'Suppressed' TSH: I'm hoping that the kind and... - Thyroid UK

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'Suppressed' TSH

swmartin profile image
46 Replies

I'm hoping that the kind and knowledgeable people on this forum can help...

Every morning as I begin to stir, I feel a 'vibration' in my chest - this will wake me up. When I take my thyroid medication, the 'vibration' subsides after about 20 minutes. I did query this on this forum and was told that this is indicative of not having enough thyroid.

Generally speaking, my life is sedentary as I simply have no energy to do much except trying to keep body and soul together. However, there are days when I am forced to be more active and I feel utterly horrible the following morning. The 'vibration' is extreme and I feel very ill. This despite taking extra thyroid the day before.

I requested a referral to the nearest endocrinology centre from my GP because I believe that I need an increase in my T4 thyroid supplementation (levothyroxine). The GP ordered blood tests and then 'consulted' with the endocrinology centre who ordered the GP to reduce my supplementation because my TSH is suppressed and thus I am over supplemented.

I have seen comments on this forum and elsewhere which say that if you are supplemented with T3 (liothyronine) for a length of time, this will suppress the TSH.

Have any studies been done on this? Have any papers been published in journals, etc.? I would appreciated being pointed in the direction of relevant information on this topic.

I have been supplemented with T3 for the past 25 years - with a two year break - 'courtesy' of the NHS that has left me with nightmares and flashbacks. All my blood tests in the last 20 years have shown negligible TSH.

Latest blood test results:

TSH = <0.01 mui/L Range: 0.35 - 4.94miu/L

T4 = 14 pmol/L Range 9.00 - 19.10pmol/L

T3 = 4.9 pmol/L Range: 2.40 - 6.00pmol/L

Help please. I despair of the ignorance, callousness and arrogance of some members of the medical profession.

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swmartin
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SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you taking

How much T3 are you taking

Free T4 (fT4) 14 pmol/L (9 - 19.1) 49.5%

Free T3 (fT3) 4.9 pmol/L (2.4 - 6) 69.4%

You had Ft3 and Ft4 the wrong way around…

Was this test done early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Do you always get same brand levothyroxine at each prescription

Essential to test vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

Please add most recent vitamin results and ranges

Explain to GP that T3 will almost always suppress TSH ….Ft4 is only 50% through range….refuse to reduce dose Levo

your low Ft4 and symptoms suggests you may need dose INCREASE in Levo

swmartin profile image
swmartin in reply to SlowDragon

I'm taking 10 mg T3 (liothyronine) in divided doses and 100 mg of T4 (levothyroxine) in two doses. Sometimes, if I have been physically active per my original post, I will take extra T3.

Yes - done before 9 am with nothing but water. Last dose of both T4 (50mg) and T3 (5 mg) was 18 hours before test.

No - the brands are not the same for each prescription. Local high street chain pharmacies refuse to supply brands of T3 and T4 without sugar coating. With a sugar coating, the tablets are very difficult to break up with any approximate accuracy. I get the tablets from an independent pharmacy who will not guarantee the same brand of tablets for each prescription despite the prescription requesting specific brands. They supplied Tevo Levothyroxine (not sugar coated) for the latest prescription and that caused heart palpitations. I got it swapped out.

You have to get an appointment with the GP to ask for testing even if it is just a telephone appointment. Testing is not considered to be 'clinically urgent' so you don't get the appointment in the 8 am scramble. Previous requests for vitamin testing elicits the response "It was tested 1/2/3/5 years ago and it was fine". I don't have access to the vitamin tests that have been done but was told that everything was 'satisfactory'.

I take a multivitamin and a multimineral with additional B12 that is not cyanocobalamin and additional magnesium for sleep. I take 2000 to 3000 iu of Vit D daily except in summer. I also take Milk Thistle (for liver) and gingko and siberian ginseng (for circulatory health).

I cook from scratch for most things (not marmalade or sausages and the occasional gluten free treat of a pre-prepared meal from M&S), don't drink and don't smoke.

I did explain to the GP that T3 will almost always suppress TSH but she wasn't prepared to accept my word (hence my request for scientific studies or papers on the subject). GP had 'consulted' with endocrinologist and the endocrinologist instructed the GP to reduce my Levothyroxine. I refused and agreed that the T3 could be reduced. The GP said they will test in 3 months. I will 'forget' about that test.

