New GP agreed to trial extra 25 mcg of T4 - advice urgently needed please (heart palpitations, sweating but good digestion?)

[Hanna_josef]

Hello everyone, I hope you're all in good health. Thank you all so much for your advice, guidance and help so far it is so heartfelt!

Following on from my previous post, I spoke with my GP on the 4th of March, and she (not my regular GP) advised that she would consider increasing my levothyroxine only after a retest. I asked what she hoped to deduce from a retest that she couldn't already from my private results, and she said that 'finger-prick tests aren't reliable'.

Just to recap

25th of February private medichecks test results -

TSH : 1.1 mIU/L (0.27-4.2)

FT3: 4.45 pmol/L (3.1-6.8)

FT4: 18.6 pmol/L (12-22)

Blood test that my GP ordered - had it in the morning of the 9th of march (08.20 AM) fasted state and no T4 prior to test. Here are the results -

TSH: 0.77 mIU/L (0.27-4.2)

FT3: lab did not test this

FT4: 21.8 pmol/L (12-22)

I spoke with my GP (regular GP) on the 10th of March and he refused to increase the dose, because my results were within 'normal range'. When I tried to lay it on him a bit thick he said 'it is up to me to decide whether to increase or not increase your dose. If you are not satisfied then you are welcome to change to another practise' so that is exactly what I done.

Registered with another practise and had an appointment with my new GP today who agreed to trial me on 150 mcg for 6 weeks on the condition that if he retests me in 6 weeks and my levels are out of range, he'll reduce it back down to 125 mcg. He prescribed 28 additional 25 mcg tablets today which I have now collected from the pharmacy.

I have actually been taking 2 x 25 mcg + 100 mcg (total of 150 mcg) since the 10th of March, just to see how I'd feel......and actually I think I feel better! The only negatives that I've noticed is that I experience some heart palpitations at bedtime and have had some sweating, but my digestion has been better! I did not share this with the GP....do the palpitations go away after a while? Has anyone experienced the increased sweating following an increase and, did this subside?

Question to you: I fear that if I continue with 150 mcg now and he retests my bloods in 6 weeks and sees my TSH *possibly* out of range (low) he will revert back to 125 mcg. Should I remain on 125 mcg until he retests so that he gets a normal result, wait for him to increase my dose to 150 mcg on the repeat prescription list, then commence with 150 mcg again? Or should I continue with 150 mcg and skip a few doses leading up to the test in 6 weeks? Is there a possibility that this would backfire and show a much higher TSH reading? I don't want to blow my cover.

My idea is to see whether 150 mcg of T4 improves my hypothyroid symptoms a great deal or not, if my conversion improves etc and if not I will consult with an endocrinologist privately whom I have been recommended by a number of you to see if the addition of T3 would benefit. NDT is sadly not something I can consider since I'm jewish....

Any advice would be greatly appreciated - and as always thank you for your valuable time.

[greygoose]

So, what were you taking when you got the TSH of 0.77? 150 mcg? If so, then it probably won't go lower in the next six weeks - might even rise a little. But, you cannot predict what the TSH is going to do.

Should I remain on 125 mcg until he retests so that he gets a normal result

What sort of TSH result did you get on 125 mcg?

Or should I continue with 150 mcg and skip a few doses leading up to the test in 6 weeks?

Doubtful that would have any effect on the TSH. It's not that sensitive, and is very slow to react.

The whole problem here is that these doctors, who think they know everything, believe that the TSH tells them 'everything they need to know'. Whereas, in reality, once it goes below 1 it doesn't tell them very much at all. The lower it gets, the less it tells them. And, relying solely on the TSH implies that all pituitaries work perfectly, which is not the case. If they really knew anything about thyroid they would see that you are a poor converter, and the important number is the FT3. And yours is on the low-side. Whereas, your FT4, at 21.8, is too high and is possibly negatively affecting your conversion, so what you actually need is a slight reduction, not an increase. And, of course, what you really need is the addition of T3 to a reduced dose of levo. But, the day a GP recognises that, I'll eat my hat!

[Hanna_josef in reply to greygoose]

Hi grey goose! My results from the 9th of March were from when I was on 125 mcg only. My results in the past on 125 mcg have ALWAYS fluctuated - for instance my TSH has gone from 0.1 to as high as 2.6, my FT4 from 14 - 26 and my t3 3.9 - 4.6 (results from past test results on 125 mcg) with no changes in my dose. I started taking 150 mcg the day after my test - on the 10th of March and my test was on the 9th of March, so I don’t know how much lower TSH could go because I haven’t tried and tested at 150 mcg before!

