost serum iron more, which wouldn’t be good? Hellmans sounds good 😉💜
T3 definitely helped many of my symptoms but pain remains, albeit at a lower level....my age may be a factor!!
I eventually came to the conclusion that I was perhaps fighting separate conditions. I have a form of Thyroid Hormone Resistance which has had a huge impact on my health... but there is more. Difficult to be sure because symptoms, the consequence of long term low T3, can be difficult to resolve.
Medics have been generally kind but clueless so I've had to do the research myself
Looking at your labs I'd suggest you could be wrongly or overmedicated...the latter can feel similar to undermedicated
It may also be that the T4/T3 ratio in NDT is not what your body needs
2 grains of NDT is providing 18mcg T3 and 76mcg T4
Labs on that dose
T3 6.1 (3.1-6.8) 81% thru range
T4 19.1 (12-22) 71% thru range
We aim to have both Frees ( roughly) approaching 75% through ref range.... but we are all different so this is not written in stone!
It is essential that vit D, vit B12, folate and ferritin are optimal...not just in range.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
Vit D is best taken with vit K2
Vitamin D and Vitamin K2 work synergistically with each other to ensure that calcium is directed out of the arteries and into the bones where it helps improve bone density.
Without enough vitamin K2 calcification within the arteries can occur.
B12: 300pmol/L (145-569) = 406.5pg/ml
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Folate:
Folate is recommended to be at least half way through range
Ferritin
Optimal ferritin level for thyroid function is 90-110ug/L
"OK" is not a satisfactory level!
I'm afraid finding one's therapeutic dose can take many months ( in my case, due to RTH) around 2 years)
In your shoes I'd be inclined to hold your current dose while working to optimise the nutrients which I suspect may be low.
Then test again and alter your medication according to the new results and your symptoms
Hope something here resonates and helps, I'm sure you can feel better, if not 100%, in time.
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