When I spoke to the GP, she made it sound that my T4 and T3 were too high along with the TSH being too low. She told me that the T4 was "FOURTEEN" - in a shocked tone of voice. It took two calls to the surgery to get the actual test results from the admin staff.

Yes - I do think that the Levothyroxine needs to be increased. After months of trying to get an appointment with the GP, blood test results have led to the GP / endocrinologist wanting to decrease Levothyroxine. Hence the despair!

SlowDragon profile image
SlowDragonAdministrator in reply to swmartin

So like thousands of us in U.K. you will need to test privately

Surprising you got Ft3 tested

Definitely essential to test vitamin levels

multivitamins never recommended on here. Most contain iodine not recommended when on replacement thyroid hormones. And never take iron unless tested FULL iron panel and in need

ALWAYS stop any supplements that contain biotin 5-7 days before any tests as biotin can falsely affect test results

When you test privately make sure last dose Levo is 24 hours before test

And last dose T3 8-12 hours before test. If on 10mcg ….perhaps 5mcg waking, 2.5mcg mid afternoon and 2.5mcg at 9pm

Milk thistle I think is NOT recommended…..

helvella may be able to add info as to why not

swmartin profile image
swmartin in reply to SlowDragon

Milk Thistle is the only thing that reduces the pain in my liver (PBC). I have been prescribed Urso for the liver but my gut absolutely refuses to tolerate that. Gastro consultant says that the NHS will not prescribe anything else but Urso. I can't afford to see private doctors, do extensive testing or buy other (more effective) drugs myself.

However, thank you for your input. Most appreciated.

Apologies for mistake of swapping T4 and T3 results. Now corrected.

SlowDragon profile image
SlowDragonAdministrator in reply to swmartin

I get the tablets from an independent pharmacy who will not guarantee the same brand of tablets for each prescription despite the prescription requesting specific brands. They supplied Tevo Levothyroxine (not sugar coated) for the latest prescription and that caused heart palpitations. I got it swapped out.

Suggest you use one of the specialist pharmacies then

If your prescription states brand on it pharmacy is obligated to supply the brand named

thyroiduk.org/get-support/t...

helvella profile image
helvellaAdministratorThyroid UK in reply to swmartin

helvella - Milk Thistle, Silymarin & Silychristin

Some information and cautions regarding the use of Milk Thistle and its derivatives, especially in those with thyroid issues.

helvella.blogspot.com/p/hel...

SlowDragon

Milburn13 profile image
Milburn13

It's common knowledge that T3 suppresses TSH. It's generally just NHS practitioners that don't acknowledge it as they're only focussed on t4. I got a little T3 from the nhs but they still didn't monitor my levels and still focussed on my Tsh which of course lowered. All the private thyroid doctors I've come across say that T3 suppresses TSH. Thyroid UK have a video of Paul Jenkins talking about it, one of the leading thyroid docs in the UK. It's worth having a read Paul Robinson's books or blog.

I hope the vibration sensation goes away and you feel better soon. What are your thyroid and vitamin levels?

Hopefully you'll get lucky with the NHS Endochrinologist, I had two NHS Endochrinologists and they both dismissed my symptoms and said my thyroid was fine even though I was really unwell with it. They were even less helpful than my GP. I recommend seeing a private practitioner.

swmartin profile image
swmartin in reply to Milburn13

Thanks for the reply. I'll check out the video and blog.

Enuffisenuf profile image
Enuffisenuf

I'm pretty sure that I'll be having the 'suppressed TSH' talk at some point this morning with my GP. She listened last time, so it could be ok. Like you I feel that I need more T4. I'm unsure if my vits are optimal, but I do at least have the actual results and not just the opinion of the lab. You are legally entitled to see your records, so maybe it could help if you made a written request for all your test results?

Do you have another GP surgery you could move to?

Sleepman profile image
Sleepman

Sorry you are struggling.

Having to be sedentary does not sound like you are being properly looked after.

Wondering if something else not right?

B12 injections ? I understand B12 levels can be ok on bloods but not in cells or something.

Adrenal issues ... low cortisol?

Taking T3 definitely suppresses/ reduces TSH in my experience.I do private home sampling blood tests at home for about £30 to see TSH, T3 and T4 levels. Since taking T3 ,TSH has gone low.