I know most GP’s are utterly clueless about the thyroid - and I’m definitely keen on consulting with a private endocrinologist who many here have recommended. I too think I may need an addition of t3 but I felt it was worth a shot to increase t4 before making that move.

What should I do? I could remain on 150 mcg and retest my bloods privately before 6 weeks but would it have built up for long enough by the end of say week 5 in my system to reflect accurately in the test? And if I were to reduce it to 125 mcg a week before my GP retests, what are the odds that my TSH will score normal?

[greygoose in reply to Hanna_josef]

With such huge fluctuations in levels, it sounds as if you have Hashi's. Do you know if you have Hashi's?

I too think I may need an addition of t3 but I felt it was worth a shot to increase t4 before making that move.

Not, really not, because the level of your FT4 means that more of it is converting to rT3 rather than T3. This is a safety measure the body has in place to stop you 'going hyper'. So, more T4 doesn't automatically mean more T3. The safety mechanism doesn't take into account how well you convert!

I could remain on 150 mcg and retest my bloods privately before 6 weeks but would it have built up for long enough by the end of say week 5 in my system to reflect accurately in the test?

Impossible to tell. But, more than likely that eventually 150 mcg levo will suppress your TSH. But, even if you see it suppressed at 5 weeks, it wouldn't have time to rise again before your doctor tests you. You just cannot manipulate the TSH. But, if he does reduce you back to 125 mcg, I think that would probably be a good thing, because such a high FT4 is not good.

If it were me, and I had the possibility to see a private endo that would give me T3, I would have gone straight for it, and not messed about with trying an increase in levo.

[Hanna_josef in reply to greygoose]

Yes, I do have hashimotos! Antibodies were very high when I tested them in the past. God, now I’m really confused. Basically I thought that maybe the endo would recommend an increase in T4, so why not exhaust that option BEFORE consulting with him to make the most of my consultation. Is there a way to test reverse t3? Could an accumulation of t4 bring about any harm, besides not properly converting into t3?

I think I may just consult with the endocrinologist then and see what his thoughts are - he may not recommend an increase in T4 either and just commence with the addition of T3. Let’s see…..

[greygoose in reply to Hanna_josef]

Yes, there is a way to test rT3, but there's no point in doing it. Your rT3 is going to be high given the level of your FT4. But, it's not the rT3 the problem, it's the low FT3. And, adding another 25 mcg levo is unlikely to raise your FT3 sufficiently to get rid of your symptoms.

As to whether or not long-term high levels of T4 could do any harm, we're not 100% certain, but it's beginning to look like it could. Have a look at jimh111 's last two posts:

healthunlocked.com/user/jim...

I think it would be a good idea to go directly for a prescription for T3, if you can.

[tattybogle in reply to greygoose]

GG Hanna_josef .. i made a suggestion on the previous post to try a slight increase levo as first step before the hassle of getting hold of T3 .... but that suggestion was based on results of 18.6 [12-22] and TSH was over 1 .... Now there is a new result of 21.8 [12-22] ,... i'm not so sure i'd have suggested the same thing... but i do still agree with your logic hanna_josef ... i still think it makes sense to try a levo increase by yourself rather than pay an endo to try it .

[greygoose in reply to tattybogle]

That's what I was basing my reply on, the FT4 of 21.8. But even at 18.6 it's doubtful it was a good idea to increase. It was unlikely to increase the FT3 significantly.

Obviously, it makes sense to try an increase by yourself rather than pay an endo, but perhaps not with those levels. I thought the idea of the private endo was to get T3, anyway.

[Hidden in reply to tattybogle]

I am a bit surprised to see this advice as you recently sided with Jim re the dangers of high FT4 levels…

[tattybogle in reply to Hidden]

I do not see it as an issue of taking sides . It is just 'useful information'.

I did suggest trying a levo increase first, yes (albeit based on rather lower T4 levels than we see in this latest medicheck test), because it's the quickest simplest thing to try , and it is what i would try first if i was in Hanna_josef's position.

Just because i think a course of action might theoretically increase my risk profile by a small amount for something that might never happen to me , that doesn't mean i wouldn't at least try it to see how it worked.

Trying to source a combo T4/T3 trial will definitely increase the risk profile for "having a life full of dealing with arrogant endos" .. there are benefits to avoiding that too, if it can be done.

So my suggestion was pragmatic.

