Results - is my TSH 'too' low?: They didn't check... - Thyroid UK

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Results - is my TSH 'too' low?

sip1 profile image
sip1
38 Replies

They didn't check my FT3 unfortunately, but here's what I have:

TSH 0.01 (0.35 - 4.5)

FT4 18.7 (11.0 - 24.0)

and also

serum free triiodothyronine 7.6 (3.9 - 6.8)

Whatever triiodothyronine is!!??

I'm currently taking 2 grains of NDT, 8 weeks today. I did try upping it a couple of weeks ago but felt pretty awful so dropped back down to 2. Not sure at this stage I need to raise?

My results back in May were:

TOTAL THYROXINE(T4) 96 nmol/L 59 - 154

TSH 2.83 mIU/L 0.27 - 4.2

FREE THYROXINE 14.7 pmol/l 12.0 - 22.0

FREE T3 4.0 pmol/L 3.1 - 6.8

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sip1
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38 Replies
humanbean profile image
humanbean

Triiodothyronine is T3. :)

sip1 profile image
sip1 in reply tohumanbean

Oh god is it, what an idiot lol. And I have just ordered a FT3 test as I didn't think they checked it! Doh!!!!!

On the stop the thyroid madness site it says:

If you are on desiccated thyroid (especially if lower than 3 grains) and find yourself with the free T3 high or above range in the presence of continuing hypothyroid symptoms, or even hyper-like symptoms (anxiety, shakiness), it’s a clue you have adrenal fatigue, aka low cortisol.

Hmmm - I have shakiness. I have been taking adrenal cortex extract ever since starting NDT.....

shaws profile image
shawsAdministrator

If you are feeling quite good on this dose, just stay on it as everyone varies. If you should develop new clinical symptoms you can try a slight increase.

Your TSH is fine- this is what mine usually is. If taking NDT our T3 will be higher and TSH low.

If your TSH is within range they don't usually test anything else.

Triiodothyronine is just another word for liothyronine (T3).

2grs NDT is equal roughly to 200mcg levo.

sip1 profile image
sip1 in reply toshaws

Thank you Shaws. I'm just a little concerned about the FT3 being above, esp as I do have some shakiness. I felt MUCH more shakey when I tried to raise, to the point where I could see my legs moving! Apart from the shakiness (which comes and goes, and I'm sure it's better when I have taken adrenal cortex extract) I feel so much better. I am now able to swim, cycle and I'm trying to get back into running again! 8 weeks ago, I could barely hoist myself off the sofa! I also no longer need to sleep in the afternoons..... :)

claudiasmum profile image
claudiasmum in reply toshaws

Just out of interest Shaws, how would you know that this wasn't too high a dose? Isn't the T3 meant to be in range but in the upper half/third/quarter? Isn't being over the range indicative of over medication? Or is that just for people without adrenal issues?

I am curious because my T3 is at the bottom end of the range, T4 is well below range and TSH is also very low. My endo thinks I am overmedicated at 3 grains even when I am at the bottom end of T3 scale.

I don't think I will ever understand!

shaws profile image
shawsAdministrator in reply toclaudiasmum

I am not medically qualified in any way and I don't even think many Endocrinologists know how best to treat us. I will say that before the blood tests were introduced along with the use of levothyroxine alone) doctors medicated with NDT till the patients clinical symptoms subsided and they felt well and If we take too much we will have symptoms of overstimulation and we will reduce our dose. There were no thyroid gland blood tests in those days. This is an excerpt from a link I've just read:-

Oh, if only it were this simple all the time! Although the majority of individuals with hypothyroidism will be easy to diagnose with these simple blood tests, many millions will have this disease in mild to moderate forms which are more difficult to diagnose. The solution for these people is more complex and this is due to several factors. First we must realize that not all patients with hypothyroidism are the same. There are many degrees of this disease from very severe to very mild. Additionally, and very importantly, we cannot always predict just how bad (or good) an individual patient will feel just by examining his/her thyroid hormone levels. In other words, some patients with very "mild" deviations in their thyroid laboratory test results will feel just fine while others will be quite symptomatic. The degree of thyroid hormone abnormalities often, but NOT ALWAYS will correlate with the degree of symptoms. It is important for both you and your physician to keep this in mind since the goal is not necessarily to make the lab tests go into the normal range, but to make you feel better as well! We must also keep in mind that even the "normal" thyroid hormone levels in the blood have a fairly large range, so even if a patient is in the "normal" range, it may not be the normal level for them.

