Thank you for your invaluable advice. I went out and did my labs today and here are the results:
TSH - 0,574 (0,350-4,940)
Ft3 - 4,34 (2,43-6,00)
Ft4 - 9,7 (9,0-19)
Anti TPO - 710,3 <5,6
Tg antibody- 13,1 <4,1
Vit D - 112,1 (75-250)
Ferritin - 29,9 (4,6-204)
Vit B12 - 405,9 (138 - 652)
Folic Acid -28,9 (7-39,7)
Zinc - 15,4 (7-23)
Copper - 13 (12,6-24,4)
The results are not as bad as I expected honestly, but I clearly need T4 and have to face that fact, any further inputs are appreciated :).
Ive had digestion problems all my life, since 13 years old - ive tried everything under the sun to fix it, but to no avail. I was hoping that NDT would be my "miracle" but after 9 months I will add levy tomorrow as I am tired of feeling awful. I was vegan/vegetarian doing my 20's and felt good and then due to constant bloating i became experimenting with atkins and paleo which made me feel somewhat better but never quite. am back to whole food plant based but will see how it goes, nothing is set in stone. Used to drink apple cider vinegar every day, stomach acids, celery juice, you name it...
Alanna012 you described me too a T. skin is better, I look younger, face is not "old" and bloated, BUT I can sleep, I can't relax, I feel like I am "ON" all the time. Its crazy.
Im sad to throw in the towel on Thyroid-S but it seems its now overdue.
Thank you all for your inputs, greatly appreciated.
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MiaMam
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Thank you, I will go through what you have sent me in detail and do some more iron testing. yes, Im still vegan - gluten free, plant based whole foods.
so i went back and did some more test, I currently can't even tolerate 1 gram first thing in the morning on an empty stomach and need some inputs. Ive read that its possibly low iron or cortisol issue. So ive tested my iron:
Iron 112 (33-193 uq/dl) or 16.8 (5.8-34 mol/L)
TIBC 291 or 59.3 (41-77)
Ferritin - 29.9 (4.6-204 ng/mol) so my iron is mid level but my ferritin is quite low I would say and am thinking in supplementing and trying. would I be correct? I also have MTHFR so that could be the cause of low Ferritin I am reading.
My cortisol is (morning) from blood - 357 (133-537). I know I should do a saliva test but I am in europe where its not possible to obtain that test so this is the best i could do.
My vit b12 is 405.9 (138-652)
Vit D - 112 (75-250)
Copper - 13 (12.6-24.4) my copper is low which could be why ferritin is low I am reading
Zinc - 15.4 (7-23)
Folic - 28.9 (7-39.7)
I am "wired", can't sleep and generally not feeling well on the ndt at all. What am I missing / Should I supplement with iron and copper? Should I still take the NDT even if its only 1/2 grain which i know is too low? I tolerated the NDT better after meals - breakfast and afternoon snack. Is it better to dose two times, after meals or before?
I am still vegan, gluten and diary free but I am a healthy vegan - the spirulina, greens, hemp seeds, etc, ie properly balanced plant based diet.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
OK, so your FT4 is low, but so is your FT3. Not surprising you feel bad with a T3 that low. But, you are only on a small dose of NDT. So, the question is: why can't you increase?
You didn't answer any of my questions: did you try ensyme supplements? Have you had your cortisol tested? If CAV doesn't help, have you tried anything else, like HCL and pepsin? But, it will be difficult to raise stomach acid with low B12.
I don't think it's really the thyroid S the problem, I think it's your low levels of so many things. As SlowDragon says, your ferritin is far too low, and that must be causing so many problems! And, your B12 is low, which isn't surprising, but essential that you raise that with sublingual methylcobalamin and a B complex. Your folate is good but that's not surprising on a veggie diet.
I can sleep, I can't relax, I feel like I am "ON" all the time. Its crazy.
Well, that sounds like adrenal fatigue. Nothing to do with the Thyroid S. So, before throwing in the towel, try getting your other ducks in a row, as they say.
Thanks Greygoose....im just wondering where to start....I will repeat what i wrote just now above: I currently can't even tolerate 1 gram first thing in the morning on an empty stomach and need some inputs. Ive read that its possibly low iron or cortisol issue. So ive tested my iron:
Iron 112 (33-193 uq/dl) or 16.8 (5.8-34 mol/L)
TIBC 291 or 59.3 (41-77)
Ferritin - 29.9 (4.6-204 ng/mol) so my iron is mid level but my ferritin is quite low I would say and am thinking in supplementing and trying. would I be correct? I also have MTHFR so that could be the cause of low Ferritin I am reading.
My cortisol is (morning) from blood - 357 (133-537). I know I should do a saliva test but I am in europe where its not possible to obtain that test so this is the best i could do.
My vit b12 is 405.9 (138-652)
Vit D - 112 (75-250)
Copper - 13 (12.6-24.4) my copper is low which could be why ferritin is low I am reading
Zinc - 15.4 (7-23)
Folic - 28.9 (7-39.7)
I am thinking to start supplementing with iron and copper and still take the NDT even if its only 1/2 grain which i know is too low...perhaps I try 1/4 before breakfast and 1/4 in the afternoon for 7 days as I read somewhere.
