I am a 35 year old male. 72 kg, 6 ft. Hypothyroid for at least 15 years, probably most of my life but didn't know it. Living in New Zealand.
This is a long post, but in a nutshell, I'm taking Slow Release T3 (SRT3), but it is not working as expected. I think I need to improve how cells use it, specifically by getting on iron supplementation.
My latest blood tests are the following. Please note that I have done these early in the morning (7.30 am), fasting (water only), no supplements or hormones just before. Last T3 taken 12 hours before. So the results should be as accurate as they can be. I always do my blood tests like this.
Thyroid tests while currently on 30 mcg of compounded Slow Release T3 (SRT3) twice a day compared to 6 weeks ago on 37.5 mcg x 2 per day.
Now (30 mcg x 2 per day) | Before (37.5 mcg x 2 per day)
Just from this, you would think I would have been feeling better Before with my FT3 (7.7) quite a bit over the max vs now (5.8), which is not even in the upper quartile (6.1). However, I was all over the place with anxiety attacks and if possible, even more hypothyroid symptoms than now. Paradox. So just to give examples of those familiar hypo symptoms: heart rate (< 60 bpm), temperature (< 36.4 C orally), feeling freezing, slow thinking, bad memory, no motivation, dry skin you name it.
My (researched) theory is that my cells are not able to utilise T3. Which is why I did the following blood tests to identify what elements need to be more optimal.
As an aside. Having been on SRT3 it has eliminated poor conversion as part of the problem as well as Reverse T3 (RT3) as that clogging up the T3 cell receptors. But it hasn't made me any better than when I was on T4 only or NDT.
This is weird as a range. I'm guessing anything under 6 is good, mine was even under 3. I take it this inflammation marker is pretty good and shouldn't drive up Ferritin.
Haemoglobin : 149 g/L ( 130 - 175 )
Mid point is 152.5, which I'm very close to. So according to this I don't have terribly low Iron. So unfortunately it doesn't support the iron panel results, but may not need to?
For me right now, with what I have already done, I think Iron is the most important thing to get right. Based on this I need good iron supplementation. Any comments on the decision and/or best way to get my iron levels up to those optimal levels fastest but safe?
Other blood tests:
B12 : 1263 pmol/L ( 170 - 800 )
Unsurprisingly high as I have been supplementing with sublingual B12 and Folate for 6 months to bring low in range result up.
I know saliva 4 point test is best and I have done it before. This was ordered by my doctor as another indicator. It did show low and so I have tried Hydrocortisone treatment from 32.5 mg spread through the day with no more than 10 mg at a time. Experimented down to 10 mg in the morning. Basically nothing helped. Sadly, it was not my magic solution to get T3 into my cells.
Plasma Aldosterone: < 103 pmol/L ( 103 - 859 )
This is a bit weird as I have been taking fludrocrtisone (Florinef), for this, but probably need to up the dose.
Other minerals:
Calcium: 2.52 mmol/L ( 2.15 - 2.55 )
Phosphate: 1.37 mmol/L ( 0.80 - 1.50 )
Albumin: 43 g/L ( 34 - 48 )
Adjusted Calcium: 2.48 mmol/L ( 2.15 - 2.55)
No real comment about these. If anyone has anything interesting to say, let me know!
Cholesterol. I wanted to know how I'm travelling with it. I know I have a bit too much LDL in the past, but good ratio though. The picture looks similar now too.
Fasting status: Fasting
Cholesterol: 4.4 mmol/L ( < 4 )
Triglyceride: 0.6 mmol/L ( < 1.7 )
HDL cholesterol: 1.72 mmol/L ( > 1 )
LDL cholesterol: 2.4 mmol/L ( < 1.8 )
Chol/HDL Ratio: 2.6 ( < 4 )
Based on this I have too much total cholesterol and LDL. But HDL is good and so the ratio is good. I do feel that my blood arteries/vessels are constricted as I have trouble every time doing the blood tests. Equally this could be just the hypothyroidism though.
Another reason to measure cholesterol is during my anxiety attacks that feel like I'm having a heart attack, I feel that I might need to get a measurement of my heart arteries. So do an angiogram. FYI I've done an echocardioagram, ECG and brain MRI, which were all good. Angiogram though, would show partial blockages that perhaps could be causing my chest pains and dizziness.