Hanna_josef , purplecat is referring to these two recent posts looking into bits of research that suggest natural fT4 levels seem to relate to some but not all cancers, ad possibly some cardiac risks and length of lifespan. This is for T4 that comes from the thyroid, but it's a reasonable assumption that the findings will also apply to T4 levels that come from Levo

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[Hanna_josef in reply to tattybogle]

Thank you @tattybogle I think your suggestion was perfectly reasonable - no harm in trying then assessing if something works ok/poses any small risk etc. I too would prefer to remain on T4 if I can yield enough benefit from it, but most people don’t feel good until their t3 is in the upper end of the range it seems so I don’t think I’ll be the anomaly…….

[Hanna_josef in reply to greygoose]

Thank you grey goose! This is what I’m thinking of doing - remain on 125 mcg until my doctor orders a retest, retest returns back ‘normal’ GP will bump it up to 150 mcg on the repeat. I’ll then begin taking 137.5 mcg for 3 weeks then increase to 150 mcg for the remaining 5 weeks. I’ll do a private test, see what my levels are then and then consult with an endo. The 150 mcg may not be the fix - but it’s probably worth a try before reaching out to the endo in the event that he proposes an increase in T4 before commencing with adjunctive therapy (addition of t3)

[greygoose in reply to Hanna_josef]

If he gives you T3, he will reduce the T4, not increase it.

[Hanna_josef in reply to greygoose]

No what I meant is, if I consulted with him while on 125 mcg he may have proposed an increase in T4 before trialling t3!

[greygoose in reply to Hanna_josef]

OK, well, depends how much he knows about it all.

[Imaaan]

On your last post a few of us mentioned trying an increase of 12.5 which would have given you 137 mcg , you can try that if you're having palpitations with 150.

If the 137 gives you palpitations/tachycardia, another suggestion is to try adding 12.5 on alternative days. I've done that before.

[Hanna_josef in reply to Imaaan]

Hi Imaaan . You did indeed - did the addition of 12.5 mcg cause a remarkable change in your TSH, T4 or T3 levels? I may split the pill in half if it is unlikely to show a suppressed TSH reading when my GP orders a retest in 6 weeks….then increase to full 25 mcg thereafter and order a private test…does this seem sound? I’m just worried about the TSH because that’s literally all our GP’s concern themselves with!

[Imaaan in reply to Hanna_josef]

I cant really comment about suppressed TSH, others that are more knowledgeable can tackle it.

As for 12.5 making a difference in my labs, for me it has but its usually a few points. My system is sensetive and even an increase in 6.25 Synthroid or reduction daily has made a difference in my labs in the past. The changes are usually reflected in my free t4 by a few points up or down. Whenever I start getting an increase in my palpitations/tachycardia on a new dose I drop down by 12.5 mcg or I take it on alternative days to help reduce my symptoms and that works for me. If the symptoms persist more than 5- 7days I reduce further

The issue with experiencing palpitations/racing heart/sweating on a new dose could be a possible of things:

A) cortisol issues

B) nutritional deficiencie ie. ....iron, b12 etc

C) An adjustment phase of a new dose and it may resolve in a few days.

D) Simply could be too much. For example I cant take 88mcg more than 3 days or I get excruciating chest pain along with tachycardia/palpitations and it puts my free t4 over the range.

[Imaaan in reply to Hanna_josef]

Want to let you know that I I missed your latest free t4 results ordered by your doctor. You're literally almost at very top of the range. If I were there I wouldn't increase my t4 at all and would probably go to combo treatment.

[Hanna_josef in reply to Imaaan]

Really? But my Ft4 levels have always fluctuated between 14-26

[Imaaan in reply to Hanna_josef]

When the cut off was 22?

[tattybogle]

Some things to consider ;

1) what happened to trying 137.5mcg first ? just cos the previous GP can't work out how out prescribe it( ! ).. that doesn't mean it's not a good idea to increase your dose in gradual stages to try and avoid missing your sweet spot ... especially since your GP's recent retest of fT4 shows your fT4 closer to the top of the range than that previous medichecks one did .

2)I think you need longer than 6 weeks to see if 137.5 is an improvement in symptoms .

3) You must decide if you want an honest relationship with this new GP or not .

You could choose to let them know you actually tried a lower increase first (as you originally asked the previous GP for ) because you thought it was more sensible and this shows them you don't just want to recklessly increase levo dose for the sake of it.. but say that you would also like a more reasonable period of time to allow the dose to settle and see effect on symptoms and bloods. (3-6 months is more reasonable in my opinion)

As for 'blowing your cover', .... Don't forget they will know why you left the previous practice .. and trying to fiddle thyroid blood results is like playing russian roulette ... you really have no idea what numbers will come out.

