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[SundayGirl]

Why am I not surprised 

[joziel]

Thanks folks. Amanda that is very interesting. So - do you have Graves? Why is your T3 so high? And how can it be, if your T4 is zero - where is the T3 coming from?!
 
I'm very interested that your endo has said it can take 6 months. I have tried to find this out but all I can find is that it can take 6 months for TSH to recover to normal range. And my TSH is in normal range. That's the problem - it shouldn't be. I mean, my other thyroid hormones are not likely to increase if my TSH isn't requesting that...

I just don't know how to get out of this situation, because if I get back onto thyroid meds, how is that going to support my TSH recovery? On the other hand I can't live this hypo for up to 6 months....

I did find this paper which was interesting in terms of eating disorders and thyroid stuff: https://pubmed.ncbi.nlm.nih.gov/3114819/

It talks about "normal basal levels of serum TSH with normal or delayed responses to TRH. "  And " A delayed TSH response to TRH was noted in 66% of patients, hyporesponsiveness was seen in another 24%, and a normal response in only 10%. "  That would fit with my increased prolactin, which is responding like it's supposed to, to TRH - whilst my TSH isn't.

I have always been a just-normal BMI, I mean I haven't been formally diagnosed with an eating disorder or hospitalised. I would just eat for a day and then fast for many days because my metabolism got so slow that eating normally for that one day would then take many days of fasting to get over. I did this all my life, I couldn't see an alternative. A few years ago I tried to 'just eat normally'. After 2 months I'd gained about 2 stone and I decided to call a halt to the experiment. It seemed that my body would hold onto anything I ate after a lifetime of deprivation. Whilst on thyroid meds, I discovered I could override all this. I could actually eat normally and my metabolism sped up to be that of a normal person's. It was life-changing. (Socially, personally, in every way. If I need to be on thyroid meds to live like that, I will be - it's a quality of life thing.) I reverse dieted up to 2400 calories. Then I came off the thyroid meds and tried to maintain all that, thinking that now I was eating normally and regularly and high protein, things would be okay. And this is what's happened. I am still eating, but my metabolism has slowed. Not to what it was before I went on the thyroid meds, but slower than when I was on them. Which is to be expected, looking at that thyroid panel.

SundayGirl, I've been dealing with thyroid stuff for a year now so I know all that. rT3 is relevant - but only in the context of the rest of the thyroid panel. My antibodies are always normal. They have been tested many times, including just now.

Bombshell, I've contacted the thyroid doctor I was seeing to ask if he can fit me in, as the next appointment he has online is January. I'm a bit reluctant to involve my NHS GP as it would mean sharing these results which have the high estradiol result on them (890pmol). I've since reduced my gel dose, aiming for 650pmol - but I don't want her to start refusing to prescribe my high dose E or I'll be in a mess as I can't afford these doses privately.    I tried cutting the gel out totally and just using 200mcg patches, but I got the horrible night time meno anxiety back, so that was taking me too low - so I halved the dose to 3 pumps at night only. (I was doing 3 in the AM and PM.)

I have people telling me I should book a private head/brain MRI to check my pituitary and also get a private ACTH blood test done.... Everything is just so expensive and the NHS is so crap with both meno and thyroid stuff. I think about getting health insurance but it would now exclude all this 

If I don't suppress my TSH (because I don't take enough T3 to suppress it), will that enable it to recover? And then I can gradually wean off this 15mcg of T3 I'm on?

[SundayGirl]

Joziel I have a feeling that you're overthinking everything.

What exactly do you mean by TSH recovery?

And can you expand on this bit below.

rT3 is relevant - but only in the context of the rest of the thyroid panel.

Oh and as an aside, I don't have, and never have had, any Thyroid antibodies. I still have thyroid disease and a well below range TSH.

[bombsh3ll]

Just to add that hypopituitarism is rare and not usually caused by brain tumours.

You would also almost certainly have other symptoms, including amenorrhea (as no gonadotrophins) and LOW cortisol (as no ACTH).

I wouldn't bankrupt yourself on private brain scans based on the comments of people online who may have kind intentions but are almost certainly not clinicians.