For the majority of patients with hypothyroidism, taking some form of thyroid hormone replacement (synthetic or natural, pill or liquid, etc) will make the "thyroid function tests" return to the normal range, AND, this is accompanied by a general improvement in symptoms making the patient feel better. This does not happen to all individuals, however, and for these patients it is very important to find an endocrinologist who will listen and be sympathetic. (We aim to help you find this type of doctor.) Because most patients will be improved (or made completely better) when sufficient thyroid hormone is provided on a daily basis to make the hormone levels in the blood come into the normal range, physicians will often will rely on test results to determine when a patient is on the appropriate dose and therefore doing well. Remember, these tests have a wide normal range. Find a doctor who helps make you FEEL better, not just make your labs better because once given this diagnosis, you are likely to carry it for a long, long time. There is more than one drug, there is more than one lab test, and there is a "just right" doctor for everybody.

endocrineweb.com/conditions...

And another with good info:-

thyroid.about.com/od/thyroi...

claudiasmum profile image
claudiasmum in reply toshaws

Thanks for that. It's so difficult to work out if a symptom is a hypo or a hyper one though isn't it? Anxiety for example.

sip1 profile image
sip1 in reply toclaudiasmum

Definitely. When I took too much, I was expecting to literally feel 'hyper', but I felt MORE tired than before, sick, shakey and almost flu like. It's tricky - no wonder the 'professionals' get confused too!

shaws profile image
shawsAdministrator in reply tosip1

Here is an another excerpt from STTM but I believe you aren't having these symptoms.

If you are on desiccated thyroid (especially if lower than 3 grains) and find yourself with the free T3 high or above range in the presence of continuing hypothyroid symptoms, or even hyper-like symptoms (anxiety, shakiness), it’s a clue you have adrenal fatigue, aka low cortisol.

stopthethyroidmadness.com/l...

sip1 profile image
sip1 in reply toshaws

Yes - that's the same I pasted above hehe :) I don't think I have hyper symptoms either, I'm fairly sure the shakiness is due to low cortisol.

I wonder if, because I chew the NDT that I am actually doing ok on a lower dose? If I swallowed them, I wonder if I would have to take more.......

Riverfrog profile image
Riverfrog

Hi, I am not familiar with taking NDT so probably should say nothing here; However as I'm sure you are aware you don't want to have too much thyroxine in your system, that also causes problems.

What is your pulse rate? the shakiness does seems like you are overdoing the meds.

Does it take time and adjustments to the dose perhaps to get the right dose of NDT?

sip1 profile image
sip1 in reply toRiverfrog

My pulse hasn't really changed much since starting - I checked it last night, and it was 55 bpm. My temps haven't really changed either. I have ordered an adrenal stress test, as I do think that my cortisol might still be a little low. What a pain! I have been taking adrenal cortex extract since starting NDT too, plus various vitamins/supplements so I don't know what else I can do.

shaws profile image
shawsAdministrator in reply tosip1

It may have taken several years for us to become hypothyroid so it stands to reason it can take as long to get well.

Sometimes, it takes a while for our body to adapt to a new regime so I would continue as you seem to be so much better than before. You are doing everything right. I think too much would give you a very fast pulse, you would feel quite overstimulated. Exercising reduces T3.

sip1 profile image
sip1 in reply toshaws

Blimey - I'd hate to see how high it'd be if I didn't exercise then! ;) But you're right - I think we need to be patient sometimes with the relief of all symptoms. Sometimes I wonder though, if we will ever be 'completely' symptom free....

At the moment though, it seems like I have come a long way in 8 weeks.... I'm just grateful I can now do the things I love to do! When I was told I had chronic fatigue syndrome, I had this awful sinking feeling that my life was over...

shaws profile image
shawsAdministrator in reply tosip1

Well, at present I am symptom free, thankfully. I was first diagnosed 2007 after about 3 years to-ing and fro-ing between different consultants/doctors each with wrong explanations/diagnosis etc etc and becoming more and more unwell.