New patients insisting on more Levo than they are comfortable prescribing will make any GP pay rather more attention to your blood tests than you want them to .. so if you go giving them weirdly inexplicable TFT's at this point .... they may never believe you are being honest again.

It's one thing for an 'otherwise forgettable' patient to talk their way out of an unexpectedly weird blood test result ... GP's get unexpectedly weird thyroid blood tests all the time .. and it doesn't usually make them think anything much at all .... but 'new patient moving surgeries to get more Levo' ?..... be under no illusions here .. your cover is 'already blown'.

Did this new GP already see those latest NHS blood results when he agreed to prescribe 150mcg ?

once he has seen the fT4 21.8 /TSH 0.7 ... he will be expecting fT4 to come back over range after 6 weeks on 150mcg .

~ You could take 137.5 and be honest. (and come across as careful/safe/ reasonable).

~ You could take 125 mcg for 6 weeks (and keep shtum) in order keep the 150mcg prescription ( safe option and and hopefully you will be ignored for a year while you experiment with an increase for yourself.)

But ~ 'continuing on 150mcg then dropping a few doses before the test' is not really an option because it will not solve the TSH problem .. fT4 and fT3 tests show 'today', but the TSH test is 'a window into the recent past'

TSH is difficult to fool ... and TSH is unfortunately what most of them are most interested in. If you try this option and it gives them a low TSH from 150mcg coupled with a low fT4 from a few missing doses .. you will immediately raise a big red flag~ and they'll go and look up the page marked 'funny thyroid tests / ?patient compliance'

[Hanna_josef in reply to tattybogle]

You’re right - I’ll remain on 125 mcg until he retests my levels, then I’ll commence with 137.5 mcg for 3 weeks followed by 5 weeks on 150 mcg. I’ll do a private test thereafter and post my results - then consult with the endo. That way I’ve covered my bases!

[tattybogle in reply to Hanna_josef]

OK ... but why the assumption that 150 would be better than 137.5 ? 3 weeks isn't long enough to tell you anything about 137.5

If you're going to try 'more levo' before trying 'T3' it makes sense to try it carefully and for long enough.. otherwise it's a wasted experiment that takes 8 weeks and tells you 'not much'.

p.s none of this is intended to sound short/cross/shouty .. i'm just typing one handed due to fending off a stupid bouncy dog that has come to visit.

[Hanna_josef in reply to tattybogle]

I wasn’t intending on settling on 137.5 mcg, because my GP said they don’t prescribe 12.5 mcg tablets, and also because of my weight (88-89 kg’s) which means I should be on roughly 140 mcg, in which case id rather round up if it’ll mean avoiding cutting pills for the long haul. Realistically speaking if I were to increase to 150 mcg how long would I need to remain on that dose before yielding an adequate result? I.e an improvement in symptoms/accurate test results? I was hoping to get the trial over with within 12 weeks at the most, 3-6 months seems like so long what are your thoughts?

No, please I welcome your feedback/critique! No need to sugarcoat anything!

[tattybogle in reply to Hanna_josef]

In my experience the 'dose by weight guide' is about as accurate as guessing somebody's waist measurement by using their height as a guide. It is a useful 'tool' .......if they have literally no idea of your likely dose after a thyroidectomy .... or for us to use if an increase is needed and the GP is dragging their feet ...., but it's nothing more than that .... i've seen people on here feel best on WAY more , and other people feel best on way LESS than 1.6/kg .

My weight hasn't changed much in over 20 yrs , and 1.6/kg would suggest my does should be about 95/100mcg, but for over a decade i was on 150mcg and then 125mcg and now 112.5mcg .. all while my weight hasn't really changed at all .

The Americans think it's worth making all sorts of tablets in very small doses , for very fine adjustment .. and even UK manufacturers DO make a 12.5mcg tablet (and then charge £13 a packet .. which is why nobody buys it ... a packet of 25mcgs costs about £1 !) ..... if there was no demand for very fine adjustments, these sizes wouldn't be made.

... Small , patiently observed, fine dose adjustments now, will probably save you years of getting lost and having to start all over again the long run.

eg Consider this .. if it turned out that T3 isn't the obvious improvement you hope it will be .. some people do go 'yay, i feel loads better, i'm on the right path' .. but some trying T3 will be entering a several year long search wondering "is T3 really helping or do i actually feel worse than when i was just on Levo".... and THEN they wonder if they had adjusted their levo more carefully they might have been better with that.,, leaving them unsure whether to continue fine tuning T3 , or pack it in and go back to the beginning ... that scenario is going to feel much more frustrating than trying something methodically for 4/5 months now will feel.