Having free T3 in blood does not actually mean it is the cells where it needs to be. I think those people take T3 only in higher doses.

Cholesterol being high is a guide/ indirect marker to not enough thyroid hormone in cells.

Not exactly what you asked for re TSH and T3 but useful low TSH info.

healthunlocked.com/thyroidu....

One set of thyroid blood tests does not give full picture.

Doctors legally have to give you written blood test results. Many are now on phone apps. Reception should help you get set up?

I would ask for old blood Thyroid blood test results on writing - so you have the full picture.

Ginseng is quite a powerful supplement. I used for years for periods of time for fatigue issues.

Not all the time though as powerful.

I am only 2 years into autoimmune underactive thyroid and with some T3, I am generally well.

I am so thankful for the dedicated, wise, kind and rigorous Admin team on this forum.

Hashihouseman profile image
Hashihouseman

without knowing your exact medical condition and history to understand why you would be on the T3 regimen you describe, I would be tempted to say that is that a typo!? I mean, the t3 and t4 blood levels you report are the exact opposite way around what would be unequivocally normal! Blood levels of thyroid metabolites in Euthyroid condition (no pathology/optimally treated) should be about 14fT4 and 4.6 fT3. If this isnt a typo your body may be suffering chronic thyroid dysregulation and therefore be unable to deliver the cellar functions it needs for normal life even with all that fT3! Is there a profound medical reason why you are not replacing thyroid with say 80mcg Levothyroxine and 8mcg Liothyronine which is a more physiologically correct ratio? The body needs adequate levels of T4 for intra-cellular conversion and perhaps even more importantly for signalling; T4 is a vital component of the feedback/feedforward loops to allow proper thyroid regulation, as is normal TSH. Just getting a massive amount of T3 and suppressing TSH and depriving the body of fT4 will not allow intracellular conversion or all other thyroid receptors to function properly as part of a very sensitive dynamic equilibrium. There is plenty of scientific evidence for this including the huge population studies such as reported in Anderson et al 2019 mainly regarding the dangers of even moderately excessive fT4 but also showing just how common normal healthy thyroid levels are around 14/4.6 fT4/fT3

swmartin profile image
swmartin in reply to Hashihouseman

Apologies - I accidently swapped T4 and T3 results. Now corrected.

Hashihouseman profile image
Hashihouseman in reply to swmartin

okay well that's even more interesting because your free T3 is not that high and your T4 is just about optimal you could try increasing T4 very slightly and reducing T3 very slightly because the slightest bit out of balance can play havoc. My free T3 and free T4 levels are almost exactly what you say yours are and my TSH is perfect around 1.0! but we are all different... the trick is to know that our unique differences mean that only tiny differences in actual levels are significant and it's tricky to find exactly where our optimal level is and then leave it for a few months for TSH to stabilise.

Easylover profile image
Easylover in reply to Hashihouseman

I dont think asking someone to unsuppress TSH or "sabalize" it is heading them in the right direction. T3 does suppress TSH for good. It doesn't normally go back even after reducing T3 intake. Our bodies are not made to go in sinc with a quote "normal" body's thyroid hormone levels. If you're able to do that, then you are blessed. The rest of us struggle!

Hashihouseman profile image
Hashihouseman in reply to Easylover

But the best evidence we have os from the tens or hundreds of thousands of euthyroid people who have thyroid levels that are unequivocally commonly normal in other words most of them fit into those levels; yes some of us are outside those levels but they're a starting point to aim at what is what is most commonly normal. Suppressing TSH is definitely abnormal but maybe essential for some people particularly if there is a carcinogenic thyroid risk or some other medical condition that has been assessed as a requiring suppressed TSH. TSH around 1.0 is unequivocally normal and has various functions even on replacement therapy. I wasn't trying to tell anybody to do anything in particular but just describing where data comes from and how it can help in something to aim at if we are suffering symptoms and not sure what thyroid levels are a good place to begin.

Easylover profile image
Easylover in reply to Hashihouseman

I get it but I don't agree. I don't think a person who has thyroid disease can fit into a normal TSH once they begin T3 therapy. IT is a place to begin. However, a suppressed TSH doesn't bounce back. A person can feel better with T3 and T4 levels in their proper place and have a suppressed TSH. I didn't mean to come off wrong. I was stating my opinion as uou were. Doctors insisting on TSH reading being between the lines has caused MANY many hypothyroid patients to suffer further by ignoring their SYMPTOMS. THANK YOU FOR ANSWERING BACK!