Girlscout2 profile image
Girlscout2

Hi

When was your last dose of NDT in relation to this test? You need to have ingested your last dose about 16 - 18 hours before the draw otherwise you'll get an over the top T3 and everyone will panic. Sure you know this, but never take meds before a test, take them after. Having said that my FT3 is around 7.5 to 8 and I'm on 7 grains (I'm thyroidless) - my TSH is totally suppressed (which is good as I had cancer) and my endo is totally fine with this. In India, the top of the range for T3 is 8 ....

Shakiness might be low iron (ie not optimal, not 'normal' by crappy NHS standars), or still inadequate coritsol ..... as you rightly say. You need to be off the cortex for two weeks before testing (bummer I know ...)

I doubt your dose is too high, two grains isn't that much, and most end up around 3 - 5 depending on the severity of their hypOthyroidism. You are probably experiencing false hypers (or pseudo hypers - there's a page about it on STTM) - partic as your pulse is so low.

Or you could do the metabolic temp graph to track adrenals now you are on adrenal support. drrind.com/therapies/metabo...

Rebecca

x

sip1 profile image
sip1 in reply toGirlscout2

Oh god, two weeks off ACE? I never thought of that! Can't bear the thought of that, I might hang in there for a bit longer!!

Yes - I left 26 hours before having the blood test. Didn't want false readings!

What are false hypers? I'll have a quick look on STTM.

Girlscout2 profile image
Girlscout2 in reply tosip1

Here's the hyper symptoms page: stopthethyroidmadness.com/h...

Do the graph if you can't bear coming off the glandulars ....

xx

suzannai profile image
suzannai

Are you finding a very big difference with the adrenal extract?

Also, how is your iron/ferretin? it is possible that you are also pooling.

sip1 profile image
sip1 in reply tosuzannai

I've taken adrenal cortex extract right from when I started NDT, so it's difficult to say - although I'm sure I have felt a difference with the shakiness AFTER I have taken it, as it seems to almost completely go off! So in that respect, I would definitely say it works :)

My iron/ferritin is fine - and I take iron tabs too, so it's not that.

How would I know I was pooling?

suzannai profile image
suzannai in reply tosip1

Good to hear about the positive response to the adrenal cortex. I do think that is the cause of the shakiness...the NDT is causing your depleted adrenals to work harder.

Here is a link regarding pooling: stopthethyroidmadness.com/p...

Clutter profile image
Clutter

Sip, Your FT3 was tested because your TSH is suppressed. I think your elevated FT3 will be contributing to your shakiness and anxiety and you may feel better if you reduce your dose to 1.5 grains. If hypothyroid symptoms resume you can raise your dose to 1.75grains. Fatigue can be a symptom of overmedication too. thyroid.about.com/od/thyroi...

sip1 profile image
sip1 in reply toClutter

Would 1.5 grains be enough overall? Or am I still adjusting to the NDT, and still have to raise at a later date?

It's all very confusing sometimes! Despite reading so much about it over the past few months!

Clutter profile image
Clutter in reply tosip1

Sip, 1.5grains may not be sufficient long term but for now it will allow your FT3 to drop slightly into range which may improve your anxiety and shakiness. I'm not a 'keep it in range' freak but suppressed TSH plus elevated FT3 do indicate over medication which can be as unpleasant as under medication. If you don't feel well on 1.5grains you can raise it again. :)

The Adrenal Cortex may be working on your adrenals and improvement may mean that your own thyroid hormone and absorption of NDT have improved. If you've made any dietary changes recently these may also have enabled better absorption.

sip1 profile image
sip1 in reply toClutter

I wonder if the 3 grains were still working their way out of my system when I had the blood test? I dropped back down to 2 grains, 7 days before the blood test?

