Have I gone overactive?!

[Jojozo]

Can anyone please help with my latest results? I'm confused! I saw a gyne doctor the other day regarding pelvic pain and she said that it could be down to my thyroid being overactive. I was diagnosed with an underactive thyroid in my early 20s, and Hashimoto's six years ago, but she thinks I've tipped the other way. She did admit she's not an endocrinologist but she said that my TSH level (which has been 0.01 for many years now) suggests I'm overmedicating and need to stop taking the T3, which I am sourcing myself.

I've attached the latest test results, which were done last month. The test I had done in February 2018 were quite different and suggest I was over-medicating, even though I'm still on the same dosage I have been for several years - 125mg Levothyroxine and 12.5mg of Cytomel per day. I fasted before both test, and stopped medication 24 hours before.

Feb 2018: Serum free T4 27.8 (ref range 12-22), Serum free triiodothyronine 10.5 (ref range 3.1-6.8), Serum TSH (0.01 (ref range 0.27-4.2).

I have been feeling really unwell for some time, but it's got worse over the last 18 months and I've had nausea/sickness/aching limbs/exhaustion/anxiety/pelvic pain/back pain/sore throat/sinus issues/headaches. My doctor suspects I may have Addison's Disease based to two low cortisol tests. However, my last test came back as in the 'normal' NHS range, but I was on a very high dose of Oestrogen (200mg) at the time, which apparently gives skewed readings.

I've got an urgent endocrinology appointment in mid November but I'm self-employed and I'm unable to work for days on end due to feeling so unwell, which probably isn't helping with my stress levels! Thanks so much in advance.

[pinkjess17]

Your thyroid hormones are pooling in your blood stream because of low cortisol levels, you need a reduction in dose until your adrenals are tested/treated. It’s good your seeing an endocrinologist although mid November seems a long time for an urgent referral!

[Jojozo in reply to pinkjess17]

Thanks so much for replying. Sorry to probably ask the obvious but what does pooling mean? I think an urgent referral in my area (East Sussex) has to be within three months, and they got me in a day under three months!

[Jojozo in reply to Jojozo]

Sorry, I attached the wrong results! (This is what my brain is like at the moment) The ones above are the ones I had done last month.

[Hidden in reply to Jojozo]

Based on your labs posted above, I'd not say you are necessarily over-medicated. Your FT4 levels are well in range (I cannot find any FT3 result though?) The TSH is irrelevant once on any kind of T3 as T3 tends to suppress it, so you need to go by the free Ts and symptoms.

[MaisieGray in reply to Jojozo]

Jojozo This is a useful quote from Paul Robinson regarding the myth of pooling:

I think as soon as someone sees a moderate (mid range) or high (top of range or above) FT3 result and the person doesn't feel like running a marathon or three then they shout "you are likely to be 'pooling'". Well, that is a simplistic analysis and often wrong.

How can anyone tell that someone's T3 is not getting into the cells? Do they have a cell-wall-T3-o-meter? No they don't. They are ...... what is technically called...... guessing.

Anyone who takes T3 or who takes a fair amount of NDT will have decent to high levels of FT3 in the blood. This looks higher depending on the time the blood draw is done.

My FT3 is around 9. With a reference range of 3 - 6 approx. So .... am I 'pooling' ? .... well, some would say so .... but I am not.

No one can tell if pooling happens, or doesn't happen. No one can tell if someone is pooling at all. I am not even sure if it even exists.

What I do know is that people can have good looking FT3 results and still be hypo, because the signs and symptoms say they are. The reasons for some people remaining hypo (with cells that don't metabolise at the right rate due to thyroid hormone that isn't active enough) are MANY.

I listed 20 of these in the second book and numerous in the first (blue book).

Low cortisol can be one. It doesn't cause 'pooling' it just limits ATP generation through low glucose presence in the cells. Low iron, low B12, infections, gut absorption, high immune system activity are a few others. The list goes on.

No one can look at an FT3 result and conclude a damned thing re: 'pooling' or 'not pooling' .... It is a wholly redundant concept as far as I'm concerned. It doesn't help fix anything or determine a suitable treatment.

What is important ..... as always ...... are the signs and symptoms - they tell us whether the person is improving or not. At the end of the day that is the only thing that counts.

Some people need to get their T3 intake to a high level before they begin to feel well. These people (if they ever do an FT3 blood test) might find that they have high FT3. Some people might get well on T4 only, or on NDT, or on low doses of T3, and have FT3 levels in the middle or upper half of the reference range for FT3.

If we believe the idea of 'pooling', then any FT3 that is high might be assumed to be pooling. Clearly that isn't the case.

I just don't think measuring FT3, or any thyroid labs, is helpful when trying to manage T3 only dosing. The doses themselves need to be managed well, signs and symptoms need to be assessed, and other labs may well need to be done, especially if the person doesn't respond to treatment.

The notion or idea of 'pooling' has never helped me once in dealing with anyone using T3. I think it is an unhelpful idea.