Hashihouseman profile image
Hashihouseman in reply to Easylover

I dont know whether you are annoyed with me ? Reading all all those capitalised words:) Hope not. Anyway to your point about normalising TSH on T3 therapy…. I am on T3 and T4 and my TSH always reflects the balance of the two, the feedback loops assimilate and reflect all three! My TSH has been clearly and evidentially suppressed by T4 or by T3 or by both and I have monthly blood test and symptom data going back years giving a picture of these relationships to the extent that I can predict one from the other. My TSH always ‘bounces back’ from a suppressed state (see below) given enough time on a revised dose of T3 or T4. Also to consider; clinically suppressed TSH is taken by endocrinologists as 0.0 something not 0.5 something. That said, I think the preponderance of evidence that TSH much below 1.0 is likely abnormal should make anything less than 0.5 the working definition of suppressed! I know that for me at least, as a thyroid treated individual and for the majority of euthyroid individuals TSH is optimal between 1&2, in fact that along with normal fT3 & 4 is the definition of Euthyroid. Normal can be established from large scale population studies such as those referenced by

pubmed.ncbi.nlm.nih.gov/315...

(The Anderson Papers)

Easylover profile image
Easylover in reply to Hashihouseman

Thank you! I wasn't annoyed sori it seemed that was. On a small phone too much work to correct. Hope all is well. Thank you very much for your input. I appreciate it sincerely, easy

tattybogle profile image
tattybogle in reply to Easylover

very low TSH can bounce back Easylover , well mine did anyway.

I was 0.04 ish for 14yrs on levo only (with fT4 anywhere between 60% and 200%)

In recent years on slightly lower dose of levo my TSH has been 1.5 -3 ish , and (before i added some T3) it really surprised me by rising to 5.3 . ( fT4 still 91% , but fT3 fallen dramatically to 13% ~which i assume is the reason for the TSH increase)

i added 9mcg T3 and reduced Levo by 12.5mcg ...... after 2 months on this dose TSH is 2.9 ( fT4 is 56% , fT3 is 57% )

to be fair my dose does feel a little low , so have now increased T3 dose by 3mcg , and put levo dose back up by 12.5mcg , so i am definitely expecting my TSH to end up lower than it is currently , but it justv goes to show that the often stated idea that 'taking any T3 inevitably supresses TSH' does not seem to apply across the board.

its too early to say whether my TSH will end up very low again once i have been on T3 for longer, and have found a dose i'm happy with ..... but there are at least a couple of other people on here who have TSH that is in range while taking doses of T3 that have resolved symptoms eg McPammy is well and has TSH that is just in range.

So we may be unusual , but clearly for some of us, taking T3 does not mean our TSH is inevitably supressed. Thyroidology is so individual , (and some of us are just weird :) lol) .

Easylover profile image
Easylover in reply to tattybogle

Lol 😂 good job!

Easylover profile image
Easylover in reply to Hashihouseman

Maybe, you could coach me on how to go from NDT to what you're doing. What are your doses. When do you take them. How were you on Armour. When did you take it. Did you multi dose? Thanks.