"Try something properly, rule it out, then move on".. is a much more efficient method than bouncing around with 'too big' adjustments and slightly overshooting or undershooting the target each time., then getting p**d off and changing your choice of weapon... i watch impatient people do that on here all the time. and i used to be the same myself because i just didn't understand how slow thyroid hormone processes and re-balancing are . We don't just go hypo overnight ... it's a slow and imperceptible decline with seemingly unconnected symptoms thrown in for good measure .. and its the same when trying to feel your way back to the right replacement dose for your body... it's going to take time, and there's no way round that.

Blood tests ought ought to be 'valid' after 6 week on consistent dose , but .. it's not all about blood tests.. if the new dose alters how you feel , and so your activity levels then change .. then blood tests may be a bit different a month later, once it's really settled in. (or if you're like me, your fT4 could just go wandering around on it's own for no apparent reason anyway .lol )

From my own experiences with changing my Levo doses over the years, i've now come up with these rules (for me):

~ don't change by more than 12.5mcg at a time.

~ make a note of but otherwise 'ignore' changes in symptoms for the first 5 weeks , all sorts of rebalancing /compensation will be happening, leading to 'all sorts of weird ness' in how i feel .

~ build a picture of how it 'really' feels from week 5/6 onwards preferably for at least 3 months in total,

~ if it's really obviously terrible and much worse at week 6 week then test bloods at that point and consider changing dose.

~ if it's a bit more like 'not really sure if that's an improvement or not' then leave it another month or two to see if gradual improvements in symptoms occur .

Hope some of that help you see where i'm coming from.

x

[Hanna_josef in reply to tattybogle]

Your advice is so sound, thank you so much! I’ve noted your tips down on paper for consideration. After an initial increase of 12.5 mcg, (and your symptoms are somewhat improved) would you test your levels then? Or would you decide to increase by another 12.5 mcg, or maybe even remain stationary at the initial 12.5 mcg increase?

Thank you for your input once again, it’s most appreciated! X

[tattybogle in reply to Hanna_josef]

if i feel an improvement, at eg. 6 weeks.. then that tells me 'something' has moved in the right direction ... so i assume that if i leave things alone my body will continue to build on that improvement . (bodies like stability, Homeostasis)So i wouldn't be in a hurry to do a blood test at that point, ... eg .i might feel more able to go shopping and be cooking better foods which in itself will gradually improve other things ... i might feel more like walking a bit faster, or further, or more often .. which in itself will improve other things ... These 'other things' might improve my sleep pattern ... that in itself will improve a bunch of other things... after a few months of this sort of stability if eg. weight was a problem , it might start to slowly come off. (but i can't vouch for that one cos my weight was never one of my problems)

Somebody here once likened adjusting thyroid hormone dose to steering a massive oil tanker ..... think 'titanic /iceberg' ... it takes time to see the effect of the change you made at the wheelhouse on the direction of the ship... if you think "shit it's not turning enough" and turn the wheel some more , the ship won't change course any faster ,it can't ... but when it does get there you'll find you've turned round too far and are now pointing back to Ireland .

The best way to bugger up a perfectly good but subtle improvement noticed on 12.5mcg is to think , "oh good result , i'll do that again straight away" ....That's not what your body would do .. it would go "oh good ,that feels a bit better so i'll return my settings to 'at ease' and let everything settle down"

[Hanna_josef in reply to tattybogle]

You’re totally right! Thank you for the analogies they put things into perspective perfectly, and really help engage my foggy brain!

[rick2525 in reply to Hanna_josef]

Hi. Hanna_josef I have been reading your messages on here with interest simply because your dosage of T4 and test results are mirror image of where mine are. I think tattybogle is spot on with her advice. The only comment I can add is that I am on 125mg of levo and have been for 6 months. I tried with GPs permission to try 150mg to alleviate symptoms I was experiencing. It just did not work! I felt worse! I also think this is where the rt3 kicks in. So maybe try the tweak with additional 12.5mg levo. If it works stick on it, why spoil a good thing. You dont mention... unless I missed it vitamin D and B12 supplements which are also advisable to aid absorption. My GP says she wont/cant supply T3 and neither would our endos in our CC G . So I am trying to source an endo either privately or NHS that will.

[Hanna_josef in reply to rick2525]

You’re right rick2525 titrating slowly is best as with any other medication. How do you plan on dealing with your GP once they see your TSH suppressed, if you end up going on combination therapy that is?