Don't start iron and copper at the same time. It's always advised to start supplements one at a time with a gap of about two weeks between them.
I'm not sure that iron supplements are the right thing for you, given that it's your ferritin that's low, but your iron is good. But, iron is complicated, and I don't understand it all. So, if I were you I would start a new thread asking just that, so that those that know can reply.
Myself, I would start with B12 by taking a B complex with methylcobalamin as I explained above.
Then, perhaps, add in the copper, and see if that is causing your low ferritin.
It's always a good idea to try splitting the dose if you find thyroid hormones difficult to tolerate.
Your cortisol isn't too bad, your adrenals just need a bit of TLC. The B vits will help that. And vit C. Also, don't skimp on the salt. I would suggest that as you find it difficult to tolerate your NDT first thing on an empty stomach, that you don't take it first thing on an empty stomach. Have a good, high protein breakfast as soon as you get up, then take your NDT a couple of hours later. Not only might that help you tolerate it better but the protein will support your adrenals.
perhaps I try 1/4 before breakfast and 1/4 in the afternoon for 7 days as I read somewhere.
Well, that might work for some people, but we're all different. And, by the sound of it, that's not likely to work for you. There are no rules or regulations about when you should take it, everyone has to find out what's best for them by trial and error. So, at the moment, I would favour my adrenals with an early breakfast, if I were you.
Hi MiaMam, you asked in another thread how often a day I take Thyroid-S but the thread was closed to replies - I take mine all in one go first thing in the morning. I chew it and have a glass of water with it. I would say from you results that you're under-dosed but if you're self-treating and try to increase don't increase by too much too quickly. I usually did it by a quarter grain every few weeks.
Please listen to what the others have said, this probably isn't just a problem with Thyroid-S but a wider issue, especially with ferritin. Mine was something crazy like 7 when I was first diagnosed and my GP said it was fine because it was within range, the doctor treating me for hypothyroidism was furious with her!!! Also, I completely agree with greygoose that some of the things you describe sound like adrenal fatigue, especially in your other thread where you mention that you can't increase your dose without feeling worse. Have you taken a salivary adrenal test?
I took one over 10 years ago (salivary adrenal test) as I was then in the US. Now I can't as am in europe and they simply don't do it here...ive done the morning one and its
My cortisol is (morning) from blood - 357 (133-537) which seems ok,
so I am wondering should I start with the iron and copper supplementation first and then see... don't know what to do about the cortisol test...I am so wired today from taking 1 gram in the morning on an empty stomach that I know I wont sleep much..its horrible! tomorrow will avoid all ndt and hope to settle a bit...
Having low serum iron and low cortisol can cause problems when increasing T3. Symptoms such as, shaking, fast heart, anxiety etc, or it could stop you feeling better despite increasing your dose. In that situation you can have good looking blood tests but still feel ill.
Your cortisol is not bad but should be higher, saliva cortisol is best.
Your ferritin is much too low and youve great advice on that.
Ferritin is very important but for T3 to work serum iron must be optimal along with cortisol.
The reasons why can all be found in Paul Robinsons book Recovery with T3, his website and fb page. Its can also be found on Stop the thyroid madness their explanation of why is flawed in my opinion but the end result is the same.
I wouldnt give up yet, sort both serum iron and ferritin and get your cortisol a bit higher and then increase your dose.
My cortisol is (morning) from blood - 357 (133-537)
Personally I feel this is much too low and you may run into tolerance issues with a cortisol of this level. Optimal cortisol is at the very top of the range for the morning.
I am not a medical professional. I have just collated helpful information available on adrenals found in different, reputable thyroid help books. Adrenals do not get enough recognition for their essential role in the effective metabolism of thyroid medication. For some people taking thyroid medication is enough to get adrenals working again, for others it isn’t.
If you are having problems raising/tolerating/having no benefit from/feeling worse from your thyroid meds consider cortisol -
"At least 50% of hypothyroid patients may have an adrenal problem and without discovering and treating that problem you will be unable to benefit from thyroid treatment." (Stop The Thyroid Madness, Janie Bowthorpe)
"Low cortisol causes T3 to work less effectively within the cells. This is because T3 and cortisol are partners within our cells. High cortisol also causes problems and can reduce the effectiveness of T3 within the cells, hence thyroid patients with high cortisol often complain of feeling hypothyroid even when they appear to have reasonable or low FT3 levels. When patients try to raise T3 levels in the presence of low cortisol, they may find that the body compensates for low cortisol by producing more adrenaline. This can cause anxiety, rapid heart rate, the feeling of heart palpitations etc. This is usually the adrenaline response rather than a direct issue with the T3. Very often, it is the low cortisol that is at the root." (Paul Robinson website)
"Whatever you may be told, adrenal insufficiency in thyroid disorders is very common indeed and should always be considered at the onset of treatment. Failure to respond to thyroid supplementation, or actually feeling less well, is likely more often than not to involve the low adrenal reserve syndrome." (Peatfield “how to look after your thyroid”)
"If, upon starting NDT [or T3], you experience symptoms, including anxiety, insomnia, shakiness, sweating, dizziness, feeling spaced out it's a strong sign that you may need adrenal support." (Tpauk website)
Adrenal testing: 4 point saliva test from Regenerus Labs + synacthen test (if doctor will do it!) to rule out anything more than adrenal insufficiency. Blood tests are inferior to saliva tests because bloods show what is total, saliva shows free and therefore available.