Hashihouseman profile image
Hashihouseman in reply to Easylover

well that journey was long tortuous and painful….. with a horrible and potentially dangerous attempt to do it all with levothyroxine only for some years - that resulted in chronic bradycardia, atrial fibrillation and ectopic heart rhythms. So dont go there! However the cardiology issues did lead me to the Anderson paper which demonstrated the risks of even upper in-range fT4 for atrial fibrillation. In that paper there was a mass of data and links to other masses of data on what could genuinely and practically be described as NORMAL THYROID LEVELS:) given that no endocrinologist or other doctor I had ever seen skew or even discussed what normal levels were or what I should be aiming for on replacement therapy this was an epiphany. Especially as all the medics were sceptical if not totally obstructive about the need for T3 & T4 or such judicious and fine titrations. So I simply decided to aim for NORMAL ! Which for most of us in middle life is about 14-15 fT4 4.4-4.8 fT3 and 1.0 - 2.0 TSH (although that can swing a bit more due to circadian rhythms and timing of blood test samples). The other end of the equation then was how much T3&4 to take to get normal levels????? I had long been suspicious of the rational (doctrinaire and crude) for taking all the levothyroxine in one dose because a) it made me feel ill all the time and b) the healthy thyroid does not dispense like a pharmacy, it drip feeds in pulses and there is long established data on how much T4 (&T3) a healthy thyroid gland produces, ignoring non secreted thyroid dynamics such as T4-T3 and reverseT3 conversion and all the cellular feedback and feed forward loops etc. In fact the only good thing about being on T4 only was that I learnt a lot about split dosing and that to take such massive doses of T4 I had to split it into four or even five /24 hours. From that I deduced that there were less adverse effects and in particular less reduction in conversion efficiency from T4 to T3 in end use and storage compartments. This makes complete sense to me, if not the bloody endocrinologists ha ha; because it is widely reported in the scientific lecture that T4-T3 conversion is mediated by, among other things, the amount of T4!… with conversion rates dropping off as T4 increases so it’s stands to reason that if we are taking too much thyroxine to push total T3 plasma levels and suppress TSH we may well be harming the very process (conversion efficiency) we want to try and encourage! and that was certainly my experience symptomatically. This also goes someway to explain why the heart muscle is so badly affected by high levels of thyroxine, especially when you consider that the myocardium has a high level of expression of thyroid conversion receptors. So, to cut to the chase, I simply tried to emulate what the normal healthy functioning thyroid gland would secrete which I figured out was roughly in the range of 80 to 100 µg of T4 and between 7 and 10 µg of T3 - as it turned out 100 µg of T4 kept my free T4 levels way too high still in the upper range where I did not want them so my starting dose of 7.5 µg of T3 +100 µg of T4 suppressed TSH and didn’t produce much more than 4.4 f T3. I think TSH has to be unsurpassed to facilitate conversion efficiency as well as glandular secretion (the latter we dont do anymore). After that it was a process of trial and error taking blood test every month, dropping thyroxine down to 70 µg and gradually increasing liothyronine up to 8.5 µg. 70 µg of thyroxine felt uncomfortable -I too low! so after a few more months of buggering about it seemed that 80 µg of thyroxine and 8.5 µg or thereabouts, depending on daily changes in demand, gave true normal thyroid blood levels! And just to confound the endocrinologist who said the exact blood levels were not that important and that I couldn’t possibly feel any benefit from such small adjustments my symptoms in some shape or form were always present until I achieved true norma blood levelsl! So bollocks to the endocrinologists! In summary then…. I am taking a split dose of thyroxine and liothyronine three times every 24 hours and I do that really to minimise the amount of levothyroxine in one dose. I could probably get away with only two doses of liothyronine but I wake up in the night if I don’t take a small 2 am dose of both and then the bulk of the rest of it split into two at 6/7 am and 1/2pm (midday) or thereabouts (depending when exactly I wake up enough to take the pills! I do the monthly blood tests on the last day of every month at 11 pm, always! It takes out any confounding effects of circadian rhythm or proximity to a dose of thyroid hormone. And when the endocrinologist is interrogating me like the gestapo over my ‘ridiculous amount of fuss and bother’ they eventually have to shut up because their arguments about accuracy and precision are met with solid rational consistency with what I’m doing. Anyway, that’s where I am so far and if I can keep ‘normal’ levels like this for another 10 years and feel truly EUthyroid then I will really know that I was right and they were all wrong, ha ha!

Easylover profile image
Easylover in reply to Hashihouseman

That was nice. Thank you for that explanation. I would need help getting there. Are you more well doing what you're doing than when on NDT??? Is it like a night n day difference???

Hashihouseman profile image
Hashihouseman in reply to Easylover

I have thyroid disease. I am on T3 therapy. I have absolutely normal TSH. I achieve this by monthly blood tests monitoring using a fixed dose of T4 and a variable dose of T3 according to conditions. When I say variable I mean changes of no more than 10% of the dose either way. T3 is super powerful. If I get it wrong and go by symptoms alone I can easily suppress TSH with too much T3, reducing T3 quickly normalises TSH. The sweet spot for T3 is closely linked to an appropriate and stable background dose of T4. It takes a long time to get that balance in sight and then fine tune it. The results can be perfect. Trying to normalise TSH with changes to T4 is a fools mission, T4 response times are far too slow. But core basic levels of T4 are essential to allow small variations in T3 dose to stabilise a normal TSH and fT4

Easylover profile image
Easylover in reply to Hashihouseman

Excellent!

