Approx 4 years ago, I reported the following results on this forum:
FT4 =14.4 pmol/l (12-22)
TSH = 0.96 miu/l (0.22-4.2)
FT3 = 4.4 pmol/l (3.1-6.8)
I was advised that it I may have Central Hypothyroidism and so to consult an endocrinologist specialising in thyroid but I didnt as the endo I saw a few weeks before was depressingly bad!. In common with advice normally supplied on here for primary hypo, Id be interested to hear from those who have had a CH diagnosis.
Assuming I do have CH and that it is acquired so not congenital, I believe its likely to be a side effect of a prescription drug taken >4 y ago (on my profile). That being the case, I'd expect/hope it may be corrected if/when the effect of that root cause is removed without needing thyroid hormone replacement(THR). For non-thyroidal illness syndrome (formerly known as Euthyroid sick syndrome), it is reported that "it normalizes by itself without definitive treatment" epainassist.com/endocrine/w.... The 2 conditions seem to have strong similarities eg pituitary-basis, and are maybe linked (???) so it seems logical to assume acquired CH can also be corrected without THR. Agree?
So, besides CH, Id appreciate any feedback from those familiar with NTIS also.
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Not private since so only got TSH (4 times) which has been between 1.2 and 2 (0.3-5). I may have more private tests done but not sure if results would change my logic and approach.
The private, full test 4 years ago was done at ~1530h before I was aware of changes during the day. All others since have been done between 0930h and 1245h eg TSH = 1.83 miu/l (0.3-5) last done 6 weeks ago at 0930h.
Yes, but just testing the TSH tells you nothing at all. It's the FT4 and FT3 that are important. And, the three results need to be looked at as a whole.
I've just looked at your post from four years ago. And, I see that I did not answer your lasts questions. My apologies for that, but- you didn't click on the 'Reply' button under my last response, so I wasn't notified that you had responded.
Are you still using the same approach to the problem that you outlined in that post?
The approach (as laid down in my Profile) is broadly the same although it's now more developed. For example, I have been able to significantly increase relevant exercise in the past year which I was unable to do 4 years ago. Also you'll note I was engaging the endo then......not now, thank you!!
I've made some progress in the past year or more though not fully recovered yet.
In which case, I would have thought you would be keen to see your latest results. To see if all that you've been trying to do has had any effect on them.
Thanks but my protocol is not to affect my thyroid results but to try to reverse the effect of the prescription drug which caused the problems. Hence I see that as the primary effect with thyroid as a secondary effect with no such problems before the drug.
So, whilst a thyroid retest is in my plan - and why I'm interested in CH, NTIS - I don't see it as crucial. If it rules out CH, I'm in the same position as now. If it indicates CH, do I repeat endo engagement for a secondary effect? Probably not.
I've spent Ā£2k+ on private tests, including thyroid, in the past 4y for relatively little benefit. My most recent tests are focused on the primary effect though I prefer symptoms to monitor progress.
Well, I can't help feeling that you under-estimate the damage low levels of thyroid hormone can do. Hypothyroidism is not something to be ignored. And, what if it doesn't go away even though it is a 'secondary' effect. And, even if it does, what damage can be done in the meantime? Being a 'secondary effect' doesn't make it any less serious. But, I hope you find a solution somewhere. Good luck.
Hopefully my response just now to Musicmonkey further clarifies my position. In common with others on the other forum which have recovered, I feel that my initial focus must be on the primary condition (A).
No doubt, I would've followed an endo's treatment if I'd found a good one and he/she had confirmed a thyroid condition eg CH. Since that didn't happen, I had to follow another route. But I've noted Musicmonkey's 11.5y experience anyhow.
Thanks for your comments and kind wishes. Stay safe and well.
Hi greygoose. I am about to order my thyroid re-test, as per this post and your valued responses. My question now is: is there any point including antibodies as they were virtually non-existent 3 years ago at the peak of my illness? Figures (iu/ml)=
TPA 6 (0-34)
TGA <10 (0-115)
Unless advised otherwise, I assume only TSH, fT4, fT3 are required which I will order via monitormyhealth.org.uk/#vie... using code THYROIDUK10.
Difficult question to answer. Antibodies do fluctuate, of course, but antibody levels won't tell you if you have CH. And, given how low yours were, It could very well be that they are irrelelvant.
So, all I can say is that, under the circustances, it's probably not necessary to retest them. First of all, see how your TSH/FT4/FT3 are now, compared to last time. If the results are worse, then maybe consider testing antibodies at a later date. Hope that helps.