[Roadrunnergreg in reply to Hanna_josef]

Hiya I don't think the levothyroxine is the problem for the fatigue and heart palpitations, this could simply be an iron deficiency caused by the levothyroxine or high cortisol and an/or an imbalance of three nutrients Iron-Copper-Zinc

The Hashimoto’s do you have gut issues with an overgrowth of candida that may have gone systemic, or even a viral infection. I mention this because it's very possible the infection is in the thyroid Gland and can cause fluctuations in levels too ie yoyoing. Another thing to consider if you do have an infection, if you resolve that your thyroid problem could quite easily resolve itself...

Hope that helps

[Hanna_josef in reply to Roadrunnergreg]

Hi Roadrunnergreg I have been taking a zinc and copper supplement for years! It could be my iron - I need to request a full panel. Basically what I think triggered my hashimotos was either 1. The week that I was juicing on milk shakes only, (a LOT of milkshake for circa one week) or my pregnancy (they occurred around the same time so difficult to decipher) My symptoms remained despite a pregnancy termination but when my GP at the time ordered a thyroid test it returned back VERY high, I recall him saying my TSH was upwards of 100, and when I received treatment (levothyroxine) I immediately felt better for a while. How do I know if I have an overgrowth of Candida, viral infection or other? I have heard this often that the underlying issues of some thyroid issues are that of an infection…but how does one test for that? Really appreciate your input!

[Roadrunnergreg in reply to Hanna_josef]

In the case of bacterial overgrowth candida can often be caused by poor diet, antibiotics, that kill the healthy bacteria also other gut issues that like low stomach acid etc. The tests best to see the doctor to run the tests, thrush is also candida etc to give you a clue.

Viral infections if memory serves me right is basically high antibodies like Igg etc but needs testing for but not sure how reliable the tests are for viruses as most are never detected to exist in isolated form.

Things like a really good diet and some supplementation can reverse the the infection/s AKA give the body the resources it needs to repair itself... a low glycemic plant based diet is a good place to start with most illnesses...

An idea is to do some research self education on them

Hope this helps

[paradime]

A lot of us find that TSH is suppressed well below reference range levels when on thyroid hormone replacement of anything like an adequate amount, but most doctors don't know this.

If you are a poor converter of T4 to T3 you are likely to need T3 as well as T4 as tablets.

UK tablet doses are way too large to allow fine adjustment(titration) of daily dosage. This is even more pronounced for women, who are typically much lighter than men. However, since the half-life of levo in the body is 7-8 days you don't need to cut tablets. Taking 125/150mcg on alternate days , equates to a daily dose of 137.5mcg . For finer adjustment, I have heard of people who take one amount on 4 days a week and a different amount on the intervening 3 days, or do something different at weekends from weekdays.

Cutting tablets is so much easier with a pill cutter bought from a pharmacy. However, the real pain is, of course, how one stores the leftover pieces, (pillbox?).

[Hanna_josef in reply to paradime]

Hi paradime so you see how you mention that TSH is suppressed for most who are on an adequate amount of thyroxine, how do doctors not know this? Is there a secret to manipulating it on the test when the doctor requests it or does one simply not test with their GP to avoid them finding out? I thought it was common practise for the GP to order one test a year at the very least when you’re on a repeat medication for regular monitoring. Really keen to hear if there’s a way around them knowing….Oh my how did it not cross my mind to just alternate! You are totally right, 125 mcg/150 mcg on alternate days does level out to be 137.5 mcg. This would be much more hassle-free than cutting and sorting pills. It is a real pain in the rear-side! 😆

[tattybogle in reply to Hanna_josef]

Re. the annual testing from GP's . yes they do need to do annual tests for repeat prescription of levo. sometimes you may get away with a year and a half or even 2 yrs without being 'leant on' to come for testing, but sooner or later they will get to a point where they don't feel able to sign the repeat prescription without seeing a new blood test. There isn't really a way to manipulate TSH results, without altering dose significantly for quite a long time ... because TSH can take a long time to react. (hence the 6 week wait for a blood test after any change in dose).

So to change TSH you do have to be on the slightly different dose for a few weeks., or make yourself very unwell by severely lowering dose for many days.. and if you do that it's like russian roulette .. you have basically no idea wheat the resulting TSH would be .. i did 10 day's 'off' once for an experiment before a blood test and TSH came back as 7 ! when it was usually 0.04.. oops .. and of course i basically needed two weeks off work cos i felt not very safe to drive or use big sharp things, and it took another week or so to feel normal again.. so manipulating TSH tests is not a very realistic option.. and is very likely to raise red flags with your GP.