If your specialist has the remotest suspicion of any structural pathology they can feed you back into the NHS with a referral that will carry a lot more weight than going to your GP and saying you think you have a condition that is as rare as rocking horse manure, based on lab tests they will regard as normal.

Mine took about 8 months to return to within "normal limits", by which I mean bottom of the range, and slightly lower than before treatment.

[joziel]

SundayGirl, my TSH should be very high, demanding more thyroid hormones - given how low mine are. It would actually be more reassuring to have a high TSH because it would mean that my other levels could be expected to increase in coming weeks. Without that, things will stay the same, as they have between the 6 and 10 wks tests. What is happening is what's described in the abstract to this article: https://pubmed.ncbi.nlm.nih.gov/3114819/

Basically, the TRH (not TSH) should trigger both TSH and prolactin to rise. Since my prolactin has risen, that suggests that the TRH is being produced as normal and should be triggering TSH to rise as well. But that's not happening. If I now go back on a TSH suppressive dose of thyroid meds, it will never happen. So I am thinking I need to take a low dose of meds to take the worst of the hypo symptoms away but without suppressing TSH, giving my TSH time to 'realise' it is no longer suppressed - which may take some months - and then potentially to very gradually wean off this 15mcg of T3 I'm on, possibly re-testing each time I reduce by 5mcg. I might never get off entirely and it might be good for me to always take this low dose and I'm prepared for that as well - I don't want to come off and be suboptimal, since low T3 is implicated for loads of different health conditions. I just don't want to be full-on thyroid meds unless I really need that.

With the rT3, you will always make some rT3 because T4 will always become rT3 and also T3. Where things go wrong, is when too much rT3 is made in proportion to T3. For example, my rT3 on that test I did 6wks after coming off is 17 and mid-range. That would be totally fine if my T3 was also mid to high range. But to have a T3 which is far below range and a rT3 which is so 'normal' and mid-range is a bad combination.

It's about the ratio and balance rather than one result by itself.

Bombshll, thanks. I think I just had a migraine last night whilst this person on social media was terrifying me and I could feel my cortisol and adrenaline going up (right before bed unfortunately) - and then had a crappy night with 4-5 hours sleep again.

Can you give me more details about how your results took 8 months to return to normal? What dosage were you on, of T4 and T3? And do you have the results from when you came off? All I can find is stuff about TSH itself normalising and it taking a while, but not about T3 and T4 remaining low (and unchanging) whilst TSH is normal. I am thinking that your TSH was high??

[AmandaJR]

Hi Joziel, I totally understand you not wanting to be hypo for 6 months. I’m trying to accept that’s what I’m looking at too, my 6 months doesn’t even start until my T3 reading get’s under 6.8 and I’m constantly cold now, so think hypo is near. Hyper symptoms have lessened thank God.

I asked the Endo if they’d add levothyroxine if I couldn’t manage with hypo symptoms. I was told not for the first 6 months as that will dissuade the TSH to operate normally. She said TSH can be slow to respond but they want to see if it can.

Your last blood tests at 6 & 10 weeks show a slight TSH increase, I think that’s positive as it’s signifying more hormones are needed.

You’ve sorted out your nutrition, Estrogen levels and are working out, maybe your body needs more time to coordinate the changes and trust these changes are the new normal? They say HRT changes take 3 months to settle and hours of thyroid research suggest the thyroid needs even longer! I’m not a patient person so I understand your frustration too!

Your original thyroid results from INUVI are identical to my normal/pre Hyper chaos taken 3 years ago. I was eating low carb and think this dropped my T3 reading but I had no thyroid symptoms and was hiking for 8 months solid, fittest I’ve ever been. I’ve never tested rT3, I think you’re right to attribute it to fasting.

I have a ‘diagnosis’ of T3 Toxicosis. Cause unknown. It isn’t autoimmune, not Graves, no thyroid nodule found. I’ve had my diet scrutinised, done a low iodine 6 week food plan, stopped all supplements and gone grass fed, gluten free etc. T3 doubled on iodine restricted menu and lost more weight.
Tomorrow I’ve got a PET scan, Wednesday a DEXA, Friday another Uptake test. A smear on Thursday, deep joy not! Somewhere in here I need to do a full time job and have 3 dogs and horses to exercise.