Ive now got my thyroid retest results (below) and, since theyve gone a bit worse, I now plan to test antibodies. 3 questions on that:
1. Does any lab test just thyroid antibodies?
2. If retesting TSH, fT4, fT3, what gap do I leave since my last test eg 4-6 weeks?
3. I think the only supplement I take that could affect results is iodine (Im low/deficient in this via serum/urine tests). How soon before a retest should I stop?
1. I don't know much about private testing in the UK, since I've never used any. I don't live in the UK
But, I wonder why you want to test them. You've got antibody results in the last test:
TPA 6 N/A 0-34
TGA <10 N/A 0-115
They are clearly negative. Which, of course, doesn't mean you definitely don't have Hashi's, but I very much doubt that another test at this point would show positive. To my mind, you'd just be wasting your money.
2. But, if you're intent on retesting, even if it means retesting the whole lot, how soon you test depends on whether or not you changed your dose after the last test. If you did, it should be six weeks. Four weeks is much too soon.
And, according to those results, you are very under-medicated and should be increasing your dose.
3. Taking iodine opens up a whole new can of worms!!! And, leads me to ask why you are supplementing?
a) OK, so you tested low, but which test did you do?
b) Are you self-treating with iodine? That really is not recommended. In fact, taking iodine at all is not recommended when hypo. You should only ever take iodine under the supervision of a knowledgeable medical practitioner - and they are few and far between.
c) Do you suspect your hypothyroidism was caused by low iodine? Your labs on diagnosis might give a clue to that.
d) What, exactly do you expect the iodine to do for you?
e) Do you understand the possible consequences of over-dosing on iodine? You are already getting some from your thyroid hormone replacement - 100 mcg levo contains about 68 mcg iodine which is recycled in the body - plus what you get from food. It's easily done to over-dose - especially at a time when you need less iodine, not more, because your thyroid is not making thyroid hormone anymore.
But, apart from all that, I don't think taking it would affect your labs. Biotin, one of the B vitamins, can possibly skew them, and therefore should be stopped one week before the blood draw.
Thanks. You've assumed I'm on medication but I'm not and not diagnosed. My thyroid disorder (probably CH) was caused by a prescription drug side effect. It's not on the list of drugs that can cause CH though.
My fT4 and fT3 had increased to ~25% and 35% thro range but now lower.
My focus has been natural treatment of the condition caused by the drug since medics gave up early. I follow a protocol that other sufferers follow (many have recovered with it) and it includes 1-3 drops of nascent iodine daily in water.
Blood test showed low iodine whilst urine test 3 mths ago was below range.
I'm sorry, you're right, I made too many assuptions, there, without checking back.
But, some facts remain. You do have antibody results, there, and I can't see the point of retesting them so soon - in a year or so, maybe. But, right now, I can't see that that would change anything.
I also can't see how you think iodine is going to help if you have CH - which it looks very much like you do have. Low iodine and CH are not connected. And, taking iodine is not going to raise your TSH to the point were it stimulates the thyroid sufficiently to make decent amounts of hormone. You will be flooding your system with iodine to no effect. The thyroid cannot make the hormone without the stimulation of the TSH, and iodine is not going to change that. So, I still don't see what you hope to gain by taking it.
I follow a protocol that other sufferers follow (many have recovered with it) and it includes 1-3 drops of nascent iodine daily in water.
But, sufferers of what? Of CH? Or just unexplained hypothyroidism? Or hypothyroidism caused by iodine deficiency?
As stated, the iodine is part of a set, rigid protocol including many other things and followed by many. If I were to remove that (or other parts) as I think youre implying and didnt recover from the related condition, Id always wonder if that is a reason. Personally I see no harm in taking up to 3x350mcg/day (or even a bit more) since my iodine levels are low or deficient and assume you agree unless advised o/wise.
The above condition, from which many suffer, is not CH - it is caused by a specific medication that I was prescribed. There is insufficient space here to provide further details (but Im happy to elaborate by pm if you wish). One of many reported symptoms/effects includes thyroidism and CH appears to apply to me along with some other effects. Maybe it reduced my iodine also? I dont know because I never had it tested until my other symptoms emerged (isnt that always the case?). Hence my focus is to follow the protocol to recover from the condition and hopefully that will remove all effects including CH.