Interpreting saliva results: Morning sample must be the number at the top of the range, midday must be 75% through the range, afternoon must be 50% through range and evening must be below the top part of the range. If anything comes up lower than this, then this indicates low cortisol. (If cortisol is high then this can be lowered through Phosphorylated Serine)
Low Cortisol Treatment (after testing):
According to STTM:
Adrenal Cortex Extract (not whole adrenal gland): On waking 150mg, 100mg at noon, 50mg afternoon, 50mg evening. After 5 days on those doses you can do DATS (Daily Average Temperatures) - Measure BBT 3 times; 3 hrs after waking, 3 hrs after that, 3 hrs after that and add them up to make an average, do this 5 days in a row avoiding ovulation & menstruation. If there is more than 0.2 degrees fluctuation between the temps then Adrenal Cortex Extract needs to be increased. Increase Adrenal Cortex Extract until DATs become stable. If DATs do not ever become stable then Hydrocortisone may be needed. STTM states 25mg/day is a starting dose, broken down as: 10mg on waking, 7.5mg at noon, 5.5mg in afternoon, 2mg before bed. If DATs still won't stabilise then this could indicate an Aldosterone issue.
According to Peatfield:
Adrenal Cortex Extract: Anywhere from 150mg to 600mg in the morning and nothing after midday. He also recommends 20mg of Hydrocortisone for those who are not improved by Adrenal Cortex Extract.
According to Paul Robinson:
Research CT3M (Nb. Many do not find this effective).
Nb. Initially cortisol presence can increase thyroid hormone uptake so much that you may feel over stimulated/strange. Some advise to lower thyroid hormone dosing to let thyroid hormones run down a few days before starting ACE to avoid this.
I agree with dontforgetcortisol on how important cortisol is but I must add that although its true CT3M might not work for everyone it certainly can for many and can be fixed in a few weeks for some, it did for me.
It sounds complicated but it wasn’t at all, I simply take ndt within the four hours before I get up, for me its two hours. Adjusting the amount of ndt/T3 or the time affects cortisol. It only took a few weeks. T3 needs cortisol and cortisol needs T3, they work hand in hand.
CT3M is definitely worth a try, zero side effects, little effort, set an alarm, take your meds, go back to sleep. You think it will disturb your sleep, I cant say it did and it soon becomes just part of your daily routine. I did try cortisol supplements and they made me feel more ill.
Cortisol for me was a quick fix once I did CT3M but it still wasn’t enough to be able to tolerate ndt/T3, and it took me a long time to figure out why. It was serum iron, it was actually similar to yours, I thought at first it was fine as it wasn’t too bad but I didn’t realise it needed to be optimal. I lost a very long time missing that. Once that was optimal I could tolerate my ndt and started raising it with no problems.
I highly recommend Paul Robinsons book Recovery with T3, everything you could possibly need. I bought it when I couldnt figure out why I couldnt tolerate ndt, it was explained in there, fantastic book. He also has a fb page, website and some youtube videos on CT3M, all excellent.
Thank you. I will get his book and go through it as that sounds simpler to me then taking cortisol supplements, I somehow want to avoid that as much as possible. The low copper and low ferritin confuses me..i have to find out more about it...how did you get your iron up finally? supplements?
also I just reviewed Paul's book (I have all 3 of them) - did you do the CT3M with ndt only or with t3? how much of a dose did you take in the morning and then did you take more during the day? Thanks.
I did CT3M with ndt, I take one and quarter grains at 6am and get up around 8am. I tried different amounts and times and this what gives me top of the range morning cortisol. If I change the amount or time it alters the cortisol. This might not be right for you, its very individual this youtube video describes it quite simply but its explained in more detail in Recovery with T3.
Part 1 - The Circadian T3 Method (CT3M) by Paul Robinson
Im afraid I dont know anything about copper, its not something Ive tested as Ive not found anything so far that causes me concern in terms of thyroid to warrant me testing.
Iron I do know a good bit about, optimal ferritin is needed for thyroid but interms of T3/ndt working serum iron is crucial. With out optimal serum iron and cortisol T3/ndt either does not work ( you fail to feel better despite good looking blood tests, ), or you cant tolerate it when trying to increase it, shaking, palpitations, sweating, anxiety etc, its awful.
Test the full iron panel, its an error to only test ferritin in my opinion, I lost a lot of time and it caused a lot of confusion not doing it.
Theres a chapter in recovery with T3 about all nutrients needed including testing advised, it was there I found the importance of serum iron. Its also important to know you must have good vitamin b1 for T3/ndt with out it you get awful heart symptoms. This too can be found in the this chapter of the book its also one I missed and wish I hadnt.
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