Easylover profile image
Easylover in reply to Hashihouseman

Your replies make me want to try T3 and T4. I am presently on NDT which hasn't been going too good because my last bottle was destroyed by the Heat in transit. Thank you for all your time n knowledge. Peace be with you!

Hashihouseman profile image
Hashihouseman in reply to Easylover

Yes I started my saga of this on NDT but the cost of getting it from the states and the degradation of the product overtime and the sheer cost of it made me move to an NHS supply of the synthetic. The advantage of the synthetic of courses it didn’t cost me anything and you can get a better balance of T3 and T4 compared to the NDT which was insufficient in T4.

Easylover profile image
Easylover in reply to Hashihouseman

Also, a lot of times the doctors don't even check the patients T3 levels! It's unfathomable that the very hormone that makes us well isn't routinely checked.

Hashihouseman profile image
Hashihouseman in reply to Easylover

This is medical negligence. T4 t3 ratio is vital to diagnosis and treatment. But we have to do that privately. My doctors and even the endocrinologists now go by my private data they dont even bother doing the NHS blood tests for me any more because they know my data is better and sufficient, even to prescribe T3.

Easylover profile image
Easylover in reply to Hashihouseman

Nice!

Easylover profile image
Easylover in reply to Hashihouseman

Hi again, would you please put a link here for me to find the 2019 study. I did a web search and couldn't find it. Thank you!

Easylover profile image
Easylover in reply to Easylover

A lot of these studies are done with only T4 which is not conclusive to what would happen to the body if taking T3 or NDT. The big. Conglomerate Pharmaceutical companies pay for these studies to be done so as to continue to control the market making Billions each year!

McPammy profile image
McPammy

I think I’m an out layer here as my TSH is not suppressed and I take T3 5mcg twice a day. I also take liquid levothyroxine 68mcg a day which I split 34 midday and 34 5pm. What I have done to keep my TSH just about in range is keep my t4 low but in range. I get my bloods done 2hrs ‘after’ taking my meds also which is contrary to what TUK suggest. I like to know my levels are not going over. Usually my t3 is about 5.5 (3.7-6.0) so it’s high but not too high and my T4 is usually in the middle of the range. So I know neither are not too high. More importantly though I feel extremely well and energised. In the past if my levels get too high I feel very heavy and weak. My heart rate drops significantly too. When back in range I feel energised again. I’m symptom free now and have been for over 5 years monitoring my bloods. I’m lucky I feel as my gp tests loads of bloods every 3 months without fail. TSH, T4, T3, cortisol, lipids, HBA1C, full blood count, b12, ferritin, folate and vit D. They only supplements I take are b12 injections 3 monthly and Ferris fumerate as they were low. Vitamin D and folate naturally good, my D is never below 100 even in the winter! I don’t know why it’s good??

This is my success story and hope you can pick something out of it to help you get more success. Maybe liquid levothyroxine or even a 6 month trial may help you. You don’t have to avoid food and you can split your dose effectively to suit you.

Hashihouseman profile image
Hashihouseman in reply to McPammy

My story is similar, keeping T4 to less than mid range seems key and moderate to high fT3 by moderate T3 dosing, too much T3 (or T4) and there is negative feedback so its simply disruptive and can cause bradycardia and atrial fibrillation (high but even in range fT4). And yes split doses to suit, not worrying about food and drink too much. Also yes blood tests not too far from last doses (4-6 ish for me) And definitely none of this hold off the normal dose for 24hrs or more before testing, that could affect the validity and disrupt homeostasis and hide overdoses, TSH does fluctuate quickly even within 24hrs cycle, that’s the point of it!

McPammy profile image
McPammy in reply to Hashihouseman

It’s great to hear someone is similar to myself. I agree with what you’re saying. I’m told by many that t3 will always suppress TSH but I disagree, it’s about how you manage your thyroxine t4 and t3 doses. I think using the energy that t3 gives you can be important to manage any symptoms also. I’ve found I must walk briskly or keep busy to ensure I don’t build up t3 and it goes too high but that can take about a week to build up if you’ve not been busy. I notice it if I’ve been unwell with covid or hurt myself and therefore not doing as much as usual.