At this moment in time - including yesterday, I have felt less shaky. In fact, I would say today I haven't really felt it at all - and I got up early and did 78 lengths at the swimming pool, and 20 minutes cycling! Whether me feeling better has anything to do with the ACE I don't know, but aside from that - I feel really well. I'm reluctant to drop down to 1.5, as I'm just afraid that I will start to feel hypo again... :-/

Clutter profile image
Clutter in reply tosip1

Well 78 lengths will have burned off some T3, Sip :-D

sip1 profile image
sip1 in reply toClutter

You reckon ;) Perhaps I should go back later tonight and do another 78 to burn some more off :D

Clutter profile image
Clutter in reply tosip1

Ooer, your arms might fall off, Sip :o

sip1 profile image
sip1 in reply toClutter

I think if I tried to do anymore I would drown! :D

sip1 profile image
sip1 in reply toClutter

Well, my doctor phoned and left a message on my answerphone asking to ring him back (which I'll do tomorrow). I suspect he looked at my thyroid results today. I'm thinking he may first - ask me what I'm taking!! (I did mention it to the nurse Monday that I am taking 2 grains of NDT), and possibly suggest lowering it? I'm guessing.

What I'm really struggling to understand, is - how can I be overmedicated on only 2 grains, when I have been slowly increasing over the past 8 weeks?

Clutter profile image
Clutter in reply tosip1

Sip, 2 grains is roughly equivalent to 150mcg Levothyroxine so it's not a piffling dose. If you only need 1.5 or 1.75 grains then 2 or 3 grains will overmedicate you. Don't forget your thyroid gland will still produce hormone in addition to the NDT.

Does your GP know you're self medicating?

sip1 profile image
sip1 in reply toClutter

I did tell the nurse on Monday, and she made a note on the computer what, and how much I was taking. I'm assuming he must have seen this, but who knows. I almost feel like he's phoning to tell me off! ;-)

Clutter profile image
Clutter in reply tosip1

Stick your fingers in your ears, close your eyes and sing lalalala.

Drowns out tellings offs.

Peacefullbliss profile image
Peacefullbliss

The adrenals is not the only culprit for T3 over the range (pooling). You also need to check your D3, vitamin B12, iron, ferratin and adrenals by doing a 24hour saliva stress test. If any of these are low it will affect T3 getting into your cells.

I am also following the STTM protocol. I am on 3 grains. My T3 is currently like yours. I have just ordered a 24 Hour saliva test.

sip1 profile image
sip1 in reply toPeacefullbliss

How do you feel with an above range T3?

I have today cut down to 1.5 grains - I don't think I have a choice at the moment, as I still have the shakes. Perhaps this is all I need - will soon find out!

Fairly sure it isn't D3, iron or B12 as I have taken D3 for yonks, and my B12 and iron were all good, and take them anyway (my ferritin was 69 - so have been trying to get it higher which it must be by now).

The reason it's over is down to one of two things. I don't need 2 grains, or I still have cortisol issues. Still waiting for my adrenal stress test to arrive - taking ages!!

Peacefullbliss profile image
Peacefullbliss

I feel mostly fine. I am holding on 3 grains. Will not be reducing it. I was considering whether to increase by 1/2 grain but decided to hold as an increase will probably make me go hyper. I have no thyroid so I cannot drop too low for too long. 3 grains will sustain me for now. The only symptoms I have at the moment is adrenal symptoms. I stopped taking adrenal support recently and it has unmasked adrenal issues. I have had adrenals issues since my op in 2013 when my blood pressure went up to 500+ and I have had longstanding stress. I put myself on adrenal support after my adrenals crashed last year without doing a 24 hr adrenal saliva test. Have had insomnia since October last year so am going to treat my adrenals properly this time by doing the test so I know where my deficiencies are.

I did take my meds on the day I had my thyroid numbers tested. I had no idea the testing was going to be done on the day. So my T3 could have been elevated because I took my meds.

sip1 profile image
sip1 in reply toPeacefullbliss

Out of interest, which NDT are you taking? I'm taking thyroid - s. I also chew it, which I'm sure makes a difference with how much a person needs. Do you split your dose? This can help apparently as it puts less stress on the adrenals than taking it all in one go. I've always split my dose.

Peacefullbliss profile image
Peacefullbliss

I always split my dose. I take a larger dose at night and a smaller dose the following day in the afternoon. I am on WP Thyroid because it only has 2 fillers and is hypoallergenic. I take it sublingually. Pop it under my tongue and let it dissolve. I have stomach issues so taking it sublingually means it bypasses my stomach and goes straight into my bloodstream. . I am not sure taking it sublingually puts less stress on your adrenals. If your thyroid medication has to work hard or if you are on too low a dose it's a stress on your body so your adrenals will be stressed with all the work it will have to do.

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