That said, I am also planning to improve my thyroid hormone levels since fatigue is a key symptom. But, at least initially, I will try to do that naturally otherwise I would ultimately be on medications for each and every effect of the underlying condition.
Greygoose. I appreciate my response just now may be difficult to follow due to the use of effects, symptoms etc. As in my reply to Jamima, it maybe best to refer to my underlying "condition" as a syndrome which is exactly what it is.
Personally I see no harm in taking up to 3x350mcg/day (or even a bit more) since my iodine levels are low or deficient and assume you agree unless advised o/wise.
That's enormous! That's 1050 mcg a day! 7.5 times the recommended daily intake of 140 mcg. Plus what you get from food. I would find the idea of ingesting that much iodine terrifying. No, I do not agree that there's no harm in it. Especially as your thyroid is unable to use much of it at the moment.
That said, I am also planning to improve my thyroid hormone levels since fatigue is a key symptom. But, at least initially, I will try to do that naturally
I know of absolutely no 'natural' means of improving thyroid hormone levels other than taking thyroid hormone replacement. What do you plan to do?
Re iodine, the tolerable upper intake levels (the maximum amount of iodine someone can consume without any negative side effects) = 1,100 mcg per day. And, according to WHO criteria, population iodine deficiency is defined by median urinary iodine concentrations lower than 100 Ī¼g/L and mine is 91 despite ingesting 400-700mcg/day for 3 years. All of the above information can be obtained via the Linus Pauling Institute lpi.oregonstate.edu/mic/min....
On this very forum, Ive read several times that it is OK to supplement with iodine, if deficient. I sought clearer guidance in posting ~18m ago and, because it was not received, I said that I assume it is OK to "at least maintain a current supplementation rate of circa. 700mcg/day" unless advised otherwise. I received no disagreements.
Despite the above, do you still think 700-1050mcg/day is too much?
Re natural treatment of my thyroid symptom, I suggest we communicate by pm so I can explain more about the syndrome etc. Let me know if you agree.
On this very forum, Ive read several times that it is OK to supplement with iodine, if deficient. I sought clearer guidance in posting ~18m ago and, because it was not received, I said that I assume it is OK to "at least maintain a current supplementation rate of circa. 700mcg/day" unless advised otherwise. I received no disagreements.
Disagreements will not be instantaneous. Some people won't even read new posts for a couple of days. I would not take that as a sign of approbation.
Iodine is a very contentious subject on here. There is no consensus.
Despite the above, do you still think 700-1050mcg/day is too much?
Thanks. I'll reply to iodine on here in case others wish to note what is, as you say, a very contentious subject. For example, in healthunlocked.com/thyroidu..., both Seaside Susie and Clutter (what happened to her?) both state that you should supplement if deficient, as I am ("slight deficit" via non-loading urine). And Ive had no hashis or notable antibodies diagnosed.
Generally I believe it is advisable to increase vitamins and minerals if tested deficient so why not iodine?. Also suppliers of nascent iodine typically show doses up to ~2000mcg/dy (although I would hesitate to go much above the 1050 I quoted earlier).
I realise that you personally avoid iodine (but presume youre not deficient?) but it would be good to get a consensus view via this knowledgeable forum.
I'm not sure that is exactly what Susie says. She says you shouldn't take it without testing first to see if you need it. And, she says that you shouldn't self-treat with it, but take it under the supervison of a knowledgeable medical practitioner. But, I don't think I've ever seen her say you absolutely shourl take it if you're deficient.
Generally I believe it is advisable to increase vitamins and minerals if tested deficient so why not iodine?
Because there can be dire consequences from over-dosing on iodine that you don't get with other nutrients. It can cause thyroid cancer, for example, or trigger Hashi's. And, in excess, iodine is anti-thyroid. It used to be used to treat Graves patients before antithyroid drugs were developed. So, could, conceivable make you more hypo.
I'm not deficient in iodine now, no, not since I've been taking thyroid hormone replacement. Quite the opposite, in fact! So, I don't trust the idea that excess iodine will be excreted. I believe it accumulates in the blood.
However, I don't know if I was deficient when an idiot doctor prescribed it for me, because he never bothered to do any testing. All I know is, it made me quite ill, and possibly caused my Hashi's. We'll never know the full extent of what it did to me.
For info, Susie just said "Iodine shouldn't be supplemented unless tested and a deficiency shows" and Clutter something similar.