For reference, here is the last results, which is the rest of my Complete Blood Count (CBC):
RBC: 5.02 x 10e12/L ( 4.30 - 6.00 )
Hct: 0.45 ( 0.40 - 0.52 )
MCV: 90 fL ( 80 - 99 )
MCH: 30 pg ( 27 - 33 )
Platelets: 330 x 10e9/L ( 150 - 400 )
WBC: 7.0 x 10e9/L ( 4.0 - 11.0 )
Neutrophils: 2.7 x 10e9/L ( 1.9 - 7.5 )
Lymphocytes: 3.3 x 10e9/L ( 1.0 - 4.0 )
Monocytes: 0.7 x 10e9/L ( 0.2 - 1.0 )
Eosinophils: 0.2 x 10e9/L ( < 0.6 )
Basophils: 0.1 x 10e9/L ( < 0.3 )
Nucleated RBCs: 0.00 x 10e9/L
This has ended up being a massive post. I've put a short summary up the top and have hopefully made it as readable as possible with as much detail as I could. Please let me know your thoughts.
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ak_83
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Well, a lot to unpick in that post - which is good! We need the detail. But, I can't answer all your questions. I'll have a go with the beginning of the post.
First of all, slow release T3 is not such a good idea as it sounds, because you cannot know how much you will absorb. It depends a lot on how well your gut works. We often find on here that it doesn't work very well. But, whether it's SRT3 or normal T3, it doesn't improve conversion. It just increases your FT3 levels because it is T3. If you were to stop the T3, your conversion would still be the same as it ever was.
Secondly, being over-medicated can be as bad as being under-medicated. Hormones need to be just right for you to feel well. So, no, I wouldn't think you would feel better with the higher FT3.
My (researched) theory is that my cells are not able to utilise T3.
I'm pretty sure your cells are able to use T3, but some people do have trouble getting the T3 into the cells. But, if this were the case, the only 'cure' would be very high doses of T3. So, you would have felt better with the FT3 of 7.7, not worse. So, I doubt this is the case.
You haven't given a result for your rT3, but it is now known that rT3 does not block receptors because it has its own receptors. But, if you had high rT3, there is a problem somewhere causing it. And the problem that is causing the high rT3 could also be causing some of your symptoms.
Your ferritin and CRP are good.
I know saliva 4 point test is best and I have done it before. This was ordered by my doctor as another indicator. It did show low and so I have tried Hydrocortisone treatment from 32.5 mg spread through the day with no more than 10 mg at a time. Experimented down to 10 mg in the morning. Basically nothing helped. Sadly, it was not my magic solution to get T3 into my cells.
Based on your serum cortisol test, I can't imagine that your saliva test was bad enough to need HydroCortisone. And, spreading it throughout the day was a huge risk. You could have shut your adrenals down completely. Dosing throughout the day is necessary for those with Addison's, of course, but if your problem is adrenal fatigue, HC should not be taken after 1 pm. The adrenals need a helping hand in the morning, but also need to be left to their own devices some of the time, to keep them working. I take it you are no-longer on HC?
High cholesterol does not cause heart attacks. Also, there is not such thing as good and bad cholesterol - those were invented by Big Pharma to scare people into taking statins. I would suggest you read some of the articles by Dr Malcom Kendrick on the subject.
Personally, I would suggest you go back to normal T3 supplementation, but on a slightly lower dose. Are you taking any T4? If so, maybe it would be a good idea to try a higher dose. A reasonable level of FT4 is necessary for some people on T3 only, if not all.
I would also suggest that you take a B complex with your B12, rather than just folate. Find a good one with at least 400 mcg methylfolate - not folic acid.
And, I would suggest that you post your cortisol results and let's have a closer look. Do you get enough vit C and salt? How about protein?
Yes, I know T4 to T3 conversion is not improved, rather what I meant was taking T3 eliminates it as a problem.
My Reverse T3 was relatively low, but because at the time I had below average FT3, the ratio was 18. Based on this and possible conversion issues, my doctor recommend Slow Release T3.
My saliva cortisol was fine the first time, but the second time I took it when I had that high FT3. It showed at 3 out of 4 points that I was a little lower than average, but still in the green. Basically I was desperate and got my doctor to give me some hydrocortisone to experiment with. As I said it didn't work (as much as I really wanted it to work!).
Sublingual B12 I was taking with Folate 400 L 5-MTHF. It was just a simplification on my part in my OP.