[pinkjess17 in reply to Jojozo]

Pooling is when your blood results look good but your still hypothyroid. Your body temperature will confirm it if it’s low. Dr Peatfield was an expert on this, he has a really good book if you haven’t read it.

Without enough cortisol t3 will not get into the cells.

[greygoose in reply to pinkjess17]

Doesn't sound like 'pooling' is quite the right word to describe what you've just said. 'Pooling' would suggest a puddle that gets deeper as you take more of the substance. But, the half-life of T3 in the blood is only 24 hours, so I don't see how it can 'pool' - form a pool. What you are describing there sounds more like thyroid hormone resistance at a cellular level. I think the term 'pooling' is confusing and unhelpful.

[greygoose in reply to pinkjess17]

There's no such thing as 'pooling'.

[pinkjess17 in reply to greygoose]

I was just trying to help. I am entitled to my opinion and I do not believe in thyroid hormone resistance, but agree with Dr Peatfield who confirmed pooling on my blood tests when I first got sick.

[Baobabs in reply to pinkjess17]

Granted I appreciate your intention was to help. Just because you don’t believe in hormone resistance does not mean that this state does not exist. You are of course entitled to your opinion.

[greygoose in reply to pinkjess17]

I didn't know thyroid hormone resistance was a question of belief. So, in your opinion, what causes this 'pooling'?

[NWA6]

With those symptoms I would bring down your medication. I think I’d stop the T3 first and see a) if you can cope with that and b) what difference it makes to your numbers. Will that alone bring down your FT3 score.

If you find after a few days that you are feeling worse then I’d reduce the Levo and reintroduce half of the T3 (still in split doses)

Whatever way you decide to reduce, maintain that dose for 6wks and then retest. Keep going like that until you are less symptomatic and your FT4/3 are more in range (but don’t get hung up on numbers they are only there as a guide, your symptoms are what you have to listen to) And disregard TSH altogether! Useless blood test once you’ve started treatment!

[Jojozo in reply to NWA6]

Sorry, I attached the wrong results! (This is what my brain is like at the moment) The ones above are the ones I had done last month.

[Flitwick in reply to Jojozo]

If you are on T3 it will suppress your TSH anyway so they can't go on that as a guide.

[MaisieGray]

You have hypothyroidism and Hashimoto's, and your thyroid can't suddenly resurrect itself and become over-active! But you can be over-medicated, and with Hashimoto's you can experience a flare whereby after an autoimmune attack the damaged cells release the hormones into the bloodstream and you have a temporary rise in levels. There is no such phenomena as "pooling", unused thyroid hormones are naturally eliminated by the body. However, I'm not clear about your results - you say that the printed results are from last month and that February's results were very different, but the numbers you've typed are the same as the printed ones. Have you duplicated the one set of results?

[Jojozo in reply to MaisieGray]

I have, I posted the wrong ones by mistake, but the correct (latest) ones are now above. Thanks so much for replying:

[Hidden]

I'm sure there will be many different perspectives on this, but a good goal would be to stay in range with your peak T3 level (which would be around 4hrs after a dose). T3 supresses TSH, but how much varies from person to person so it's impossible to know if your TSH shows over treatment or not. Without a current FreeT3 test result I don't see how its possible to know what's going on.

I understand that some people prefer to skip meds for 12 or 24 hours before a blood test, but this does give a skewed result. Whether you choose to do this or not will depend on what you are hoping to get from having a blood test.

[Jojozo in reply to Hidden]

I guess just normal results, but I read on here a while back you should stop your meds for 24 hours beforehand to get a proper reading. Should I take it as normal? I've got another test coming up in a month or so. Thank you.

[Hidden in reply to Jojozo]

If you are not having your freeT3 tested, you won't learn much from a retest. If I were in your position, I would get a test done through Medichecks or Blue Horizon (or similar) which includes TSH, freeT4 & freeT3. You can often get a kit which does all 3 for £29 when they are on offer every few weeks (on a Thursday). Test approx 4 hours after your NDT dose. NDT does not create such as big spike in freeT3 as liothyronine tablets, but this will still enable to see what your absolute peak levels are. If only you have teh test results, there is no risk of opening a can of worms with your Dr, if that is a concern.

There are lots of different views on whether having a suppressed TSH (when having extra T3), as you do is OK or not. My Endo & GP think it's fine, but others do not. It's not a good idea if you have any cardiac issues, but otherwise it really comes down to whether you are comfortable taking any small additional risk having a suppressed TSH may or may not cause.

[Angel_of_the_North in reply to Jojozo]

Stop levo for 24 hours but T3 for only 8-12

[Hidden in reply to Angel_of_the_North]

For what reason do you suggest this?

OP is on NDT which is metabolised differently.