With your personal experience, I understand your wariness of iodine - at least in excess (which I would avoid). As indicated at the end of my pm to you, I will retest thyroid hormones, antibodies and iodine levels before considering an increased dose but ideally Id like to remove my slight deficiency somehow.
Userotc - it has been suggested to me that I might have CH or secondary hypo. I also have low cortisol and dhea. Been struggling for quite some time with overwhelming fatigue and low thyroid symptoms, along the way I have consulted private endo whose suggestions for further testing were declined by my gp. Moved to new GP and had blood tests last week, they called me today but I was asleep, as I am currently exhausted most of the time. Did you ever get a confirmed diagnosis?
Hi Jamima. Ive never had a thyroid diagnosis from a medic but long since gave up on them since they effectively gave up on me (GPs and endo). So Im basing my "diagnosis" on long-term comments on this forum and much personal research. As youll note in my communication here with greygoose, it appears that my CH was probably caused by a prescription drug for something else which has caused a specific syndrome (set of symptoms) so Im seeking to recover from that syndrome so then hopefully remove CH. But Im still looking to improve my thyroid hormones naturally.
I had cortisol & DHEA saliva test 3 years ago. In brief, cortisol OK except over-range at 4.68 nmol/l (N=0.36-1.88) early pm and DHEA 88% through range at 1.99. I had serum DHEA tested 3 months ago and it was 44% through range at 7.82 umol/l
If better, please feel free to pm me for further details/clarification.
Yes I still have some including fatigue but all can be explained by continued, prescription drug side effect(s) which I am currently focused on trying to reverse. I firmly believe that any thyroid-related condition (if indeed there is one) would be a secondary effect.
And I believe that, if I saw a thyroid-knowledgeable endo (despite strong endo reservations following my experience 4y ago), he/she would focus on that secondary effect.
I believe I have Central Hypothyroidism, although to date, my Endo hasn't confirmed this diagnosis. I had a TSH of 2.9 with a below range level of T4, i.e. 10.9 (12-22). I had 7 years of various doses of Levothyroxine and the last 4.5 years felt much better on combination therapy. I also have DIO1, DIO2 and DIO3 issues.
I am wondering whether the problem medication you had had an Endocrine disrupting effect that may be permanent? You have been suffering for a while now.
I would agree it is probably an endocrine disruptor and is acknowledged (even by the pharma manufacturer now!) to cause persistent side effects. But hopefully they aren't permanent and I'm comforted by the fact that many on (another) forum focused on the condition have recovered using the same protocol I follow.
Thanks but don't you agree with my logic? If condition A then causes condition B (and C, D, E etc), doesn't it make sense to focus on correcting condition A?
It depends whether condition a is actually curable or not. You are trying to treat it naturally, but we don't know for sure whether that's even possible. I guess only time will tell.
Agreed. Is your CH acquired (apparently most common) or congenital? If former, do you know your cause? If OK to elaborate and you prefer private message, please do.
If you pm, I can also send details of a US health organisation that adopts a natural appoach and only considers medication as a last resort - with reported successes. Interestingly, it includes the same diet that I have followed for 2-3 years for my primary condition.
It's acquired, but no idea how. Although I am taking synthetic tablets, I feel (unlike you) that I am simply replacing what most people make naturally with a healthy thyroid. I am not on any other medication, just supplement B12 complex and D3/K2.
So yours is ~23% lower than my last reading despite treatment (self or via medic). Hence Im a bit confused about you earlier comment re mine ".... and particularly regarding T3 levels can cause serious consequences longer-term"?
Also what is your treatment and is it self-treated or via an endo? T4 (or maybe T3?) or a combination therapy like Musicmonkey?
Note: My understanding is low fT4 with low/normal TSH levels is the hallmark of CH (whereas low T3 is common for NTIS). Musicmonkey seems to fit the criteria a bit more than me, at least in terms of fT4, albeit not diagnosed.
Mmmm ... think your approach would make more sense if getting your thyroid levels treated resulted in your thyroid gland and/of peripheral conversion not recovering from you successfully dealing with the other issue apparently causing your thyroid issues.
If it is not so, and your thyroid condition will improve regardless then as that occurs you would become over-medicated thyroid-wise.
But in the meantime, thyroid āunderactivenessā, and particularly regarding T3 levels can cause serious consequences longer-term. So at the very least you would be well-advised to at least get your TSH/FT4/FT3 tested & while you are at it, might as well go for the basic vits & mins at the same time.
That way your decision as to how to continue with your strategy is far better informed.