For ages I have been taking Lypospheric vitamin C 1000 mg as well as Magnesium 250 mg elemental, Acetyl-L-Carnitine 500 mg, Co-Q10 bio absorb 150 mg and zinc powder that also contains selenium, lyposomal Glutathion, clinician strength probiotics.
Safe to say that over the last several months and over the years I've spent thousands, probably 10s of thousands on supplements with no significant/disceri improvements!
After all the researchand reading Stop the thyroid madness (STTM) and this forum I feel that the only options left to me are : get my iron panel optimal. Then probably switch back to compounded NDT possibly with a lower dose to avoid anxiety attacks and add a little T4 e.g. 50 mcg.
The rT3 ratio is just mumbo-jumbo, it doesn't tell you anything, it has no scientific basis. It certainly doesn't tell you you need to take slow-release T3. Your low FT3 tells you you need to take T3, but not slow-release, it's too unreliable.
HydroCortisone is not something to play around with! It's serious stuff. That was most unprofessional of your doctor. It doesn't really sound as if your adrenals are your problem, anyway.
I repeat, that when you're taking B12, you need to take a B complex, not just folate.
switch back to compounded NDT possibly with a lower dose to avoid anxiety attacks and add a little T4 e.g. 50 mcg.
How much NDT were you taking? Too little can cause anxiety attacks as easily as too much. What was your FT3 when you were on NDT?
I understand that rT3 ratio does mean you have to take Slow Release T3. I think the motivation for SRT3 from my doctor is that it's an easier protocol to follow than taking T3 several times through the day. Now, I don't think it even matters as per my blood tests, even after 12 hours I have good levels of T3 and I'm still no better for it. At least T3 (as opposed to NDT or T4) eliminates poor T4 to T3 conversion as well as high rT3 problem (by now - 6+ months on T3, I will have hardly any rT3 left).
Now with my T4, NDT, and SRT3. I record my FT3, FT4, TSH in a spreadsheet. Here is the latest relevant data to give some perspective. Comments below each test.
07/11/2017 - 200 mcg of T4 (Levothyroxine)
TSH: 5.60 mlU/L ( 0.40 - 3.80 ) - High
FT3: 4.7 pmol/L ( 4.0 - 6.8 ) - Low - just at lower 25% of the range
FT4: 20.3 pmol/L ( 12.8 - 20.4 ) - Max
Comment: Being on T4 stopped working. TSH has started going up again. Hypo symptoms were never gone, but they started to intensify including anxiety/adrenaline attacks.
18/12/2017 - 180 mg of NDT
TSH: 0.06 mlU/L ( 0.40 - 3.80 ) - Suppressed TSH
FT3: 6.2 pmol/L ( 4.0 - 6.8 ) - Near perfect. Just over 75% of the range
FT4: 14.9 pmol/L ( 12.8 - 20.4 ) - Just over 25% (14.7). Should be ~50% (16.6).
Comment: Started on NDT. Managed to guess a pretty good amount at least the blood tests look just about perfect for what I understand they should be. Perhaps a little more FT4 (closer to 50%) and FT3 (closer to 100%). However, lots of adrenaline reactions and anxiety. Symptoms of hypo not gone - perhaps a bit worse.
06/03/2018 - 150 mg of NDT
TSH: 0.59 mlU/L ( 0.40 - 3.80 ) - Low normal TSH
FT3: 5.3 pmol/L ( 4.0 - 6.8 ) - Just below 50%. Should be 75-100%.
FT4: 12.9 pmol/L ( 12.8 - 20.4 ) - At min. Should be ~50% (16.6).
Comment: Lowered NDT. It did seem to reduce anxiety. Very hypo though, very tired indeed.
23/07/2018 - 37.5 mcg x 2 SRT3
TSH: 4.30 mlU/L ( 0.40 - 3.80 ) - High
FT3: 7.7 pmol/L ( 4.0 - 6.8 ) - High
FT4: <0.6 pmol/L ( 12.8 - 20.4 ) - Suppressed
Comment: Switched to SRT3 for 4 months. Paradoxical symptoms. Not hyper. More hypo and lots of anxiety/adrenaline reactions.
29/09/2018 - 30 mcg x 2 SRT3
TSH: 14.00 mlU/L ( 0.40 - 3.80 ) - Very High
FT3: 5.8 pmol/L ( 4.0 - 6.8 ) - ~60% of range. Should be 75-100%
FT4: 0.7 pmol/L ( 12.8 - 20.4 ) - Suppressed
Comment: Dropped SRT3 dose. Most manageable on SRT3 I've been. Still hypo, but no paradoxical symptoms.