Be careful with going private for diagnostic tests for thyroid, if possible get your GP involved to go NHS route, numerous scans soon cost a fortune. It can take a long time to get to see an NHS Endo, but worth it. I have private healthcare and it does not cover chronic conditions, I’m not sure if all thyroid issues are classed as chronic but I chose not to involve insurers.

When is your next blood test?

[SundayGirl]

I think you have a confused view of the HPT feedback loop.

SundayGirl,  It would actually be more reassuring to have a high TSH because it would mean that my other levels could be expected to increase in coming weeks.

Not necessarily if your thyroid is failing.

 So I am thinking I need to take a low dose of meds to take the worst of the hypo symptoms away but without suppressing TSH, giving my TSH time to 'realise' it is no longer suppressed

This won't work in the way you want it to. Thyroid medication actually replaces what your thyroid should be making. It doesn't act in addition to what your thyroid is making. If you go down this route, your TSH will drop as the HPT feedback loop is compromised by the addition of Levo/lio.

By the way, your TSH is in no way suppressed. In fact, it's higher than the majority of people who do NOT have thyroid issues. (A TSH of 0.04 - now that is suppressed. )

With the rT3, you will always make some rT3 because T4 will always become rT3 and also T3. Where things go wrong, is when too much rT3 is made in proportion to T3. For example, my rT3 on that test I did 6wks after coming off is 17 and mid-range. That would be totally fine if my T3 was also mid to high range. But to have a T3 which is far below range and a rT3 which is so 'normal' and mid-range is a bad combination.
It's about the ratio and balance rather than one result by itself.
 

There are many reasons for rT3 and yes everyone has some in their body. One explanation for high rT3 is a very high T4. In this case your body converts excess T4 to rT3. Another reason is your body has problems converting T4 to T3. I have a feeling that the doctor you saw may have picked up on a possible conversion issue with you which is why you were prescribed Liothyronine.
rT3 is totally inert and is expelled from your body really quickly. The important ratio is the T4/T3 one.

The tests you had after 6 weeks and 10 weeks off all thyroid replacement not only show a low T3 but also a low T4. Your low T3 is a result of this as your body needs T4 in order to convert it to T3. If those were my results, I'd prefer to go back on Levothyroxine and monitor my T4/T3 conversion especially considering that your TSH is rising.

(I've been hypothyroid for many years now so would hope that I know what I'm talking about)

[joziel]

Amanda, my next blood test isn't booked. I think I will wait to see what my thyroid doctor has to say about it all. My original plan had been to stay on 15mcg T3 for 6wks and then re-test and see what that was doing. Obviously if symptoms are really bad or unbearable I might need to revisit that idea. I don't mind staying on this dose long-term, I was on it to start with and have labs on it - but my ignorant original doctor (who is also a private thyroid doctor!) insisted I start T4 when the 15mcg of T3 sent my T4 below range. That was enough to suppress my TSH and then it was a much bigger deal to get off meds.

SundayGirl, sorry but thyroid medication doesn't necessarily replace your thyroid - unless you take a high enough dose to suppress TSH. Levo and lio work very differently. It is unusual to have suppressed TSH on levo only, in fact they try to avoid it.

You don't need to tell me what a suppressed TSH dose is    mine has been 0.007 for a lot of this year on 50mcg T4 and 45mcg T3.