[Angel_of_the_North in reply to Hidden]

It's what's normally recommended to get a more accurate free t3 result. NDT is treated as T3. T3 tends to peak around 2-4 hours after ingestion, and you want to measure the average, not the peak, so testing at 4 hours would probably end up with you undermedicated: "Peak T3 levels of 220–230 ng/dL were reached about 4 hours after the 25-mcg dose and had fallen to baseline by 12 hours. The 50-mcg dose produced peak T3 levels of 350–375 ng/dL, also at about 4 hours, and these had fallen to baseline by 20 hours." ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to Angel_of_the_North]

I guess the crux of it, is whether one wishes to measure the peak serum levels or the average - & I don't see that addressed in this paper (unless I have missed it). I guess there is a logical case to be made for both approaches. Which might be more appropriate for each individual also probably depends on how many doses a day one takes. tiredthyroid.com/when-labs....

[NWA6]

Oh hun 🤗 you poor thing! You really need a FT3 in order for us to comment. February as been and gone so now those results are of no use.

With the Aug result you have posted, your FT4 looks good for someone on combo treatment. As I said before please Disregard TSH result and don’t listen to anyone, not even an Endocrinologist if they question your suppressed TSH level. It is now NOT a good indicator of health because you are on replacement medication and in no way suggests ‘Hyperthyroidism’

FT3 and FT4 results are the only way to gauge if you are taking too much or too little medication (along with your own personal symptoms)

Brace yourself for a crappy appointment with the endo in Nov!! They usually have very little understanding of our condition.

[Jojozo in reply to NWA6]

I have to say, I’m not expecting much at the appointment 😂 I’ll ask my doctor to do FT3 next time I have a blood test and will post my results then. Thank you!

[Angel_of_the_North in reply to Jojozo]

The NHS generally won't test free t3 even if the doctor requests - the labs refuse to do it

[Angel_of_the_North]

You need a free T3 result to know what's going on. Your free T4 is barely mid range so no way are you overactive. I suspect you now have low free T3. Taking oestrogen - especially an incredibly high amount like that - will adversely affect thyroid hormone conversion and uptake. Why on earth such a high amount?

[Jojozo in reply to Angel_of_the_North]

A private specialist put me on it in May to see if it helped my symptoms because my oestrogen level was really low. She thought it could be down to me being peri-menopausal (I’m 45), but sadly it didn’t help and I’ve just lowered the dose to 100mg. I’m also due to start progesterone soon as well, as my GP is very concerned about me being on the oestrogen on its own (although that definitely isn’t the cause of my symptoms. The sickness, etc, has been going on for well over a year).

I’m just confused about my thyroid medication dosage. I’ve spent all day on the sofa feeling achey, sick and miserable today, and I can’t go on like this. I’m worried if I stop the T3 I could feel even worse, but I’ve had so much conflicting advice from medical professionals.

I’ve spent all my savings trying to get to the bottom of it and I’m still no better off. I can’t afford to go and see anyone else so I feel a bit stuck and not sure what to do for the best 😬🤷🏼‍♀️

[Angel_of_the_North in reply to Jojozo]

My oestrogen levels were non existent with vaginal atrophy, but all I needed was 10mg pessaries for 4 weeks followed by 2mg a day thereafter, so I can't see how 200mg could be justified or safe

[humanbean]

I don't believe in pooling either, so I'll second what MaisieGray says and what she quotes from Paul Robinson.

If you are hypothyroid then you can't become hyperthyroid. However you can be over-medicated, and the results you have don't suggest over-medication - TSH is (mostly) irrelevant in a treated hypo patient (unless it's high) and your Free T4 is below mid-range.

You can also go through a "hyper" phase with Hashi's, and that looks like what was happening to you in Feb 2018, assuming you had previously been on the same dose and had no problems. On that occasion it would have been best to stop taking your thyroid meds just for a few days to allow the high thyroid hormone levels to reduce. When you get the first tiny hint of being hypo then restart the Levo and T3 at the same levels as before.

What you really need to determine over-medication is a Free T3 result which tells you how much of the active thyroid hormone you have, which of course the NHS doesn't usually test. If you wanted to do a private test you could do one of the following tests :

medichecks.com/thyroid-func...

medichecks.com/thyroid-func...

medichecks.com/thyroid-func...

Don't forget you can get 10% off any test which is not already on special offer. See the first image on this page :

thyroiduk.org/tuk/testing/p...

If you want to try things out for yourself without spending any money and without involving your doctor then you have to start experimenting. You could reduce your Levo yourself to, say, 112.5mcg per day. Leave your T3 dose as it is. If you start feeling better then continue. If you feel worse then go back to your previous dose. Once you've settled down to feeling the same as before (which could take a few weeks), you might want to experiment with reducing your T3 (don't stop it altogether, that would be far too big a change all at once). But all changes that you experiment with should be small.

However, be careful - if you start messing about with your dose it can make interpretation of test results impossible and you end up in a muddle. So keep records of when and how you change dose, what symptoms made you try the change, and score the symptoms on a scale of 0 to 10, zero meaning you don't have a symptom at all and 10 meaning it is excruciating.

For lists of common symptoms :

Short list : thyroiduk.org.uk/tuk/about_...

Long list : hypothyroidmom.com/300-hypo...