So, if you were me now, knowing what I've laid out here and in the entire post. What would you do?
To reiterate my own observations & research. I only see that my iron panel is not optimal. B12/Folate has been addressed. Vit-D is optimal anyway. Other things look good too. If I manage to adjust my iron (hopefully quickly), then I could try taking something like 120 mg of NDT + 50 mcg of T4. Depending on results and symptoms, I could raise NDT to 150 mg and if needed later to 180 mg (those are the standard amounts) - while keeping 50 mcg of T4 (which is one tablet).
I would be happy to hear any other suggestions though. Perhaps there is something in the result in my OP or here that paint quite a different route to you (or anyone else)?
Well, if you understand, I wish you'd explain to me how a ratio, comparing Free T3 with bound and free rT3 means you have to take anything at all. Slow release T3 doesn't even exist in some countries, so if that were true, we'd be doomed from the start!
I might believe it if the only reason for high rT3 was poor conversion. But it isn't. All sorts of things can cause high rT3 - low ferritin, low calorie-diets, infections, etc. etc. etc. In which case, taking T3 - any sort of T3 - and lowering your levo might lower the rT3, but it won't cure the actual cause of the high rT3. It's not as if high rT3 was a problem in and of itself - as far as we know, it isn't - but it is an indicator that something in the body is wrong. But, of course, if you don't take any T4, and your body is no-longer making any, you will have zero rT3. But, if you still feel bad, then that wasn't the problem, anyway.
The problem with slow-release T3 is that you can't guarantee you're going to absorb all of it before it's excreted. So, I don't think your doctor is right in saying it's an easier protocol - it's a haphazard protocol. And, I've noticed on here that people taking SL T3 tend to have lower levels of FT3. In any case, you're not obliged to split the dose of T3. A lot of us take it all in one go. I take my 68.75 mcg all in one go in the morning, and forget about it. And, before you tell me that you need to take T3 in split doses because it has a much shorter half-life, I'll tell you that T3 stays in the blood for 24 hours - by which time, you'll be taking your next dose if you take it once a day - and the T3 that gets into the cells stays there for about 3 days. Obviously, some people feel better taking it in split doses, but it's not an obligation.
FT4: 14.9 pmol/L ( 12.8 - 20.4 ) - Just over 25% (14.7). Should be ~50% (16.6).
When you're taking NDT, the FT4 doesn't have to be anywhere. It is where it is, and it's bound to be low due to the T3. Some people need it higher than yours, but not everybody. Some people don't need it at all. But, you have to experiment with different dose to find out what makes you feel best.
I don't understand why you keep lowering your dose. On 18/12/2017 - 180 mg of NDT your results were very good - apart from your FT4 which you thought was too low. In which case, the thing to do would have been to add in a little levo, tested six weeks later, and see how you felt. But, on the next test, your levels have dropped. What did you do different?
Do you take your NDT and T3 on an empty stomach, just like levo? Did you suddenly stop doing that?
How are your nutrients? Have you had them tested? What were the results? Are you taking any supplements?
Instead of telling you what I would do, I'll tell you what I did do. When I was on 6 grains of NDT, and feeling like the proverbial, even though I'd worked up slowly, I'd never felt well on NDT; and even though my nutrients were optimal because I knew NDT wouldn't 'work' if they weren't. So, I stopped NDT completely, and took T3 only. And it took a lot of experimenting with dose and supplements, but now, some five years later, I think it's as good as it's going to get. Not perfect, but then I'm a complicated case, but I'm not displeased at all with my results.
If you look at my results, I drop from 180 mg NDT down to 150 mg NDT. That's what I did differently. The reason for the drop - anxiety / adrenaline / palpitations. Whatever those crazy symptoms are, I hate them with a vengeance! And because my bloods were near perfect with 180 mg NDT, I didn't think that adding more to it would make anxiety go away. I've tried that approach though with T3, pushing it to 7.7 above the 6.8 max of the range. It wasn't what I needed.
Reverse T3. Yes I'm on the same page on most of what you say and never said I wasn't. One thing I thought that rT3 clogged up T3 cell receptors. I guess that may not be true. But anyway, this was the last straw to make me try T3 only therapy as nothing else seemed to be working. Yes, I could try normal T3, but now I'm inclined to get back to NDT as it supplies all thyroid hormones and it looks like the best outcome long term on average anyway. Yes, there are some who do well on T3, but I think I have proven that I am not the case. Who knows, now that I've brought up my levels of B12 up from below average on the range and if I do the iron, NDT on its own might do it.