If you suppress your TSH, you turn your thyroid hormone production right down to a tiny trickle. (It never totally turns off but it is dialled completely down.) You then need to replace those missing hormones with exogenous hormones - as in - fully replace them, because the TSH is dialled almost off. If you don't suppress the TSH, the T3 you take adds to what you already have. You can easily see this in my first labs after going on thyroid meds. Before thyroid meds:

TSH        1.37        (0.270-4.2)
free T3    3.9        (3.1-6.8 )
free T4    18.6        (12-22)
rT3            32            (8-31)

On 15mcg T3:
TSH 1.15
free T3    4.3    (3.1-6.8 )
free T4    9.7    (12-22)
Total T4    54    (59-154)
rT3            15    (8-31)

There is no way 15mcg of T3 is enough thyroid hormone to provide anyone with enough. It is in no way a replacement dose. It is working in an additive way, to boost endogenous hormones. That is why my T3 is boosted here and my rT3 has been hugely reduced. This would be a good place for me to get back to, now - since it would keep my rT3 down and give me a little boost to the T3. It would also not worry my NHS GP because my TSH is not suppressed and that's all she tests for, like all GPs.

Unfortunately T3 also sends T4 right down, and it did that here. This freaked out my ex-thyroid doctor who insisted I start 50mcg of T4 as well. The addition of T4 suppressed my TSH, and some of that T4 got converted into rT3 (which is fine, because T3 was also good/high):

TSH        0.026    (0.270-4.2)
free T3    5.1         (3.1-6.8 )
free T4    13.8        (12-22)
rT3            20            (8-31)

It is a lot harder to come off meds if the TSH is suppressed because it takes longer for everything to get going again - much longer than if it had been shut down less with TSH not suppressed. Basically, you have to go through a period of feeling/being hypo because that's what is required for your thyroid to kick in again. This effect is much reduced if TSH isn't suppressed and is functioning, it will react more quickly to a dose change (if you are euthyroid, which I'd been assuming I was - but who knows now).

Yes, there was a difficult choice to make about whether to go back on a low T3 dose or whether to start a low T4 dose. Given that my body really likes to make rT3 from T4 - and will do that even when thyroid hormones are low, making things even worse (as it already is) - I opted for the low T3 dose. Especially as this is a dose I've been on before, and especially as I may end up remaining on this dose if I need to - rather than temporarily trying to fix things with it. After all, I don't know if I can improve on the kind of labs I had before going onto meds. It was a gamble to see if eating properly and consistently changed thyroid stuff for me, and getting back to those first set of labs on 15mcg of T3 could be a good place for me, keeping rT3 down and giving T3 a little boost. If I can stabilise here in terms of hypo symptoms, I could also wean slowly off - much more slowly than I just came off everything, - several months between each 5mcg reduction. I've never been on T4 only, as that wasn't going to help me with my original conversion issue - I would just have made more rT3 from it. So was reluctant to try something I'd never tried before, at this dodgy time.

[AmandaJR]

This won't work in the way you want it to. Thyroid medication actually replaces what your thyroid should be making. It doesn't act in addition to what your thyroid is making. If you go down this route, your TSH will drop as the HPT feedback loop is compromised by the addition of Levo/lio.

Thanks for posting this SundayGirl, this is exactly what my endo said. It makes more sense to me now.

[SundayGirl]

This won't work in the way you want it to. Thyroid medication actually replaces what your thyroid should be making. It doesn't act in addition to what your thyroid is making. If you go down this route, your TSH will drop as the HPT feedback loop is compromised by the addition of Levo/lio.

Thanks for posting this SundayGirl, this is exactly what my endo said. It makes more sense to me now.

You're very welcome Amanda

[SundayGirl]

Joziel you seem hell bent on ignoring everything except the bits that you think you understand.

SundayGirl, sorry but thyroid medication doesn't necessarily replace your thyroid - unless you take a high enough dose to suppress TSH.

You're wrong in your thinking with that. The clue is in the name - thyroid hormone replacement. Not medication. If you take any any amount of T4, then the HPT feedback loop takes account of the extra hormone circulating and therefore TSH will drop as your thyroid doesn't need to make as much T4 and T3.

Levo and lio work very differently.

Levo is T4 and Liothyronine is T3 and yes I do know they perform differently.

It is unusual to have suppressed TSH on levo only, in fact they try to avoid it.

Actually it's very common. Yes the medical profession (if that's who you mean by they) doesn't like it and will spout all sorts of nonsense about heart issues etc because TSH is the be-all and end-all, but for many people it's the only way that their T4 and T3 levels are correct for them.