Also more importantly ....it's a very uncool thing to do to your poor old HPT axis .. which "likes stability ,thank you very much!" .. and it might well turn round and bite you in the ass if you mess about with it's settings so drastically.. ....if you feel well on a dose , don't mess with it .. thing's don't always go back to where they were before you fiddled about with it.

fT4 can easily be affected by eg. time of last dose , or missing a dose before test , but the TSH won't usually respond much , if at all in that time , especially if it's very low.

Some GP's will allow a 'low but not supressed TSH' as long as fT4 is in range and you feel better like that.. it might take a bit of negotiation, and they might insist you to at least give a lower dose try , but eg mine had been 0.04/5 ish for over a decade without my GP's having a problem with it .

(it did help that for the first few years the TSH range in my NHS lab was [0.02-6] ... but even when they later changed the testing machine to one with a range of [0.34-5.6] and then [0.57-3.6] , they still didn't pressurise me to lower dose .( i had previously tried and it felt yuck, so they put it back up)

To a large extent it depends on the GP's attitude. and whether they can be confident that you 'understand the risks ' (as they see them) and that you know how to recognise overmedication symptoms , so they can cover their backs.. which is fair enough.. they are responsible for what they prescribe , and they could get into trouble for 'overmedicating' patients.

Alternate dosing is fine ... decide on your total weekly dose in mcg and divide it up through the week as best you can.

As long as you find a way to avoid getting confused about what day it is. Eg every Tues /Thurs / Sat you take 'x'. (or get a pill box ~ yes i know .. not sexy)

It does make sense to try and keep the daily variations as small as is reasonably possible given what size of tablets you have available .. for example:

.....if someone was wanting to do a small reduction from 100mcg a day ,but they only had 100mcg tablets:

700mcg week=7 days x 100mcg = 100mcg /day ..... removing one tablet a week gives:

600mcg week = 600 divided by 7 = gives effective dose of 85.7mcg/day.... but i would not choose 6 days of 100mcg and one day of 0, because we might well feel pretty odd on the 0 day, and we're aiming for stability.... so if we only had 100mcg tablets and wanted to try a slight reduction to 85 ish, i'd half a tablet to get 5 days/100mcg and 2 days/ 50mcg, (and i wouldn't put the 50mcg days next to each other)

But alternating dose by 25mcg 's each day is very common.. lots of GP's prescribe this way (the smart ones who can do maths!) .. the rest tell their patients that they can't have such a small adjustment 'because nobody makes that size tablets' and they bounce their poor patients around between 100mcg and 75mcg doses every other year because the TSH is too high one year and too low the next ...when ,if they worked out a dose 'inbetween' they might find stability and their patient might feel better.

[paradime in reply to Hanna_josef]

When I wrote doctors do not know this. I meant that doctors do not know that low TSH is very likely on replacement. Not that doctors do not know our TSH levels.

Furthermore, they will also try to tell you that low TSH is dangerous, leading to heart rhythm problems and osteoporosis. Well, palpitations are not good, but I sometimes have them as a result of being hypo, not hyper. I agree that they are more usually associated with being hyperthyroid.

As for the osteoporosis, I am still trying to get them to produce any scientific evidence of this, we think it is a false assumption of a causal correlation. Many postmenopausal women have thyroid problems. Many postmenopausal women have osteoporosis. This does not mean being hyperthyroid causes osteoporosis. I have no proof that there is not a causal connection, but I am sceptical. So far as I can tell, there is no evidence of a causal connection.

[paradime]

Doctors seem to believe that TSH is an accurate measure of thyroid function. It is not. Nor is T4, thyroxine as this is an inert, storage form of thyroid hormone which must be converted to T3, thyronine before it becomes active. Therefore, one must measure active thyroid hormone to get the level of active thyroid hormone, T3. This the NHS largely refuses to do as they are penny-pinching idiots. Or to be fair, this method may work for the majority of hypothyroid sufferers who are not poor converters. To measure T3 is vital for poor converters

Secondly, the reference ranges for TSH are set way too wide, or at least too high on the high end. Then when a patient exceeds this overly high level, doctors say we won't treat until it gets twice that high. Remember, reference ranges represent 95% of the population of people who are not known to be diseased. Two problems here, one, what is normal for one person is not necessarily normal for another. Secondly, if a person's symptoms are not recognised as being due to hypothyroidism, their results can be included in a population sample of "well" people.

I would seriously counsel against trying to deceive your GP about your TSH. Try at first to educate them that TSH will likely be suppressed in someone on replacement. (This is unlikely to work as most GPs are as arrogant as they are ignorant). Then you will need a referral to an NHS or private endocrinologist who believes in combination therapy. These are in the minority because of the commercial scam to massively overcharge for liothyronine(syntheticT3) in the UK. Also, many doctors believe levo does the job perfectly well on its own, which it may do for most hypothyroid sufferers, but not for us poor converters.