Hashihouseman profile image
Hashihouseman in reply to McPammy

I have the same experience regarding physical activity etc. and ambient temperature and time of year!! All very tricky ha ha

McPammy profile image
McPammy in reply to Hashihouseman

Definitely time of year also, think may be related to shorter daylight and not doing enough activity. Very tricky yes. What I do is not take a levo dose and next thing I’m ok again. I never alter the t3 doses though.

Hashihouseman profile image
Hashihouseman in reply to McPammy

Well that's really interesting because whenever I try to do it by altering the T4 everything got well and truly out of whack and I was discussing it with an endocrinologist and he said "well I don't know why you're trying to manipulate it or fine tune it using levothyroxine that has far too much momentum Try manipulating the T3" and so I did and haven't looked back since but as I say I make tiny tiny changes to the T3 which makes sense because it is so powerful and it has an effect within a matter of hours and it is gone from your system within 12 hours if you take a bit too much. Changing thyroxine on the other hand destabilises everything if you make any kind of significant change and wait for a result . there is always a tendency to make too big change with thyroxine because you can't feel anything for weeks. I guess intuitively if you can make a change to T4 by educated gas and it is the smallest change you can make you might hit the spot again rather than overcook it. and as for being in T4 only oh my God what a nightmare!

Milburn13 profile image
Milburn13

So the NHS will only get our vitamins to normal, but we have to get our vitamins levels to optimal. So the NHS will say your levels are fine when they're actually on the low side. So I recommend asking GP reception again for a print out of your results so you know the figures and ranges, so you can work towards optimal.

I was prescribed milk thistle by a herbalist last year and my thyroid symptoms got worse and I became really ill. I recommend trying to find something else to help your liver pain and to stop the milk thistle asap and see what happens, and hopefully the vibration sensation will stop. Milk thistle shouldn't be taken with thyroid medication.

There are some private practitioners on the thyroid UK list who are low cost. My GP says she'll prescribe me what the private doctor recommends as she just isn't trained to prescribe and monitor t3, so maybe you'll just need one or 2 private appts to help you get to the right dose if you can afford this. It's just awful that the NHS don't help people who don't get well when their T4 and tsh levels are in the normal range with Levothyroxine. I hope you feel better soon.

Easylover profile image
Easylover in reply to Milburn13

Nice reply!

arTistapple profile image
arTistapple

What age are you? I ask because as you get older the heart (especially for many hypos) needs a little bit more help from thyroid hormone. What you are describing is that flapping motion in the heart as one ‘pump’ closes down and the other one opens. It’s not a problem when slight. Most folks don’t even notice it. However we hypos tend to be very observant - especially around anything that makes us feel unwell. Plus our heart rate tends to be less than ‘normal’ and this can often be even lower overnight. In the morning we need time to get up to speed. I hesitate to say it’s normal but it is known in hypo.

That aside, milk thistle inhibits thyroid hormone uptake. The Canadian Patients website explains this. Milk thistle is sometimes deliberately used to reduce T3 levels if too much has been taken. So find a time in the day as far as possible away from your thyroid meds. Taking this really does inhibit uptake, so even if your blood shows your levels are ok, it’s not ok in the cells. Your heart cells become be more ‘exhausted’ because your dose of thyroid hormone is not able to be fully utilised. In my experience the heart really needs T3. Heart and brain are its major target. Any reduction is not advised and any increases should be done in small increments.

My heart problems started very early in life and so far I am still here in my 70s. I think if I had been timely treated I would not still be having problems!

At some point you may have to consider an increase (probably T3) but your T4 also looks in the low side. Sort out your routine first, moving the milk thistle as far as possible in the day from your thyroid meds.

Easylover profile image
Easylover in reply to arTistapple

Yes, well said!

tattybogle profile image
tattybogle

hi swmartin , have a look through these posts where i keep most of my references, hopefully you'll find something you can use :

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

healthunlocked.com/thyroidu... thyroid-disease-effects-on-heart-and-cardiovascular-system.

Do bear in mind that if your fT3 is at this level 18hrs post dose , it will be much closer to top of range for much of each day.

connyankee profile image
connyankee

I think that we can all agree with your last sentence!