[bombsh3ll]

Bombshll,

Can you give me more details about how your results took 8 months to return to normal? What dosage were you on, of T4 and T3? And do you have the results from when you came off? All I can find is stuff about TSH itself normalising and it taking a while, but not about T3 and T4 remaining low (and unchanging) whilst TSH is normal. I am thinking that your TSH was high??

Hi, I was able to find results from the peak of my T3 treatment, and those 8 months after.

Peak T3 treatment - 75 mcg T4 and 35mcg T3

Tsh 0.03
T3 5.0
T4 10.7
Cholesterol - LDL 2.4 Total Chol 4.4


8 months after stopping, on no thyroid treatment

TSH 2.8
T3 3.2
T4 12.0
Cholesterol LDL 3.5 Total chol 5.5

(these were very similar to baseline bloods I had done before starting, I think my TSH had been 2.2, t3 3.something and T4 12.something. Cholesterol also virtually the same)

I didn't test earlier than 8 months after stopping.

Having established that whilst treatment did improve longstanding symptoms suggestive of hypothyroidism - sluggish metabolism and GI transit and lifestyle independent raised cholesterol (all of which I had long before the brain injury which left me with severe dysautonomia affecting my heart rate), it was unable to increase my resting HR above 50, and because I only did the trial to see if I could avoid a pacemaker, I weaned down by about 5mcg a week and stopped T3 completely the day before my pacemaker was sited and afterwards did a similar fairly quick taper off T4.

If money and access to treatment were no object, I probably would have stayed on some form of T3 based therapy long term, however I feared becoming dependent on this since it is not provided by the NHS. Even with a private prescription there were issues sourcing the T3, and it was essentially just a really expensive laxative, anti reflux med and statin rolled into one.

I did just want to mention the cholesterol in case this is of interest to you because whilst I knew that raised "bad" cholesterol can be caused by sluggish thyroid function, it was really quite an eye opener to see this in action in my case. If you have had a lipid panel done at various points in your journey this may be an additional tool by which you can track your thyroid hormone activity.

I have never at any point had a high TSH. Ironically in the wake of my brain injury I was tested for hypopituitarism, which I did not have, although I do have dysautonomic hypoaldosteronism and mild DI.

[CS24]

Hi joziel,

I am the same as you. I am 48 and was a poor absorber. I was sent to newson and they increased my dose from 100 patch to 100 patch and 6 pumps of oestrogen. It’s basically like 10 pumps. At first I felt great but my body struggled and I started to have sleep problems and then within 4 weeks full on insomnia. I also struggle with little jerks. My anxiety is also bad.

I have been told two things. One my body did not like the increase in oestrogen and caused something called oestrogen dominance. I have also been told it kicked of a histamine intolerance.  Both cause insomnia and jerks.

So my gp dropped my oestrogen back to a 100 patch. I found a doctor in the US treating the histamine intolerance. I have been out on an antihistamine for 3 weeks and told to tapper off over the next week, a specific probiotic and something called DIM. I am hoping they can fix this. It is so stressful.

X

[SundayGirl]

Bombsh3ll  -  it's always best to include the reference interval when posting results - lab ranges vary. Without this, it's just a meaningless number.

...... however I feared becoming dependent on this since it is not provided by the NHS.

Liothyronine is most definitely available via an NHS Endo.

Even with a private prescription there were issues sourcing the T3,

Liothyronine is easily sourced from many pharmacies.

.....and it was essentially just a really expensive laxative, anti reflux med and statin rolled into one.

You've posted some very dubious things over the past months but this just takes the biscuit. 

[Kathleen]

Hello again ladies.

As a Hashimoto Thyroiditis patient I am finding the discussion on thyroid problems very worrying.  Suddenly everything seems so complicated!

Can someone reassure me that having TSH and T4 blood levels within the normal range is okay? My GP assures me that it is and that my Levothyroxine medication is doing a good job.

I spend too much time fretting about my HRT, I certainly don't want anything else to worry about lol.

No offence intended ladies and take care.

K.