However, if you can find out for certain that taking thyroid medication will hamper your thyroid output from recovering , then I can see the logic of where youāre coming from on this. Otherwise you may well be putting yourself at risk imo.
Thanks Mike, I think I follow your reasoning including the thought that I could become over-medicated if I treated what I believe is a secondary condition. I hadnt thought of that but it does add to my concerns for thyroid treatment.
Re the T3 concerns, do you consider my last fT3 reading (near the height of my illness) very low at 4.4 pmol/l (3.1-6.8)? As indicated, I do plan to retest.
Is your fT3 much higher and do you have CH or NTIS?
I donāt know how much you have seriously researched CH or NTIS but these are seriously complex issues. No I do not have either but if I did have NTIS I wouldnāt be capable of posting here or replying to you either!
If I can stretch your patience & attention to understand what several
People have said to you, indulge me & try this one ...
Letās start with someone who has had their thyroids well-being disrupted by another condition over a few years at least. Determined to get to the bottom of this cause they decide to attempt to remedy that underlying cause & not not deal with their thyroid situation via compensation for having become hypothyroid by taking thyroid medication. ... and even though they paid for a private full thyroid blood test and saw in the report confirmation that of their 2 thyroid hormones the T3 one was low apparently, something about slightly below āthe rangeā. So another year or so on they develop other symptoms ... noticeably increased breathlessness, and from a GP checkup high blood pressure, elevated ābadā chloresterol and puffy ankles. GP gives lifestyle & diet advice plus a mild diuretic and a start on statins. Grudgingly patient decides to give these a try. A year on. ... well, apart from finding the diuretic meds a right pain to manage in relation to the intended effects over the next 2-3 hours after taking the meds and not much improvement tbh on the ankles, the statins seem to have somehow made his legs quite a bit weaker? ... the stairs have started to be a bit of a struggle ... dammit, heās only 60!
Then, c 18 months on ... oh boy ... canāt breath! Anything more than the tiniest shallow breath and it feels like a knife stabs him in the chest. A week before heād been to his GP with a bit of a cold but really quite poor breathing ... both thought it was an effect from having a cold, but now he was real scared. GP decides to send him for an X-ray to check his chest. Got this done a day later (no COVID then!) and got a call from his GP later that same afternoon .. chest is clear, heart in real trouble with what looks very much like dilated cardiomyopathy and a large blood clot in the left ventricle. Ok ... not quite a blue light situation but same day ends up having further hospital tests & is put on a mixture of meds. Canāt drive his car now, breathing gradually improves away from pain & extremely shallow breath. 2 years later lucky to have a fancy combined pacemaker-cum-defibrillator fitted. Lifestyle now a fair bit restrained but he can breath!!!
The heart diagnosis and all the hospital & medications stuff made him get his nose into a fair bit of Googling on his heart condition ... oops ... so many papers linking low T3/Liothyronine levels with heart conditions. Even worse, a whole load of other serious conditions as well.
About 80% of that story is mine personally. If I had known what I know now & had taken that private blood test earlier in my life & acted to raise my T3 then I very likely wouldnāt have gone through what I have, ending up as a relatively decrepit old git! Wasnāt amused to read in one paper that the average lifespan of someone in my condition after being fitted with an AICD was only 5 years ... mines battery lasts 5 years and is due for replacement next June!
Anyway ... point is risk analysis & mitigation .. you have the info and others views ... itās your life userotc ...I wish you well!
Thanks for taking the time to send a long message, some of which I followed. I am sorry for your personal experience with T3 but it's level appears to be variable and so more complex, as indicated by Musicmonkey and in your 2nd reply.
However, I dont wish to focus on that at present. The main purpose of my message was to get advice from others with personal experience of CH/NTIS. Hopefully I will receive more after my planned thyroid retest results, if required.
Re your T3 level, not very low but very likely far from ideal. So much also depends on your own personal āset pointā. The levels that suit each of us best can vary considerably. Symptoms are such an important indicator as well as actual test results and yet are soften disregarded by doctors & for that matter by patients until they become relatively intolerable. You need to get deep down in the clinical & biomedical literature, say just on the heart to see quite how & why low T3 can affect function. Even so, difficult to properly assess because this low T3 is such a sneaky gradual insidious bringer of serious knock-on effects.
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I have CH and honestly it would be nice to hear from others who have it 
Non-Thyroidal Illness (NTI), really????
Hypothyroidism and sick sinus syndrome