I live in the USA and I'm sorry for all of your socialized medicine bureaucracies where you cannot get the brand Armour, which I am taking and I'm having good luck with. I, too, lead a sedentary life and I'm wondering if I've hit a wall because I'm now 66. It is also blazingly hot in Tennessee this summer and I cannot stand the heat and mosquitoes that come with our summers.

I have so many unused Armour pills due to changes in dosage which I need to dutifully dispose of in locked mailboxes at local pharmacies so they do not get flushed down toilets or get added to the landfills. I wish that I could send them across the pond, but this is illegal. (This is some of the waste that is caused by a rich country with private medical insurance.)

I believe that you will get good information from this forum. If you can access your local library, Paul Robinson has written a great deal about the Thyroid. He has many books on the subject which will help you understand this butterfly shaped gland a bit better because it is all so confusing.

Best of luck.

LindaC profile image
LindaC

This may amuse some, hopefully not scare too many! 😍

My hypothyroid tale began in 2003, then 2007 but - even though #s in B/W were before GP's [i.e. 0.14, then 0.11 respectively] just within range] - I had several hypothyroid signs and symptoms. By the time I was seen by Endocrinology 2008, 2009 my hospital numbers were said to be within range, yet I felt way worse. If only I could post my gallery of pics; they're on Word, you'd see how dreadful I became.

Feb 2010 Dr Skinner, after [quite properly] starting me off on Levo, got me onto Armour Thyroid. May 2010 Dr Peatfield said that I'd never get well without T3 alone, for life, and guess what!?

Long story short, I did well on Armour Thyroid, even just that small amount of T3 within it. Ordered some T3 but didn't much use it, other than a small amount. Whack-job endo decided in July 2015, that I'd never been hypothyroid [he was totally anti Drs S & P] and had my Armour removed, yet the surgery had prescribed it from 2010 until 2016, imported via NHS coffers. (I had only gone to him because I developed FREEZING COLD shins in Jan 2015.) I was then thrown entirely into the arms of Liothyronine.

I have even been undiagnosed as hypothyroid - due to this silly little endo - who has since produced a paper stating that some patients may even need to be over range to be well... yes, they even prescribe it now!! Ranges meant little to my particular individual numbers and this is how my current figures look:

Serum TSH level < 0.05 miu/L [0.3 - 4.5] = < is less than.

Serum free T4 = less than 1.3 pmol/L Range (9.5 to 21.5) Obviously surpressed.

Serum Free T3 11.4 pmol/L Range [3.1 - 6.8]

So, there you go and, as for endo's whining about T3 and bones... My DXA bone scan - quite recently around the time to have it reassessed - my GP was told:

"This lady's BMD was 12% above average for age at the spine and 7% above average for age at the total femur. Her estimated 10-year fracture risk (8.9%, including 1.5% risk of hip fracture) was well below the threshold for treatment."

I continue to use T3 @ 78.12.5 mcg daily, having raised it gradually over years - particularly having reduced it 'to show willing to try' for the above endo, which set me back. I had to put it back up when, in the first summer heat wave a few years back, I was sleeping with an electric over-blanket on, piled up with duvets and fully clothed in bed. Should I need to, I will increase again. Individual Human Differences vary enormously: obviously, busy doctors can't consider all of our needs, especially those of us who are outliers to 'their system', BUT sneering at us and worse... their arrogance [aka ignorance] knows no bounds.

Guess some of us need to sort it out for ourselves... to be well. I IGNORE RANGES!

Taniboo profile image
Taniboo

I had an issue with suppressed TSH when I was dealing with nephrotic syndrome from minimal change disease. The endocrinologist kept looking at my freeT3 T4 since I was taking all of my thyroid medicines like I was supposed to. She thought that free T3 and free T4 could be used as indicators of my thyroid health. Thinking that because the free T3 and free T4 showed up that I'm obviously getting thyroid medicine. My TSH levels were as high as 142. This could be because I've had my thyroid removed in 2017. Needless to say I lost all my hair and I gained 60 pounds since this was 9 months.

I was experiencing body vibration all over and no one could explain to me why. Once my kidney disease was under control and in remission. My body was able to now use the level thyroxine and my levels are back in the normal range and I'm growing back my hair and trying to lose all this weight.

The doctors were not sure, but hypothesized that since my kidneys was kicking out all of my protein. The thyroid hormone is bound to the protein, and therefore I had no thyroid hormone, regardless of the fact that my free T3 and free T4 levels were normal.

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