Slow release or not, as you can see my results show that my blood has a lot of T3. So it's a moot point to say that SRT3 is less optimal in being absorbed. What matters is what's in the blood, at least that how I understand it.
As per my OP and reply, I state pretty much everything that I'm taking. And as I say, iron is the last thing in terms of vitamins that seems out of whack enough to likely make a difference.
Then (or at the same time) I'd look to move back to NDT, probably adding some T4 to it.
Thanks for sharing your case though. Yes, I also consider myself a special case. Nothing really seems to be effective for years, really puzzling my doctor. It's those paradoxical reactions to medications e.g. increasing thyroid (NDT/T3 especially) *should* make hypo symptoms go away. Doesn't seem to be the case with me. So treatment has been frustrating at the best of times... This forum has helped to sort through some things though. Even typing it out is helpful in a way, organising chaotic thoughts.
One thing I thought that rT3 clogged up T3 cell receptors.
That's what used to be thought. Now we know that rT3 has its own receptors, so does not clog up T3 receptors.
now I'm inclined to get back to NDT as it supplies all thyroid hormones
It supplies T4 and T3, certainly. But it's very doubtful that it has much, if any, T2 or T1. The thyroid makes little to none of those, T2 and T1 come from conversion of T3 and rT3. There's no proof that you'll find any in NDT.
as you can see my results show that my blood has a lot of T3
But obviously not enough - especially in your last blood test. If you have hormone resistance at a cellular level, you're going to need a lot more T3 than that. And it's not what's in the blood that matters, it's what gets into the cells. And there's no way of measuring that.
It could just be that you haven't yet given anything long enough to work. You got those perfect results on 180 mg NDT and promptly reduced your dose. It might have been a good idea to maintain that dose over a longer period. Nothing happens fast in the thyroid world, impatient people get nowhere. And, the longer you've been hypo, the longer it is going to take to get better. It's taken me 18 years to get where I am, after nearly 50 years of untreated hypo.
Anyway, good luck and I hope you find what works for you.
Thanks. It's mostly the heart symptoms - anxiety, dizziness, angina whatever it's called. It basically makes me put breaks on increasing or keeping the dosage of NDT or SRT3. But yes, perhaps I simply should revisit 180 mg dose of NDT together with improving my iron panel (should post separately to get advice on doing that soon)
Interesting. Thought I'd be able to switch from T3 one day to 180 mg NDT the next. Guess there is a better way. Would you be able to share how to best switch over, but doesn't take too many months?
Not months, no, because you can increase NDT every two weeks. But, my apologies, because I forgot you were changing from T3 to NDT! How much T3 are you taking?
That's a lot. Not in itself, but the equivalent in NDT. There's only 9 mcg T3 in one grain of NDT. 38 mcg T4. So, one grain is equal to about 75 mcg T4. 60 mcg T3 is equal to about 180 mcg T4 - depending on how well you convert. So, you might want to start on 2.5 - 3 grains. But, I'm not quite sure how you would transfer, because it's going to take about six week for the T4 to convert into T3. So, if you did a straight swop, you'd start with a bit of a decrease in dosage. How does the sl T3 come? As a tablet? A capsule? I'm really not sure about transferring this way round.
Yes, it's problematic. In New Zealand, where I live, T3, Slow Release T3, and NDT are all available only from compound pharmacies. They have typical strengths that you order in a bottle of 100 pills. Usually a bottle is around $100. It's not cheap. So unlike Armour you can't say, "take one grain, then two grains two weeks later".
Also I don't know how these compound formulas in NZ compare to Armour and similar in UK. My best guess is 50 mg of NDT is about 50 mcg of T4 in terms of its effect. I used to be on 200 mcg of T4 and then went to 180 mcg of NDT (and looking at blood tests, I could probably take 200 mcg of NDT to be even more optimal - if it wasn't for the pesky angina/anxiety etc).
I'll talk to my doctor, but I think T3 -> NDT switch probably has to happen immediately. For the first several days/weeks, the T4 would need to build up and convert to extra T3, so I guess I'll be under medicated. I could take a bit of T3 during that time to try to compensate, but it's a short period of time, which is probably just easier to grind through.
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