[Hanna_josef in reply to paradime]

Hi paradime suppose I remain on 125 mcg and obtain t3 privately, wouldn’t the GP decrease my t4 dose if he felt my TSH was suppressed? Would this mean that I would have to obtain both t4 and t3 from the endo? Is there no way to continue getting t4 on the NHS, whilst taking t3 via the private route? Would it perhaps help if the private endo was to write to my GP and explain the science behind the TSH and t4 levels appearing low when on combination therapy?

[paradime in reply to Hanna_josef]

I really don't know how the boundaries between private and NHS work as I cannot afford private. You are better off at least trying to find a combination therapy friendly endo in your area under NHS, first. Try contacting Thyroid UK admin office for the list of endos.

If you can afford to go private, it might be quicker, but remember this is potentially lifelong treatment if it works for you, so that could be an expensive decision.

If you can afford the consultation fees and private prescriptions for lio plus the cost of the lio, any levo that you need to pay for privately is possibly insignificant in comparison. I do not know whether one can get different aspects of hypothyroidism treated privately and NHS at the same time. Perhaps others on here will know.

I am under an endo working NHS and she tells my NHS GP how much levo to prescribe. If this were the same for you, it would be the endo who would need to know about TSH suppression. It is by no means certain that they would as a lot of endos are diabetes specialists who appear to know less than nothing about treating hypothyroidism.

Your T4 level is high in range on 150mcg, even at 18.6 on 125mcg it may well have been more than high enough. (Admittedly, some people do not feel well until even higher in range or somewhat above range for T4 - but that is probably irrelevant at the moment). It seem more likely that your persisting symptoms are due to being a poor converter and therefore having a less than optimal T3 level. Any endo will probably want to reduce levo a little at the same time as, introducing lio. since even poor converters are converting some, if not enough, T4 to T3.

Oddly, T3 is said to be equivalent to about 4 times its weight in T4, but taking lio is said to reduce absorption of levo. I am sure that I don't really understand this yet, maybe others on here may shed some light.

Have you had ferritin, folate, vits D and B12 checked and optimised as they are said to be often low in Hashi's sufferers?

[Hanna_josef in reply to paradime]

Hi paradime I’ve recently tested my vitamin levels, and my vitamin d, folate and b12 are very good, but my ferritin is piss poor. I have recently started eating liver weekly, and the taste is starting to grow on me. But I haven’t had a full iron panel done - can one have low ferritin but optimal iron levels? I get so confused about the difference between ferritin and iron I’m going to do some research this weekend…

[paradime in reply to Hanna_josef]

Taste of liver is great, in my opinion, but possibly something of an acquired taste.

I am not very sure about the ferritin/iron thing. I think ferritin is said to be stored iron, bonded to other stuff, rather than freely available iron. To add to the confusion, people mention "a full iron panel" as if there might be more than just the two measures of all iron in blood.

Seems I need to do the same research.

[Lovecake in reply to Hanna_josef]

Many of us get T3 from a private endo. We pay for the consultations and the T3. Our GP will still prescribe the T4 (levo). My GP (probably the same as others) likes to receive a letter from my private endo occasionally. He is the one who initiates what doses I’m on - with consultation with me - I’m quite lucky at the moment, my GP is very good at listening to me (and I do rabbit) and we have phone consultations as and when needed.

Good luck.

[Hanna_josef in reply to Lovecake]

Thank you so much Lovecake for sharing your experience with me! I’m really glad that you have an understanding GP!

[Lovecake in reply to Hanna_josef]

She is very nice.Although I must add that on my (patient access) notes one entry says “patient herself medicating”, maybe that way there’s no recourse on the GP? I don’t mind as long as they don’t try and interfere too much when I know they are incorrect, plus I have this group to fall back on.

[connyankee]

I'd take your FT3 result in a heartbeat (no pun intended!) I cannot get mine to rise, even using dosing of T4- 100mcgs, 3X's/week. Good luck.

[paradime in reply to connyankee]

You write "even using dosing of T4- 100mcgs, 3X's/week." as if that is high. It equates to 43mcg per day, which is very low unless you have a body mass of 23kg which I think is unlikely.

50mcg is the recommended STARTING dose for hypothyroid people under 60 years of age with the expectation that the dose will be increased in 25mcg pd increments at 6-8 week intervals with blood tests.

Rule of thumb: expected maintenance dose 1.6 mcg/kg of body mass each day.